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!