My son Simon was born in December 2004, but our story started earlier. He was diagnosed with Pallister-Killian Syndrome when I was about 25 weeks pregnant. At an ultrasound he showed a cleft lip, short long bones, and enlarged brain ventricles. His nasal bridge did not look well defined either. It wasn’t easy to be pregnant and think that our baby would have all sorts of terrible things wrong with it as we found on the internet when we searched PKS. We didn’t even know if he’d live!
Now 15 years later, we have a young man, who yes, has vision and hearing impairment. Oh yes, and seizures, and definitely low muscle tone. Did I mention global delays? But we also have a son who makes us smile when he smiles and laughs, has a will of his own despite not being able to talk, and whom we love very much. He’s not perfect, but neither are we!
Simon has a big brother Alex and three big sisters: Emily, Maddy and Natalie and they all love him to pieces. There were ups and downs early on about having a special needs sibling, but they now realize he’s just their brother and deserving of love as every other child God creates.
Still, Si isn’t doing very much. He isn’t sitting, crawling or bearing weight. He eats pureed foods and learned to drink from a straw right after his 5th birthday! Simon loves to listen to music and watch lights—especially ones that flash or move. He doesn’t like it when you interrupt his “me-time”. He also loves being tickled and going swimming.
He is our little angel and our own saint. We are blessed he came to live with our family. I couldn’t be happier than to be his mommy.
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