Defining Ourselves

How do you define yourself?

Tough question?

When I was young and carefree, I defined myself as an animal rights activist, nature freak!

I was a vegetarian, volunteered to smuggle animals out of the shelter whose times were up, moved dead animals out of the road, etc. etc. etc.!

When I got married and started a career, I defined myself as a working woman bent on trampling over the confines put up by men. I worked harder, came in earlier and generally overshadowed all my male (and female) counterparts.

Now, as seasons have come and gone, I find myself defined by much different standards than the world is used to.

I am defined as a mother, not just a mother, but a mother of a SPECIAL child.

This would be my definition!

I know alot of other moms in our boats don't define themselves as any different than other moms..... But I do.

I DO BECAUSE I AM!

I have seen my child on death's door (more than once)

I have requested sugeries that we knew would be painful but nessessary

I have wept bitterly that my child cannot say M-O-M

I have changed diapers for five years on a child who should be off to kindergarden

I have dosed up more ml.'s of antiepileptic meds than anyone should ever have to

I have cleaned up vommit so many times, it's like a perfume on me now

I have had meltdowns in the pharmacy drivethru b/c her seizure meds were wrong again!

I have snapped at little kids, who ask what's wrong with her

I have broken the rule about not letting your kids sleep in your bed

I have become SUPER _ _ _ _ _(you fill in the blanks) to protect her

A prowling, stalking, ferocious LIONESS!

I have even worried about how many days she has on this earth!

I have fretted and worried and prayed and cried..

I have been CHANGED by this mighty wave.

I am MOM but I am MOM to a SPECIAL GIFT that not everyone has been blessed with!

Sometimes it feels like a curse or punishment but then I see her do something that most parents take for granted and I snicker to myself...

"Most parents don't even notice that stuff, and we get to party everday over the little things!"

AND I AM HER MOM!!!

I can live with that!

Reaching Out!

So, today, Faith had an appointment at the dermatologist. We got there at about 2 pm, half hr before her appt. The waiting room was FULL, about 40 people! We waited for over an hr and 40 mins. for a less than 10 min. appt.! I digress, anyway, we met this really sweet older lady, sitting next to us. She was probably in her 70's. Now, you can get a mixed bag with elderly folks, some are really nice and accepting, others not so much! I guess a product of the generation they grew up in. This lady was super sweet, she spoke directly to Faith and interacted with her for over an hr. She kept talking about how smart and quick to learn, Faith was. (Who IS this person and where has she been for the last 5 yrs) Now Faith can be slow to warm up to people, she plays shy, sometimes. But this time she reached out for the woman and offered her prized poodle toy! She showed off by hugging the toy and making it dance for the woman. She pointed to the different body parts when asked and responded to questions that she was asked. The lady asked about school, now this can be tricky b/c some people are supportive and some (again) not so much! I explained about the SC waiver and homeschooling next yr. She was so positive! She thought it was a great idea and then told me that she had a niece who was profound and was in school and how unhappy her family was with her situation. She just thought it was great that Faith was going to be taught at home! WOW! A room full of people and I just happen to sit next to such a nice lady! Faith was so smitten with her that when we finally checked out, the lady was checking out too and Faith waved to her and called out to her for attention! She said to Faith " I will always remember you!" I wanted to cry! It was so nice to not be judged and for Faith to make a friend on her own! It was great. Thank you, God, for this special woman.

Bele Chere, follow up.

Today was our annual trip to Bele Cher (see previous post) in Asheville NC. We got there early and before too many people were there. We actually found a FREE handicap parking space near everything! We had alot of fun watching the AirDogs jumping and even saw a black st. poodle give it a try. Once Faith saw that dog, she thought it was Gandalf and we had to go meet the dog. It was so cute, a bunch of people with their dogs brought them over for Faith to get to see. We were so excited to find this girl who was selling this line of t shirts that say "Carolina Girls are sweeter than the tea". Now Carl, my hubby, is a sweet tea afficiando! So we had to get one for her! Pink and OH SO SWEET! She was so proud of her shirt! The girl who owned the booth even took Faith's picture to use for her advertising!
Then, this is the coolest thing, they had a massage therapy practice offering free massages, so I asked if they would do Faith. So they did! We were lucky to get the lady and she was AWESOME! She came right over to Faith and introduced herself and Faith reached out for her!! SHOCKED, we were! We got Faith on the massage chair and within a minute she was more relaxed than I can ever remember! She just smiled and smiled and would turn and grin at the woman. Then the woman said " That is the reason I came out here today, was to meet Faith and do this for her!" I just about cried!
Then we found a family who was doing a percussion program for toddlers and Faith got to participate. She got to hold these hollow plastic tubes and bang them together. She was going right along with the beat of the other people! SO CUTE!
We did have a bad experience with the children's area rides. They wouldn't let Carl take her down the inflated slide. We even went to the owner of the rides but it got ugly and Carl ended up throwing the ticket at the man and releasing some inapropriate things to him. We were very upset and we left after that.
All in all, we did have a good time. The weather was very cool, which is unheard of this time of year!

PS. Faith lost her second tooth, yesterday afternoon!
I am going to give a shameless plug to Cosmic Groove- The massage therapy group
www.thecosmicgroove.com
Also to Sweet Tea clothing company- www.sweetteaclothing.com
Thanks for your kindness to our daughter!

Faith's bed

Amy,

You made me think about Faith's new bed as I was reading some of your old posts about adapted equipment, so I decided to post this! PS> See all the ladybug stuff, LOL!

So these pics were taken a few months ago, when we first built the bed. Anyway, we built this cool bed for Faith b/c she was outgrowing her crib. (Yes, she was still in the crib at 5+ years!) We didn't trust side rails and we wanted something that would be a permanant fix. So I had found this super cute twin post bed, yrs before Faith was born, at the flea mkt for $25. I had always wanted to use it for my baby sis' but never did. It was just collecting dust under the spare bed. So we put our heads together and enlisted my cousin's hubby for help to build it. We used laminated wood to make stacked sides that would drop down w/ heavy duty door hinges and slide locks on the posts. The bed started out weighing about 100lbs or so and now weighs prob. 400lbs! It's not going anywhere, I told my hubby that we would have to burn it down if we ever moved! We made taller ends, also, so she isn't going anywhere. So now she has a SAFE bed for as long as she is here in this house. We call it her BIG GIRL bed, and she is so proud of it. I didn't think she would know what that meant but she apparantly does! Including the cost of buying a new mattress and bedsprings it was about 250 bucks, not including the 25 for the original bed. We were very proud!

Bele Chere

I am so excited for this weekend to finally be here! Every year, during the last full weekend in July, Asheville NC hosts the annual Bele Chere festival! We go every year. It is one of the south's largest festivals and is totally free to get in! It takes over downtown for three days and they say over 300,000 people come out. They have bands playing(which are free, too!), Ultimate Air Dogs dock jumping, tons of arts and crafts for sale, street vendors and fun stuff for the kids! It is one of our favorite festivals,ever. Last year, we took my cousin and her family for their first time, and we got to see the dogs jumping after balls into a huge pool. It was so much fun, Faith just loved seeing all the different dogs. We always try to get up early and drive up, it's about a 1 1/2 hr drive for us, so we try to get there before the crush of the crowd and the heat of the afternoon. Asheville is such a cool city anyway, it is home all kinds of funky, unusual characters and stores. One of my favs is Mast General Store, an old time store with barrels of candy, funky clothing and neat shoes. Another one is Chevron Bead store, they have every kind of cool bead you could imagine. It's great to have something to look foward to! I am attaching a link to the Bele Chere webpage, if you are curious about it. It's great!
http://www.belecherefestival.com/

Congnitive Testing

Today, was Faith's first round of actual testing at the Dev. Behavioral Peds. She was working with a young lady, who is finishing up her residency, next month. The girl was very good with Faith, I was worried that Faith wouldn't do well b/c it was a new person and all. Faith played appropriately with the toys given to her. She responded, in her own way, to requests, questions and even showed off some of her ASL w/o being asked to. The girl was VERY impressed with Faith, commenting that the biggest worry we are going to have with Faith is underestimating what she can do! We were extatic! She said that Faith demonstrated high levels of curiosity, high threshold for frustration and an easy going nature! She made alot of observations that even I hadn't noticed before. She said that she was clearly more cognitively developed than we had thought. She also said that she was very patient and was trying very hard to do things "just" right. Like, she had a bear and a spoon and a cup. The girl "stirred" the spoon in the cup and pretended to feed the bear, then gave the spoon to Faith. Faith got the bear in her lap, then she tried to put the spoon in the cup but it fell over, so she dropped the spoon and spent several minutes trying to get the cup back upright and in the same spot. Finally, she got it right and "fed" the bear. She told us that it was a very good sign that she is observant and persistant! Carl and I were on cloud 9! We walked out of there with the biggest smiles you have ever seen! It was such an uplifting visit, compared to our usual "bad news" visits! She said that Faith was very facinating and she though she could come up with alot of good suggestions for us with homeschooling! SOOOOOO HAPPY!!:)

Shackles

So, Faith is a BIG music lover! She seems to like upbeat, catchy tunes like- anything by Toby Mac, Jimmy Buffet(thnks to the hubby), Mandissa, etc. Her very favorite song of all time is a song called "Shackles" by a sister group called Mary Mary! From the first time she heard this song, she would kick her little feet and flail her arms over her head. It's a very fast, bouncy song that talks about being freed from the shackles of sin. Some of the words go like this.... "You broke those chains so I can lift my hands, I just want to praise you.......... Take the shackles off my feet, so I can dance..... but I need you to lift this load cause I can't take it no more!" Now, every time I hear this song, I get choked up b/c it reminds me of Faith and how she is "Shackled" with this load that she has to bear! I can't help but think of her, one day, running down the streets of gold, praising GOD for releasing her from her shackles! I know that God puts things like this in my life to remind me of how precious she is and how lucky we are to have her in our lives! It is such a happy song, if you hear it you just want to dance! It's like Faith's little theme song. I just want to praise GOD for giving Faith to us and letting us have every moment with her! I am sooooo lucky for these "Shackles"! If you want to listen to this song, you can scroll down and look for it on my playlist at the bottom of this blog!

How do you deal with the STRESS?

So, how do you deal with the stress of being a parent of a child with special needs? I remember, at first, when Faith was first dxed, I thought I would just bully my way through all the chaos. I would MAKE myself be happy, MAKE Faith be OK, MAKE our family be normal, if I just set my mind to things and remained positive. As time has gone on, Faith has gotten older and more things keep surfacing. It seems to have gotten harder and harder to keep up appearances and my resolve. Sometimes, it feels like I am drowning in a sea of doctors, therapists, medicines, dx's and bad news. I think "How am I supposed to live the rest of my life like this?" How do you deal with all the chaos?

Surgery

So we had Faith's appt. with Shriner's, on Monday. They said that alot of children, like her, have osteopenia. They didn't seem that concerned about it, but they did say that we really needed to have the gastrox release surgery. We have been putting it off for several months, trying to get her closer to 6. So we decided to schedule it for Nov. She will be in double leg casts to her knees and knee imobilizeres, too for up to 6 weeks. I am DREADING it! But I guess it's better to get it done before we start school, next year. If anyone out there has been through this surgery, contact me, would love to talk!

CaringBridge / faithannhudson / Photos

CaringBridge / faithannhudson / Photos

Osteo- What?

OSTEOPENIA-Osteopenia is a condition where bone mineral density is lower than normal. It is considered by many doctors to be a precursor to osteoporosis. However, not every person diagnosed with osteopenia will develop osteoporosis. More specifically, osteopenia is defined as a bone mineral density T score between -1.0 and -2.5.[1]

So, this is our latest news, received on Friday afternoon. Faith went for an xray of her foot b/c she was having foot pain for over 2 weeks, after a stretching session. No fractures or swelling BUT they discovered this abnormal bone formation. I got the call from our nurse practitioner, who was perplexed by this discovery. Well, of course, I went into panic mode! I hung up and called Shriner's immediatly, got an appt. for Monday morning, first thing. Then I started researching. Turns out that children with CP, children with CP who have seizures, children with CP who have seizures and are on antiepileptic meds and are not weightbearing are up to 6 times more likely to develope this condition. Now it also said in journal after journal that children in these conditions should be monitored closely w/ xrays and routine bloodwork. Now, you ask, has Faith been monitored for this by ANY of the more than 30 specialists she sees? NO<>NO!!!
Never even been mentioned to us, and believe me, I would have remembered! So we are off to Shriner's in the morning, to see what they have to say about this new development. I told my husband that we have to find a new neuro. b/c we just are not receiving the appropriate attentions or concerns for her conditions. This really should have been a case where Neuro was warning us of this potential AND testing her since Tegretol is one of the specific meds listed that can contribute to this. Faith has been on this since birth. I guess it really should not be a surprise since this is par for the course when it comes to her treatment in all areas.
We also had a really bad experience today with a car dealership in Atlanta, I will post more about this later. Just a great ending to a "WONDERFUL" weekend.
Please keep Faith in your prayers.

M-O-M, a three letter word for WORRY!

I am sure that all parents feel protective over their chidren, well most anyway. Being a mother of a special needs daughter has given me a very different perspective on life, in general. Before she arrived, I never thought about carseat safety, electrical outlets being uncovered, toys with small parts or taking a shower in my own sweet time! Now that life is so different, I worry about every little thing on the earth. Car accidents, leaving her alone with ANYONE, blisters from AFO's, her weight (is she keeping up?), her developmental progress, doctor appt's, is she having a seizure, why isn't she sleeping and a whole host of other CRAZY worries. Most mothers in my position can appreciate some of these unfounded, irrational worries that can take over your life. I have had people tell me that I need to get away, just go out and enjoy myself! I just want to laugh at them! How am I supposed to go out and enjoy myself when my daughter could have a seizure or get hurt or someone could forget her meds or something worse happen and I wasn't there? Parents or people in general don't understand those fears. You get to the point where it seems like you are holding this little life in your hands and if you take your eyes off for one second something bad is GOING to happen! Then it is going to be your fault and you will have to live with the guilt FOREVER! I know that I am being irrational, probably a little crazy, but how do you deal with all the responsibility? I love my daughter so much and she is such a gift, how can I just drop that, even for a night out? I haven't worked it out in my own mind, yet. Don't know, maybe I never will. She is my daughter, after all.

Therapy Day

Ah, therapy! Wed. are our major therapy days. Faith did really good in speech, today. She used to never try to make sounds in speech. It was like "pulling teeth"! Today, she had probably her best day ever! She tried to imitate most of what her therapist asked her to. She also is doing pretty darn good with her Sounds In Motion program, trying to make the signs with the sounds. I was sooo proud of her; then we got to physical therapy. We have a new p.t., and Faith is giving her all kinds of trouble. She wouldn't let anyone touch her feet or legs or arms, w/o going stiff as a board and holding her breath! I felt so bad for our p.t.. I suspect Faith has been going through this stubborn faze for a few months. And it just happens to be getting worse when we get a new pt! She doesn't like anyone to try to make her do any thing that feels weird or is out of her comfort zone. She has been bunny hopping for almost 3 years and as far as she is concerned that is the ONLY method of transportation! SO that means no transitions, no scooting, no weight bearing on feet or otherwise. And may God help you if you try to make her. She turns into "Boardgirl", stiff as one, you can't move her or get her to even sit up. I know it's hard and uncomfortable, I just don't know how to break through. We try toys, mirrors, bubbles, stuffed animals and nothing works!
Who Knows? KIDS!!!! When I got home I just wanted to fall over and not move all night!
Oh, wait I have to do this all over again next week????!!!!!!!!!! GOOD GRIEF!!!!!!!!!!!!!!!

TEETH

Last night, after more than two weeks of WIGGLING, Faith finally lost her first baby tooth! I was home with her by myself and I made a game to get her to let me wiggle it. I gave her a box of Kleenex and every time she let me wiggle it, I let her pull out a tissue. This is one of her favorite things to do. Eventually, I could see it was just about out and I reached in and pulled. Out it came, she didn't even cry! When I first found out her tooth was loose, all I wanted to do was cry. For my BABY growing up, for me getting older, for all the hard times that tooth had seen. Stupid, I know, but over the last couple of weeks I got better. So we put her tooth in a zippy bag and under her pillow. I know she had know idea what in the world we were doing putting a tooth under a pillow!! She doesn't get money, so we had the GENIOUS idea to give her a zippy bag full of baby wipes! BABY WIPES, you say? Well, yes, she loves them and we really don't let her play with them much. Remember the tissues? Well, same concept, she can pull them out of the bag til her little heart is content! She was so excited this morning! DARLING! My big girl!

THE FIRST TIME WE HEARD

The first time we heard the words.... Cerebral Palsy. Faith was 5 months old at the time, she had suffered a series of apneac (they make you stop breathing) seizures shortly after birth. We had spent 7 days in the NICU two hours from home, after a traumatic birth at a community hospital. Naively, we had brought her home, thinking our little girl was going to be your average little girl. Then we got the news from her neurologist. Your child is not "normal", she will never speak, walk, be potty trained or do all the things you hope for your child. By the way, have a nice day and don't let the door hit you on the way out! Ok, that last part was our perception after the brief, uninformed visit and a good shove out the door. I remember making it to the car, but not alot else on the two hour ride home. We didn't even know what CP was! Stupidly, we thought it was like downs syndrome. We were ignorant!
After the shock began to wear off, we began the exhausting process to learn about this disorder and what we might expect for her life. We were bombarded with government programs, early intervention, more specialists and bad news every way we turned. I was devastated and brokenhearted. True to what was predicted she was delayed, she didn't sit on her own until 18 months. Most kids do this around 6-8 months. At 7 months, she was diagnosed with a craniofacial abnormality called craniosynostosis. Her skull fused together prematurely causing the brain to be unable to grow. She had her first surgery at 10 months. The neurosurgeon broke all the bones in her skull into pieces, removing several small ones to allow for growth of the brain. She was in the hospital for 10 days. Three days after her first birthday, she had her second surgery, a PEG (percutanious endoscopic gastrostomy), placing a feeding tube in her stomach. On her first birthday she was 15 lbs when most children are up and over 20lbs. This is a "brief" overview of the first year of Faith's life. It was tumultuous and heartbreaking, we spend what seemed like months crying over a sleeping baby. There were many more good days to come as well as lots of hard ones.

BLESSED!!!

Hi, My name is Candace. I started this blog to document a little of life with my precious daughter, Faith. She was born 5 years ago and suffers from a host of developemental disablities including Cerebral Palsy, Microcephaly, Epilepsy and a low grade brain tumor. I have been a stay at home mom since just before my daughter was born. I am hoping to connect with other families and parents going through similar circumstances. Life with a special needs child is well.... CHALLENGING!!! We are ruled by therapies, doctors, medications, specialists and surgeries. It can get very complicated and be isolating, at times. It is hard to relate and talk to your friends when no one know what craniosynostosis is!!! LOL! Sometimes, you want to just scream! Putting that all aside, I was born to be the mother of this child. She is the LIGHT of my life and my only reason for getting out of bed in the morning. She is a "walking" miracle!!! We celebrate every small milestone and give thanks to God for every day we have with her. I am SO BLESSED!!!