I was so excited the nine months leading up to my baby’s birth. I was finally able to enjoy this third pregnancy because I was an expert now. No fears or worries. I would be able to really appreciate this infancy stage.
But I went from joy to hell.
That’s what it felt like to have Lincoln taken away only two hours after delivery to the NICU because something was seriously wrong. After a week of family and friend visits and narcotic-induced mental survival for me, my son was diagnosed with Prader-Willi Syndrome, a rare disorder that affects 1 in 12,000-15,000 births and causes insatiable hunger and behavioral and cognitive challenges. Why me? Why us?
What do I wish I had known before having a child with a rare disorder? Where do I begin? You’ve seen these articles before, the ones about how we never know how wonderful and perfect our children will actually turn out to be. I was given articles about this as well. I read Welcome to Holland, which made me feel better but didn’t quite cut the pain and depression that would ensue in those early months. It did take a bit of the edge off and I do highly recommend this essay for anyone given a devastating diagnosis but there are many additional strategies to deal with the loss of a healthy child.
First and foremost, I wish I had not listened to my Pediatric NICU Doctor who told me to go home and read about Lincoln’s Syndrome on the internet. The internet can be a curse when you have a child with challenges, especially the forums with other parents. Often, not always, people with the most severe cases post on the internet and to read about what could happen to your child when they are 19 years old is, in my opinion, a form of masochism when you need to bond with your infant. Reading about scary behaviors and medical issues can make one afraid of their baby and serve as an obstacle to get to know and connect with your infant. At least that is what happened to me. I would have preferred to have heard about the syndrome solely from other parents a little bit ahead of my child in age and positive stories of older children. There was no need to fear the unknown when we had no idea at that time where our child fell on the spectrum of the syndrome.
I wish I had known that I would have a life outside of caring for my child. Once again, the internet information presented a picture of a frighteningly isolated life where my child would be a horrible burden to our family in and out of the house and definitely never able to socialize. This was the most terrifying prospect, as my family was and is very social. I felt tremendously guilty and greedy for wanting another child when I had two healthy children. I now felt that I destroyed my entire family who would suffer with a child out of control.
Instead, I wish that in those early days after the diagnosis I had met families who were living as they had before and were even doing more! That the syndrome did not limit them in their ability to continue living a fulfilled life in and out of the house. That would have been a tremendous relief.
I wish I had truly understood the beauty of how my other children would be more understanding, compassionate people. Yes, I was told this over and over again but I couldn’t feel how special that would be at the time. It was little consolation in the early stages of grief. I can now say that it is something that fills me with pride. Watching my kids spend time with children who are different and not only not be fazed or fearful but genuinely loving and kind makes me smile.
I wish I had known how much richer my life would be with a community of friends who are parents of kids with special needs who cut right through the BS, with whom I would connect on a deep level that is best described as spiritual. I wish I had known that I would eventually find these friends who were not afraid to divulge the ugliest of thoughts and feelings about their children, the honest folk. There are few things that are worse, especially in the early days of infancy, than listening to parents talk about how their child with special needs feels like a gift to them when you wish you never got pregnant with them in the first place. The feelings of shame and inadequacy as a parent are exacerbated when listening to people who only have positive things to say about how wonderful their life is when you only see the horror of challenges that await you. My advice: Seek out honest and like-minded people and I promise you will find them!
Lastly, I wish I had known that Lincoln would not be everything I read and saw on sensationalized TV shows. I wish I had known that Lincoln would be a sweet boy who loves life and enjoys it more than anyone I know. I wish I had known that out of all my children he would be the one to want to accompany me to any concert, play, dance show, political demonstration or volunteer activity with the homeless, seniors, the hungry or other children with disabilities. He is not only willing to participate in these activities but relishes them. He is always smiling, happy to engage and his joy is contagious. To me, that is what gives life true meaning.
Yes, Prader-Willi Syndrome SUCKS and I wish he didn’t have it but had I known that my life would indeed go on with gusto despite his challenges, the early days, months and years would have been a lot less stressful and a lot more joyful.
Find your people, your supports, be open to getting to know your child and be open to LIVE!