Six years ago....

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.

I NEED A SIGN.....

I have something exciting to report......

WE are going out!

On a real date!

I haven't talked a lot about this issue here on my blog but I thought it was a good time to bring it up. Any of you with special kids out there knows that it is difficult, to say the least, to go out and leave the kids behind. For me, it is down right painful. Really painful is not even the word. I have such a hard time dealing with leaving Faith that we have only done it maybe 4 or 5 times.......EVER!

Ever....you say....yes EVER! In six years! It is so hard for me.....I would rather do anything than leave her behind. I feel like it is such a big responsibility to ask someone to watch Faith, she is so high maintenance and with her seizures, most people are....well.....intimidated. Not to mention, that I feel incredibly guilty if I leave her, like if something happened I could NEVER live with myself, if I wasn't there for her. You can only write down so many "what if's...." for a babysitter!

Carl is not nearly so bad as me. He thinks we should be able to leave her with various relatives including grandparents. HE HAS NO IDEA! LOL!

I know I am really BAD. I know I should be able to leave her for a few hours but it is almost physically painful for me to do it. I worry, I sweat, I make up crazy things that might happen, I feel guilty, I cry, I just can't handle it!

BUT I am going to go, this time! Really there's no backing out! Carl's sister agreed to take on our girl for an evening so we can go see....

TRAIN!

Only my favorite band in the world! They are coming to Greenville two days after our twelfth anniversary and this is my anniversary present! I am excited, I am thrilled, I am ecstatic, I am on cloud nine! I am also very nervous and feeling quite guilty! BUT I can't change my mind...the tickets are non refundable!

So wish us luck! I am starting my list of "what if's", today. Carl's sister has sat for us two other times, so she has a small idea of what to expect.

So here we go....

Anomalies....

Throughout Faith's six years this word has surfaced, periodically.

Anomalies....

A hard word to hear.

When she was born it was some kind of anomaly with her blood clotting.

When she was 6 months old an anomaly with her skull formation.When she was three an anomaly with her kidneys and so on and so on.

This morning I got a call from the genetics lab in our area informing me of an appointment that we were currently missing, at the time of the call. (Apparently they sent the appointment notice to our old address....the one we haven't lived at for 3 years!)

So I raced down to the appointment after Faith's first therapy, this morning.

They had not seen Faith since she was 9 months old, so there was a lot to catch up on. I ran down the list of new diagnosis over the last 5 years.

They examined her and took more blood telling me that there were several new genetic tests that they wanted to run, that had come out in the last year. OK.

Then came the discussion about anomalies.

About how even though she suffered a stroke/series of strokes at birth because she had a blood clot in her brain, she still has all these weird other diagnosis that don't usually come with just a CP diagnosis. Things that often look like genetic abnormalities or possibly abnormalities that began in utero even before her stroke.

A very foggy and agonizingly painful topic for me. I have said before that I think that most doctors make generalized assumptions about Faith but aren't really sure what is going on with her or what to do for her. I get a lot of broad brushstrokes when it comes to this kid. Things like "some kids like her just continue to have seizures despite "our best efforts"

or

"WE think that her tumor might not be a tumor but a "brain damage scar" from the insult she had at birth." (interesting....since this "scar" continues to grow after six years...didn't know scars did that and neither did our pediatrician!)

or

"we don't know why she had this blood clot. She tested positive for protein c and s deficiency at birth but now all of our tests show no sign of that!"

She IS an anomaly...

They want to present her case to their genetics panel to get another "consensus" and to try to see if anyone else has any ideas about why she is the way she is.

So here we are again more doctors wanting to run more tests to find more anomalies with her.

It is frustrating when you think after all these years you know everything about your child but as is often the case with Faith, you can be wrong.

Faith's first...

Yesterday was a big deal for our little girl.

Her friend from Girl Scouts (a third grader, mind you) came home to play with her, last night. She had her first friend over! Now some of you may be shocked but Faith does have family friends over and family kids over but this was her first....outside friend!

A friend that she made, on her own, who does not have to be nice to her because she is family or a close family friend...

This is the same little girl whose daddy made the beautiful horse for Faith's birthday. The same little girl who is so possessive over Faith. She has been begging for weeks to come home with Faith and we finally worked out a time, after their cookie sale last night. It was good because she was only able to stay for about an hour and fifteen minutes since Faith had to go to bed. It was just enough time for them to get to play but not for Faith to get overwhelmed or worn out. They read together, played kitchen, played in her room on her bed and ate girl scout cookies (Lemonades, if you were wondering...) together. It was the cutest thing ever!

When it came time to leave, her little friend said "I'm gonna ask my momma if I can spend the night with Faith one night"
Yes, friends, I was bawling my eyes out by then...

She got to see Faith get her night time medicines thru her feeding tube, get dressed for bed and have her diaper changed and she didn't bat an eye! Acted like it was nothing at all!

Then today at our second booth sale she came running up to Faith and hugged her and said " I wanna come home with Faith today!"

Ok everybody, you can all pull out your hankies and have a good cry, now....

Adventures in Cookie Sales....

Cookies....
Cookies....

Cookies....

Did I mention.....

Cookies....Two days after we received our cookies for Girl Scouts I AM SICK OF COOKIES....

I spent about 5 hours passing them out, yesterday and then the troop had their first booth sale tonight- 2 1/2 YEARS....Oh, I mean hours....he he he.

Just a trip to daddy's work, where Faith is followed around by "paparazzi" took almost three hours! She sold over 150 boxes just at his office and I am pretty sure we have broken 250 by now. Faith had so much fun racing around the side of the road, being pushed by all her little friends. It was the first nice day in a very long time, the weather was almost perfect. The children doctored up Faith wheelchair with posters and paraded her up and down the side of the road. They performed cheers, did pyramids, carried each other around on their backs. It was so cute!
They included Faith in selling the cookies...she passed out boxes and collected money. But mostly she just got pushed around. After about an hour or so she started to wear down and by the two hour mark she was ready to go home. I leave you all with pictures from our first adventure, tonight, and promises of an exciting next post. A first for our rock star girl scout....wait and see!

Discovery...

I thought this sign was an appropriate explanation for life with a kiddo like Faith.....
A trip to the museum is ~NEVER JUST~ a trip to the museum...

Yesterday Carl had the day off to go to a doctor's appointment with us. Perfect time for a trip to the new Children's Museum . We had been wanting to go for several months but weekends are too busy for Faith. We had a blast! It had all kinds of interactive, hands on, tactile things to play with. A race car area, a space shuttle, a grocery store with tiny little carts (Faith's biggest weakness! She loves shopping carts!) and all kinds of groceries on the shelves that would actually scan.

They had a garage band room with all kinds of instruments, a sound area with Blue Man Group themed sound toys and all kinds of crazy lights. There was a little farmhouse with little everything for smaller kids- like animals, things to pick like flowers and vegetables, a little kitchen. They even had a cow that you could milk~ but Faith was afraid of it~! Lots of things that she could get her hands into.
GREAT THERAPY...
She worked on picking things up...
standing....
reaching....
activating things with buttons...

pushing and selecting items for her shopping cart...
driving....
brushing....
Hey,it's not everyone else's normal but it's our own version.....

Where does the time go?

Here are some pictures of my sweet girl during the last three years.....

Faith and her cousin share a moment at a cool playground in Brevard NC..

Faith and my littlest sis, recovering from a long day at the beach...

I have this picture blown up in black and white, in our bathroom.
We call this her praying picture...

Folly Beach, SC 2007...She looks so carefree and joyful.

Every year we take Faith to the Botanical Gardens to have her spring pictures made.

When Carl and I got married, I had my bridal pictures made at this very spot. It is a family tradition that we do on the week of our wedding anniversary in March...

She looks so little to me, here. I just can't believe where all the time has gone...

This was at our old house when she was barely three. This was one of her favorite modes of transportation when she was smaller and couldn't get around. My little sis would drag her all over the house by that yellow string. And that string is still on that laundry basket, today! I look at these pictures and just can't believe how quickly time has gone by.
I sure do love that little girl....

Tickle Monster...

YOU WILL NEED TO PAUSE THE MUSIC AT THE BOTTOM OF MY BLOG...

I love this about Faith...
She GETS tickling! She loves to tickle everything.....pillows for example.
Sometimes she just does it out of the blue, we might be sitting on the couch, together and she just reaches over and starts tickling me! She knows it's funny and the louder we scream, the funnier it is, to her!

Even though she doesn't talk, she has this THING about her. She GETS things. It's really hard to explain to people who haven't met her but she has this uncanny knack for reading into what people do and say. It's very strange to me. Sometimes Carl will say something and I will give him the "look"- you know, the "you are ridiculous" look...and she will just crack up, starts screaming and laughing and slapping her leg. Like she gets what I am saying with my face! It's so weird!

It always surprises people who haven't spent a lot of time with her or have just met her. I secretly think that it's her special gift that GOD gave her to show people not to assume anything. That kids who don't talk and who have severe physical limitations can be these DYNAMIC, FASCINATING, COOL people! I think of her as this huge personality in this tiny, little, different body! She is instantly the center of attention when she comes in a room and not just because she is in a wheelchair. Which is so strange to me b/c I am NOT that kind of person. I prefer to be OUT of the spotlight. It's her personality, it's contagious! People often leave her with big crocodile tears b/c they are so moved by her happy go lucky attitude. I regularly hear people say..."you guys are so blessed by that happy little girl."

And they are right....

Knockin' on wood...

OK, I am knocking on wood, as I write this post. Believe me, it is nothing short of amazing! For the last few months, Faith has showed a dramatic interest in F-O-O-D! A four letter word, in our house... Many of you know this phenomenon all too well, kids with CP and food often do not go well, together. Faith struggled from day one, she never cried for food, never wanted it and would fall asleep just to avoid it. We would spend hours and hours and hours trying to keep weight on her. For the first year of life, feeding could take up to 8 hours a day! It was awful! So when she turned one, we opted for a g tube.

In 2007, Faith and I spent 8 weeks in Atlanta at the Marcus Institute's inpatient feeding program. She had just turned 3 when we went. She and I lived down there by ourselves and BOY was it hard! I hated every minute of it... They mostly work with autistic kids and their program is largely ABA techniques. She did not do very well, to say the least. They were never able to teach her how to swallow. We measuring food, vomit and drool 6 times a day, as they fed her. Food intake was in MINUTE amounts and most everything came back up. We had HOURS of training on all kinds of techniques for feeding, including Vital Stim to stimulate swallowing, all to no avail.

When we returned, Carl and I pretty much gave up on feeding her. It was so stressful and terrible for everyone.

Now she has had three years to recover and develop and she has made this amazing step. I am afraid to even think it could be true! After all, she has had a g tube for five years now. But she IS swallowing some food...I watched her closely tonight, she had about a tablespoon of potato and she didn't drool anything out. Her shirt was dry! She kept begging for more! Not getting my hopes up too much, but maybe one day......

A great book for all you out there with kids with seizures

I have recently discovered a great program that I just had to tell you all about. In South Carolina we have a lending library at the USC School of Medicine Center for Disability Resource Library in Columbia, SC. http://uscm.med.edu/CDR/ . This program lends out books, videos, research and children's books to anyone interested in disabilities, special needs or other medical problems. You can visit their website and choose the books you want to borrow. Anyone in the country can borrow from them. If you live outside of SC, they will ship the books to you but you are responsible for the return shipping. I just got my first box this week, five big books and the shipping was 4 bucks. In SC, residents can borrow books and the library sends a return postage mailer sticker, so you don't have to pay to send the books back. Anyway, it's a fantastic resource for all of us out there who may need access to specific, detailed medical info about our children that you can't find most places. They have books on most all medical subjects on disabilities.
I borrowed a bunch on CP, some kids disability books and a book on seizures in children. Now I highly recommend this book to anyone whose child has seizures. It's called Seizures and Epilepsy in Childhood A Guide by Freeman, Vining and Pillas. This is the first book on pediatric epilepsy that I have read and it is very informative. Although it was published in 2001, it is not dated and has tremendous info for parents like us. They discuss meds, surgeries, parenting and other relevant topics. I read this book in about 3 days and have felt so much better since I did. I am so excited about this program b/c we have such limited resources where we live and I can't keep buying books brand new. Check it out, if you can!

Added note: I did some looking around and alot of other states have disability resource libraries. If you go to the website I listed at the top you will be taken to their home page. Scroll down to the bottom and there is a link to find other libraries. You should definatly look into it!

PRE- HEALING....

Once again, I am posting a blog in response to DR. Boucher's blog Therextras

(www.therextras.com) call for a fall blog carnival .

Check out her great blog for therapy talk and lots of great advice about equipment...

My story about HEALING is actually PRE-HEALING.....

... about how GOD gave us Faith's name and how HE prepared us to be healed by HIS name before anything was even wrong.

It was May 2003, my husband and I had attended a couples WEEKEND TO REMEMBER prgm a month before. A very good prgm for any couple who wants to get closer to each other and closer to GOD. A month later, Mother's Day, we were on our way to my grandmother's house and my hubby commented that I "looked" different. Well, later that day after 8, yes 8, pregnancy tests, I had the reason.

We were not planning for children, we had a nice life w/ two incomes, busy schedules and could do whatever we wanted. After the shock wore off, I knew I needed to be seen by a doctor b/c I am a type 1 juvenile diabetic. So we made our appt. w/ the local OB. My pregnancy was confirmed and we spread the news around our family. I was about 7 weeks at the time. Within a few weeks I had an appointment with my endocrinologist. For yrs, I had been trying to get approved for an insulin pump, but was denied each and every time for a variety of reasons. Well, when the insurance co. found out I was expecting, they had an insulin pump waiting at my doctor's office! I was so thrilled, words could not explain! On my way out I made a turn, going a different way home. I was passing down Faris Rd. in Greenville, SC and was thanking GOD for providing this precious piece of equipment for me and my baby. As I drove, I passed a church at an intersection that I had passed hundreds of times. FAITH WORSHIP CENTER.

Mind you I was less than 9 wks along, no where near being able to find out the sex of the baby.

I saw the church sign and I knew that GOD was telling me to name this child Faith. There was never a doubt in my mind, I knew that I was carrying a girl and that God was doing something very special. At the time, we took it as HiS way of telling us that our child was going to be healthy and that my health conditions would not hurt her.

My pregnancy went great, I was healthy, my blood sugars were great, I had dozens of ultrasounds, everything was perfect. My doctors decided that they wanted to induce me a day before my due date, because they were concerned about her getting too big. So I was induced on Jan. 6th, 2004. After over 24 hrs in labor, mecomium discovered and inconsistent contractions they decided on emergency c section.

Faith was born at 9:20 pm, they discovered that she was not positioned correctly and she had irregular breathing. She was whisked away with my hubby hot on their heals carrying a promise to me to not leave her sight. Our hospital did not have a NICU, it was a community hospital with very limited resources. When I finally got to see her, she was 3+ hrs old and they said that she had had some breathing difficulties causing her to turn blue, but they were not overly concerned. So I held my child and looked at her, knowing in my heart that this was what she would look like. Within the hr, she had stopped breathing twice and they took her away to be put under oxygen. We waited all night, trying to understand what was going on, with little word. By morning, it was clear that something was very wrong with our girl. A visiting family doctor on call, came by and recognized her episodes as some form of seizure. Within hrs, an emergency transport team had arrived to carry our new baby two hrs away while I was left behind still groggy from the Cesarean.

By the next day, I was walking on my own and desperate to get to my husband and daughter. When I finally arrived, they had discovered sagital sinus thrombosis (blood clot in the brain) that had deprived blood flow to Faith's brain and caused a stroke, damaging most areas of the brain, especially the white matter, sagital sinus' and ventricles. They had induced her into a coma to keep her seizures down and try to give her time to resolve the clot. She spent 7 days in a medically induced coma, 7 days that we slept on the floor of the NICU waiting room, except for 1 night. They performed EEG's, MRI's, CAT scans, spinal taps and other abbreviated tests on her. She looked like a pin cushion, covered in in wraps, band aids, iv lines and feeding tubes.

After her first 7 days, GOD resolved her blood clot, without medication. It just went away. The doctors said children can often resolve them on their own, but we knew it was a miracle.

She came home with us, monitors, meds, checklists, feeding schedules. Life carried on, we thought she was going to be your everyday average little girl. But at 5 months, she was dxed with cerebral palsy, a muscle coordination disorder associated with brain injuries like hers. Then more dx's followed, surgeries, feeding tubes, more doctors.

Time has passed and they say that "Time heals wounds..." but we know different. GOD healed us through giving us FAITH. He gave me her name to strengthen us, resolve us, reassure us and encourage us. There have been so many times when her name has appeared on street signs, church billboards, picture frames, thrift store signs and songs. Each time I see it, I know that GOD is reminding me to be strong and put my FAITH in HIM. Our home is filled with signs, quotes and knick knacks that others have found and found meaning in, for us. I know that if we had just chosen a name out of a baby book, things would have been different. We would not be where we are, she would not be where she is, other people who have met her would not be where they are and HE might not be glorified. Of this I am sure, GOD was preparing us for what we would see and experience and HE was also PRE-HEALING us by giving us focus in our lives to make it through. When I see her name or speak it, I am filled with HAPPINESS, GRACE, PEACE AND ASSURANCE that HE has something special for her and for us. I am BLESSED TO BE THE MOTHER OF THIS CHILD. I have never been more sure of something in my life. We still bear great scars and are guaranteed more wounds BUT we were healed by HIM and we have FAITH.

What I have seen, confessions of a mother........

It seems like there is a pattern of posts, lately, about special needs children and their capabilities and potential. So I thought I would toss my hat in the ring and talk about some of the things that I have witnessed as a mother of a child with cerebral palsy.
I remember when Faith was born and all the terrible things that happened. It didn't seem real, but we got all sorts of "bad news" predictions about how she would be. Some were true, some were not and some were close. But I have learned over the last 5 1/2 yrs that potential is what you make it. When she was little, I would watch her and talk to her and wonder "Does she know who I am? Does she understand me? Will she ever be able to talk? Will she ever call me momma?" I used to agonize over things like that. So to answer those questions.... Yes, she knows me! Of course! I am her mom! Yes, she understands me, maybe not every word but if I ask her where is a dog she can point out our dog! Talking? Well, that is still a work in progress, she is making more sounds and some sound like words. But she does have her own collection of languages, both real (ASL) and made up that we can understand. And best of all, this spring, we finally got something that she calls me for mom..... "Ahhhna" Which sounds alot like Mama and will be accepted with pride!
I think that the worst thing for all parents is the uncertainty of what our children will be is magnified ten fold for special needs parents. And the delays in development make things seem even worse, it's like watching paint dry! Every one else's kids are cruising right along past our children, doing new things, going to school, learning to ride bikes and play dress up. While our children are still mastering how to sit up. It is definitely one of the worst things about being a parent like us.
But, everything has a season and all children can progress. Maybe not like others, but in their own time at their own pace. It can be hard for us to see, especially when our special children are very young. For the longest time, over 4 yrs, Faith had NO form of communication. She would watch us talk to her, but never respond other than a smile. Then last year in July, we were waiting outside of her therapist's office for our turn and a little baby girl came out with her mother. Faith reached out and make a gesture towards the baby, so I said BABY and signed the word. All of a sudden, she copied me! She actually did a sign, and did it correctly! I was FLOORED! Called every one I knew to brag on my girl! After that it was like a light bulb was turned on! She wanted me to show her everything! Right now, 14 months after beginning, she has about 40 signs that she can do w/o much prompting. And she is always asking me (with her own made up sign for Help) to show her more, when she sees something new! It is truly a miracle! After 4 1/2 yrs!
I think that sometimes God has to teach us patience so that we can truly appreciate the miracles that go on around us. I used to think I had never seen a miracle, but after Faith was born I witnessed many miracles! I am a miracle veteran, now! And He has taught me patience! I treasure every small thing that she learns or masters, even if it isn't quite how other kids do it! And as Katy from Bird On The Street said, disabilities are part of the human condition. We all have our own things to master and challenges to overcome. Some are just more obvious than others. I have learned about patience, persistence, resolve, determination, strength and most importantly FAITH AND UNCONDITIONAL LOVE! And those are things that not everyone is blessed enough to experience in their lives, truly!
I KNOW beyond a shadow of a doubt that I was born to be the mother of this child, just as she is, just like God made her. And for me that is a big source of pride.

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!!:)

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!!!