Sep 15, 2008

Chloe - The Kid Behind Kidz

Miss Chloe Gayle is our sweet almost-4-year-old who has Cerebral Palsy and West Syndrome. She is the inspiration behind this blog as well as our family blog, endless jubilee. Hers is a life of large hurdles, tiny triumphs, true miracles, and great love. We take joy in the profound privilege it is to be her parents and have come to realize that she helps and teaches us much more than we could ever reciprocate.


This is her story.....

When I found out I was pregnant, although the timing was unexpected, I was thrilled! Oby and I had only been married a few months, but definitely wanted to have children. We found out it was a girl! A girl meant bows, dresses, tights, headbands, pink, yellow.... sugar, spice and everything nice. We named her Chloe Gayle. Chloe from the Bible and Gayle, which is my mother's middle name. I always pictured her with big blue eyes, snowy skin, and long wavy strawberry blonde hair. My girl. I was worried she would like her daddy more than me, he's just more of a kid at heart. But I knew she and I would be best friends who would laugh in sync at everything. I was so anxious to see her, hold her, and watch her grow into a lovely lady. I didn't have specific plans for her, I just wanted to teach her to appreciate her unique beauty, and to find her niche - whatever would make her happy. I just wanted her to be happy, no matter what.

They placed her in my arms and I called her my 'little bundle.' She was so soft and her eyes were wide open. She had my fingers. I had never seen anything more beautiful.




Her days were not easy from the beginning. She looked absolutely perfect, but she seemed to be in constant pain and misery. She was always crying, screaming, inconsolable, and hysterical. Instinctively I felt something was truly wrong, but I didn't want to be paranoid. Colic, they said. There were plenty of good-hearted people with a lot of advice. 'Have you tried wrapping her tight in a blanket?' 'You need to try the football hold. That always worked for me.' 'Just give it six months, it's just a stage.' No, NO. This was not what I had planned. We were just going to giggle and try on different pink outfits all day, but not this, not the constant crying. Her big blue eyes were always red and her snow white skin always wet, a mirror image of her mother, except I had black mascara running down my pale skin. I tried everything I could think of to soothe her. Everything.

I have only a few faint memories of the first few months of her life.... of her crying and me feeling disappointed that my dreams of daffodil days filled with giggles and pink dresses were shattered. And I'm sure little Chloe wondered what she'd gotten herself into!




I remember having to be strong in front of the doctors. I had to keep my composure so they would take me seriously, and listen to what I was saying. Something was wrong with my baby. I wanted them figure it out and fix it. It got so bad, after all the different types of formula didn't help, and I couldn't get in to see a specialist for four months, I went straight to the ER. The doctors didn't mean to be, but they were condescending as they asked WHY I brought my infant in to the Emergency Room when her only real symptom was crying.... It didn't seem to be any sort of legitimate emergency to them.

Finally, I talked to a doctor who realized I was not leaving until I got help for my baby and some answers. He said they would run all the tests, assuring me that he was certain the results would help me realize there was nothing truly wrong, and that it was probably just colic. We did the tests. My husband had to hold her because I was too physically and emotionally exhausted to hold her down while they poked and prodded her, unable to console her cries.

Then we waited and waited. And waited. I started wondering if the delay was because they found something wrong. But as we sat in the cold ER room trying to get comfortable in the hard chairs or the papered bed, I felt an incredible sense of peace come over me. Part of that peace came because Chloe had cried so hard she had exhausted herself into a nap. But there was something much more powerful than I had ever encountered in that room. There were angels wrapping me in a blanket of peace. I have no question of that. I had glimpses of heaven as I waited. I was so comforted by the feeling I had in that room, I thought it meant that nothing was wrong.

But then the angels in white were replaced with a man in white, with an MD tag pinned to his lapel, and terribly unfashionable spectacles. It was the doctor. The feeling of comfort was immediately gone, and I just knew....

It was bad news.

They showed us the Brain CT Scan. I don't think he knew what it was, so needless to say, he wasn't able to explain it to us very well. I was strong for awhile. No tears, just trying to recall the latin I learned in my high school Medical Terminology class so I could translate what he was saying into something I could understand.

When we left that night all I knew for sure was that my baby had a white spot on her brain, the doctor was concerned, and there would be more tests. The nurses and doctors who had been condescending were suddenly empathetic. Everything seemed uncertain and I knew it wasn't going to be easy, but there was a strange comfort in knowing we were finally going to be taken seriously and get the help I knew Chloe needed.

After many tests, Chloe was given multiple diagnoses, the main one being encephalopathy. The brain MRI showed multiple anomoles. She has a thin corpus collosum, periventricular cysts, and calcification in the right frontal lobe. The EEG showed extremely abnormal electrical activity; in other words, lots of seizures.

We were told the cause of these problems was most likely a stroke in utero or infection in utero. We have since ruled out the stroke in utero, so she likely had an infection of some sort. My personal belief has always been that the viral infections I experienced during my pregnancy (Ecol i and food poisoning) affected her development, but of course we'll never know for sure.

We have been to many doctors, trying to get multiple opinions to ensure that she was getting the best care. I wanted to find a doctor who could fix her, but I've come to learn that we don't need to fix her -- if anything, she's helping to fix us.

"Wait and see," seemed to be the only advice we were ever given. I used to resent that suggestion. I wanted firm answers. But I've come to realize that as we do wait through the days, months and years, Chloe helps us truly see who she is -- which has nothing to do with what she can do or how her body works. It's a blessing to see a person in this light, outside of how society determines a person's value. There is so much more to all of us than what we can do or cannot do. This has been one of Chloe's greatest lessons to me.

I wouldn't say that time has healed the pain. Rather, I would say that with time has come wisdom. But I vividly remember in the first days and weeks of understanding that I was being thrown into the role of special needs mother, that it was hard just to breathe. Fortunately, there were moments of spiritual clarity and insight from others that always got me through.

I remember one day in particular, driving home from Primary Children's Medical Center in Salt Lake City after receiving more bad news. Chloe was screaming in her car seat as usual and I just didn't know if I could do it. Then, as silly as it may seem, I saw this three-legged dog on the sidewalk hobbling along with its owner, and the song 'So Small' came on the radio. I immediately went from self-pity to extreme gratitude. There was just something about the bounce in that dog's step, and the lyrics to that song.... I realized that this "trial" would not define me. I knew that how I reacted would create the quality of life and happiness I would experience. I realized how blessed I was to be Chloe's mom and how incredibly strong she was. I knew she was a survivor and I was determined to learn some attributes from her. I knew how much Oby and I loved her and the love we felt from her really was all that mattered, and the rest was just not that important in the grand scheme of things. From that moment on, I took more responsibility for my feelings and actions. I knew it was going to be up to me to choose love over everything else.

Thank goodness for those moments of clarity and life lessons to get me through the tough times. Like when we faced the next big hurdle....

When Chloe was five months old, Oby asked me to come where he was with Chloe. "Have you seen this?" I gulped. I didn't want to get caught in my denial. "Yes, I've noticed it before, but I'm sure it's fine. She has an appointment with the neurologist in two weeks. I'll talk to him about it then." What was happening was her entire body would jerk up, as if she were doing an abdominal crunch. Her fingers would touch her toes. The jerking motions would occur in clusters and the clusters would happen many times throughout the day. This went on for a week or so, but when she started to cry in between the 'jerks' we decided to take her into the hospital. We were told they were 'infantile spasms.' Spasms, that didn't sound like a big deal. They prescribed some medications, including a 6-8 week trial of a steroid to help the spasms. It didn't seem like a big deal.


Videos of Chloe's Infantile Spasms
















A Google search quickly made me realize that Infantile Spasms, otherwise known as West Syndrome, is a very BIG deal. I read that Infantile Spasms cause irreparable brain damage each time they occur. This brain damage causes statistics like these: 90% of babies with I.S. end up with severe mental retardation, a 60% higher mortality rate before the age of 10, and would usually lose the ability to smile and interact. The medication used to treat it, ACTH, cost $20,000 a vial and it took awhile for the insurance to approve the payment. This form of treatment had a relatively low success rate, but the next form of treatment was invasive brain surgery, so it was worth a try. A home care nurse came to teach Oby and I how to give her the daily shot. I thought it would break my heart to stick her with a needle, but it was actually painless for all of us. It didn't seem to bother her at all, so it didn't bother me! The main thing that bothered me were those statistics. I have never prayed so hard in my life. I simply could not imagine a world without Chloe in it or a world without her smile to brighten my days.

After six weeks, the EEG was normal.

Excuse me, did I hear that right? Normal?

Normal. She had not just improved, but had essentially been cured. All I had been hearing was about her many abnormalities, so it seemed nothing shy of a miracle to hear that word. Normal.

Prayer works. Believe me.

She has also been diagnosed with bilateral exotropia, a misalignment of both eyes. I think she is beautiful, and has the most perfect and beautiful eyes in the world. But apparently, they put more merit in what the Opthalmologist has to say about that than what her mother thinks. She had corrective surgery when she was 7-months-old, although she does still have a slight misalignment in her eyes. They say exotropia is not uncommon and is unrelated to her neurologic issues. However, she also has Nystagmus, an involuntary movement of the eyes, which is related to the pathology of her brain. Her nystgamus was minimal enough that we chose not to treat it. However, after an alternative form of treatment, her nystagmus went away. If you want more information on the alternative treatment, just ask.

Chloe has been involved in many forms of treatment including intervention services, physical therapy, occupational therapy, speech therapy, hippotherapy, swimming therapy and music therapy. She uses a lot of special needs equipment, such as her wheelchair, DAFO's, a stander, Benik splints on both hands, and other assistance devices. She is non-verbal, so we've been training her on touch screens with games so she can one day use a speech device (think Steven Hawking). We've also tried many forms of alternative therapy, but have found Anat Baniel Method (ABM) to have the greatest benefit - if only insurance would recognize it as the valid form of treatment as it is.... or if only we were independently wealthy. Our hope is that we can one day afford ABM on a regular basis.

Chloe is currently in a head-start special needs preschool. Sending her to school was a huge step and a scary step, but it has been a wonderful thing for Chloe! She is such a social butterfly and this is a wonderful place for her to make friends, learn, and get excellent care and therapy.

There have been many times, quiet moments with Chloe, when I feel those angels surrounding us again, holding my hand, bringing peace amid chaos, encouraging us to believe in miracles and to never, EVER give up!




I have come to that normal is a relative term. I now recognize that although this journey was unexpected, it is wonderful. Chloe is a blessing to everyone who knows her. Chloe has every reason to be sad, but she is happy, so there's no reason for us to be sad for her -- and certainly NO reason to be sad for ourselves.




She teaches us to enjoy the journey, be grateful for every moment, believe in the impossible, and keep things in perspective. I am so blessed to be her mother. Through her big baby blues she communicates perserverence, determination, hope, love, and just everything good!

Although we have had some negative experiences with ignorant people, most of our experiences involving Chloe and her special needs have been very positive. Probably the most common thing I hear is, "I don't know how you do it." I think so many see this life as something people must endure, but it is so misunderstood. This life is such a blessing and I wouldn't change it if I could.




Chloe has prodded me to take positive action in many ways. Two big parts of my life that were inspired by Chloe. The kidz blog is a place for special needs parents to connect and collaborate. It has been a source of strength and friendship and a wonderful blessing in my life. We also started a non-profit organization called The No Child Left Out Project. We are planning to build a playground that is accessible to people of all abilities in our city. Our hope is to create a place where people with physical limitations are not only accepted or included, but celebrated! We have fund-raised quite a bit of money, but still have a long way to go.

This song was written especially for Chloe by Songs of Love. It explains so much of her sweet, fun and unique personality.







You're amazing just the way you are
Zip-a-dee-doo-dah!
Never, ever, ever give up
Our little girl with big dreams
Celebrating little things
Chloe Gayle, remember - we love you.
We love you!


56 comments:

Anonymous said...

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Vicki said...

What an inspiring story!! So, her brain shows no signs of what was there before? Is she still having little seizures? I'm so intrigued, and yet so thankful to God for this miracle. So sweet...

Natalia said...

Wow. My heart goes out to you. You are inspirational. I'm so glad you were brave enough to go in there and face those ER docs/nurses and made them help your baby, not easy. She is absolutely beautiful...but you already new that! I love your perspective, and am thankful that one of God's special children was placed just where she needed to be...with great parents.

Cristy said...

Tara, you are such a wonderful mom! I am sobbing while I read this. How brave you were to make those doctors help you. I am so happy to read that you will never give up. I am not sure if you know that my brother has CHARGE syndrome and they didn't think he would make it to his first birthday. He was on life support for two years and had SO MANY things wrong with his body etc. He is now 21 and doesn't need any medications or oxygen or anything. He is a miracle just like Chloe!

Celine said...

Oh wow...I'm just stunned. You share Chloe's story with such inspiration, I'm amazed!

Brenda Jean Hyde said...

You and Chloe are amazing, and she is beautiful. I know how hard it is to be agressive with doctors who don't take you seriously. They always underestimate mothers:) Chloe is so fortunate to have intelligent and love parents. I KNOW she will continue to make progressive. {{{HUGS}}}

krissy said...

What a story. You are such a beautiful family. I am inspired by you trust that you knew something wasn't right, and that you kept at it until the doctors took you seriously. I am inspired by her beauty! By your love for her. What an inspiration!

WheresMyAngels said...

I know so many children whom experienced Infantile Spasms, it is one of the reason's I still hang out at a baby and toddler board for parents of kids with down syndrome. Because I know it HAS to be caught early and you have to PUSH the medical field to realize their is an issue. You may already know that kids with down syndrome have a higher chance of Infantile spasms then the typical population. When I first had my daughter Mercede, I was 22. A friend of mine was 18 and had a child with down syndrome who also had infatile spasms, uncontrolled for over a year. I moved away and met another family whom had a 10 year old daughter you had them in the past. They asked if my friends daugther got the ACTH shots and I called and nope, her doctor told her it was too dangerous. I told her to switch doctors and she did. Two shots and her daughter never had another seizure. Please, if you already haven't, I would make a seperate post or change the name of this one to Infatile spasms with video, because it will pick up easier in a Google search. Your video will help other parents. I know their are other video's out there, but their could never be enough. I did have a hard time finding one, a few years ago when a mother explained what her son was doing and I wanted her to look at a video of IS to see if that is what her baby was doing. It was.

I'm so glad you stopped by my blog. Do you mind if I add you to my side bar?

Avery Tales said...

Chloe is beautiful and an inspiration. I'm so glad to read that she's doing well. Thanks for visiting my blog. I'll definitely be back!

Avery Tales said...

Chloe is beautiful and an inspiration. I'm so glad to read that she's doing well. Thanks for visiting my blog. I'll definitely be back!

BloggessJ said...

Chole is beautiful! Hip-Hop huh?

Anonymous said...

Hi Tara, Chloe's story has me in tears! You seem like a strong woman raising a beautiful little girl. I give you tons of credit. I'm adding the Kidz button to my blog, thanks for visiting it by the way!

Chelsea said...

w.o.w. i'm so impressed with what you do and your positive attitude. thank you for inspiring my day to be happier and more appreciative.

Amanda said...

Wow, what a story! I thank you for stopping by and reading my blog. It really is amazing all the little promptings that just keep us going and hold us up.

My 2 year old daughter, Annie, started having seizures when she was 10 months old. We also spent lots of time at Primary Childrens. I wish you luck in your journey!

Unknown said...

Hi Tara! Thank you for stopping to read my blog. When I checked out your blog, I was blown away. What inspiration of hope and surviving and triumph in the face of such overwhelming trials.

I have a seizure disorder myself. I hope everything is going well with Chloe and let me just say... she is so lucky to have two loving, wonderful parents like you and Oby. You are 100% right when you say it isn't the trials you have been given that define you, but how you handle them.

Keep on hangin' in there. You are amazing.

Take care--HUGS!
Jen

Michie said...

Hello -

I'm a severe/intensive special education teacher. I work with very medically involved children. Your blog caught my eye, and I'm very interested in reading more. I love that you wanted to make a website for special kids that isn't so sterile and clinical. It is hard to find information about such special, beautiful kids, and I think your website looks great! I look forward to reading more. Thank you for sharing Chloe's story with us.

Anonymous said...

Thanks for stopping by my blog. You have a beautiful little girl and an amazing spirit. I will definitely be back for more.

Heather said...

My daughter also has some special needs - the one that affects her the most is Sensory Processing Disorder, and then she also has some PT delays and had some speech delays (she had ST for two years but has now caught up in that area, woo-hoo). She also has intermittent exotropia with her one eye turning more severely than the other. We have not had to do the surgery (yet) because so far, glasses are working, but I'm encouraged to read that the surgery worked well for your adorable Chloe.

Anyhow, I'm rambling - I'll stop now! :) Cheers and God bless you and your family, and Merry Christmas too!

Anji said...

You and Chloe make a wonderful team. With a strong mama on her side and her great level of determination the stars are truly the limit for you two. I admire your family and loved the story, thanks for sharing.

Unknown said...

"BUT I KNOW that my daughter is NOT a statistic and our dreams do not have an expiration date."

Exactly, and with your positive attitude, your daughter will excel.

When the doctors told me all sorts of devastating predictions about my daughter, who has CHARGE Syndrome, I refused to let anything stop her.

She is now 16. Sure, it took her longer to learn to walk, but she does things now like reaching the top of a climbing wall.

Enjoy the journey of watching your daughter grow. I promise you it will be magical.

Heatherlyn said...

I am so impressed with your attitude as a parent. You are a perfect mother. How wise of you to see your daughter for who she is and not for the struggles she deals with. Also, good for you for insisting that your duaghter get the tests she needed. The early diagnosis is a great blessing in all of your lives.

Cynthia said...

I wandered over here from your Mom's blog. What a beautiful little girl and more importantly, a brave and determined one. May she continue to grow and exceed everyone's expectations.

Anonymous said...

Tara-

I ventured over here from your blog where I was visiting on your Featured Blog day for SITS.

I also have a special needs child. My daughter has a mitochondrial disorder, a sort of energy metabolism disorder, which manifests in many different ways.

She did not walk until after she was two years old and she didn't talk or babble until after that. She went through all of the Infant stimulation program, PT, OT, Speech, etc...and would not be where she is without having had it. She is 13 now, very smart -- brilliant in fact, but her body just doesn't allow her to keep up with school like a normal child.

I have not ever posted anything about her full condition, but I did post a little blurb about her on my blog...

http://bloggingexperiments.wordpress.com/2008/09/30/my-inspiration-my-muse/

ALSO, here is a link to a story you may or may not have heard. I found it so comforting and inspiring when I was dealing with the first realizations of my daughters medical condition. It's called, WELCOME TO HOLLAND

http://the-callahans.com/susete/poem3.htm


God's blessing to you.

Unknown said...

love that little crowning glory of yours! what a sweet baby girl! 3 of my 4 kiddos are in DT, PT, OT and ST of some sort, and that intervention has shown more results than all the nay-sayers! you go girl!

Anonymous said...

Hi, I came over from SITS!

What a beautiful post about a beautiful little girl. I hope those angels keep surrounding you...I know they will. God gave you her for a reason! :)

jubilee said...

What an amazing little one you have. And what an amazing perspective you have on life. God bless.

Jessica said...

God is awesome! What a very touching story! :)

Anonymous said...

Thank you for telling your story. Yu have a great page. God Bless!

KatieZ said...

She is beautiful and what an inspiration! But I must add that YOU are an inspiration yourself! What a wonderful mother, wife, and person you are. You are so strong, and optimistic! You WILL make all your and her dreams come true!

One Sick Mother said...

Tara

Hi, thanks for your comment earlier. I just stopped by to browse and I feel like I was just struck by lightning.

I have to say a few things:

First off Chloe is gorgeous! I love, love, love those pictures of her sitting on you husband's hand. What a huge achievement!

You and I seem to have a similar attitude to our kids' issues and how to help them. I really believe in embracing the positive and maximizing potential.

And lastly on a very personal note: THANK YOU. Really: thankyouthankyouthankyouthankyouthankyou

Why?

Because I have been baffled here for the past couple of weeks. Confused and confounded as to why a hormone seems to be helping my seizures -to the point where I am starting to be able to tell if it is wearing off. (the prodrome starts again). I had read and researched a LOT (I am the Queen of Google) and found nothing to explain this. I was starting to think that maybe it was an exaggerated placebo effect or maybe I am actually crazy after all (Dr #6½ would feel vindicated).

Then I read Chloe's story and how a hormone was the treatment for her seizures and -although I know I can't possibly have West Syndrome- I *now* know there can be a link between adrenal hormone shortages and seizures.

WOW!

You know that feeling you get when an answer is near? That cold, frozen yet shaky feeling that a Truth is approaching? I have it right now.

I am so glad you stopped by today. You have no idea.

Stop by anytime!!!! ;)

Anonymous said...

Hello my name is Amber and my son is Brandon Pollard and he has the same spasms as your Chloe. Brandon has a brain disorder called Hydreancephaly which means missing brain tissue caused by a stroke in the uters. So I hope you will come by and see his journey through life like I have done yours. God Bless you. Oh wait he already has.

Kalei said...

You told Chloe's story very well. Thank you for that. She is extremely beautiful and absolutely perfect! She is lucky have such great parents, and a wonderful Nana...I was visiting her spaghetti recipe. My best to you and yours. Let me know if you are ever hosting any fundraisers and I will try to support it any way I can! Much Aloha!

Devon said...

What an amazing girl!!! She is so beautiful!!

Thank you so much for sharing your story. It is truly inspirational.

Josie said...

Oh wow- that is an amazing story- you are an amazing woman for being able to go through that! I think Dr's are too quick to prescribe medicine (expecially reglin) just to make the mom feel better. My baby girl was born feb 8 2008 and had a seizure when she was 8 days old and ended up in the hospital for 2 days and that is exactly what we came home with... dont know why..... ANyway- I hope things are going well!

April said...

Wow!!! I totally read your whole story. I am sure you've gotten TONS of support already, but I just wanted to say that the way you are handling this is an inspiration. I am sure every day isn't the same feeling as you got when you saw the three legged dog, but if people stopped every now and then and handled and embraced life as beautifully as you and your family have, I am sure the world would be a better place.

God has a reason for Chloe and your story and your family. So thanks for the daily bit of inspiration!

Chloe is adorable, and always will be!

Anonymous said...

Hi I am the mom of a one year old boy who has infatile spasms. We just found out last wednesday. I met you via u-tube while researching west syndrome. First I want to say how strong you and chloe are. I can relate to your story in many ways. For five months the doctors told me I was crazy and that there was nothing wrong with Sawyer, until he stoped breathing. We rushed him to atlanta childrens and found out there that he had a horseshoe Kidney, PDA needed closed, BAV, PFO, Pulmonary Hypertension, and now IS. I was wondering if Chloe was ever on Prednisone for IS. Sawyers doctors wanted to try that before we go to the ACTH because of expense. Sawyer is on Prevacid and Reglin also. Sorry I was rambling I would love to pick your brain . My e-mail is northflsabrina@hotmail.com Thank you. God bless!

Being Me said...

What an utter delight you and Chloe are!

Thank you for sharing your incredible inspiration, you will probably never fully realise how many people your frank information here will comfort and help them not feel so alienated.

Heather said...

I think you are an amazing mom! My sister was a special needs child. She had a hole in her spine. My mom had to do everything for her. My mom had so much love for her! She has made me realize that you can reach deep down inside and pull out strength you never thought you had for the ones you love. Chloe seems like such a blessing to you and your family. She is a beautiful girl! Thank you for sharing your story...your family will be in my prayers! ;-)

Anonymous said...

I loved your site for kidz and then tonight I decided to sit down and read her story. Wow yours and mine or so much alike. I feel like I have known you all my life just because her and Brandon or alike and our stories are to. Its great to know you and keep up the GREAT work. GOD BLESS YOU oh wait he already has.

Claire said...

I agree, she IS absolutely beautiful =*)

Cindy said...

It's odd how, as a Mother, you just *know* when something is wrong with your baby. My daughter, Reilly has Cystic Fibrosis. It went undiagnosed until she was 19 months. We do treatments daily, and hope that she will far exceed the average life expectancy of 37 years old. Check out my blog. I am a follower of yours, now.

Kimberly Gail said...

Thank you for sharing your daughter's story.

We adopted our son from Kazakhstan. When they read his medical reports to us it stated he had encephalopathy. We were told by the adoption agency and the fascilitators not to worry about it because "it is just something they put in nealy all of the children's medicals". We were told that it was simply a way for doctor's there to cover themselves from trouble if anything ever did arise. We talked to many other people adopting from there and it did seem to be true that many of the children had this diagnosis in their medicals. Nearly two years later as we deal with many delays and "problems" our son has, I have begun to wonder if the diagnosis was in fact real.

I have looked for information on encephalopathy online but it seems very vague to me. Almost as though it covers a very wide range of issues with the brain. I have not been able to make a decision on whether or not it is something that truly has effected my son or not.

Rachel said...

I am so happy that I found your blog through a friend's blog! I have a son with special needs, or as I like to call it developmental delays. I haven't been able to talk to many people who have children with special needs (what my son has is so rare that there is really no one to talk to. Not even most doctors have heard of it and unlike your situation, they don't have much to say other than, I guess we'll see. . . .) so reading your blog was very good for me to be able to relate somewhat and see what other people are going through with their children. Thank you so much for sharing your story and for you great attitude!

Laura said...

Amazing! Thanks for stopping by my blog and leaving a comment so I could come check out yours. Truly, truly amazing. I cannot imagine the blessings and burdens that have come with Chloe. What heroes you guys are! I look forward to reading more :)

Erin said...

What an amazing story, is she still on Topamax? Sean takes trileptal for his seizures. Did you get another MRI? A MRI dx Seans stroke, and closed lip schiz. There are quiet a few of us that have children who suffered an in-utero stroke. I can let you know there blogs if you would like to check them out too. I would love to share my story let me know what we need to do!

If you start at the beginning of my blog it will help.

Here you go

http://family-live-love-laugh.blogspot.com/2008/03/there-is-always-firstright.html

and I to related it to a song and how funny it was by Carrie Underwood too

http://family-live-love-laugh.blogspot.com/2008/03/wheel-of-world.html

Vanisi Family said...

I am so glad you started this blog. It is hard to learn that your child has some form of delay/disability/etc. It's nice to read/gain inspiration from other parents in similar situations, so we can raise each other during dark and gloomy times. Thanks for the light.
Suzanne

Organize with Sandy said...

Thanks for sharing. As a pediatric nurse that was a manager for the ped home care cases I saw many cases of things that "the Dr. said would never happen." It is amazing what are children are capable of even when you are told it can never happen. I don't know if it would help or you have seen them before, but check out the series of CD's for sign language for children called, Signing Time.com Great for toddlers, and may special needs kids to be able to express themselves. They certainly do not have to be deaf to use this and most kids who benefit from it are not. Great series.

Jenni said...

You don't know me, but I found your blog through your mom's blog, who left a comment on my blog. lol. Anyway...I just wanted to tell you thank you for sharing Chloe's story. It brought tears to my eyes. I just became a mother 9 months ago and I have found that I am always so much more moved by stories of children now. Good and bad. Your little one is an angel and how lucky you are to have her.

I truly wish you the best.

Anonymous said...

Mothers need to hear one another's stories, I realized as I read this blog post. As a mother of a child with rare special needs, I thank you for sharing!

Naoni said...

Tara,

what an amazing story. Over the last few months we have found out that my baby had a stroke in utero. I still am not able to post/talk about it and I'm realizing I have truly not dealt with all of it. Just yesterday my sister was telling me to just get it out on my blog because people I don't even know may run across the same thing and here is proof of how random the blog world can be. thank you for sharing!

ArtworkByRuth said...

I have read your blog for a while now, but never clicked on the Chloe link before. I love this post. Glad to join you on this journey with our exceptional kids! God bless!

Kelly said...

That is a beautiful post and you are so inspiring.

Thrifted Treasure said...

I have tears in my eyes reading your little girl's story, she is a beautiful little girl. My middle little rascal has a developmental delay, as yet undiagnosed despite numerous tests and an MRI, I know what you mean about people being drawn in, S is the exact same, people chat to him and cuddle him and he has the bluest eyes and the loveliest smile in the whole wide world. Every one of his achievements is even more amazing for us because he has to work so much harder to progress and we are so proud of him and in love with him. Thank you for sharing your story, you sound like a strong, incredible mum :-)

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jennohara said...

Just came across your blog.
I love it!
Chloe is absolutely beautiful, and an inspiration.
My daughter is blind, so I know how special each and every achievement is. Keep up the great work!

Judy Joyce said...
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