Monday, March 28, 2011

Perspectives....

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.

Tuesday, March 22, 2011

Grandpa and Faith...

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!


Monday, March 21, 2011

Take the Shackles off MY feet...

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.)
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video

Walking requires Faith...

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!


video

Tuesday, March 15, 2011

More "crazy"happenings....

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!

Thursday, March 10, 2011

Spring is here...finally

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.












Saturday, March 5, 2011

Proof Positive...

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!

Tuesday, March 1, 2011

Cerebral palsy awareness month...

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...




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.