by Lesley of
My Morning Glory
Sarah is my third child. The icing on my cake- as they say. After two boys it was exciting to be having a girl. The boys were 7 and 11 when Sarah was born. I had all available prenatal testing and she passed with flying colors. I was a single parent and wanted to be prepared in case there were to be issues. But it appeared all was well.
Sarah arrived one week early at 8 pounds 8 ounces. Very easy delivery after an uneventful pregnancy. She appeared healthy and I took her home 2 days later. No immediate signs of the troubles ahead.
The first warning sign was at her 2 week checkup. She had not gained the appropriate amount of weight, in my opinion. The pediatrician thought she was fine. I was breastfeeding and thought maybe with the 2 boys and running around my supply was low. Or maybe whe was having trouble nursing as she would frequently pull off to catch her breath. It was like she couldn't coordinate the sucking/swallowing thing. At any rate, whatever the reason, I went cold turkey to formula bottles. And then she gained like a champ. She still pulled off a lot but got much more nourishment through the bottles.
The next sign was at 3 months when I took her for her first portrait session at the photographer's. She could barely hold her head up to prop on her elbows, like the boys did at that age. Then she didn't roll over till 6 months, then she couldn't babble unless the bottle nipple was in her mouth, then she didn't sit independently until 10 months, she could not crawl on all fours or pull to stand or use a pincer grasp. Basically, her gross and fine motor skills stalled at about a 7 month's old level. Which is where they remain today. She is almost 15 years old now.
And where was the medical community in this? They were not quite sure what was going on with Sarah. The neurologists had no answer. She was given the diagnosis of CP "for insurance purposes" but we knew that wasn't it. She continues to hold that diagnosis today purely for the insurance.
Some of Sarah's issues seemed to get worse gradually over time. She lost the ability to hold a cup and drink out of it, the ability to pull herself along on her belly, the ability to babble, the ability to finger feed. She lost them so slowly I almost didn't notice it.
At the age of 4, I remember discussing with her physiatrist the possible diagnosis of a cognitive disability. Her physiatrist disagreed with me and said Sarah more closely resembled a child with autism. So she was seen by an expert in the field, who said Sarah only had features of the condition, not enough for a diagnosis.
At this point I had a darling little girl with atypical cerebral palsy and features of autism. And it remains official to this day.
Every few years I take Sarah to a geneticist to review any new discoveries in the chromosomal world. She is tested for this or that but nothing has been found abnormal in any of Sarah's testing.
Sarah's situation most closely resembles Rett Syndrome. I had stumbled upon a support group on the internet 10 years ago. This group was for the parents of undiagnosed children that appeared to be a mix of Rett and Angelman Syndromes. Sarah fit right in. Even though she tested negative for both. As the years went by, she swayed more to the Rett side where she still sits today. She cannot walk, talk, feed herself or change her position. She is legally blind. She is full care in every possible conceivable way and then some :)
I think of her as affected by Rett Syndrome. I belong to Rett Syndrome support groups. She is followed by the RS department at Children's Hospital in Boston. She continues to test negative for it and she is retested every few years as the science improves. It is through other Rett parents that I learn how to manage issues with Sarah. They are an invaluable resource, offering encouragment, ideas and support. I have gained confidence in her care, learned to think outside the box for her schooling, and discovered how smart Sarah is.
So that's the medical side of things, which really is not Sarah's story, in my opinion. Those are just the facts. THIS is Sarah's Story:
Sarah is a gift. I know it sounds cliche, but there is no other way to say it---she is a jewel, the best thing that could have happened to our family. I cannot imagine how we could possibly have landed such a wonderful child. I felt this from the very beginning. I just knew from early pregnancy that there was going to be something glorious about this little person. And, eventually, no matter what I was told about the severity of her limitations, I just didnt care. It didn't matter. She was awesome just the way she was and I was so grateful to have her.
I feel privilged to be her mother. I am thrilled to be able, in this lifetime, to have the chance to experience raising both 'normal' children AND a special needs child. Not everyone gets that opportunity. I have no desire to change her or 'fix' her. I'll take her just as I got her.
My sweet girl.
The funny thing is, it is exactly the opposite of what most people think. I have found that the general public looks at Sarah as a hardship, a burden, that I must have extraordinary strength and endurance to take care of her, that I need a God's blessing to get through it and to cope with the calamity in my life. I see pity. I hear: 'I dont know how you do it'.
Well, if I could shout this from the rooftops, I would:
I have already been blessed... WITH THIS CHILD. She is delightful! We cannot do enough for her! She brings happiness! She brings joy! She brings laughter! She brings lessons! She brings contentment! She brings peace! She brings simplicity! She enriches our lives! We do not cope, we savor! She is a positive in our lives! We are lucky! We are grateful! It matters not a bit the things she cannot do! We learn from her!... Surprise, everybody!
The thing is, we are not teaching Sarah, she is teaching us. And I share her with whomever shows any interest. People need to know these children are not tragedies, they are amazing, wonderful, inspiring people, just the way they were born. There is nothing 'wrong' with them. They are perfectly themselves. These kiddos give more to us than we will ever be able to give to them. I want everyone to know. I want Sarah to have the opportunity to give to them, to show them another way, to challenge their view.
Because that's what she's on this earth to do. Teach.
And
that is Sarah's Story.
