Michelle's Page

 
MICHELLE MA BELLE

My nickname for Michelle is "Belle". I started using it because of the Beatles song but it also became a favorite after the movie Beauty and the Beast came out with Belle (meaning Beauty). To know Michelle is to know a beautiful girl. Just as the Beatle song goes,
"Michelle ma belle. 
These two words go together well, my Michelle.
Michelle ma belle 
I love you, I love you, I love you, 
That's all I want to say" 


 

The day our life was changed was June 5, 1990. Our baby was in a breech position and so we scheduled a Cesarean delivery for that day. I knew my Obstetrician for 10 years (he opened his first practice in Northern California next to the doctor's office where I was employed). We chose his wife to be our Pediatrician and she was in the delivery room, too.
 

When our baby was delivered we heard our Pediatrician yell, "It's a girl. It's a big girl!" (9 lbs., 9 oz.) Then Jack noticed that the whole delivery room got quiet. Everyone had been so jovial before. Even though it was our first birth, he knew something was wrong. The umbilical cord was cut immediately and our baby was taken to a table in the corner of the room. I was oblivious because at that point my anesthesiologist gave me an extra dose of "joy juice" and began engaging me in conversation.
 

Jack was called over to see his baby girl and they let him ceremoniously cut a part of the umbilical cord. Then they showed him what was wrong with Michelle. She was wrapped in a blanket and brought over to me with only her face and a hand showing. I was told she was healthy but had a few problems that could all be corrected with surgery and then they whisked her off to the nursery. I didn't even get to touch her.
 

Jack was wonderful. I know he wanted to go see about Michelle but he stayed with me and held my hand until I was all sutured up and moved out of the delivery room. I think he must have been in some form of shock because he actually watched the doctor suture my uterus and as he says,"slam dunk" it back into my body.

When the Pediatrician finally came to tell me about Michelle she said she thought it was Apert Syndrome because of the symptoms as described in a craniosynostosis book in the nursery, a copy of which we were given.
 

Michelle began having dusky episodes (turning blue) and we were told she would have to be transferred the next day to Stanford Hospital to their Intensive Care Unit (where she stayed for a week).
 

That first day and night was an emotional nightmare! We didn't know what to expect in the future, would our baby live, how would we tell all our family and friends, how would I be able to say good-bye the next day when they took her to another hospital. I also had feelings of failure and the great question, WHY?
 

It was one of the most heartwrenching experiences of my life to see Michelle wheeled away in an incubation transport cart to another hospital.

I was absolutely miserable not being able to see her so I convinced my Obstetrician to release me a day early so I could go be with her.

Michelle was the biggest baby in the NICU (it's mostly preemies). She was always alert and had her feet sticking straight up in the air. It was so funny, I guess she liked that position since she was like that in her breech presentation. She proved the doctors wrong right off the bat by taking to breast feeding the first time. They were convinced she would need to be fed by a tube and couldn't suck. We knew we had a fighter!

Michelle came home with oxygen and an apnea monitor that had to be on 24 hours a day (that went on for 3 months). We decided right then that she was going to lead as "normal" a life as possible. We went out and bought a double stroller so we could take her for walks (we used the other section for all the equipment). We didn't cover her head or her hands when we went out because we thought she was adorable and didn't care what anyone else might think.

Sure we got some strange looks at times but we also got a lot of people saying how cute she was. Michelle does not deserve to live a lesser life because she doesn't look like a typical person.

The first year was the worst. Going to different craniofacial teams trying to decide on the best, doctor appointments constantly, going through the first surgeries (I find the cranial surgeries the hardest), dealing with the questions, coping with the life changes and wondering where my time went. It is hard enough to have a newborn but now there is also the doctors, insurance companies and agencies to deal with. I finally had to put off the appointments for awhile just so we could feel like a regular family, for at least a month.

I couldn't even sing a lullaby to Michelle without crying. I had such a fear of something happening to her and my thoughts of how society would treat her.

Michelle has endured so much!! Over the years she has been diagnosed with hydrocephalus (she has a shunt), sleep apnea (she uses oxygen at night), a penny in her esophagus (doctors wouldn't listen to my complaints for 2 years), a hot dog in her esophagus (another friendly doctor story, hah) and eventually Achalasia (a swallowing disorder).

She has had 22 surgical procedures already and more to face in the future. She has gone through each one with such courage and bounced right back. She has had many other procedures and spent what seems like half her childhood waiting in a doctors office, hospital, etc., but she continues to smile.

Now, as she turns 6 years old, I look back to the day she was born.The pain of that day is eased by the absolute joy that she has brought to our family. If I knew then what I know now, I wouldn't have cried so much.

I never dreamed I could love someone so much. I often say, I feel like they never cut the umbilical cord the day she was born. We have been through so much together and I feel so connected to her (starting with the 7th week of pregnancy - we rode out the 1989 San Francisco Earthquake with everything crashing around us. Jack was at Candlestick Park for the World Series game).

She has taught us so much. We have watched her struggle to learn to sit up, walk and talk! She has amazed us at how well she has managed with her limitations. She learned to climb boxes when she had her hands in casts. She is so analytical and figured out how to open the baby latches on the kitchen cupboards long before she should have (she even taught her sister how to raid the cupboards and refrigerator, hah! - I have a great "caught in the act" picture of it!) 

She has been going to school on the bus since she was 3 years old (she loves riding the bus), she even took her first set of swimming lessons this month. She wouldn't put her head under water until her instructor put goggles on her. Now she is like a snorkeler. She's under water all the time! She loves to go swimming (she'd stay in the pool all day), she enjoys playing with her sister, Shannon (they have their fights, too!),and she adores her father. He's one big kid who likes to get down and rough house with the girls. He's great to ride on, too!

Michelle still struggles to talk. Like most children when they are first learning, the Mom is usually the one who understands the most. We have moments where it seems more like we are playing charades and she gives me a big hug when I figure it out!

She has been followed and called names by children at playgrounds, etc. but, fortunately, she hasn't seemed to notice or care, yet. I have a special "Wings of Love" necklace waiting for that dreaded day. I wish society could understand what people with differences go through. They should admire them for their strength instead of ridiculing or rejecting them. Common criminals walk the streets without a second glance but a person who is born with or later affected with a difference is chastised for life!

We will continue to struggle to have doctors understand our point of view, find an insurance company that will cover her and fight with the school districts for the best education for her.

I appreciate all the families who have sent pictures that will go in my album for Michelle. She will grow up to know she is not the "only one" with Apert Syndrome. I hope to help others feel the same.

Having Apert Syndrome is a 1 in 160,000 chance but loving someone this special is worth a MILLION!!


Michelle, Jack, and Shannon Clark
October 1997


 
 

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