LIVING WITH FAITH

Another adventure brought to you by Girl Scouts....

2011-04-22T21:16:00.004-04:00

This week is spring break around here so most of the kids are out of school. One of the moms of a girl in our scout troop arranged for the girls to go to visit the nursing home where she works, today. Field trip for us, since we are wrapping our last week of school. So we piled up six girls from our troop and headed out early this morning. We had planned to work in their garden, planting flowers but the weather had turned cold and rainy so that was nixed. But one of the activity workers went to the store and got plastic cups, dirt and flower seeds that the residents could plant and put on the window sills. Faith came in holding hands with her partner in crime and best buddy and stole the show. She hugged the neck of every person who crossed her path and was instantly drawn to a sixty year old man named Alvin, who had cerebral palsy! She charmed her way through all the little old ladies and even suckered one out of a pocketful of peppermints! Interestingly enough, the mints were an old brand of mints that my grandmother was notorious for carrying in her own pocket, and I had been looking for about eight years but had been unable to get my hands on! We called them "I love you" mints because they had it inscribed on the wrapper. I was so excited! Faith got to take her turn helping several women fill their little cups with dirt and seeds. She really enjoyed digging in the dirt! Then she sat down with the girls, on the floor and listened to one lady tell about her days as a girl scout in the fourties. Of course, Faith had to show off her sign language skills to the crowd and impress them all. One lady gave her a little paper crown to wear and about three ladies in wheelchairs offered to hold her in their laps! When we got ready to leave we found out that one lady was celebrating her 100th birthday, today, so we had to go sing her happy birthday! On, our way out of town we stopped at McD's for some lunch for the kids. They all decided that they needed ice cream even though it was like 50 degrees outside! One of the moms offered to buy Faith an ice cream but I turned her down because I knew it would be a big mess, but our troop leader got her one anyway....in a cone! I shouldn't have denied her because it was the funniest thing ever! She got into that cone and had the time of her life! She stuck her whole face right into the ice cream! It was in her nose and on her cheeks and chin. She kept sticking her front teeth into it and making that terrible face that you make with an ice cream headache but then she would laugh and do it again. We must have used a tree worth of napkins and wipes. She had so much fun and even though it was a mess to clean up, I had a blast watching her and so did everyone else.

Dogs.....

2011-04-19T22:15:00.004-04:00

We are finally wrapping up our first year of homeschooling this month, down to our last two weeks. One of my goals for Faith was for her to be able to recognize the letters A,B and C by the end of the year. We are now working well into letter D, right now! So check that off as a goal surpassed! Our current theme is Dogs. When I start a new letter I always try to begin with a familiar object and of course, Faith loves dogs. So this morning she wakes up and wants me to let our birdbrained dog, Gandy, up on the bed...so I oblige. She starts pointing to different parts of his body like his foot, ear, head, back and I say them out loud....she knows all these parts already. Then she starts pointing to those same parts on her own body....dog eye...Faith's eye.....dog hair...Faith's hair! She was showing me that she made that connection all by herself! I did not instigate it or even try to get her to work on dog body parts! We were just lying on the bed! I am amazed every day at the ways she manages to get her point across! It gives me so much hope and encouragement that I am doing the right thing. That WE are doing the right thing. Father, thank you for each little milestone that you give Faith, I pray that we will use it to glorify you!

Progress is progress....

2011-04-15T20:57:00.004-04:00

For years I have heard therapists, parents and professionals declare the rapid development of children with special needs once they start walking. I heard it but I was less than convinced since I had never seen it with my own two eyes. But over the last few months....yes can you believe it's been almost two months since she took off?....I have witnessed remarkable progress! Faith is changing right before my own eyes, almost overnight! She is trying to talk more, feeding herself (albeit minute amounts), picking up things right and left in the education dept like colors,numbers and letters. Everyday I am astonished at the new things she has discovered! Today we worked on self feeding with some really thick grits (yes friends...we are southern girls....although kinda late in life!) she was scooping that stuff up with the spoon and getting it right to her mouth! Then she discovered that the plate had a ladybug on it that was partially covered up with the grits so she started pushing the food around with her hand to uncover the ladybug! It was soooo cool to see her GET it! Then in the bathtub, today, she was playing with a cup and I saw her trying to rinse her own hair with water! It was crazy! I asked her if she was washing her hair and she said YEAH, just like that! She was even scrubbing her head with her hand! I couldn't believe it! I am so proud of her, I wish there were words enough to describe my joy! I guess there is something to all that developmental milestone stuff they told me about......He he he.

How to be happy when you are fighting a battle alone....

2011-04-11T20:58:00.003-04:00

Loneliness...
Something I struggle with daily, now. There is no one to share all the things that happen in Faith's life that can only be shared between her parents and understood. I can tell people about those things but no one really understands. My soul aches to be able to share all her accomplishments but it just isn't possible anymore. At night, when Faith goes to bed, that's the hardest time. I try to keep busy but it's hard. I keep trying to understand things, but I don't think there is any sense to make out of this mess.
But during the days, when Faith and I are together, that is the time when I am happy. We fill our days with lots of work but a tremendous amount of quality time together and THAT is what gets me through. Sometimes we sit on the swing and blow bubbles or take a trip to the dollar store to push the shopping cart around. Some days we will read the same book ten times and other days we will wander around the petsmart to explore all the animals. Filling our lives with good memories and simple pleasures like a walk down the dirt road is how I have been able to survive. Like today, a two dollar goldfish named Spot and a bowl....seeing her explore this new part of her world...helping to make up his bowl....sitting at the counter and watching the fish swim while we talked about it....that's a good day. Seeing her GET the color Red...as in Clifford, the big red dog, while she was working on coloring her own paper...making that connection....that's a good day for me! That is when I feel filled up and fulfilled...when I can see her developing and grasping concepts that people take for granted and said she never would get. I know that God uses these moments to teach me to be grateful and hopeful and to encourage me in the midst of overwhelming grief.
One of my favorite verses when I was pregnant with Faith keeps me going even now...
"Every good and perfect gift is from Above, coming down from the Father of heavenly lights, who does not change like the shifting shadows." James 1:17
And now also...
"In Him we were also chosen, having been PREDESTINED according to the plan of Him who works out everything in conformity with the purpose of His will...". Ephesians 1:11

Library day...

2011-04-06T21:57:00.003-04:00

Every week we go up to the library at least once. In our town, everything is all in one place. The town hall, police station, water dept and library are all in one little building. The library is one of Faith's favorite places on Earth. When we start heading down the street past the fire dept. she starts laughing and screaming and pointing towards the building! When we get there she makes her grand entrance, calling out to all her friends who work there. Our librarians know it's her before she even rounds the corner and they always are there to greet her with hugs and handshakes. Today, we went in to print out some dog work pages for school. She sat in one of the wing chairs and played with her iPad until she wore out the battery then she was off to investigate. Her usual routine involves sneaking around the front desk to see the librarians and be nosey. Mrs. Diane always has some stickers for her and Mr. Tony is always busy putting away books, a perfect opportunity to play hide and seek by following him up and down the aisles, all three of them! When we get done she has to go over to the town hall side and see all her friends ther, most of whom have kids in Faith's girl scout troop. They come out and hug her and fawn over her and make her feel special. She hugs everyone and loves to pat the mayor's little dog, when he is there. It has become one of my favorite parts of our week too, seeing how people have not only welcomed Faith but drawn her into the community. She is almost a superstar, people who I don't even know by name, all know her and speak to her and say what a miracle she is. Sometimes after someone stops to talk to her, I am left wondering who that was, who knows my daughter so well! It holds a very special place in both our hearts.

Good times are STILL available...

2011-04-03T21:28:00.003-04:00

Today was a beautiful day...warm, sunny with a little breeze. We went to church at the new church...Blue Grass Sunday..yes! After church, I decided to spoil myself with a treat that I never had...a manicure and pedicure! I got a sassy coral color but I have come to the conclusion that....believe it or not....I have a very hard time relaxing! Surely not! When we got back home Faith and I went out in the yard and laid in the hammock for like a whole hour! Just doing nothing! I took my phone and sunglasses and we just laid there and Faith played with my glasses and pretended to call Grandma on the phone. I looked up at the beautiful trees and listened to the wind...trying to keep my head above the sadness and loneliness. Then my dad came over for a while...we sat outside and told stories about when I was a kid or he was a kid or funny stories about my grandmother. I started laughing about this funny story involving me and my grandmother and could not stop! It felt so good to laugh and have some good memories for a change. Faith sat between us in the swing and listened and would laugh like she knew exactly what we were talking about..sometimes slapping her knees like it was the funniest thing ever! Then we took her walking around the yard and played a game of find grandpa and tickle him. She was trying so hard to run and catch him, chasing him around the van. It was so cute! It felt good for us to be happy......at least for a little while.

Perspectives....

2011-03-28T21:42:00.003-04:00

Sometimes life can seem so cruel. Things happen and we can't change, control or fix them. I personally REALLY struggle with this! I am and always have been a take charge, fix it all kinda girl. A natural first born, type A personality. So this reality has been hard to swallow. God has really brought me to my knees during the last 10 months. I have had to learn to accept things I cannot change...and that feels SO wrong. But HE has also given me encouragement through fellow Christians, strangers and of course....my daughter! Just in case no one had heard....she is walking! SHE is walking, through GOD'S grace. But since she started walking, she is developing at an amazing rate! She is processing things quicker and absorbing things like crazy. Tonight, for example, we were sitting together looking at the newspaper and came across a split picture of a girl with curly hair on one side and straight hair on the other. I was pointing out the differences to Faith, curly hair like hers and straight hair like mine. Really my point was to show her the same girl had two different hairstyles. But she picked right up and pointed to my hair then to the picture of the girl with straight hair, then to her hair and then the picture of the curly haired girl! I almost fell off my chair! I couldn't believe that she connected it....so quickly...without me drilling her!
I choose to believe that God gives us signs if we chose to open our hearts to HIM.
Today, I saw God showing me another piece of the puzzle that is Faith. To remind me that His hands are still on me and on Faith. She is unfolding like a rare flower, more and more each day and I see a testimony emerging that will be like no other. Every time I see her GET something that I didn't think she would get....I am reminded of Gods perspective FOR me and Faith. That HE wants to refine us for HIS glory and as a witness to HIS greatness. I need to remember this even on days like today when it feels like the whole world is against me and I just might drown.

Grandpa and Faith...

2011-03-22T22:48:00.004-04:00

One of the good things that have happened to us, even in this tradgedy, is a renewed relationship with my dad. For the last 20 years, my dad and I have had a somewhat rocky relationship. Part of that time, we were not in much contact. Then, this aweful thing happened and one day, my dad was on my doorstep.

Ever since, we talk every day and he has been there in ways that he never was in my life, growing up. A big point of contention for me, was that he was always standoff-ish with Faith. I never knew why, but it always irratated me and I held it against him for a long time. But in the last 8 months, I have seen my dad get wrapped around Faith's little finger. She gets so excited when we head over to Grandpa's house and when she gets to his house, she rushes over to his recliner and begs him to put her in it, with a pillow and a blankie and rock her. It is SO stinkin' cute! He has learned a lot about her conditions and helps me out whenever he goes with us.

Evertime she gets out of the car, Faith reaches for Grandpa's hand, it is so sweet. So we took a trip out to Charles town Landing and Grandpa took Faith down into the ship. It was so nice because I have a hard time climbing stairs, especially steep ones and I could never have gotten her down there. Now that Faith is walking, her world is opening up in ways she has never experienced and getting her up close and hands on is wonderful!

It surely warms my heart to see Faith have a relationship with my dad and to see his heart soften to her. He even joked the other day that Faith was a babe magnet!

Take the Shackles off MY feet...

2011-03-21T22:14:00.005-04:00

I know I have posted about the song by Mary Mary called "Shackles" and how I always think of Faith when I hear that song. When they sing...."Take the shackles off my feet so I can dance, I just want to praise YOU"...well, it REALLY has meaning now, if it didn't before! I caught this song on my computer and Faith was just dancing her head off! Like she knows what it means and she is gonna dance for GOD! It also reminds me that God can take MY shackles off! Every day, I am inspired by Faith...
(you'll have to pause my music at the bottom of the page.)
.

Walking requires Faith...

2011-03-21T21:22:00.003-04:00

I finally got a short video of Faith walking while I didn't have to hold onto her or keep her from falling. This is our beloved PT, Erin, who will be leaving us in the next week. Very sad to see her go, but we are close outside of therapy, so it will be ok. Forgive the sideways view, I couldn't get it turned.Faith is making so much progress, so quickly. In just the last week she has had dramatic improvements in her balance. Her PT was shocked to see how much better she had gotten since last Monday. And just look at her good posture!

Tonight, we sit in Charleston, down for an epilepsy appointment. I am actually VERY excited to come to this appointment. I can't wait to see her doctor's face when she comes walking into his office! He will be soooo surprised! I have several other things to discuss with him as far as her medicine regimen goes. In the next few weeks, Faith will be one year seizure free, a HUGE deal to say the least. There have been discussions on trying to wean her off her Tegretol, if the Keppra worked well, and clearly it has. I think the combination seems to work well, but Tegretol does affect the liver and if we could get good control and off the Tegretol, that sure would be nice.

Hope you all enjoy seeing my miracle walking, FINALLY!

More "crazy"happenings....

2011-03-15T21:20:00.004-04:00

I tell you now.... One day I am going to write a book about all the miracles and wonders God has let me see and be a part of in my life.
I know I tend to wax poetically a LOT about amazing things that have happened to me and Faith but everywhere we go crazy things happen.
Today started out bad for me, I was depressed and lonely and basically feeling miserable. I cried my way to therapy, all the way there. I decided when I got there that I needed to do something to pull myself out of the quagmire, and my hair REALLY needed a cut. So I decided to try to find a place to get a haircut. Unfortunately, the girl who last cut my hair was not working and my prospects weren't looking too good. Finally, I crossed town and found a little salon that took walk-ins. I stuck my head in the door and asked if they had time for me and a young lady came out and said she sure did, so I went out and got Faith. I was praying for someone who would be able to look at my hair and see something that she could do with it, as I am VERY plain Jane and never know what to do with my hair. I said I needed a new style to go with my new figure and was hoping for something fun and cute. Well, she starts cutting and says she has some good ideas for it. I just prayed she was good and let her have at it. We talked a lot and of course the topic naturally fell to Faith. I told her a little about her and that she just started walking. Turns out this girl had been home schooled herself, and her father was a preacher, too! Eventually, I told her a little about what we had been going through. Well, this girl was just snipping away and listening to me and turns out she was a Christian, too. So she decided that she was going to curl my hair....and before you know it....she had given me this fantastic, super cute, flirty haircut with swirly, wavy ringlets! I was so surprised! She says that she wanted to do something special for me! So I get ready to leave and this girl writes her name and phone number down and tells me that I should call her and if I wanted to come to town and have someone just wash and style my hair she would love to do it for me, whenever! And that she was giving me my haircut as a gift to me! She said that our story had been an inspiration to her and encouraged her in her faith! I cried...of course...and insisted on paying her but she refused and hugged me and told me she loved me and hugged Faith and told me to keep in touch with her!

A perfect stranger, at the perfect time...when I needed it the most...GOD put this girl in my life!

I feel like a new woman....like I need to go put on a fancy dress or something! I NEVER had a fancy haircut before......

Thank you, Father, for Racheal at Salon 81!

Spring is here...finally

2011-03-10T10:37:00.002-05:00

Every year, I take Faith out the the botanical gardens and make her pictures in the daffodils...

We are a few days late but the flowers are still pretty for the most part. This year I can tell such a difference in her, a more mature girl. She looks so grown up!

It's bittersweet because this is where I had my bridal portraits made, and it was a tradition to take her out on the week of our anniversary. So, I had a hard time with it but I was determined to make it a day for us to enjoy.

Proof Positive...

2011-03-05T22:14:00.005-05:00

I finally got some half decent pictures of Faith walking, today.

I love how proud she is of herself!

She walked the entire museum today, well over an hour and a half!
I know these are blurry but they are good action shots of her actually doing it!

And of course, I have a wonderful story of yet another perfect stranger who was smitten with Faith, tonight.

Eating dinner at a seafood restaurant with my dad and Faith. A family comes in behind us and sits right near us. After a while I hear the mom talking about Faith (nicely) to her husband and two kids. When we get up to leave the woman gets up from her chair and gets my attention and asks how old Faith is. I say seven and she says "she is just beautiful, can I give her a hug?". So in a matter of minutes we are fast friends with a wonderful woman who was clearly a woman of great faith...as she knelt on her knees in the middle of the restaurant and prayed over my daughter for strength and healing and HIS hand on her and protection over her. Faith fell in love with her...smothering her with drooly kisses and hugs as the woman teared up as she heard a little of Faith's story. She was trying to adopt the two kids with her, who came from an abusive home but she clearly had some experience with people with disabilities b/c she knew some sign language and also asked about Faith having a G tube, even though she never saw it. And the weird thing is, they were from the next town over from where I was born!

She asked for my email address to keep in touch. She was also a survivor of ovarian cancer. Once again, God placed this woman in our path. I love to meet the people who come out of the woodwork when Faith is around. It's uncanny! All I can say is it must be God's handiwork! Proof positive...my daughter walking!

Cerebral palsy awareness month...

2011-03-01T22:57:00.010-05:00

Your first pictures of Faith walking..

(Faith and me walking, hand in hand)

Cerebral palsy...

I had heard that term before Faith was born but I never knew what it meant.

Even after she got the dx, it was a long time before I had a firm grip on it...

Just about anyone who reads regularly will know what it means, what comes with that diagnosis and what it means for our kiddos. So I won't waste time with definitions....

Cerebral palsy, to me means...

...Celebrating tiny, minute, microscopic victories when your child can hold a spoon or sit alone or push her own hand through a coat sleeve...

...Walking extra slow everywhere you go as you hold the hand of a new walker who doesn't always look where she is going...

...Learning how to juggle a wheelchair, a walker, braces, feeding tubes, a pharmacy's worth of meds, a ten lb. medical notebook, diaper bags, your purse and oh yeah...your kid...and get it all in the door of a doctor/therapy center....all by yourself.

...Developing biceps that could put any body builder to shame after years of lifting a child and various equipment in and out of everything..

...Planning your vacation around handicap accessible hotels, parking spaces and businesses,

then packing for that vacation like you are going into a bomb shelter for the next five years..

...Being able to explain medical terminology to DOCTORS and give them advice on what to do about a condition...(also being asked what medical school you graduated from)...

SCHOOL OF HARD KNOCKS, BABY!

...Giving up everything you EVER loved in life, to spend all the time you can with a little kid who can't talk..

...Checking out every car parked in a handicap space to see if they really have a tag to park there, then reporting the EVIL DOERS!

...Savoring every opportunity to make memories and give your child that chance to be a kid...

...Cutting holes in your kid's footie pajamas so they can wear them and still access their G tube..

...Knowing all the different positions to hold hands, put on clothes, braces and transfer so that muscles can release and cooperate...

...Getting up 499 times every single night of your life to check and make sure she is breathing, feed and medicate her and make her comfortable...

...NEVER EVER, EVER giving up on your babe...

...KNOWING that you ARE equipped to DO this...That your child might have CP BUT CP does NOT have your child!

That what happened may be difficult but we are all defined by how we handle the challenges we are given.

Faith and I chose to see her challenges as a testimony for God's infinite love and compassion for us.

So, in many ways I am thankful for Faith's Cerebral Palsy and we wouldn't have it any other way.

(This is gonna be our new theme...REACHING!)

Now for a little shameless self promotion...

2011-03-01T00:07:00.007-05:00

So I have finally set up an Etsy shop to try to earn some money. I am asking all my friends to go check it out....

and if you see something you like maybe come buy something. I can make custom collars besides the ones pictured.

Last year I taught myself how to make handmade dog collars..just for fun. I have made lots of them but mostly just given them away or put them on my pooches.

Each collar is one of a kind, no two are alike and they are adjustable. I pick all kinds of funky patterned ribbons and patches and colors to make them and use heavyweight thread and extra stitching on the edges for added safety.

I named my shop...what else?....Collars for FAITH.

I jokingly told my family I was gonna name it Dog collars for Divorce.

Hmmm...maybe I should rethink that.

Seriously, though the money will go to support me and Faith and maybe if I can do well with it we can survive. I am asking $12 for them.

If you go to Etsy's website and type in handmade dog collars or collars for faith, you should find it no problem and tell your friends too, maybe pass the word around and help me get the word out.

Random cuteness....

2011-02-28T21:04:00.002-05:00

....Kisses from my girl are the BEST!

Faith learning all about the car...

Faith working, in therapy, on a cars study...part of our homeschooling unit study in January.

Yes, Faith you CAN be a ballerina.

Yes, folks we had SNOW in SC, this year...hard to believe but quite true. Snow was on the ground for over 11 days. We had over 8 inches in our yard...a record in the 17 years I've been here! Our super sweet neighbor showed up on the doorstep after three days of isolation to help me get Faith outside in the wagon to build a snow GIRL! She helped me dress Faith and load her in the wagon and push her up and down the hills. Faith had soo much fun! Thanks, Marti, we love you!

Today IS the day!!!!!!!!!!!! God's day!

2011-02-21T21:36:00.002-05:00

Hello? Is anyone out there? Hello?

Tell all your friends to come to THIS blog.....today!

Today....a miracle happened....

Something that so many doctors said would never happen!

Something I was afraid to hope for.....

Something that I waited seven long years for....

Are you ready?

Today....

Faith walked!

Yes you heard it hear folks!

She walked six....count them six steps ALL by herself!

No hands or walkers to help her!

SIX PERFECT STEPS!

To the chair, twice!

Alllllllllll by herself!

I must say it was a lack of faith on my part...to allow myself to hope that one day she would do it without any help...just too much.
But TODAY...GOD showed everyone!

Thank you Father for Your perfect timing!

Thank you for showing me that I need to have more faith in YOU and in Faith!

Please join me today in thanking GOD for our miracles....each and every one!

Tell everyone you know about this miracle, please!

Did you ever just KNOW?

2011-02-19T21:41:00.003-05:00

Did you ever have the feeling like You KNEW that you were doing the thing that GOD wanted you to do?

That unexplainable KNOWLEDGE....the PEACE..? The knowledge that you were born to do something? That no matter what bad stuff happened you could do that thing for the rest of your life and never get penny for it? That every morning you wake up looking forward to that thing?

I have had that peace for seven years now...almost eight...ever since I found out about this life inside me.

Even through all this turmoil...GOD himself has given me the unwavering peace that comes with a calling that I was born to do. I have talked my head off about this in the past but I feel it needs to be reiterated, TODAY! With every day that passes, I am more sure that THIS is what GOD wants me to be doing with my life. I can't really explain it very well. And I don't know if I will one day in the near future be asked to lay this calling down for a season while He works on this mess. I pray that is not the case but I am trying to listen for HIS words.
But for TODAY....today was another confirmation from my DADDY...

We made a trip up to the NC nature center for a field trip. I took her chair just in case she needed it but with the intention of letting her do some walking. Well, she walked the entire zoo! And let me say, it was no small feat! She walked for two hrs and ten minutes! And this place was built on a mountain! Holding my hand, my little storm trooper marched down those paths like she owned the place! She totally owned it, waving at people and blowing kisses to babies! Even a making two new family friends who had s.n. kids! People were cheering her on and encouraging her.

Let me say...I had not allowed myself to believe that one day...I might walk through a zoo holding hands with my daughter. It is a fault in faith that I have to admit to God. I was afraid to get my hopes up. I thought maybe one day she would be able to go to the store and use her walker but I wouldn't let myself believe that she could do more...that GOD could do more. FEAR...people. I try hard to be her #1 fan and cheerleader but sometimes it's hard to see that possibility that seems so....impossible.

Maybe I will never have a college degree or become president or make millions of dollars.

But what's a million dollars anyway?

I have witnessed so many miracles in my life...how can I question or doubt GODS wisdom or capacity? People, believe me when I say....
GOD is STILL in the business of performing miracles right here in little ole South Carolina! What wonders I have witnessed.

I am humbled.

I have seen the face of my Redeemer...in the face of my little girl every day, in the faces of so many perfect strangers who reach out to us, in the faces of family and friends who have shored me up in the last eight months, in the kind words of my friends here and in the miracles HE has shown me in Faith's life.

Some days It has been all I can do to drag myself out of bed one more day...and when I feel like my head is going under and I won't make it out alive HE lifts me up and draws me closer to HIM. Some people have something uncanny happen to them and they just say it was a fluke or randomness. But the things that have happened to us in the last eight months....cannot be dismissed! Only a perfect and mighty GOD of the universe could organize such unquestionable events.

Praise GOD...for his wisdom and kindness and unfailing love...even when I stumble and doubt and refuse to give it up to HIM.
Thank you Father, for giving me the chance to see my daughter walk and hold my hand after seven long years..forgive me for my doubts and fears. Something so small...so tiny to everyone else....can be such a wondrous miracle!

I wish I had the words...

Some new pics of me and my girl

2011-02-18T14:11:00.022-05:00

Ok, so we finally got some time at the library to download some pics....finally!

Let me just say that through all this disaster I have lost a tremendous amount of weight. Not intentionally, but when I get under severe stress I stop eating. And believe me...with ALL the responsibility now on my shoulders...well food is at the bottom of my totem pole! Some days, I get to ten at night and I realize that I haven't eaten all day. So, I have dropped about 4 pant sizes! At least I will come out of this looking better...just kidding by the way.I had Faith's care aid make some good pictures of me and my girl to hang in the house to replace all the ones I had to take down. So here is a mix of those and several others in the last few months of all the stuff Faith has been doing..

Faith operating a remote control train..

Faith walking with her new friend, the skeleton, who needs a trip to the prosthetics lab...

These are pics at the Marble's kid's museum in Raleigh NC, Faith had so much fun that I had to drag her out crying!

Faith and one of her best friends at girl scouts, making valentine cards.

These are from the rec basketball games. I love this one of her friends walking her across the court.

Ok, now for some good news...

2011-02-16T20:43:00.002-05:00

Sorry to all my dear friends for my miserable rants lately. There have been lots of really good things happening to Faith over the last months.
I am just gonna make a list since my prose is still struggling...

She is talking more everyday...attempting new words every single day.

She can now recognize when we go to visit family..when we go to my dad's house she gets excited as soon as we turn on his road and she starts pointing in the direction of his house. Super cute!

She is pulling up slowly but surely daily getting closer to standing independently every day.

She is can help get into my new van, stepping up with some support and even turning around to sit down.

She can now reliably recognize letters A,B and C when presented in fields of two. This is huge because my goal was for her to do it over a year but she is doing it now with 3 months to go!

She is, of course, walking holding my hand or a shopping cart.

This one is great, guys.....there is a commercial on GMC for a show called " Sue Thomas FBI" about a deaf woman who reads lips and signs...Faith recognizes that she is signing on the commercial and points it out to me every time she sees it, showing me signs with her own hands! Freaking darling!

She is beginning to understand counting...when I present several of the same objects and ask her to count them she will touch each one in sequence as I say the numbers out loud. You can tell she understands some of it b/c she will sometimes back up to see what number I will say.

She know all about the library now, her favorite place in the world, and gets soooo excited when we arrive there.

This is just a small example of the things she has been doing. She has made so much progress, it is amazing! I am so humbled to be her mom and to bear witness to God's miracles. It has given me so much hope and encouragement that He will provide for us and continue to protect us. I have lost my Internet connection so I haven't been able to upload any pictures yet but I have some neat ones when I get the chance.

Please keep us in your prayers.

Giving it up....

2011-02-09T22:19:00.003-05:00

I know that this blog is supposed to be all about Faith and life with her but "life" has over run us....

I have struggled with a LOT of really brutal things over the last 8 months. Things I NEVER thought I would face or be forced to face...
Things that I cannot change or fix or bring back. I have been forced to see terrible things and witness dramatic changes that are too awful to ever get out of my head. Part of the realization is that our lives are forever changed. For me this is a really hard thing to face.

How can your life be so demolished by another person and you have no control over it? It's really frustrating...

Things that meant so much before...our home, our social circle, family...are all slipped down into a dark bottomless hole. Before all this I wanted to stay in our home for the rest of my life...I remember telling him that I wanted to be buried on our property...but now I am miserable here, it seems so empty and bad here.

I know we will have to give up a lot. My car is on the way out, being downsized for a ten yr old minivan. I try to remember that it's only stuff that as long as me and Faith are together that's all that matters but losing everything is hard when your life is destroyed too! I just think what could possibly be worth all this devastation?

My identity as a woman has been shaken to the core...what is left of me? Everything I thought I knew...a lie. How do I come back from that? My friends tell me to move on, forget him, forget our old life, to "get over it", but how do you do that after sixteen years? How do you do that when you don't even have the truth? Some nights i wake with a lump in my throat, sure that it was all a bad dream. I try...I really do...but how do I make sense of half of my life being lied to and never knowing it? I thought we had a Christian home, that we were united, that our family was safe. I don't know how to trust anyone anymore. I can't make sense of things that used to seem so clear. I feel like I am constantly looking over my shoulder, waiting for another terrible thing to happen to us.

I keep praying for wisdom...but I am struggling....

Father, I need your help, please lift me up....

So now what?

2011-02-08T23:53:00.002-05:00

So after some of the shock has worn off.......just a little.

I need advice and help setting up a plan. I really need a way to earn some money but a regular job is out of the question.
I have a small idea dealing with a craft that has been stewing around in my head but I don't know how to try it out...fear... Being the operative word here.

I am open to other ideas I am just so overwhelmed I don't know where to turn. I have been praying for a long time that God would make a way to allow me to continue to home school Faith, so that is another monkey wrench in the mix.

All that matters to me anymore is to be able to care for my daughter so I know I have to get on top of things but......it sure is a beast!

So if any of my super smart, helpful, creative, ingenious bloggie friends have some ideas to shoot my way....I would be ever so grateful!

If you would rather email me at faithann04@att.net feel free.

Faith update:
she walked into therapy just holding my hand for the first time! Over to moon, I was! Could it be possible that once again my little iron girl will disprove all the professionals who cast doubt on her? One more huge deal she can walk in the stores now pushing a shopping cart by herself with just a little guiding!

Sorting out the mess...

2011-02-07T22:43:00.003-05:00

The reality of it all...

My heart breaks...
Missing my husband, my life, my family...

How do I pick up the pieces?

What happens to us now?
All the hopes, dreams, lives....destroyed.

How am I supposed to do this alone?
How do explain where daddy is?
What do I even want for US now?

What happened?
I don't even understand and I don't even get the truth.

How do I recover? Heal? Forgive?

I don't have the answers...I keep praying for understanding, for healing,
for wisdom, for strength and most of all not to become bitter....
To learn something from this terrible tragedy....

But sometimes...
The answers, the healing, the wisdom and strength sure do take their sweet time finding me.

Please take a moment and pray for me specifically TODAY for my strength and for GOD'S comforting hand on my shoulder as I am weak and my heart is heavy.

Lost.....found....

2011-02-07T17:39:00.002-05:00

Hello all my dear blog friends....
We are actually still living and breathing, believe it or not!
I know my post have been cryptic and few over the last seven or eight months but I guess the truth is now pretty public. I ask you all to pray for me and for Faith and for that matter...Carl too.

In July, Carl left us. There...I said it. It was a shock and my heart is truly broken.

I won't go into all the gory details in such a public domain but to say the least.... it has been brutal. Faith and I have been in a tough limbo land with a tremendous amount of changes and uncertainty in our Iives. I have struggled with intense emotions and overwhelm so blogging has been at the bottom of my totem pole. Anyway, I am going to try to get back into this and maybe get some therapy from it. I never expected to become a statistic but I guess there are a lot of things that are just out of our control.

To change the subject to a happier note...Faith is doing really well with her development. She just started walking holding someone's hand in the last few weeks and she is on top of the world! Balance is still a big issue but she is doing tremendously well. She can now identify letters a b and c by pointing and is working on numbest 1 2 and 3. I am so proud and humbled by her drive and determination! She can also get herself off the couch and is even talking more. She was made the honorary captain of the girls 10 and under basketball team complete with her own jersey! She is also being featured on our local hospital's website for the therapy center she attends.

My post will be brief but I will be doing more soon. Please keep us in your thoughts and prayers as we are under intense fire from the enemy and I need God's protection.

Digging out...

2010-10-04T15:09:00.004-04:00

Hi everyone out there in bloggie land. Faith and I are still alive.......well...for the most part. We have had a really rough go of things for the last few months and my blog was one of the first things to fall to the wayside. Things have not been easy for us and I am still dealing with a LOT of bad stuff. These last few days I have finally begun to try to dig myself out and try to get my life back. Don't know how to do it just yet but I am praying to GOD to give me strength and wisdom to do the right things. Faith is doing ok, she is talking more and more. Last two weeks she learned to say NO and Uh Oh! It's a really big deal and of course, everything you ask her is ......"Noooooooo"! It's so cute! She has been going thru a big growth spurt and she is looking more and more like a young girl instead of a little girl. Losing that baby face. We had an epilepsy center appointment last week and her reports were all good and they said as long as she stayed seizure free like she has been she could go six months before our next trip! She also had another VCUG on her kidneys that revealed that she still has the grade two reflux...don't know what our dr will decide to do but there is a possibility of surgery to repair it. We will go at the end of the month to hear about what he wants to do. Please continue to keep us in your prayers.....we really need it. I am going to try to get back to blogging to relieve a little pressure.

We are still alive...

2010-08-09T22:42:00.002-04:00

To all my dear friends out there...we are still alive! I am still dealing with some deeply personal challenges that are consuming a great deal of my time. I wish I could talk more freely but it is still very raw right now. I miss getting to read every one's blogs and continue to pray for all my dear friends and your children. I am sad to admit that I missed marking the anniversary of my blog, last month but it's just a date after all. Faith is doing OK, she is still full of smiles and joy every day. She is my bright light that keeps me going...Please continue to pray for me...strength and wisdom and God's protection.

Please don't forget...

2010-07-22T15:23:00.003-04:00

To all my friends out in blog land. Please don't forget to pray for our family. I am still here but my heart has not been able to pound out the words to fill a page. I am still struggling and am needing all the sincere prayers that I can get. Pray for wisdom and strength and God's merciful guidance and comfort. Thank you to my dear friends who have reached out to me with words of encouragement, you don't know how much it means to know that friends are out there.

Prayers, please...

2010-07-11T17:25:00.002-04:00

Forgive my absence, lately. Have been dealing with some serious personal issues and really struggling. If you all have some time to lift me up in your prayers please do. Having a really hard time, right now.

Happy July 4th...What this "country" means to me...

2010-07-03T22:59:00.008-04:00

I know I have said this before but I feel compelled, tonight, to wax poetically about our tiny town we live in. Our town is small...well...small isn't really the word. We don't have a stop light and only a couple of stop signs in the town limits. Let's just say, you could miss it if you blinked, it is also very rural. But our town has a host of "mis" conceptions attached to it. It is not "known" outside of the community as an accepting place but it is really a "mis" conception.

Tonight was our town's Independence Day Celebration. All the churches get out and set up tents and provide games, inflatables, food, drinks, snow cones, face painting...all for free! The street fills up around 5 or 6 with children, pets, families, strollers and everyone brings chairs to watch the fireworks at dark.

This year we took Faith, my sister and her oldest boy. The community is so close knit, everyone knows everyone. Even people I don't know...know me! Now this is the part that brings tears of joy down my face tonight, as I remember this magical evening. We decided to be brave and surprise everyone by bringing Faith's walker and let her walk the street. It was her first coming out party "walking" ever. Most of the people she knows have never seen her walk. She came tramping down the street and in moments we had a host of fans, followers and admirers trailing behind us...photographing, cheering her on, clapping for her!

Perfect strangers came up to talk to her and encourage her. This is a friend of ours who is mostly deaf who adores Faith and was kind enough to decorate Faith's cheek with...
"THE BEST TEAM IN THE COUNTRY'S" logo!
( Gamecocks Rule...that's for you, Carl!)
It is hard to explain to people who aren't from here or people who don't have special needs kids how isolated it can make you feel when you have a sick child. But this community.....
has welcomed her into it's fold.

This little girl is not a girl scout but she does know Faith through girl scouts. Ever since she met Faith she has gone out of her way to reach out to Faith. She is a rec cheerleader and every time I see her she comes running up to me and asks if I have decided to let Faith be a cheerleader this fall. She never misses a chance to ask me! She came running up to us and the first thing out of her mouth...."Can Faith be a cheerleader this fall? Have you decided?"
SO CUTE! She made Faith two bead bracelets and decorated her wheelchair with carefully chosen stickers.

This is my favorite shot of the evening. These girls LOVE her...really LOVE is not the word! When they saw her walking they were yelling and cheering and telling everyone! We saw lots of people we knew who had never seen her walk who were awestruck. We met about 15 new people from surrounding communities who had to come meet Faith and she charmed them all, blowing kisses, calling out to them as they passed by. When she got overheated and we needed a place to let her rest and get cooled down...women from the Methodist church gave up their spots in front of a fan to let her recover.
Her stamina was INCREDIBLE ....the longest she had ever walked. I would say maybe an hour! Up and down the street...up and down...waiving at her fans and marching along watching all the people. When she saw someone she knew she would say..."Awwwww" and point and head straight that way. Men, women, children, dogs all were fair game.
See what I mean...this lady we did not even know brought her puppy for Faith to see and the first thing she did was reach out and hug and kiss the puppy.

She was so happy and I could never begin to describe how my heart was swollen with PRIDE!

She didn't make it to the fireworks, Carl had to take her home but I got a mom's night out and stayed with my sister to watch them. They were beautiful but as I watched the evening grow dark and the lights grow dim...fireworks starting.... I turned to look at all the people lying in the grass, on the street....all gazing at the sky...I was thinking...MAN, forget the fireworks! Look at these amazing people! Look how they have accepted my daughter! What an amazing community we are so lucky to live in! Although it is TINY...it is full of heart and kindness! I have never been one to have attention drawn towards me but I tell you I walked straight down the middle of the street like the Queen of England, proud! It's so hard to explain without being here, being there to witness this tiny girl "OWNING" her community! I just don't have the words to describe it. Tears of happiness to know that she has a HOME in our town, she belongs, she is accepted, she is LOVED, she is encouraged, she is cherished. "
That is the what INDEPENDENCE means to me!

HAPPY INDEPENDENCE DAY, Y'ALL!

First month down...

2010-07-02T21:44:00.002-04:00

Well, we are officially into our second month of homeschooling. I am not going to go into great detail because....well...we would be here all night! Faith has 21 days in so we are on track (we have to log 180 days by June 1, 2011). My goal is to have at least 40 by the time regular school starts which is Aug 16, so I think we are good. I have been doing a lot of trial and error things, trying to figure out the best way to present things to her. Of course, the simpler the better with her. I have been kind of making unit studies on the letter A with different A letter words each week...Apple, Alligator, Ants...you get the point. We will spend the week reading books about each object, watching some educational movies and working with the real things doing counting or exploration (except the alligator, you know!) We have been playing a game with each object where I cut out a paper version of the object with the letter A on it and color it then go around the house and hide it. Then I ask Faith to find it. She has so much fun with this game and has become pretty darn good at finding it even when I try to hide it well. When she finds it I say the objects name and the sound A makes, then ask her to say the sound. We often play it for an hour or more!
I figure if I can get her to be able to identify (by pointing) the first three letters of the alphabet by Christmas that's a reasonable goal. I have been learning a lot myself about time management. I have always been pretty good at it, actually prided myself on it as a manager for years! But this is a different ballgame...therapy, doctors, driving, researching and preparing lessons, caring for her, getting her fed, dressed and medicated, cleaning, making dinner, record keeping. Shew...is that all? I have learned that we will not be able to do our school year following a typical school year schedule there are just too many commitments (for Faith) that we can't give up. So I have learned to get up early and spend an hour or two first thing, then off to therapy then book it home and spend as much time as we can before dinner. The majority of Faith's education is still daily living and self help so we get to count therapy and also when we work on standing, eating and dressing...all that counts for parts of our school day.
So this is really just a recap of things we have both been learning in the last month. My real big issue is in SC we have to teach writing. Now Faith is just barely where she can hold a large crayon and scribble some marks on a page, so that is giving me a real fit. I know we have to start with the basics like lines and circles but she isn't even near that. I feel very unprepared...wait unsure how to do this right. I need to talk to our Association leader about what counts to see if working on her Ipad may count or what I need to do.
Faith seems to be enjoying most everything we do, mostly I think she thrives on focused attention by me...always has. She has passed 160 books in our first month and we are working on compiling a review of our A words in a "A book" with pages she colors of each of her topics.

I NEVER thought I would see this day...

2010-07-01T16:30:00.003-04:00

Well, OK I lie. I did think that I would see this day but it has been MANY years since I believed it would REALLY happen!

Today, Faith stood up on her own for the first time with ABSOLUTELY NO assistance! It really is a miracle after all these years it's so hard to hope for things that seem so unattainable! Since her first "getting to stand" with just a tiny bit of assistance she has had spurts of attempts again and again but them slacking off and not trying for days ( I think from fear after a few falls). After that day I felt sure it really WAS going to happen. This week she has been trying everyday after finally figuring out that she could hold on to the couch. She can consistently get her right leg into kneel now with very little effort.

Today, she was working for almost an hour, trying so hard over and over again. I was providing a little support on her left (weaker) side when she got up to keep her from losing her balance. I reached out and took my hands away just for a second to grab the camera and before I knew it....

She was UP! She wobbled and pitched and then leaned forward over the edge of the couch to catch her balance and stayed up! I couldn't believe it!
She only did it once but she kept trying....she just kept losing her balance and falling backwards. Once she fell backwards and missed the coffee table by about an inch and after a few tears she was right back up trying again. As of about 2pm today she can now get to kneel about 50% of the time without holding on!
My GIRL, I am so proud of you. Words are not enough to explain how much joy and surprise you bring to my heart! I love you the way you are but I love you more for your determination and persistence!

My new finds....

2010-06-30T22:17:00.003-04:00

Took a trip to the Education Shack today, they were open all week with several new shipments.
I know this doesn't do it for everyone, but I was so excited! This place is a wonderland of boxes of all kinds of therapy and educational equipment and materials. Really they don't even know what they have or what it's for. I had two HUGE deals I found today...

We have been using these recorders in therapy with Faith for a while. They are little handheld recordable switches that fit perfectly in a child's hand. Our therapist suggested investing in one or two to use at home. At around $13 a piece, not bad for a primitive AAC device but I hadn't forked over the money for one. So while scrounging around in random boxes, today, I found one lying right in the bottom of the box! I was on cloud nine, so I asked a few employees if they had seen anymore and they said they had seen a few boxes of them but couldn't remember where. So we dug around and came up with 7! SCORE! I asked how much and the cashier says "I'll give them to you for $1 each." SOLD! Faith has been hauling them around all afternoon, I programmed one to say "Hi" and whenever someone would come thru the door at therapy she would press that button! She was so proud of herself.

My other cool find was this adapted walking sheep! We use adapted electronic toys with switches a lot with Faith and over the last few weeks her therapist loaned us a bubble machine with a small switch and a delayed response device. Got this little sheep that was already rigged to be plugged into a switch for $5! I had just brought home two books about sheep so we worked them together this evening while we read.
Found a few other steals...a bunch of Crayola washable markers in different color combinations for a $1 a pack, a 25# box of white sand for her sensory table- $5, a little plain apron to decorate while we work on letter A stuff-$1 and a decorate yourself pencil box-$1. I also saw a platform swing for $40, which I am told is a pretty sweet deal (soooo tempted) and they said they had a bunch of those canopy/bag swings at their other store for practically nothing!

I get a BIG rush finding good deals, so I walked around all day with a big smile on my face. I am so tempted to go back later this week when their new truck comes in. I think Carl would strangle me, though!

Beeeeeeees....

2010-06-29T14:46:00.006-04:00

Last Thursday, Faith got to go to the library presentation on bees. A husband and wife who keep bees spoke to the children. There were only about 7 kids, this time, so it was not so distracting for Faith. They started off having the kids pretend to be bees. They sprinkled dried chick peas on the floor and the kids were supposed to pick them up (like pollen) and work the bee hive to make honey. Faith had a lot of fun, I picked them up but let her carry them to the bowl, then she got to stir the bowl. Finally the kids got to taste some of the honey on spoons. Faith had never tasted honey and she really liked it!

The couple showed the various equipment and tools used in bee keeping and had some of the kids model the protective gear. They also brought a small hive to show, Faith was particularly interested in the bees, themselves. She liked the buzzing noise they made and sat very still listening. While we were there we met a little boy who was in self contained class at the local elementary school. He was very shy but eventually warmed up to Faith because she kept trying to get his attention going...."Heh....Heh...Heh!" and waving her hand at him. It was so cute! My little social butterfly!

One really cool new thing she did was when the man asked some questions for the kids to answer...they all raised their hands and after a few times Faith did it too! She was doing just like the kids....leaning forward with her hand outstretched like..."Pick me, Pick me!"

On our way out we checked out some more books...she's now up to 140 books for the month of June! Pretty proud of her....(even if I do all the reading! LOL!) Really I am just kidding...I love reading to her and she is so interested in all books!

Parent perspective....

2010-06-26T20:41:00.003-04:00

As a stay at home mom of a EXTRA special little girl, I know that my perspective of things is a lot different than my hubby's. He has a job that he goes to everyday, friends he works with, people he deals with. Much like "normal" people. I, on the other hand, spend 99.9% of my life with a six year old little girl who can barely talk and understands only simple things in life. My concerns are...is she safe, is she happy, am I setting a good example for her, am I leading her on the right path, am I providing her with the right stimulation/learning experiences, did I spend enough time stretching her. Not the things that most people worry about.
My life is consumed...but I am NOT complaining. It's my responsibility! I am OK with it.
But for Carl it's different. He sees himself as other things besides the dad of a special needs child. He still wants to go do things that we used to do before she was born. Hiking, camping, overnights at the beach, swimming at the lake until late at night.
It's hard for him to NOT be able to go do those things. He is a GOOD sport, believe me, but sometimes I can see him wearing down under the monotony of our days.

I do miss those things, but I don't ache to do them like he does. So this weekend, he has gone camping with his best friend from school and his little boy. They are planning to do some fishing, something that Carl really misses.

I am happy that he is getting out and having carefree fun...but I miss him and worry about all kinds of potential problems. I hope this gives him a little boost and gets him refreshed to come back to life.

Tie Dye Fun...

2010-06-23T17:03:00.004-04:00

Last Thursday, our local library had Tie Dye Day. The kids were invited to bring a t shirt or something white that they could dye....er....destroy!
Faith took a pillow case to color. First they made book marks out of foam stickers and glue...Faith was all about the glue and made a BIG mess all over her wheelchair and lap! I purposely dressed her in clothes that wouldn't be destroyed by dye but wasn't prepared for a glue war. She chose pink and teal to use and we were very conservative with the colors. Some of the other kids made a HUGE mess that dripped down onto the floor where the plastic had been moved under the table by all the kid feet. I felt so bad for the poor librarian. When we got home I put out the pillow case on the back porch to dry and it was totally dry in one hour! That's how hot it is here! Faith dragged her artwork all over the house for the rest of the night, she was so proud of it. This Thursday a bee keeper is bringing some of his bees and doing a presentation. Hey, I can't complain about the library doing some of my homeschooling work for me, can I?

Not enough hours in the week...

2010-06-21T17:21:00.002-04:00

Since we started homeschooling with Faith at the beginning of the month, I have had so little time to sit down and blog. I have been trying to keep up with everyone out in bloggie land but that's about all I can do, lately! I have been going from about 7 am til around 9 or 10 at night. Good news is we have 14 days under our belt, now. My goal is to have at least 40 days by the time public schools go back to school, so I can keep ahead. Faith is having lots of fun with "school" although it's just an amped up version of what we have done for years. We have spent HOURS reading. HOURS, people! Like over an hour almost every day! We have already read 115 books since the first of the month! I think we have logged about 10 hours of reading time since two Fridays ago. I have found out that my evenings are now my only time to get all the housework done. Well, at least most of the housework done! HE HE HE! If anyone has some extra prayer space could you remember me and pray for strength and fortitude?

Things I can't live without...

2010-06-14T20:19:00.008-04:00

Here are some of my new favorite gadgets that we can't live without, here in our house. Don't know how we ever lived without them. This was my greatest new find at the Education Shack that I talked about a few weeks ago. An activity table for water, sand, beans and the like. I always wished for something like this for Faith but they are ridiculously expensive! Found this, last Saturday, for.... $20, people! I was soooo stoked! She has been spending hours playing at this thing. It is the perfect height for her to stand on her knees and she will stay there forever. We have been putting little people animals in there and when she picks them up we say what they are. This is her favorite new toy and it's so cute to see her go into her playroom and stand there going "peeeeeeeese" for me to bring it into the kitchen and put water in it. Freakin' darling! I looked it up on the computer and the cheapest place I found it was $80! Score!

Her other new piece of wonderful-ness is her activity chair. Here in SC we have an organization called Family Connections that pairs parents of special needs kids together with other parents of similar kids. They keep a loaner closet (house) that parents can come and borrow/use equipment that people have outgrown/donated. It's a wonderland of old, new, crazy equipment from the last 20 years! I have been on a hunt for a chair with a tray that we could use for h.s.ing but no luck for two months. So I put in a call and went over a week ago, they said they didn't think they had anything that Faith could fit into but we went into the building outside and right there in the front was this perfect activity chair! It fits her perfect and she LOVES it, asking daily to get into it. I love it because it's adjustable, has a tray, an abductor pad and a seat belt. It was exactly what I was wanting. And I get to keep it as long as she needs it! Who could ask for anything better?

This last one is the wonderful gift from our new friends, T and his momma. (Don't ya love our cat, thinkin' she can get a ride?) This is called a Kaye wagon walker and it is the apple of Faith's eye! I know it's as old as the hills but it's in perfect shape. She had been using one of those baby push walkers to get around at home but it was way too small for her. This bad boy is made for bigger kids and adjusts! The family who gave it to us had replaced the front wheels with casters for easier turning and when we got it we moved the hand bar back because she was getting stuck in the middle. I have had my toes run over so many times, I think they are all broken! She loves the basket in the front and gives all her precious belongings...babies, books, hello kitties, bottles even her baby cousin the other night...rides everyday!

The girl likes PICKLES!

2010-06-14T18:52:00.007-04:00

It all started with lunch, last week with Faith's PT. We had sandwiches that came with a pickle spear. I didn't have anything for Faith to eat so I offered her the spear, just to see what she would do. SHE LOVED IT! She ate both mine and her PT's! So this weekend I went out and got her own jar of whole baby pickles, thinking she could hold them easier. She has eaten pickles every night since! It cracks me up because I HATE pickles...hate them...hate the smell...everything about them! BUT she loves them! Tonight she had three, biting them all the way to the end. She isn't swallowing the pickle itself, she spits it out but she is swallowing juice. I have seen her swallowing. It is such a big step in the right direction...chewing and biting....things I never thought I would see her do. It seems like she responds better to things with very strong flavors...spicy foods, pickles, peppery foods, sour candies. Stuff I could never eat until I was an adult. Some of her therapists and specialists who have treated her said that kids like Faith often do better with strong tasting foods...something about it triggering a bigger reaction or something. Who knows...who cares? I think Vlasik needs to star Faith in their next commercial...with a crunch like that she could sell some pickles, I bet!

Lunch...

2010-06-12T21:54:00.003-04:00

Wednesday, we had lunch with our beloved PT, at the bakery/deli that Carl recommended. We both had sandwiches that were good (but crazy ridiculously expensive). After lunch, she invited us over to her house, which turns out, was just half a mile down the road! She is awesome, have I mentioned that before? She took Faith outside and jumped her on the trampoline, let her drag all her kid's toys out of their toy bins, and generally get into trouble all around her house. She followed Faith around on her hands and knees almost the whole time! When it was time to go to therapy she asked if we would like to come back after therapy and play with her kids. So we did! It was lots of fun, the kids were so good to Faith. They shared their toys, read her stories and even diligently wiped her mouth when she drooled! They were just as attentive as their wonderful momma, they come by it honest. And they are such good kids!
I felt a little awkward because I didn't want her to feel like she was doing therapy for Faith when we just came over to spend time with her. I felt like we didn't get to sit down and chat much, but I did have a great time. I asked her about coming up to the house and she said she would love to and didn't mind the long drive. So if I can get my house cleaned up I think we will try to get them up to the house. It was a good time for all of us. I really hope that we can spend some more time with her and her family.

Reptiles....

2010-06-10T23:05:00.004-04:00

On Monday, we got to go to the Reptile show in our town. I was excited to take Faith to let her get up close to some unusual animals. I grew up with all kinds of critters like these so NO we aren't scared of snakes, here, in the Hudson house. When we came into the building, the gentleman who was doing the show came right up to Faith and started talking to her. Turns out he retired several years ago from our local residential facility for adults with disabilities, where Faith goes for one of her therapies! He worked there for 27 years! He put us right up in the front row so Faith could see all the animals!

He was so nice and when he started bringing some of his animals around for the kids to touch, every single time he started right with Faith! The first animal he brought her was a huge iguana that he put right in her lap! She was totally excited! Then he brought her a python...

Faith was very interested but she had a hard time sitting still during the times he was talking, she got bored, so I had to do a lot to get her attention.
Then he brought her a HUGE albino python and she tried to grab a big chunk out of the poor snake!
And finally she got to touch an American alligator, which she really liked!

We both had a lot of fun, I could have listened to him speak all day. We got to see about 20 different species of snakes, turtles, alligators and other reptiles. It turns out that this gentleman was retiring from his rescue/business this week, it was one of his last shows. And all these things fell into place that we went to the library at that day at that time and just before the show started, then to meet this man, days before retiring who worked with special needs people for years! It was a perfect day with Faith standing, getting her library card and this wonderful man!

Another childhood milestone...

2010-06-08T14:29:00.005-04:00

Yesterday, was a wonderful day in more ways than one. After all the excitement of therapies, we headed to the library to get Faith her first library card!

Our library is tiny, I mean really tiny, like about 5 rows including the side walls! The librarian was so nice she gave us the paperwork to fill out and once it was done I let Faith hand it to her.

And here we are, Faith's first library card! All grown up, she is! She chose four books about horses, a book about guide dogs and three videos about horses and zoo animals.

While we were checking out when the librarian told us that they were having a reptile exhibit show in the community building, next door. So off we went to check it out...
More on that tomorrow.
Faith was so proud of her books in her little book bag, she carried it out to the car (see, Dr. Boucher, we remember what you said about carrying stuff!). Of course, five books doesn't go very far in this house. I started keeping a log of all the books we read and in 5 days there were thirty books! So we read all of them last night, LOL, I guess we will be visiting pretty often!

Some unbelievable news and 200....

2010-06-07T22:04:00.007-04:00

OK my lovely friends out there in bloggie land! I am pretty sure I have some lurkers out there and after this post I sure hope that you will take some time to leave me a comment! First off, today is my two hundredth post, and I am exactly one month away from an anniversary of my blog. I know, I know, sooooo exciting!
Here is the big news! Drum rolls, please...

dum, dum, dum, dum, dum...

TODAY, FAITH STOOD UP!
YES, FOLKS, SHE STOOD UP!

She has been able to stand if someone put her into stand in her walker or held her up but she has never been able dissociate her legs, lift a leg into kneel and then stand up!
TODAY SHE DID...
with a little assistance in the form of a chair and a therapist to help her keep her balance. BUT, she did all the work! After six and a half years, I had almost resigned that she would never gain that skill, that we would always have to put her in those positions.
But once again, she proved me wrong!

It all started with her OT, trying to introduce some simple yoga moves and for some weird reason she seemed to pick right up on them, attempting about six moves! So she went with it and pulled out her yoga book. Her OT was performing the moves then saying "Faith do it" and she would try. So eventually, it came to a chair and a kneeling position. So D. did it and when it came to Faith's turn she sat on the chair to keep it upright and low and behold...
SHE DID IT, but she kept going into a stand!
(These pics are the actual first time standing for Faith, some aren't so good but I had to show you all anyway!)

Needless to say, we danced, we screamed, we cried, we acted like a bunch of fools as we celebrated a HUGE milestone that was a LONG time coming!

So, then she decided to get smart with us and attempt it using the tripod leg!
Little Miss Smarty Pants did it, with D. supporting her!

I felt like the Heavens were opening up and a chorus of angels were descending on our little therapy room! She did it, folks!

Today was a wonderful day for many reasons besides this amazing new skill but it would take me all night to write about it! Another post, another day.

Upon arrival at home, after a long day out, she went scooting over to her little wagon walker and I saw her trying to lift her leg up to a kneel position. She got to it a few times but both times she lost her balance and fell over but she wasn't about to stop! So she came walking on her knees over to me and lifted her leg, I slowly put out one finger to offer her some support and she reached out...
took my finger and STOOD UP!
I almost fainted right on the spot! She did it three more times before she got too tired and started whining like she was in some pain. So we stopped. I tell you, friends, there was no momma more happy or proud or amazed or joyous than me, today! Six years, people, we waited for this! SIX YEARS! Oh and one more small miracle, she crawled reciprocally today in therapy too, for the first time! She always has bunny hopped, but today, she was rockin' it and decided to start moving her legs and hands in the proper fashion! She was so proud of herself, re doing it over and over again to practice! Just when I try to accept how things are for her, she always knocks my socks off! What a day for a two hundred post! I will be posting a few more awesome things that happened today, in the next few days. Lots of good stuff!
Off to dance myself to bed and dream sweet dreams of my girl, running through a field of wildflowers!

Hummus, anyone?????

2010-06-03T16:27:00.009-04:00

Here is my lovely girl enjoying some of our "hard, homeschool work" with self feeding! One of our major goals for her, of course, is to eat by mouth as much as possible. So today, after a trip to the store and a big jar of hummus, she sat in her (new to us) activity chair while I did dishes and laughed and spilled stuff and made a big mess! She used her NUK brush to dip it and then her fingers/fists to smear it all over her face and hair! She figured out if she made a big to do about putting it in her mouth I would dance around the kitchen like an idiot! So I snagged lots of good pictures of her laughing at my stupidity.
Who knew Hummus could be so much fun? She sat there for a good hour and a half without complaint and enjoyed a little of the exotic....

Six months post-op....

2010-06-02T20:56:00.002-04:00

Today, was Faith's six month follow up from her gastrocs surgery at Shriners.

We had an incredibly busy day...8 am Shriners, 1pm double therapy and 2:45pm meeting at supply closet. So we got to Shriners early with a letter in hand from our PT, discussing our current concerns about her orthopedic issues. We have seen a new crouched gait in the last month (where as before her surgery, she was hyper extending her knees) as well as some changes in her pelvis alignment in turn affecting her gait, creating a "windswept" step. Also we had seem quite a bit of muscle atrophy in her lower calf, just where her braces start. You could see and feel a distinct line where they started and the muscles went from normal feeling to very soft. So first off, they got us in with the PT to have a look at her structure and how she was walking and all the good stuff. She told me that Faith's crouching was a result of the new range of motion in her ankles and calves as well as shortening of the muscles around her hips. Although no one wants her to walk crouched, crouched is better than hyper extention. She also said it was a functional gait for her that also provided her with a measure of stability. She was not worried about the tibial rotation that we were concerned about because she said that it was coming from her pelvis also not her leg. She did say that Faith had Patella Alta- where her patella (knee cap) rides too high in her knee area from the muscles pulling. Apparently very common in kids with CP, but yet another issue that I had never heard of or even thought of!
Of course, after all our concerns and worry and all the effort our PT went to to send a letter... Faith did almost none of those things while we were there! Actually, she made a BIG FAT LIAR out of me! When they asked me to put her in her walker, she walked out into the hall and proceeded to walk up and down the hall for over half an hour...until the doctor finally came to see us! She had never walked that far or that long...EVER! I stopped briefly to chat with a nurse we knew and in about 30 seconds, she had made it to the double doors at the end of the hall about 50 feet away! She walked straight without pulling to one side and she did not do her soldier march that she usually does! I know, I know, A LIAR!
All in all, they seems thrilled and very happy with her progress. They gave us the go ahead to take her braces off at night as well as her knee immobilizers and to take them off during therapy! WOOOOPEEEEE! As well as taking them off when she is playing in the floor. They said she needs to stay in them about 80% of the time now...(although, I can't figure out how keeping them off for therapy, play on the floor and sleep equals anything less than 80%) but I guess we will figure it out! We went to therapy afterwards and started right away with working with no braces. They told me today that the next six months need to be muscle building time. And you can tell she needs it when those braces come off. She is soooo weak.

So tonight our girl went "commando" no braces no knee immobilizers...just SOCKS!

FYI: for those of you who gave me all the good advice about inviting our PT over, I made a preliminary move and invited her to lunch, next week. She seemed really excited and asked how early we should meet so we would have time to talk before we went to therapy! LOL! So we are going to a local dessert/sandwich deli that Carl says is really good. Can't wait! She is so wonderful! She got lots of compliments from the folks at Shriners for her dedication and commitment to Faith! WHOOOOOO, E, we sure do love you!

School....

2010-05-31T20:54:00.008-04:00

Tomorrow we embark on an exciting journey! Really just an extension of what we already do with some record keeping and lots of research thrown in. Tomorrow it the first day that we can begin home school for the year! I have to say, I am truly excited. I have been researching and reading for about three years now trying to prepare myself as much as possible and now here we are! After all that reading and a lot of good suggestions and some examples given by families here on the web and friends I have met...I think we are leaning into the Delight Driven or Ecletic Style of schooling, at least for the next couple of years. My new friend who home schools her s.n. son showed me a lot of what she did with him the first few years when the major focus was still on life skills, functional abilities and self help. The first years they did lots of field trips to community service places like the post office, police dept, fire dept etc. She also did a different approach to help him learn to read...she began with sight words showing him lots of words by labeling everything (in their home, on pictures, in therapy) she used post its on everything! And you know, her son can read really well! So, I am stealing that one, too, since Faith doesn't even understand ABC's yet, I figured at least she could begin to learn to recognize simple words, eh? She also picked from anything that he was interested in and focused on finding things related and made them into math projects or simple science experiments. So I have been collecting LOTS of horse related items...my favorite find, Monday's trip to the Goodwill, a 360 page illustrated horse encyclopedia, in perfect condition for..... $.49! Near where we live there is a store called the Education Shack that has all kinds of random educational supplies and therapeutic equipment on the SUPER CHEAP! And you all KNOW how I love a good deal! So Saturday, we ventured out, here are some of my great deals...pretty proud of these finds, especially the last one!

One cartridge of my kind of printer ink in magenta...(I just saw this at Staples for $20) my price
$1.00! And it's not expired!~

Record book with attendance and other needed items, I plan to disassemble this and use different pieces of it ( saw a newer version of this at the education store, around $10.00) my price $1.00!

Thought about you, Katy, with this one! A dirt worm cup dessert kit (made with pudding and gummies) my price $3.00! This one is going into my first science set, exploring plants, that goes hand in hand with my next find of the millennium!

Found this science curriculum kit for K-2cd grade, with hands on materials like seeds and cups for growing, teacher resource book, flip chart with diagrams an d charts of plants and animals in pretty simple terms, beans to soak in water, journals, soil and the like. I know Faith isn't ready for a lot of this stuff but she would like to plant some flowers in some dirt! So I spotted this kit in the window and asked about it. It was the only one, no price on it and the box was a little sun worn from sitting in the window. I asked the girl how much and she says..."how much do you want to pay for it?" Hmmmm...I was gonna go for a cheap toss out of $15 but since she asked...."How about $8?" SOLD! Yes folks, I snagged this $75 science kit for eight dollars! I checked it out on Amazon just out of curiosity! I walked out of the store with two walmart bags and this kit for $20! Got tape dispensers, highlighters, huge flip books, ink, planners, paint, misc. office supplies, pudding kit...all for a measly $20!
My home school planner is pretty much all set up and ready to go, and we can officially begin on June 1st. My plan is to try to get a jump by starting early so we can be sure to get our 180 days in. I found out that we can count a lot of Faith's activities toward our days, so I am happy about that. Of course, a lot of our work is going to continue to be on life skills but I want to get her out into her community more. So I plan to start out next week at the library and get her own library card. Big step, huh? I called the library the other day to ask how old a child had to be to get one (stupid question, BTW) and was informed that we could get one for a newborn, that kid's just link back to a parent's card! But another important milestone, none the less!
So here we are on the cusp of a huge new experience for Faith and for me. As of tomorrow, our little girl is in first grade! WOW....
Freaky!
HERE WE GO....

Graduation.....

2010-05-31T07:42:00.008-04:00

Sunday, was Faith's Girl Scout graduation. She was bridging from Daisies to Brownies, even though she still should have been a Daisy, so she could stay up with her friends. We had seven girls in our troop, who were bridging, four Daisies and three Brownies.

Faith's little friend was so kind to push her up to the front and help her when she got her certificate and bridge bar.

These are our daisies, aren't they so cute?

This was my favorite pictures. Just love seeing her little face!

Faith gets a flower from her troop leader.

They were supposed to walk over the bridge so her friend just improvised

Then she got her bridge bar and a pin on a little ribbon.

Faith's bridging certificate...

Faith was more fascinated with the ribbon than anything else that she got. She understood that it went over your head, so she decided that she should put in on Daddy's head!

Here is her little uniform and all the patches she earned, this year! Pretty impressive, huh? The patches on the left are going on her Brownie uniform, as they have been working on these just recently. She already has NINE for it!

We were so proud of her! I would never have thought that she would have done all those things and participated in so much stuff! It's pretty amazing but really it's just physical proof of LOTS OF FUN! So our little Daisy is now a Brownie!

Congrats, Faithy, we love you!

Daddy and me...

2010-05-27T22:03:00.005-04:00

Daddy and me, sleeping on the couch...

Can you see where I get my good looks from?

Those same luscious lips...

Those same thick eyebrows...

That same hair color
(well, when daddy had more hair you could tell it better!)

Those same...LASHES!

Nothing better than a little nap with my dad.

Six years ago....

2010-05-26T08:13:00.003-04:00

This month marks six years since Faith was diagnosed with Cerebral Palsy. She was just barely five months old. Even though we knew what happened to her since the beginning, we were not told what it meant for her when we left the NICU. When we came home, she was on Tegretol but they didn't say "Faith has epilepsy" even though she had lots of seizures while she was there. When we went to the neurologist that day, Faith had recently had an EEG and an MRI and we didn't even know what we should be expecting. To be honest, we were thinking everything was going good. She had rolled over just recently and we thought that she looked fine, to our untrained/ignorant eyes. That day, we sat in the office waiting for the doctor, we were laughing and playing with her, not worrying about anything. The doctor came in with her scans and pictures of Faith's brain and held them up and told us that Faith had something called Cerebral Palsy, that she had been afraid that she did but had waited to tell us until Faith was showing signs of problems. She said that Faith had persistent primitive reflexes and was showing signs of delays. We didn't even know what CP was, we thought it was something like D.S.. We just sat there in shock, as she described what she saw for Faith's future....diapers for the rest of her life, no walking, no talking, the word "vegetable" was thrown out and even suggestions were made that she might need institutional care. This doctor will remain engraved in my brain for the rest of my life, not just because of the dx, but because she was so cold and factual. She just blurted these things out and gave us no recourse or anything to do. We left that office not understanding anything. We still didn't know what CP was. I remember I was crying uncontrollably and Carl was too. Faith was in my arms looking at me like "What's wrong?" I can still see her little face. We had been given a pamphlet for Family Connections to contact and we were referred to Baby Net but we had to drive nearly two hours home, knowing nothing about CP. I get physically ill when I remember that day....the worst was laid out for us and our tiny daughter. I had to go home and make all these phone calls to people and doctor's offices and tell them about something I knew nothing about.

I remember the first call to a friend I made, my friend Kim, the lady who got Faith to nurse after 9 weeks of work. She prayed this beautiful prayer on the phone while I bawled my eyes out and then told me she was coming to my house the next day to talk. She knew about CP and had worked with kids like Faith in her work as a Breastfeeding Consultant. She was positive and encouraged me telling me that Faith had learned to nurse so what they forecasted might not be entirely true! She kept telling me that Faith was a miracle and God had a wonderful purpose for Faith! Boy did I need that!
Some of the things the doctor warned us about have happened, some have not, some new things have shown up but they don't make Faith who she is. They are part of her, they give people pause to look at miracles but they don't make her a good girl or a happy girl. That's GOD given! When I remember that day, it seamed like nothing could be worse, nothing could ever be better. But slowly it did get better. Her dynamic personality covers up everything that is so painful. I know now that all three of us have what it takes to live with this situation. I have grit and determination, Carl has love and compassion and Faith has slow, steady resolve as well as a happy spirit and a light heart.

Decisions...

2010-05-25T08:58:00.005-04:00

Well, I thought my entire week would be carefree and lazy, last week. It didn't quite end like that but HEY, a few days is better than NO days, right? I have been doing lots and lots of end research preparing for our first year of homeschooling so I haven't had much time to lay down a post in several days. In S.C., we have three options to h.s.: 1)School district approved prgm oversight by school district 2) Use an option two h.s. association approved by the state that requires testing of kids, very involved curriculum approval process' and VERY expensive membership dues 3) Option three....the only option that makes any sense if you are going to all this trouble...Join an Opt. 3 H.S. association, with no less than fifty members and follow their group rules, which are required by the state.

Keep a plan book or diary
Keep attendance, must be at least 180 days
Do a bi annual review/progress report
Attend a twice yearly check off where other group members review your records
Include reading, writing, math and science

This is a very brief explanation but of course, we chose to go with an option three group. We had three groups we were looking at. Two state wide groups and one local group, here in our county. Saturday we went to a check off meeting to meet the group in our county. They were all very nice and VERY helpful. The leader gave me lots of great ideas to work with Faith and another parent there showed me her plan books and how she prepared them. Great stuff! They were very accepting of Faith and told me that they had several special needs families in their group. They gave me tons of good field trip ideas for her for this year and made great suggestions of what I should work on with her. (Let me say, I know a LOT of this stuff in theory but how to do it and follow state law and requirements for the group was a little different story) They also gave me a phone number for a wonderful mom whose son has cerebral palsy and told me that she would be happy to talk to me. So I feel a LOT more confident and at peace with our decisions and very happy that we have a local group, to get advice and help in our first year and some families with kids like Faith. VERY RELIEVED! I started work on my plan book and after setting it up...I have 16 categories! I might need to pare this down a little...LOL!

BTW: I did call that mom and yesterday, we got together. She was so nice and her son was the most like Faith of any kid I ever met, even though he is much older than her. He still gets around his house walking on his knees or crawling like Faith does! You should have seen her face, watching another kid do that! She was right on his heels! He was incredibly smart and could tell me anything about the space program that I could ever imagine! They even gave Faith this cool piece of equipment called a wagon walker by Kaye products. It's this little push cart style walker for bigger kids and it has a wooden basket for toys on the front. You never saw a kid so happy! She has been pushing that thing around ever since! They had it waiting at the front door for her when we arrived! SO NICE! She showed me lots of stuff she did with her son when he was little and gave me a lot of confidence. We spent about 4 hours together and were instantly friends. She told me to call her anytime.

So all in all, our decisions are pretty much all made, I feel SO much better and we even made some new friends!

Horse stickers courtesy of Faith, she helped by choosing stickers and placement...

Therapy and friends....

2010-05-20T21:20:00.005-04:00

Faith's physical therapist is wonderful. She loves Faith so much and has bent over backwards to keep seeing her over the last year. In the fall she moved over to the main hospital to work fewer hours and she quit working at our therapy center. But she offered to continue to see Faith during her lunch hour on Wednesdays. So NICE! After Faith was out during her surgery, she came back to pool therapy, just doing Mondays to help out the center. So we had her two days instead of one! Then a few weeks ago she called me one night and tells me she is leaving all together. No more pool therapy, she was cutting back her hours to just work three days a week. I should mention that her oldest son was dxed on the autism spectrum this winter, at ten. So I know she has been under a lot of extra work, stress and changes. But again she offered to continue to see Faith on Wednesdays. I certainly did not want to lose her but I didn't want her to say she would just so that I wouldn't be upset. We talked for a long time and she said that she didn't realize how much she meant to our family. She said that she loved Faith so much and wanted to be part of her life. She also said that she often thinks of us on the weekends and wonders what we are doing and mentioned that she would like to spend some time with us outside therapy.
She is so sweet and I like her as a person too, not just a therapist. She is very down to Earth and tenderhearted and I really look foward to seeing her each week. We talk about our kids and she confides in me about all the stuff with her son. I have often thought that I would like to ask her to come have dinner with us one weekend but have never gotten up the courage to do it. I worry that it might cross some professional line for her and be weird or awkward if I asked. She did mention how she would like to come visit us in the country. So I have been re-thinking asking her and her family to come over. Today, I got a text message from her checking on me (she didn't know about our crazy trip in NC, yet) to see if I was hanging in with my mother. I thought that was so sweet and I feel like she is reaching out to us.I know that friendships can cloud professional relationships and I am understanding of those issues. So my question to all of you is...Is that crossing some line? Or should I should ask her?
I certainly don't want to make things weird for her or us but I feel like she is making an overture. Carl says we should invite their whole family one Saturday night for dinner and a movie or some board games.
( I know we are dorks, right?)

So this is how it is supposed to be....

2010-05-19T17:11:00.005-04:00

So, after my harrowing trip to N.C. I have been hiding...yes...hiding out at the house.

In three days the phone has rung twice! Once it was our S. therapist who forgot we were supposed to be out of town, trying to nail down summer schedules. And the other one was a homeschooling group leader from our county, returning my phone call. So I call that a pretty successful three days. I think in the last six years we may have had a few weeks total like this but it's been a REALLY long time since we have, maybe over a year and change.

I never can imagine what regular stay at home moms do. I have thought of how their days must go but I don't really know....and I still don't. But I can imagine that this is as close as I am gonna come. Monday and Tuesday, I didn't even get out of my pj's until after 4pm, when I decided I should put some clothes on and take a shower before Carl showed up at home! I have gotten a bunch of cleaning jobs done that were way past due. Got the playroom cleaned up and organized and our bathroom almost done. I kind of don't know what to do with myself. I feel like I should be going somewhere or doing something "important". Faith and I have spent lots of time snuggling, picking up toys, being....
LAZY. He He He....
I thought to myself how much I could do if I wasn't doing other things like driving all over God's green Earth. But then I thought about how important those trips are and how much it means to Faith. So I guess I will settle with a less than clean house, a messy playroom (with cobwebs in the ceiling corners) and well.....
Maybe a "stay"cation from all our appointments once in a while.....
(I am thinking of telling everyone I am going to Bermuda for a whole month, just so I can get prepared for homeschooling, this fall)

What $8.00 will get you....

2010-05-18T21:11:00.004-04:00

A little late spring fun....

Faith's cousins came over for dinner, Sunday night. I made a little Mediterranean for dinner and stopped by the dollar store for a kiddie pool.

Faith had so much fun. She could have spent all night in that silly little $8 pool!

Her cousins had fun too but they both are a little high strung and can't really behave. So they were extricated from the pool after about half a hour!
We have been working on getting grass to grow for over three years in our back yard and no matter what we did it wouldn't grow. But this year, we finally got it started. So I spend every night watering the daylights out of it. But Faith gets so bored and frustrated.
I think this is my new weapon to keep her happy while I do a little yard work. I can just put a few inches of water in there and she can't get out but she is happy!

Tonight, we let her get in for a while after dinner. She kept pouring the water out of the pool with her little watering can. She thought it was hilarious to try to pour it on our feet and on the dog and on the cat! By the time she got out, Carl and I were mostly soaked.

We are recovering from our trip by
doing absolutely NOTHING this week!
I am taking every one's advice from a few weeks ago.
We haven't left the house since Sunday afternoon.
We have NO appointments and NO ONE knows we are back in town, so no phone calls either. I am going to try to lay low for as long as possible.

What'd I tell ya?

2010-05-16T19:38:00.005-04:00

OK, I admit I may have inadvertently jinxed myself in my passing comments about living to regret my trip to my mother's. I left early Thursday morning, made good time and arrived before lunch. Went to see my mom, in the hospital...she looked good. She had some swelling but she was walking with a walker and just had a single bandage strip that ran the length of her knee. She was really tired so we didn't stay long. I met my high school best friend for lunch then headed to my mom's house.

The next series of events resembled a scene out of Lemony Snickett's Series of Misfortunate Events! I won't go into great detail but upon arrival and unpacking my entire car we were forced to leave in great haste. I had to throw everything into my car including poor Faith. I finally got everything in the car and went to pull away from the house....when.....smash! I hear this awful noise and a terrible grinding. What had I done? Well, friends, I had hit an old metal rod that was driven into the ground! I hit it with the front passenger's fender and it scraped down the side until it went behind the wheelbase and under the car....where my car got hung!

Unbelievable! I almost ripped the fender off the car and made a huge gash down the side.
My mom's neighbor had to come over and jack my car up and get the post out of the bottom of my car! It was a miracle it didn't pierce the oil pan or transmission, he said!
I was a total wreck! I sat in a local gas station parking lot and cried for a good half hour! I didn't know what to do...I couldn't go back to mom's house and it was too late to try to get back to Raleigh or try to head home. So I swallowed my fear and got a hotel room. I decided that night I was going back home. I sat for what seemed like hours trying to think what to tell my mom. Finally, I just called and said "I am going home, tomorrow" and left it with no room for negotiation. She wanted me to stay. I felt like a terrible daughter. I know she will hold this over my head for....forever. But the living arrangements were unacceptable and I could not have Faith there for a week! It wasn't safe for her. I have been fighting off big time guilt and avoiding my mom's telephone calls. (I know...terrible..)
I don't talk too much about all my family here but most people on my side of the family have had trouble with boundaries. They often ask a lot of me even though they know about Faith. They don't seem to understand the limitations that are brought on by caring for her. I, in turn, have a hard time saying no when I should. I try really hard to be a responsible daughter and do the right thing, the things that children should do for their parents and family but I often end up getting my hiney handed to me. I over do it or can't live up to their expectations because I have to care for and protect Faith and my family just can't understand that.
I think I bring it on myself, sometimes, because I should just draw a line in the sand and say
"No crossing this line!" period! But I let people cross that line and it's hard to put them back.

So here I sit...not helping my mom, not being the "good daughter", not doing what I said I would do. But my responsibilities are really to my family and to my daughter, they have to come first. Even if I am torn, even if my family can't understand, right?

And just to add insult to injury...on our trip home, a trip that should have taken about 5 or 5 1/2 hrs took me almost seven! We got stuck in two serious traffic jams and I took a wrong turn off and added about 45 min. to my trip! I felt like the kid on Charlie Brown with the big cloud over his head!

Props....

2010-05-11T07:30:00.005-04:00

In Faith's therapeutic riding lessons, her instructor uses all kinds of random props...

clothes pins on the horse's mane to encourage Faith's fine(r) motor skills.

Egg and spoon game... to work on Faith's ability to follow instructions and delayed gratification and counting.
This game is now her favorite one. I don't know where they found that spoon and egg but I want one! She is supposed to hold the spoon with the egg in it for 3 seconds (which she rarely does) but they hold her hand and count to three then let go. She will fling the egg back over her head and laugh like a maniac!

Sometimes she gets it done by herself!

I really think she could play this game all day! The funny thing is I would have NEVER picked this as something Faith would want to do! NEVER! But something about Miss Caroline and the horse and all makes it the most fun game ever!

They also use pinwheels, balls, pool diving rings and fake flowers to encourage different movements from her.

Faith has made so much progress in the 9 weeks since she started riding that I encourage every parent who reads this to get their kids on a horse! It will be some of the best medicine you can find, I promise! Good for your kiddos and really good for you!
She can now almost completely turn around on the horse with just support when she is turning. She can get her leg over the horse's neck and back end with no help at all!
She is beginning to use the reigns, a little. She can ride front or backwards with no hands and stay on by herself (with people on each side for protection, of course). She can transfer rings across mid line to hang them on a pole. She can follow several new instructions like put something in a bag or kick a ring off her foot.
All of these things are new since she has been riding. We have tried lots of different therapies and different things to get results for her in her life but the horse riding has been the quickest and best results we have seen. I have been able to tell a big difference in the tightness of her interior thigh muscles. This was something that was quite bad before we started. I was having a lot of difficulty changing diapers or dressing her in pants because she was so tight. But she is much more relaxed and actually will lay her legs out for me to do those things now.
We are now on lesson 3 of our 6 lesson scholarship. I don't know what we will do when she uses up her lessons. It will be running into summer and I don't know if we should take a break during the hot summer or if we should try to make it work for a while longer. It gets so hot here and she is so sensitive to the sun that I worry about her. I certainly don't want to give up what we have worked so hard for and have regression so maybe we can make something work. I think we may be able to reapply for another scholarship if she has good progress, which she has.
Hmmmm, decisions.....
We are off today for lesson 9 this morning. The weather man is calling for showers so I hope that we beat them and can get her full hour in before the bottom falls out!

Happy Mother's Day....

2010-05-08T20:24:00.004-04:00

Happy Mother's Day to all my bloggie friends out there....

Each and every one of you are rock stars!

In honor of Mother's day, I thought I would tell you all about Mother's Day 2003.

I was 25 years old. Carl and I had spent the day in Asheville NC, visiting some of our favorite haunts. We had plans to take my grandmother out for Mother's day that evening, so on our way home we stopped at a local roadside greenhouse and picked out this beautiful yellow rose bush for her. On the way home, I had slept the entire hour and a half until we stopped. When we stopped Carl commented about how tired I had been for a few weeks and how he had noticed that I seemed "bustier" than usual ; )!
Thanks, honey.

On the rest of the ride home his comments kept running thru my head. No...
couldn't be. No.
When we got to my grandmother's house I made up a dumb excuse that I needed to run to Walmart for a card. Once inside I made my way to the pharmacy dept and bought 6.....
TESTS...

I covered them up with some candy and a few other odds and ends and made my purchase.
Once back at my grandmother's I did the test.
POSITIVE.
NO....I drank about 3 glasses of water and did another....
POSITIVE.
We went to dinner, I said nothing but drank about a pitcher of water and made up another excuse about the bathroom and did another, right in the restaurant.
POSITIVE.
When we got home, another test.
POSITIVE.

By now, I was pretty sure something was up. So I packed up all my boxes and cried my eyes out for a while at the local park by my grandmother's house. Finally I decided I had to tell Carl but I was so afraid he would be upset.
We both always said we didn't want kids.
The only thing I could think to do was go down to the lake and sit on the dock.
The words would not come to me....
I sat for about half an hour before I finally opened my purse and dumped out all the boxes and tests on the dock.

Carl was speechless...
He picked up each one and looked at them all. Finally he said "does this mean we are having a baby?" I still couldn't speak, I just cried. He jumped up and started hugging me and crying too! He was so happy!
That night I took another test...
You know...just to be sure. And the next morning, I left work before the store opened and had another test at the doctor's office.
POSITIVE.
The nurse laughed her head off at me, when she heard I had taken over 6 tests!

So this is how we found out about FAITH.
On Mother's Day...
This rose bush was planted at my grandmother's house, that night. A night that we will never forget. When my grandmother died, 7 weeks before Faith was born, I went and dug it up and moved it to our house. Then when we built our new house, it made the move with me, again. Every year, it blooms within a day or two of mother's day and this year is no exception. I found this beautiful bloom, yesterday night!
Every year, it is a symbolic reminder of my first mother's day. And a reminder of how life can flourish even when things change.
BEAUTIFUL!

HAPPY MOTHER'S DAY, EVERY ONE!

Knees...

2010-05-07T07:50:00.000-04:00

Next week on Tuesday, my mother will be having total knee replacement surgery.

She suffered a traumatic horse riding accident when she was 16 that did severe damage to her left knee and required major surgery. That was nearly 40 years ago. Her knee has grown weaker and become more painful during the last few years and has gotten to the point of no return. Her surgeon said her knee was one of the worse knees he had ever seen. She got a dx of severe osteoarthritis, irreparable ACL damage and a few other things I can't remember.

My mother lives alone and has no family who can help take care of her so it falls to me.

Faith and I will be traveling to NC, next week, to help her recover. I am very anxious and not looking forward to this trip. First of all, it is a six hour drive....one I have only made twice by myself and never with Faith, alone. Second, my mother is going to need 24 hr care for at least a week following discharge. Third, she is going to be completely incapacitated for a period of time and requiring daily injections of blood thinners. Fourth, my mother is not easy to live with under the best of circumstances.

I feel responsible to go take care of her. I am the oldest child, the responsible one. The only person with care giving experience and medical training. I know she needs me.

But this is going to be.....difficult.

Dealing with her and keeping up with Faith, all by myself. I am very nervous. All kinds of terrible visions float through my head.

I know I have the capacity to do each, individually. But both at the same time....

I pray for strength, determination and patience.

I don't really know what that week will hold but I know it won't be easy. She asked me to stay for a week when I bring her home. I haven't said yes for sure but I am making plans to try to stay, if I can make it that long.

I sure pray that I have the mental fortitude to keep up with everything. One thing I am worried about is if I need to leave the house. I love having a pajama day as much as the next but a week without leaving the house? I don't know if I can take that. Not to mention that my mother lives very simply, she has only one tv with two channels...no living room furniture...no house phone...no extra beds. It's going to be interesting, people.

I have been trying to problem solve with some alternative options but none have presented themselves, yet.

I just hope I don't go crazy. If you hear a national story about a crazy 32 year old mother jumping off a NC high rise, you'll know who it was!

Can I please have an extra day in the week?

2010-05-06T08:09:00.004-04:00

Ever since Faith came into the world, my time has been consumed by doctor's appointments, specialists, surgeries, research, therapies and driving thousands of miles.

Therapy takes up the largest amount of our time, as it does in most of your households. Unfortunately, we have a crazy long drive to each therapy.....like over an hour, one way. This week, we started Faith's AAC therapy to teach her to use her iPad. So here is a rundown of our new therapy schedule.

Monday: OT-10am-11am....30min drive

AAC therapy-12pm-12:45....another 50 minutes from previous therapy

Pool therapy-1:45pm-2:30.....15 min from previous therapy

Wednesday: PT-1:15pm.....1+ hour drive, one way

ST-2:00-2:45pm, same place

Friday: Therapeutic riding: 11am....45 mins away

This is just our therapy schedule, not including doctors or evals or Girl Scouts or Parent Fundraising responsibility for our therapy center or say....

cleaning my house, feeding my husband (and myself), feeding the dog or getting some sleep.

Oh and did I mention we are preparing to start homeschooling in a few months?

ARGGGGGG! I just need a few more hours or even an extra day to get all this stuff in!

I know I bring all of this stuff on myself (or Faith, as the case may be) but I feel like I should take advantage of everything they offer for her. You never know when the state's medicaid system is going to fall flat on it's face and all of us will lose all of our therapies! Really I am complaining about my driving time, I think. I spend most of my time in the car and it feels like that is precious time I could be doing 50,000 other things. I figured out we spend no less than 10 hours each week in the car...about 400-500 miles each week. The last two years I have put 70,000 miles on my car...and I wasn't going to the mall, people!

Crazy.

Anyone feel like sending me a chauffeur?

Ipad apps....

2010-05-03T07:42:00.003-04:00

Ok, forgive me for not getting up on this sooner, we have been extremely busy. Below are a list of apps we have been downloading for Faith to try:

Look to learn: An AAC app for simple communications like "I want" things. You can download your own pictures to add to the list. You can also download pics to make a sort of story for teaching steps to learn something. You can customize the voices and several other topics but you can't really change the "I want" category....everything is "I want"....... This app is $25. I like the options to add pictures which we did but I wish you could change the I want category to be a little more functional.

Fish School: Just a fun educational set of games for young children. Fish move around in ABC forms and 123's, you can play with the fish and make them big or swim fast. The voices for this app are really cute and Faith loves this one! Very interactive and great for little kids. This one is .99

First words: This app is not worth spending your .99 on. It does show about 40 flashcard style pictures in categories but there is no sound or words or anything. Very disappointed.

Animals Soundpad: A very simple app with about 20 flashcard style animal pictures on one screen that can't be changed. When you press the animals they make the appropriate sounds. It's a cute one that Faith likes. I wish the pictures were bigger because she cannot isolate individual pictures but she likes that she can push a bunch all at the same time and they all make their sounds. This one was .99 (but there is a free similar one that is much better)

Trucks- ipad edition: A free app that shows big pictures of different heavy trucks and says the names. Faith likes this one but it is very simple.

Vocal Zoo Gold: A free app that is similar to the Animal soundpad but better. You can rotate your device and get different views. Horizontal will give you rows of animals and when you touch them you get the sounds. Vertical will show individual animals with their sounds and the word spoken. We love this app!

All of the ABA flashcards apps: Faith loves these, we downloaded several on Friday, the last day of the freebies. We got to keep them, so we are extra happy! Faith really enjoys the clear and beautiful pictures, her favorites are the ones that have the music. All the ones we have are wonderful! Worth the .99 per app!

Tap2Talk: Ok people....This app is a very simple free version of the recently released AAC PECS. This program is an AAC system specifically for Nintendo DS and DS lite! Very cool program for children who do not have dexterity issues and a cheap way for families to help their kids. For the Nintendo's the price is $99 per year. It's very cool! Now, the app for ipad is very SIMPLE but a good starter for kids just learning how to use AAC/PECS.

We started Faith's new AAC therapy yesterday. I have a whole list of other things to talk about but it will have to wait for a less busy day.

Treating our kids special....

2010-05-02T07:49:00.006-04:00

Wonderful Ellen, had a post yesterday about people NOT treating Max special because he had a stroke. It's a great post and in many ways, I feel the same. But I wanted to add a few things about my perspective....

Don't treat her special by giving her anything she wants.

Don't treat her special by not calling her out if she misbehaves.

Don't treat her special by talking over her...like she can't understand you.

Don't treat her special by pitying her, this girl is happier than most and you can't pity that!

BUT...

Treat my daughter special because she is!

Look at her as a living miracle and take what you can from learning about Faith

(not her name but the word....faith)

My daughter is special because she was made this way to teach people to be thankful for God's infinite wisdom and love to HIS children. She is one of those children who

"SPEAKS" to you without having to say a single thing!

When people meet her...they usually say things like...

"What a blessing she is"

"What a good girl she is"

"She truly is a miracle"

GOD made Faith the way she is for a very special reason and I DO want people to take that into account when they meet her!

I want them to see her for the miracle she is...

I don't want ONE person to ever meet Faith and go away without being

TOUCHED BY GOD'S LOVE......

It's Heeeeeere......

2010-04-30T21:26:00.004-04:00

After an ETERNITY of waiting...

THE IPAD IS HERE!

We were all on pins and needles, last night, waiting for today to come!

We had to wait until after lunch but it finally got here.

I was so excited to get it turned on but it took a lot longer than I expected to get thing thing up and going. I will say that it does NOT come with an instruction book. There was a small 5 page booklet but it did not give any instructions. That part was pretty frustrating since I have never owned an Apple product. I couldn't figure out how to turn it on. When I tried to it would turn right back off. Turns out I had to download Itunes to my PC, then to the Ipad, then register everything, then make up passwords for about a dozen different subjects.

But finally after about 4 hours,

I GOT IT TURNED ON!

Then I had to figure out how to access everything....

Another almost 2 hours....

But finally it got up and running and everybody did the happy dance!

We downloaded a few free apps...

Some ABA flashcards..

A piano....

A free version of Tap2Talk.

Faith was on cloud NINE!

Carl was on cloud NINE...

Heck, I was on cloud NINE...

(After making peace with the thing!)

She quickly remembered it and began trying out all the little pictures.

She really loved the ABA Zoo animals flashcards.

(this is the free app for Tap2Talk, very cool free tester if you are considering the Proloquo2Go.)

I think that I will be doing a LOT of posts about our experiences with Faith's new tool.

I plan to get some video of her using it, up when Blogger will cooperate!

If anyone has any questions leave me a comment and I will try things out and find the answers thru trial and error.

We also got a Square Trade warranty for her Ipad...a two year warranty for less than $100 that covers dropping, spills, defects, failures and the like. So we are covered, hopefully!

Check back with me over the next few days, I will be blogging about our fascinating journey with this cool device!

Quicky Update.....

2010-04-29T20:21:00.003-04:00

Just a quick update! I finally called Apple, today, to find out what was going on with our Ipad. I got the news I was praying for!

It will be in our hands tomorrow by 4pm!

I am sooooooooooooo excited!

I just checked the tracking and it is en route in Tenn., just a state away!

Did I mention I am soooooooo excited?

Faith's world is about to open up and I feel like I have wings....

I am sending off an email tonight to the AAC therapist to prepare to start our new therapy next week (I hope).

Be sure to check back tomorrow....I have the camera all ready to photograph the big event!

Faithy I sure hope you are as excited about it as I am!

Lessons learned from a six year old....

2010-04-28T21:00:00.000-04:00

Faith has taught me so much, in her short six years.

Before I had kids...I thought that the parents were the one's who did the teaching!

Boy, was I wrong...

1. LOVE...... unconditionally....beyond words....totally.
(Like when she wakes up in the morning and reaches out to me for a hug and a kiss or when she carries her baby doll around and treats her like a real baby.)

2. NEVER....EVER.....Give Up! Even if EVERYONE else tells you to, even if medicine tells you that your child is worth....less... than other kids.

(Today, Faith saw me pull my pants down to go to the bathroom and she started trying to pull her's down, too. Embarrassing, yes, but priceless!)

3. Have JOY....every, single day. For the rest of your life! Find your joy in the little things...in the big things....but find it!

4. This is a big one.....SACRIFICE.... It's the name of the game we were forced to play!

Society has taught us all that we should be selfish, think of ourselves first, get ahead of others. But sacrifice is really the test of a true Christian...of a true loving person. Sometimes that means no dates for years or waking every couple of hours to make sure your child is still breathing. Sacrifice, to me is the ultimate test of love. I am humbled to say I have learned how to sacrifice, without condition...without resentment.

5. Be carefree and silly at least once a day! I love to see how carefree Faith is. She doesn't worry about anything...just like the lillies of the field. She wakes up happy and goes to bed happy. This has been a hard one for me, since her diagnosis, but she is working on me! Today, we made a big water mess all over the kitchen, in her bathtub, splashing our brains out!

6. Make up cute hair do's to get attention....for your hair..... not your wheelchair!

7. Leave the dishes....sometimes....they aren't going anywhere and if you die and some stranger has to come into your house...well.... you won't be caring anyway! I have had a hard time with this but I went 3 days without doing them this weekend!

8. Buy cute, frivolous clothes for your kid's...when they grow up you may not be able to afford them! And it's ok if they get ruined...they will grow out of them too quickly to get much use out of them. There are few things cuter than my girl wearing Liberty of London dresses and cardigans!

9. Brag every chance you get....who cares if all the other parents get annoyed with you! You gotta celebrate every little victory.... like helping to put braces on or taking steps in a walker! I am the best at this, every small accomplishment gets plastered all over the place until every one is sick of hearing about it!

10. Acceptance....the ultimate lesson learned. No words needed here.

Thank you, Faith, for all these hard lessons you have taught me! They were the ones that no one else could teach me!

Confessions of a bloggie daddy...

2010-04-27T20:11:00.008-04:00

Hi everyone, I have a special guest blogger today...

Carl, my super sweet hubby!

I have been asking him to do a guest post for me and I am hoping to get a few more "daddy" perspectives on here, soon! Here is a little introduction from him.

Hope you enjoy...

Hello everyone! It's Carl... better known as Faith's daddy... or Candace's hubby! I am completely cool being known as with both and proud to both. In fact I was born to be both of those things. I am the sappy daddy sometimes. Everyone in my office knows everything that goes on with Faith, from losing a tooth to any seizures she has to when she does something new. I have about 100 pics of Faith under the glass top of my desk at work and show every new one to everyone when I bring them in. I am not saying this to brag, I just want you guys to know just how much I love my family. The best part of my day is when I come home from work and see those beautiful smiles and hearing Faith yell "DA DA"! The day Faith was born was the scariest, greatest, most amazing day of my life. I love Candace with all of my heart, but that day I really learned what love was. Seeing that little girl that I helped make was unspeakably amazing. The weeks... and years that followed were emotional roller coasters. I was initially SO ANGRY that she had the "problems" she has. I didn't know what the heck C.P. was! Now I have came to realize that she is perfect just the way she is. How cool would it be to wake up every morning completely happy and ready to see what the world will bring you? How many of you can say you do that every day. If you say you do you are lying! ...but she does... and I bet most of your children do, too. She is the best blessing I could ever imagine, and her mom ain't too bad either! Anyways, I hope my first attempt at blogging wasn't too bad. Ya'll have a great day!

April 25, 1994

2010-04-26T22:46:00.007-04:00

I don't talk much about my family life....that is....my life with family, outside of Carl and Faith. As a child, I had a rough childhood, to say the least. When I was sixteen, my younger sister and I were forced to escape/run from our home, for our lives. We both almost lost our lives in April of 1994. It was a traumatic event and a marker, in my life, that is not easy to forget and too painful to discuss in detail, here. When we ran, we had to leave the state to avoid being "arrested" as runaways and ended up in Idaho with some relatives. Eventually we made our way to S.C. where my grandmother lived, to try to restart our lives. When we finally were able to enroll in school, I was in my last four weeks of 10th grade. We were sent to a tiny school about half an hour away that was actually a middle and high school combined. On our first day, I was shown around the school by the Principal's daughter, so I could find my classes. I finally began school in the last period of the day....

Biology.

I was given a seat in the back, near a cute boy wearing a Pearl Jam t shirt and Nike flip flops. During the class, someone passed me a note (insert cute boy here) that read...

"Hi, my name is Carl. Where are you from? Can I have your phone number?"
He sure was cute and very precocious!

After class, he carried my books and let me store them in his locker since I hadn't been assigned one yet. (Bonus Points for cute boy)
He called me that evening and that day began....

Our story.
From that day, we were inseparable. We went everywhere together...ball games, concerts, school events, social events and fundraisers. We just clicked from day one! Our birthdays were just six days apart and he even knew my grandmother (who taught at his elementary school)! We went to our junior and senior prom..
(Yes, we were even prom king and queen!) and eventually graduation!

The summer before we met, Carl's mom had passed away from lung cancer, when he was just 15. So we both felt like God had just lined up all these weird events to bring us together, at the right time.

A few months after we met, a friend of Carl's told me that on the first day of school, Carl had seen me and told his friend that he had seen the girl he was going to marry!
TRUE STORY!
Our story had all the classic love story trademarks. It was like we both just knew that we were supposed to be together. We were young but there was just that knowledge from the beginning!I had friends but I really just wanted to be with him, all the time. We like (most) of the same things, we loved to travel, we liked the same kind of music and even the same kind of food!

We weren't wild and crazy kids...we didn't get in trouble. We did things like working at the animal shelter, volunteering for environmental club trash pick up and the like. We just had fun being together.

I always dreamed of having my "prince charming"....the kind of love that people imagine but rarely have...my grandparent's kind of love. I wanted the love where you just knew that your partner was made for you and you for them. After seeing my parent's marriage break up in a nasty divorce, I was NOT going to have that!
I wanted a best friend as well as a husband.
And I got it!

This man was made for me! We still spend all our free time together, enjoy each other's company and know that we have each other.

Sunday was...

Sixteen years since we met...

Half our lives.

We met at sixteen and this year we are thirty two.

I can hardly believe it! I remember when we used to imagine what that would be like. And I pray for 50 more!

This love was meant to be...Thank you, Lord, for this man!

There is no other person, I could ever invent who would match me more!

Happy Anniversary, Babe, I love you just as much as the year we met! I still feel that exciting love in my heart for you!

H....A....I...R....

2010-04-26T20:31:00.004-04:00

Today, Faithy got her fourth haircut. Every year for the last three years around April.....

I just can't take it any more! I love her hair long but it gets to that point where it is like trying to comb a rat's nest. No amount of conditioner or detangler or comb or brush can get through all those curls....

She had about 8 inches cut today.

In the four cuts she has had, we have cut a total of 27 inches!

This girl is like Rapunzel, her hair grows so fast! She grew over 8 inches in the last 11 months, people!

We usually go to a children's salon but I was at my last straw this morning and it had to go! So we headed to the first salon I could find and I went in and gave them the "special needs" talk first.

I told the girl I wanted to be able to french braid it so it needed to be long enough to do that. In the end curls and wet hair are always deceiving and once it was dry it was much shorter than I had hoped for...but....
hair grows back, right?

Especially in this kid's case!

Note: this was the first time I didn't get to save her hair...it was scattered all over the place and the girl was hurrying us out. :(.....

Charleston Photos and Fun...

2010-04-24T14:27:00.006-04:00

Some pictures from our trip, this week.....

We found out that a plain old picnic bench makes a great practice tool for working on standing and sitting without any one's help. (We are seriously considering buying one for the house!)

Edisto Island...Faith scraped most of the skin off her poor knees that day, walking around on that rough sand...

She really liked to hunt for hermit crabs on the beach.

A tricycle.....Every little girl's dream. Crap....now we need one of these too! She was so in love with this thing, we were so temped to buy it even if she couldn't REALLY ride it.
Our favorite place was the waterfront park on Mt. Pleasant. They had an amazing playground with these cool bucket seats that spun around. Faith had so much fun playing on them and poor Daddy got so dizzy!

MUSC update...

2010-04-21T21:22:00.002-04:00

Well, we made it to Chucktown, safely!

Faith had her epilepsy appointment, this morning. Dr. Wannamaker was very excited about how few seizures she has had in the last three months, just two. He said, clearly, something else was needed to help her.

DUH?

He ordered some labs and we had them drawn, after our appointment. I had always heard that you didn't have to check Keppra levels, like you do with Tegretol, but he wanted a blood level for it. So I asked why and he said that some of the new seizure drugs out there are advertising that you don't have to check levels but that's not entirely true.

Interesting.

So he said that he might try to up her dose, a little, to give her an extra buffer once he sees her levels. We also talked to him about "getting rid" of our neuro back home. He said he wanted us to have someone close to home so if we had an emergency we could get help but he is happy to treat her and see us every few months. Great, that's better than our current guy, LOL!

So it was a great visit. He said that Faith looked better and more alert and interactive than she had been in January, after all those seizures. We will go back in Sept, barring any major issues and we will also continue to see our old neuro (I guess).

We got out, afterwards and did a little exploring around John's island and our favorite place Rosebank Farms out near Kiawah island. Faith had fun looking at all the beautiful azaleas. We also met a wonderful woman in Mt. Pleasant today who has an 18 yr old daughter who had a stroke at birth. She was lovely and we talked for over an hour! I asked her all kinds of questions and I was thinking about several of our friends out in bloggie land when she told me her daughter suffered with infantile spasms. So she gave me a run down of some of their experiences. It was just one of those "meant to be" moments, when people's paths cross. It was so cool to meet her and we exchanged email address' to keep in touch!

We are heading down to Edisto Island, tomorrow for a little more fun before we have to head back to reality. This last picture is at a local off leash dog park, yesterday. Gandy had fun meeting tons of new dogs but I think Faith had more fun meeting them all!

Off we go....

2010-04-19T16:50:00.002-04:00

I am almost done packing...

I got our dog sitter all lined up....

I cleaned the house so that if something awful happens, people won't come in and drop dead from the mess...

I finished the last of our responsibilities with therapy and we are finally home for the evening...

Now we can leave tomorrow morning for Charleston, semi carefree!

I hope.

We are going down for Faith's follow up with the Epilepsy Center. I have my list of questions and requests for the doctor. Our appointment isn't until Wednesday, so we should have most of Tuesday to have a little playtime then part of Wednesday and all of Thursday. We are snagging a few extra days since we are down there.

This coming weekend Carl and I will be celebrating an anniversary of sorts...

Sixteen years since we met each other. Half our lives! I will post a blog about it later when we get home from the trip.

Happy Anniversary, Babe, I sure do love you!

Keep our family in your prayers, as we travel and a few prayers for a good appointment would be helpful too!

Scholarships and a freaky almost accident.....

2010-04-16T13:45:00.003-04:00

I am so excited, we finally got the word today, that Faith got her scholarship to continue therapeutic riding! We got approval for six lessons, six more weeks! YES.

A freaky thing happened, at the end of her lesson, today. The group was walking Faith and the horse down into the cross tie area, in the back of the barn.

Over the cross tie area there is a raised walkway that goes into the top of the barn. Some people were delivering equipment, today and were using the ramp to enter the barn. Just as Hannah, the horse, was walking under the bridge way, a worker started dragging a metal chair across. It spooked the horse and she shied backwards in fright. I started running for them in a panic but Caroline, our instructor quickly grabbed Faith by one arm and dragged her off the horse, just in time before she flew off the horse! Faith came flying off that horse by her arm and Caroline just got her away before the horse tried to take off! I thought Faith's arm was going to be dislocated, as quickly as Caroline got hold of her. It scared the daylights out of me! Faith was OK and just seemed to be surprised but it was such a close call, she could have been killed! She didn't cry and we examined her closely but she seemed perfectly fine. I was so thankful that Caroline was there and prepared. She just moved in one quick motion and before the other helpers even knew what happened Faith was on the ground! Shew....it took 5 years off my life!

I know that horseback riding can be risky but the team is well trained and thankfully well prepared. It hasn't scared me from taking her back, but it did frighten me terribly! It was just a fluke accident. Funny thing is, before we started riding I saw a person walking over the bridge dragging some kind of chain and thought "That isn't very smart to have that bridge there when horses are usually underneath." Little did I know!

FIND J-O-Y....

2010-04-14T21:14:00.008-04:00

A word that is a necessity in my life..

When Faith was first diagnosed with CP (and other junk) it was like a punch in the stomach that wouldn't stop. It felt like things would never get better like life had just stopped for our new family. A feeling in the pit of my stomach, every day that....was awful.

I hear a lot of parents with special kids who are younger struggle with the frustration, acceptance, change, disaster and heartache. I just want to reach out and tell each and every one of those parents that it will get better.

For me, time and faith have been big healers.

When you are in the throws of a diagnosis with a young baby or child it can seem like there is no joy left in life.

I have found that the best medicine for me, is daily J-O-Y. I have to find something each day to give me joy about Faith. Be that a toy that she can turn on or that she stands in her stander for an extra 10 minutes or she tries to say a new word. Some days it's watching her riding a horse, carefree and thrilled. Other days it's finding out that she was really watching me while I dusted the playroom and seeing her, with her own little rag that she found, dusting the floor! This child brings all kinds of joys, to me, every day, in silly things she does or just looking at pictures of her. I also believe that JOY is contagious and overflows into your child. If there was one thing I would want Faith to remember about me is that she saw me joyous, every day, at least once!

I urge each of you to try to find a small joy, each day, in your child and dwell on that. It has helped me immensely to heal and to get thru each day. Yesterday, I found joy in watching her climbing stair (up and down) with assistance at therapy, on land (for the first time). I also found joy in hearing her meet a goal in speech therapy...10 consonant sounds with minimal cueing! Tomorrow, give it a try and see if you feel a little better. I would love to hear about your experiences with finding joy in your child's life! Hopefully, we can spread some joy around to each other!

The cat whisperer....

2010-04-14T20:27:00.002-04:00

This last weekend we spent a lot of time in the yard, cleaning up from winter. Faith is a tough cookie to keep happy when both mom and dad are trying to get work done. She usually fusses and wants to get around the yard. This is two scenes I came across this weekend. Lilly....our stray mouser, keeping Faith company....

I quickly ran to get the camera to get such a genuine display of affection between the two of them...

I know I have talked about the unusual connection Faith has with animals. I am a huge animal lover and always prayed my daughter would love them. But she has a very unique effect on most animals she meets. Believe me, it's weird because Faith is rarely gentle with any of them. She pulls their tails, rubs their fur the wrong way, squishes their necks and generally abuses them....in her most loving way! And yet, they are drawn to her.

Our other cats are the same way and I can't explain it. I know most cats hate small children....(a vague recollection of three yr old me a tom cat and a garden hose....ouch!) But animals just love her. It is especially weird to see a cat climb up on a wheelchair that can roll around!
I sure wish I could explain it.....I know that lots of people say that animals can sense things with people. Who knows? But I choose to believe that GOD has given her a gift....given me a gift...of an answered prayer, small as it may be....

What I believe....

2010-04-13T08:46:00.006-04:00

Today, Ellen, Max's mom posted a great blog about blaming ourselves for our children's disabilities.

So I decided to talk about my perspective on the subject...

When I was 19, I was diagnosed with juvenile type 1 diabetes. I always thought, I would never have kids and when I found out I was pregnant it was the furthest thing from my mind. I had not done the best job controlling my blood sugars but as soon as I found out I was obsessed with testing, every day.

(me when I was about 8 months)

I did a good job (my endocrinologist even said my blood sugars were better than hers) and we were all convinced that our baby would be fine and that we would have a perfectly healthy baby girl.

(The first picture of Faith, about 7 weeks gestation)

Things, of course, did not go as planned. She was turned wrong and had to be delivered via C-section, after 4 hours of pushing. Then she had hypoxia and developed seizures that went unrecognized by the community hospital staff. There was no NICU for her without moving her and putting her into a coma. She had developed a blood clot that lodged itself in the saggital sinus area of the brain that prevented her from getting oxygen. She was NOT OK.

(Faith about 6 months old, you can clearly see the stair step on her forehead that revealed craniosynostosis, a cranio-facial defect of the skull)

Things happened, she suffered a stroke and parts of her brain...died.From the start...I blamed myself. It was ALL my fault! It was...really! I....Candace....held responsibility and blame and control over all that happened to my daughter. At least, that's how I felt back then.

It was a huge burden to bear and I suffered with it for a long time. But grief eventually leads to acceptance and a clearer perspective of reality.

So here is what I believe about Faith and what happened to her...

I believe that Faith was meant to be how she is.

I believe that something may have happened during fetal development that caused her brain/skull to develop abnormally.

I also believe that I should have been delivered at a larger hospital with a NICU, a decision that was ultimately my doctor's. And that the nurses and doctors who cared for her should have identified her condition sooner.

I believe that I am just human and ONLY GOD can control what happens to my child. I can only be the best mom I can be. Even if I don't understand. I am not some special, magical person who can control, fix or change the outcome of a stroke.

I believe that GOD gave us Faith, to show us what true love, sacrifice, commitment and faith is all about.

I also believe that it is absolutely NORMAL for a parent to have those emotions, it's sort of a rite of passage, on that road of grief.

I believe that although it is not easy, although NO parent wants something to happen to their child, although it can be heartbreaking to witness....Faith is MY miracle! She would not be Faith if she were any other way.

Miracles do NOT always arrive with a beam of bright light, they do not always come dancing down the road and tap on your shoulder and say "Hi, I am your miracle". Often they sneak up on you and grab you by your shoe laces and trip you. And at first they can feel like a slap in the face and you want that "miracle" to go back where it came from. But if you give it time and try to learn how to cope....your miracle will flower into this beautiful example of God's commitment and love to His children.

I know that what happened to Faith was not my fault, it wasn't any one's FAULT. Some mistakes were made, things could have been done to catch her stroke quicker. But in the end, she is perfect just the way she is. If I can say my daughter understands love and happiness and compassion...what more could a mother ask for?
(Faith at 11 months old, after her craniotomy. I have to laugh at her hand in this picture!)

Preparations and Ipad update...

2010-04-11T07:47:00.002-04:00

So we are preparing for another trip to the coast in a couple of weeks, to have our second appointment at the Epilepsy Center in Charleston. I think it is a safe assumption to make that our choice to go down there has been a great thing! When they wanted to start Faith on a second seizure med. I was sceptical that she would do well. But since January 22, she has only had two brief seizures. So I guess that's proof positive! I am thrilled and actually feel like things are coming back to "normal" a little....but I always keep my guard up, in the background. Now we have another decision to make with what we are going to do with our current neurologist set up. We have our local neurologist, whom I am NOT happy with, and now the new one in Chucktown. I think we could continue to see both because the epilepsy center is a specialty clinic and on the other side of the state but I don't really want to. I would like to just transfer everything down there and just go there for all our treatments. But it's a little risky because it's so far and if we need MRI's, EEG's or anything else....I think we would have to drive down. I think it's the best choice since the team in Charleston genuinely seem to care about what happens to Faith...and in my book that is the most important thing. I was thinking of asking them if they could wrangle tests to be done, here at home. Then that would alleviate all the problems except the long drive.
On to Ipad issues...
We placed our order, yesterday for the Ipad 16BG with wi-fi and 3G along with an SD converter so we can download pictures. I am so excited to get this in Faith's hands, that I can hardly stand it! I have been getting all kinds of emails with links to educations and aug. com apps and I think this thing will be a HUGE help when we start homeschooling in a few months! We have been talking about it a lot to Faith and I think she even recognizes the name now, LOL! When I spoke with the rep at Apple she seemed confident that they would be shipping these out this month. I was kind of worried that they would be back ordered and we would be waiting for a long time. She said that Apple was pretty consistent with release dates and if anything they may push it back a few days or a week. We decided not to get the extended Apple plan that was $99 since it does not cover human error...so we are going to go with a private insurance policy called Square Trade who provides Ipad warranties for just $95 for two years and they cover accidents and manufacturer defects. We felt like it was vital to have some additional protection since Faith likes to chuck things! So now we just have to wait........

A little help, please...

2010-04-09T16:06:00.002-04:00

OK all of my tech savvy Apple friends out there....

I need some help!

We are trying to identify which size Ipad we should purchase for Faith.

There is a 16GB, 32 and 64.

We know we don't need a 64 so the choices are 16 or 32.

Trouble is I don't know how to gauge how much room that is! I have asked quite a few folks but get conflicting info. I sure would like to get the smaller one and save some money for accessories but I am afraid that it may not be enough. It's not like we can get another one!

We plan to use it primarily for Faith to communicate and for school for her, so a Proloquo2Go app and several others I have seen that I think will work for her. We won't be watching movies but we will put pictures on it for her as well as a calender and some things related to her medical needs.

So if any of you out there can give me any good reliable input I would be eternally grateful!

I have been holding off in fear that I will make the wrong decision!

Feeding update...

2010-04-08T16:02:00.004-04:00

Today was Faith's feeding doctor appointment. We have been waiting anxiously for this one, to see how she was doing with weight and with her eating by mouth. Our doctor, who I speak of regularly, is wonderful and so caring not to mention she leans towards the alternative treatments. She was quite impressed with our feeding log that we kept for a week. Faith had taken in over 350 cals in 8 days! I was secretly hoping that she would say that we could start decreasing a feeding tube meal but she didn't....booooo. Her reason was that she wants to see Faith eating a more regular pattern of meals....at least lunch and dinner every day. Right now we offer her food mostly just at dinner when we are at home. She seems to be less distracted and more interested when she sees us both eating at the table. It is a fine line we are walking, trying to keep her interested without forcing it on her and trying to work out a schedule for something that we haven't done in years! So our next goal is to get her eating at least an oz or two around lunch and then 2-3 oz at dinner. If she does well with this, the doctor says she will probably start trying to go down on a feeding in 8 weeks, when we go back. (crossing fingers...) Faith did not gain any weight, she actually stayed exactly the same but had grown another 1/4inch in the last 7 weeks! I was a little bummed but over the last week she has been extremely bad off with allergies and has not wanted to eat at all, so I attributed the weight thing to that. The doctor also wanted us to add another supplement to Faith's routine. Milled flax seed (you can read all about flax here). We are to add a tsp to her evening meal, just mixed into her food. Doctor says it should help with Faith's constipation and also give her an extra boost of Omega 3's and a few other good things. So our visit was good but with a twinge of disappointment but we have a plan to get to were we want her to be. That's a good thing, right!

Therapeutic Riding lessons 3 and 4.....

2010-04-07T21:08:00.006-04:00

We have an ADDICT here, folks....

Faith is having so much fun riding, she is a natural! Two weeks ago they moved her up to a faster horse, Rose. She did great but her heart stayed with Hannah and we were lucky enough to get to go back to her, last week, due to an accidental switch.

Watching Faith on horseback is a spiritual event. Truly, I have never been happier or more free, watching her.

The faster they go, the happier she is. She is fearless and over the last two weeks....

Prepare yourselves, people....

She has been going out on trail rides....

WITHOUT ME!

They have been taking her out into the trails and I have been staying behind, letting her be...

A BIG GIRL, A FREE GIRL, A REGULAR GIRL, A HAPPY GIRL....

She has also been participating in transfers on horseback. Meaning, she has been doing things like lifting her legs and turning, on command, to transfer to going backwards. It is the first time she has ever participated in any transfers....

EVER!

This GIRL.....

is....AMAZING!

More Augmentative Communication stuff....

2010-04-06T21:24:00.004-04:00

Today, we met with the Aug. Comm. therapist at our therapy office. She is incredibly knowledgeable and up to date on all kinds of neat, new stuff. We have known her for years and off and on had evals with her for different things. Today we met to discuss the Ipad and what our options were and what she thought about our ideas. She is totally excited as we are! She had another speech therapist there to work with Faith on the Dinovox V, another touch screen device that uses the PECS system. Faith had never tried this particular one and she had so much fun! They tried using a stylus pen with her, since she cannot isolate her pointer finger. She picked right up on it and within minutes was tapping away at different pictures. After every successful touch she had to stop and get my attention to show me that she had done it.

So Stinking Cute!

This was JUST the confirmation I had been looking for. Now I feel so much more sure that the Ipad will work for her! I can see her window of opportunity open with the birds flying in and she is ready for something! We discussed all our different options with the Ipad and some of the smaller, cheaper apps that are now available that work similar to Proloquo2Go. I have found two that are under $25 and she suggested trying a few of them first when we are first starting out. Which I think is a great idea to test the waters.

In response to a few questions I have gotten Faith has had some experience with aug. comm devices like the Logan, PECS and a few switch programs. But she has not done well with any of them. We felt like she was just not developmentally ready to understand how they worked but now things seem different. She is receptive to anything with touchscreens and lots of pictures and technology! Not to mention that I have HATED every single one of them for various reasons including bulkiness, weight, ridiculous recording apparatus and stupid PECS books that must be dragged along with various devices just to name a few. So after seeing her responses and the promise of this new technology on the horizon I feel like it is the perfect time to introduce a device to her and so do the therapists. So it looks like this is the path we will go down. I am excited and thrilled at the prospect of Faith being able to tell me things with real words.

IPAD.....FAITH IS IN LOVE....AND SO AM I!

2010-04-05T16:29:00.005-04:00

WOW...

Today, we finally got our hands on a demo Ipad at our local university Apple store!

I didn't even know there was such a place until last week!

Faith was instantly in L-O-V-E with this cool toy/device/(hopeful communication tool)
It is pretty lightweight, compared to other aug. comm devices we have tried (about 1 1/2 lbs). The pictures are crystal clear and incredibly fast! Much faster than our laptop, here at home, with DSL.

We didn't get to play with any of the apps we are interested in but there was plenty to enjoy. Faith preferred the photo galleries (she is VERY visually stimulated, even with her vision issues)

She could move the screen pretty well with just a little practice and was so proud of herself when she scrolled through the pictures!

I know that Proloquo2Go has updated it's program to run better on the Ipad, with larger pics. So we are looking forward to getting our hands on our own device. We had pretty much already made up our minds to purchase this tool, but when I got to see her playing with it, I was SOLD!

We played a few animal youTube videos, which were fantastic, fast and crystal clear!

She seemed to do better, holding it in this position, but I think that the horizontal way will be better for her to see and use. I know, for sure, that we will have to have a platform to put it on her wheelchair. I have been investigating several varieties that may work...one of them was the Ram-Mount tough tray tablet holder.
I know there has been mixed reviews about the Ipad but for what we are looking for....it seems like the BEST option. No papers or PECS symbols or bulky recording devices. We are going to meet with our aug. comm therapist tomorrow to discuss putting this thing to work for her. Luckily, I made friends with the college Apple Rep, who was super nice, and he gave me his card to call them today, to be sure it was in. I called and he said they weren't busy and it was a perfect time to come down. It did get busy while we were in there but we got to play with it as long as I wanted (about an hour!). It was so much fun and I felt so guilty when we had to put it back and leave and little Faith started crying. But we can wait a few more weeks.....
I HOPE!

WASP......

2010-04-01T21:01:00.003-04:00

Today, at Girl Scouts, the children had a very special treat...

A former, Women Air Force Service Pilot from WWII!

This woman's story is fantastic and amazing, of how she and over 1,000 other women in the 1940's opened to door to many freedoms we enjoy today.

During WWII, these women were trained as service pilots to fly military mission, here in the U.S., so their male counterparts could be released into foreign service.

You can read more about this amazing woman and the WASP's here.

Mrs. Lois Nash

She and just over 300 surviving service pilots recently received a much deserved

Congressional Gold Medal, in March.

Her stories were fascinating and I could just visualize what it must have been like to be a female pilot during that time. We all listened with baited breath as she described a failed engine during a mission to transport wounded servicemen.

These women were my grandmother's generation, a generation of women who deserve GREAT respect.

Faith getting help to sign "airplane" to show Mrs. Nash...

Faith's friend helped Faith practice signing and blowing a kiss and giving a hug before she wheeled Faith over and told her to do those things to our guest. I thought that was such a wonderful thing for her to do for Faith and for Mrs. Nash.

I have a special affinity, in my heart, for this generation. These women ventured out and did something women had never done, in service to their country.

What's that quote about well behaved women.....?

PRESENTING....Miss Faith Ann....

2010-03-28T20:44:00.014-04:00

Saturday, was the much anticipated Hejaz Shrine Circus....
Faith was the only child who was presented at the afternoon show, which was kind of cool. She was treated like a VIP. Our escort, Mr. Rogers, saw to it that the children had cotton candy, souvenirs, front row seats and other wonderful surprises! Faith and I both got a special treat...riding on an elephant and she also got to ride a little pony! She was thrilled! I was, on the other hand, was a little afraid when we boarded the elephant! A big feat for a person with SEVERE acrophobia! When I got to the top of the loading platform, I got very dizzy, thankfully someone else was carrying Faith!
But we both made it on the elephant, alive, and once we were on it was quite exciting!
Faith was wheeled up by the whelchair team, and presented to the public as her story of how Shriner's had helped her was told...She was more interested in the people pushing her than the cheering crowd before her!
They gave her a spinner toy, sparkly bracelets, spending money and a VIP pass!

We took Faith's cousin, Parker and one of her girl scout friends.....None of the children had ever been to the circus before. So it was a first, exciting experience for them all!
There was a juggler, bears, acrobats (Faith's favorite), tightrope walker, clowns and an exiting pair of motorcyclists who rode inside of the SPHERE OF DOOM!
After three hours....it was time to end....
All of the kids had a blast! I slipped $6 into the pocket of one of our girls, so she could ride the ponies. She had so much fun, she couldn't stop smiling!

(I think, she thought that she had won the lottery!)

We snagged a few more photos with our host and then it was time to go....

Thank you, Shriner's, for all you do and for your compassion and kindness to our family, our Girl Scouts and for all the children who benefit from the circus at the hospital.

Progress is Progress....

2010-03-26T05:43:00.002-04:00

Lately we have been seeing a LOT of changes in Faith, developmentally. Really for the past 7 months or so. I have no real explanation for it, except GOD working, which is enough for me! She has really been testing me and my commitment to how I will begin homeschooling her, this fall. Let me back up a little and say that I used to obsess over stupid things that I thought she would NEVER do......like.....learn colors or numbers or be able to identify weather. In the last six weeks she has begun to do ALL of these things!
One of her goals in speech is to be able to identify 4 or 5 colors, I believe. After a month of......RED and YELLOW, she can now reliably discern the difference about 80% of the time. Seriously, all we did was RED and YELLOW, every week! But it must be working, right! Also, I have had this video of her, I have been trying to post for two weeks now, with no success, that shows her saying "THREEEEEE". Of course, it ALL goes back to HORSES. We were on one of her favorite reads.....the 2009 Illustrated Horse calender (insert snicker here!) and on every page we would put her hand on each horse and count....one...two....three. All of a sudden she GOT it and started saying THREEEEEE. She, by no means, is doing this in any kind of order, no one's or two's but I'm not complaining! So, now she can put her OWN hand on each horse, one at a time and (if there ARE three horses) she often will say three! Amazing?
Next, I found these weather static cling stickers at the local Dollar Tree. They have clouds, sun, rain, rainbows etc. We hung them up on the back door and every day, we go check to see what it's doing outside. Tough things like rainbows and snow, she can't discern but she knows SUNNY and RAINY, now! If you hold up the two stickers and ask her "Is it sunny or rainy outside, Faith" she is pretty, darn good at picking the right one. She will even add her own version of the correct word as she points out the window! The other day, as we were leaving therapy she pointed up and said "nun-eeeee" (her word for sunny) SO FLIPPIN' CUTE.
So now I am really having to start pushing myself to push her a little more than I thought she was ready for. I have spent hours on the computer, at night, scouring the web for crafts, projects and ideas to re enforce these ideas that she is picking up. I NEVER thought we would be ready to do these things, this year (maybe not any year). It made me think, last night, about the girl who did Faith's evaluations, last fall. She told us that the biggest thing we had to fear, with Faith, was UNDERestimating her. AND SHE IS RIGHT....

More bites.....

2010-03-24T20:55:00.004-04:00

A few months ago I posted some video of Faith eating....

She has been making slow, steady progress. Our feeding doctor wanted us to increase the variety of foods we try with her. So this week, I have to keep a food log, documenting what she had and how much she had. I discovered these toddler meals with pasta and vegetables and different meats. I did try some of the already pureed baby foods but she DID NOT like them. Too bland, I think. So we moved up and tried pureeing bigger kid meals and she seems to really enjoy them. Yesterday, we started with a kid's version of ABC's and 123's with veggies...a six ounce container. I split the cup and saved half for the next night.

This is about 3 oz of food.

She ate the entire amount....all three ounces...with very little coming back out, maybe a couple of baby spoons worth!

She really seemed to like eating the ones with pasta in them...

She IS her momma's daughter!
Then tonight she finished off the rest, just leaving a couple pieces of meat that didn't get mashed up!

When Faith was three, we spent 8 weeks at the Marcus Institute in Atlanta, for an intensive feeding program. She had very little success, despite every one's best efforts and HOURS and HOURS of work, everyday. But now that she IS eating, we are bringing out the old arsenal. We use a NUK brush, to give her additional input on her tongue. I collect the food in a ball on one side of the brush. I ask her to open her mouth and say "ah"...when she does I put the food at the back, middle part of her tongue then roll the NUK brush backwards off of her tongue. This technique was used to elicit a gag response, when she was smaller, to "teach" her how to swallow. Now we don't go as far back anymore, since she has figured out how to make a swallow happen. But we still do use the rolling NUK brush routine and it seems to be a good reminder to her that food is in her mouth and she needs to swallow. When I looked at these pictures, I couldn't believe that MY child had eaten all that food! I feel like it's all a big dream and I am going to wake up and she won't be eating, again. All you moms whose kids don't eat/have G tubes know that feeling of utter desperation in wanting you child to eat. For me this eating seems so foreign...I don't know how do react! I have had trouble with gauging how much is enough, when I should push her, how often I should offer her food. I feel like an alien in the weird, food world!

World Thinking Day....

2010-03-23T08:08:00.005-04:00

Saturday was World Thinking Day for Girl Scouts. A day to celebrate all the different countries around the world. Our troop had Switzerland, kind of a hard one for little girls. Each troop had made a flag for that country and the decision was made to have Faith carry the flag and be pushed by one of the girls with another girl who walked along saying Hello in the native language.

na na na na na na na na......BATGIRL!
Faith had so much fun, two girls in the troop took it upon themselves to go and explore the other booths with Faith. One minute Faith was there right next to me and the next she was across the gym. Scared me to death! But I caught up with them and was deemed the official carrier, to collect all the loot and booty and tag along behind them. They made masks for Carnival in Brazil and Faith actually LOVED wearing hers. She left it on for like an hour!
GOOD TIMES.....

Small Steps....

2010-03-22T16:39:00.003-04:00

Last week, Faith had a small milestone that was not photographed until today...

She climbed the steps at the pool...
She has been able to do the stepping motion, up, for a while but someone had to hold her under the arms....
But this time she was able to hold on to the rail and even actually step..... D.O.W.N!
Believe me, it was not easy, she struggled getting that leg to stay straight while she had to bend the other one. A few slips, a few cheats when she just fell down them but she did it!
She went up and down four times and was UBER proud of herself!
She loved the IDEA of holding on to the railing...

She even made it out of the pool! We were all cheering for her! She worked so hard to hold on and get those legs to work together.

Shoot....looks like we will have to install a second story on the house to practice, now! I knew that handicap accessible house was a bad idea!

Spring...Finally...I think....

2010-03-19T21:25:00.007-04:00

Happy Spring, Everyone!

These photos were taken at the SC Botanical Gardens...

The same place I had my bridal portraits done.

We take Faith here every spring and photograph her in the daffodils.

Usually we do it the first week in March, on our anniversary. But Mother Nature is fickle and has been holding out on us, until today!

FINALLY!

That's what FRIENDS are for....

2010-03-18T19:40:00.005-04:00

I know I have been posting a LOT about our adventures with girl scouts and horse riding and inspirational things. A LOT of sappy posts, I guess. But over the last few months, I feel like I have awakened from a coma. Like GOD has brought spring again, into my heart.

I have had my eyes opened to so many possibilities for Faith and I feel so inspired! With these activities and children I have seen the HUMAN side of Humanity.

so please indulge me....

More adventures in Girl Scouts....

Today, the girls worked on their Five Senses patch...Sounds....Everyone helped Faith play "Twinkle Twinkle".....

Then they played some songs on the keyboard...This was her favorite part...She loved being able to push the keys....

Then two of her friends asked if they could get Faith out of her chair and walk her around the room....

Those girls, I am considering adopting them all!

She was so excited and having her friends there, helping her was a big boost for her....

Some of the moms got in on it and started encouraging her to walk....

Everyone was cheering for her! She was trying so hard. I just can't tell you all about how much these girls have done for MY soul and for Faith. I love each and everyone of them so much! They are so good to her and NEVER leave her out. In this day and age, it is hard to imagine kids being so caring and open and accepting. Sometimes it feels like kids and adults are so self centered and judgemental. But these girls.....Oh These Girls.....

WONDERFUL!

Therapeutic Riding....Lesson 2....

2010-03-16T20:27:00.008-04:00

Today.....

Another beautiful day.....

Perfect for horseback riding....

Today, they worked Faith pretty hard. They had her ride, holding pool rings instead of the handles so she could work on her balance.

When she would ride past the stakes they would stop and have her hang the rings on the stakes...
She did pretty good, although she accidentally dropped one and everyone laughed so she decided she needed to do it again "accidentally"!

Then Faith decided that Hannah the Horse needed some earrings...

Then.....
Faith got to go on her first little trail ride...
Up into the woods, behind the barn....
Up a steep trail with log steps that the horse had to negotiate, all while Faith did not hold on!

She looked so big out there, riding her horse out on the trail.
I had a ball, watching her. And of course, she talked her head off the whole time! Two new ladies helped today and they kept commenting how chatty she was!
Good things, for this mom's ears and eyes...

Kindness and Strangers....

2010-03-15T21:11:00.005-04:00

A funny thing happened to us on Saturday, at a cookie booth sale. We were battling wind and threatening skies and even some hail...trying to decide if we should wait it out or head home. We finally decided to pack up when this lady comes running out to us, from her car. She says "Who are the parents of that little girl in the wheel chair?" A mom points Carl and I out and she comes running over to us, like she was running a race. She says "May I give your little girl this baby doll? I have been keeping this doll for the first little girl I saw in a wheelchair, for three years! I saw her on the side of the road and I ran home and got it out of the closet." I was shocked and certainly touched and of course, let her give it to Faith. She went on to tell us that she had found this doll at Toy R Us and felt compelled to buy this doll but had NOT ONE TIME since seen a little girl in a wheelchair, until Saturday!

She kept stroking Faith's hair saying "You are one of God's angels on Earth, so precious!" She had tears in her eyes and was deeply touched to hear a little of Faith's story. We asked to take her picture with Faith so we could remember her and tell Faith about her when she can understand.

In case you can't tell the doll is a Barbie in a wheelchair!

(Not that I am a fan of Barbie, Faith doesn't own one!

But I had to make an exception just this once.)

Faith has thoroughly abused the doll and wrecked her hair, drooled all over her clothes, and pulled stickers off the wheelchair. But she had most defiantly enjoyed it!

I have honestly met the most amazing people since Faith arrived on Earth. We always run into people who are drawn to her for some unexplained reason. They just feel compelled to get to know her. It is amazing!

Retail Therapy....

2010-03-14T10:25:00.003-04:00

Saturday, we took a trip to the grocery store after Faith had cookie sales and we got rained out.

I used to love going to the grocery but as Faith has gotten older and more mobile, it has become increasingly harder for me. She wants to roll around and get into things while I try to get the shopping done. It has gotten to the point where I have to bring someone else with me, usually, to keep her occupied..

But yesterday, we were in no big rush and the weather was yucky so we just wandered for about an hour and a half. Soon I noticed Faith exploring cantaloupes and I thought....Hey this is great FREE therapy...

So we let her roll around and touch things and feel things and pick up things. She had so much fun and so did we!

She really liked the milk and o.j. aisle because she had handles to grab...

The pet food aisle was also a big hit since there were cat and dog pictures on everything and animals are a big topic for Faith...

Her favorite aisle was the frozen foods because she has an unnatural obsession with doors. These doors were particularly hard for her since the handles were high up and they have that suction on them so she at first needed some help grabbing the handle. But then she finally got it on her own...She was so proud of herself!

She decided she liked this brand of chips...

I thought this was a great shot, she loved the ducky signs hanging in the baby department...
Then she found the floral department with all it's flowers and balloons...She went right to the Dora balloon but we settled for a free latex one from the floral dept. lady.

Proof that Faith has a temper....She got mad at me because I didn't tie the balloon on the right place...
She also enjoyed smelling all the flowers....The hyacinth was a favorite
(I guess because it had such a strong scent.)

So, next time you head out to the store maybe you can think of it as some free therapy for your kiddo...

It was so much fun!