Recently I read a beautiful story. The story goes like this. Outside of the hospital, a man is watching as a mother helps her son into the car. The man repeatedly asks if this mother needs help with her 20 something-year-old, who’s larger than she. She kindly declines and even says this is normal, so no worries. In a surprise twist, the man becomes emotional because his baby now has a feeding tube, and he didn’t think he could handle it. But, after watching her, he said, “You just changed my life,” feeling that now he was better suited to deal with the demands of being a parent to a special needs child.
[…] I had countless messages of support […]
This is an oversimplification. The man isn’t going to be perfectly fine with the transition to the life he is about to lead. But, this story has sat with me for a few reasons. In some ways, it reminds me of my own.
The day we got our diagnosis was a blur. I was at work, got the call, heard the diagnosis, and then had to pick up the children and drive home. I sent emails to our family and made posts on social media. By the following morning, I had countless messages of support, love, and family reaching out to help in any way they could. But that night, after dinner and a long day of seeing genetics, working, and taking care of our kids, I asked my husband if I could go to Target for some time to myself.
I spent most of the time in my car speaking with friends and family. Eventually, I went inside to fill my basket with all the candy I could fit in it. It was late, so late my kids were already asleep, so when I heard the sounds of a child bounce off my ear into my brain, I slowly processed this child wasn’t typical.
Tears started to fill my eyes while I told them my son had just been diagnosed with a rare disease […]
There were three adults to this one child. The child must have been around the age of 6 or 7. They had no words but seemed to communicate with the adults in their own “language” of squeals, grunts, and hand gestures. They chewed on their shirt, and no one stopped them.
I walked up to the family and asked, “your child,” pausing to search for the correct words having no idea what they were, “are they special?” The mother, as she later introduced herself, smiled and told me they were. I asked questions, asked if it was okay to ask more, and finally, I broke down. Tears started to fill my eyes while I told them my son had just been diagnosed with a rare disease, and I didn’t know if he would ever speak or take care of himself.
[…] a door of kindness I never knew existed opened.
They were so kind. The mother asked if she could hug me, something up until that moment in the middle of that Target, I can tell you, is something I would never let a stranger do. I said, “please,” and I hugged this stranger, and at that moment, I felt like I wasn’t alone. I oddly felt stronger.
Now all day long, I was getting phone calls, emails, people were messaging me, but at that moment, I felt as if I went from being a parent to being a special needs parent. At that moment, I felt as if this woman was telling me it was okay to trust strangers. In that tiny moment, it was as if a door of kindness I never knew existed opened.
The memories of that interaction are ingrained in my brain. We never exchanged full names or numbers. We didn’t need to. They knew the journey I was about to begin. The journey they had been on for so many years already. I think they knew they would always hold a part in my story.
None of this is easy.
So when I read the interaction of this father, I remember that feeling he had at that moment. The moment that I felt this was impossible. This wasn’t a dream I could wake up from. And there it was, right in front of me, my future. They could do it. Maybe I could too?
I left without buying the candy, just the baby food my son still needed at age two. Something that oddly after that interaction didn’t make me feel awkward as it had the week before.
None of this is easy. You don’t just gain all the knowledge of being a parent to a special needs child because you now are one. But what you do gain is access to a supportive, helpful, and empathetic community. They, too, remember their diagnosis day. They, too, remember the first special needs parent that made them feel like they could do it too. Maybe one day you will be that person for someone. Perhaps you already have been and don’t even know.
