This is my post at BLOOM - Holland Bloorview Kids Rehabilitation Hosptial’s Blog. Thanks to Louise Kinross for letting me share with the folks at BLOOM.
I really should start playing the lottery, something with a huge jackpot and really low odds. I think I have a very good chance of winning.
I have three children ages five and under. My first two children have special needs/super powers. My daughter – nearly 3 years old – has Prader-Willi Syndrome and my son has Duchenne Muscular Dystrophy. The odds of having two children with these two genetically unrelated disorders are 1 in 52 500 000. They both have random mutations. Baby #3 does not. I am a special education teacher and my husband works in the field of special needs as well. I am not sure what the odds of these unrelated facts happening all at once are. Some folks would say it’s nearly impossible.
You would be right to think that I take comfort in statistics and Science. Although the day that I received my daughter’s diagnosis, Science shook my world. The doctor leaned across a table and said, “I have a diagnosis for you.” As though she was offering an unusual appetiser. I listened numbly as the doctor talked about chromosomal deletions, genetic testing, percentiles, and DNA.
After meeting with the doctor, my husband and I sat in the hospital food court, holding cups of cold coffee out of habit and trying to process the news. We looked at the papers the doctor gave us. I now know were in a complete state of shock. What does Prader-Willi Syndrome mean?
We clung to our coffee cups and stared around the hospital food court. Everything – people walking by, the bright lights, the shiny tables – had a surreal quality. The world as we knew it had changed. What would this diagnosis mean for our family? How would we tell our relatives? What kind of life will my daughter have?
Our daughter was upstairs in the NICU. She was 15 days old and had a naso-gastro tube for feeding. This is a tube that runs through her nose and into her stomach, she was in the NICU because she could not feed and became dehydrated shortly after she was born. My daughter was a pink, floppy, blonde haired, blue eyed beauty. We found out later that fair complexion, hypotonia and initial failure to thrive (inability to feed due to poor muscle tone) are traits of infants with PWS.
Soon it was time for my daughter’s scheduled bath – I raced upstairs to the NICU to give her a bath. Bath time was an important ritual for both of us. It was the only time of day she came alive. The water and rough towels stimulated her muscles so she looked alert and more like a typical infant, instead of a floppy rag doll. Her eyes were open and she looked around. Bath time was the only way we connected.
Soon a slew of specialists were involved in our lives – occupational therapy, dieticians, speech and language pathologists, pediatricians and home nursing when my daughter was an infant at home with a naso-gastric tube. The professionals would weigh her, measure her, assess her motor ability and compare her progress with other children her age. At first I memorised the numbers and rankings, believing that she would ‘catch up’ with ‘typical peers.’
I wanted her to be the best child with Prader-Willi Syndrome out there. I would tell people that my daughter’s gross motor ability was at the 2nd percentile; that means that she is better than 1 percent of babies her age. I was deluding myself with Science and statistics – because ultimately it does not matter.
In the land of Special Needs, things happen differently, and if you don’t look for them you will miss them completely. My daughter is nearly three and still cannot walk. She spends her day bum-shuffling around, devoted mother to a dozen baby dolls, giving them bottles, naps, and changing diapers. If her baby brother holds still long enough she will change him too.
If I spent my time focussing on what she cannot do, I would miss everything that is truly exceptional about her. She does not speak clearly, but can tell knock-knock jokes. And she loves to laugh. She cannot walk, but can dance. She moves with a rhythm and style all her own. She has a strong sense of fashion, and loves stylish clothing and accessories. She makes people happy, reaching out to strangers and truly bringing out the best in people.
There is no percentile chart that can measure this. It took us a while to realise that the things that truly count cannot be measured.
But back with my lottery wish – I think we already hit the jackpot.
What’s my advice to parents dealing with a new diagnosis?
Hug your child, spend time with them and remember how special they are. Make time to connect with other parents who are going through the same thing or are just slightly ahead of you on the journey in the land of Special Needs. With the internet, the world is truly a small place. You are never alone. You can always connect with me on Twitter @specialneedmom2