The full force 

So many of the mothers I am visiting on this trip have worried about how I will cope being around so many children. They have been concerned, quite realistically, that being around healthy, happy kids will be upsetting to me and remind me of what I have lost. 

Truth be told, I don’t find it that hard. In fact I find children wonderfully distracting. They can be a focus point when everything else feels blurry. They will absorb all the attention you can give, leaving everything else in the background. 

On Christmas Eve, though, I felt the full force of what those women had been worried about. I went to dinner at a friend’s house in Brooklyn. She’s a new friend and this was the first time I was meeting her family. When I first put out the call for people who might want to be involved in the book of essays she responded. When I changed tack and started the podcast, she has stayed involved, and I hope will one day have her own episode. 

Her son is 14 months old. He has 22Q Deletion Syndrome, which has a lot of similarities with CHARGE Syndrome in that almost any system in the body can be affected. Like CHARGE, 22Q Deletion has a huge spectrum of how it manifests itself in individuals. He also has Peter’s Anomaly which affects the corneas in your eyes and when he was born he was blind. He has since had multiple cornea operations and transplants and has vision. 

I knew all this before I met this baby. His mother had written to me and explained it all beautifully. What I wasn’t expecting was just how much he would remind me of Eva. He has micropthalmia, meaning his eyes were smaller than is typical, so did Eva. His eyes moved like hers, a certain roaming gaze, cause by vision issues. He had an NG tube, just like Eva. I watched his mother  check the placement of the tube and give him medicine, it all felt so familiar. He had a beautiful smile and laugh, just like Eva.

Their similarities felt striking to me, but it was their differences that made my heart ache. At 14 months, her son, while small, was crawling wonderfully. He could sit with full control and he was pulling up to stand. He scooted himself around their floor and made himself known to every guest at the party. He was holding court, and loving it. 

Eva was showing so much promise in terms of sitting and crawling, but she never got to do either by herself. Seeing this gorgeous, brave boy do the things I had been so looking forward to seeing Eva do felt gut wrenching. I watched him eating in his high chair and had the sense that it might be easier for me if I looked away, but I couldn’t. His Dad caught my eye and smiled, I think aware of my gaze, and how fized it was on his son 

  

I felt my heart start to race and my cheeks get hot. I saw Eva in my mind, with her NG tube, rolling and pulling her legs up underneath her, the first steps to crawling and I felt my throat start to fill with tears. I watched this baby, interact with everyone. I picked him up and talked to him while he grasped the necklace around my neck with Eva’s birth date on it. He could see it. Eva couldn’t. 

I even considered leaving for a while, I didn’t want to break down in front of this room of strangers, but while it was painful, I stayed and I kept watching him. 

It’s been a while since I have felt quite so heartbroken. He was beautiful and fragile and brave, just like Eva. He has been through more than any one year old should have to, and his medical journey isn’t over yet. Like Eva, he has a list of doctors and specialists. I thought about all those doctor’s appointments we went to and wished more than anything that I could be back there in those waiting rooms with her. 

I listened as his mother explained the NG tube and what she was doing. I watched as her friends looked on, curious, mesmerized by the NG tube and how it worked. It was such a strange feeling to see it happen and not be the one explaining the system while I fed my baby. It felt like I was on the other side of a window looking into a world I knew so well but was not part of anymore. I felt solidarity and familiarity at the same time as jealous and heartbroken. But I also felt so proud of this mother who was doing such a phenomenal job of parenting her son. 

I felt a mixture of relief and loss when he was put to bed for the night. When he wasn’t right in front of me I wasn’t thinking about everything I had lost, but when he was there I also felt closer to Eva somehow. 

I drank too much and when I did leave on the subway home I sat back and let the tears I had been holding onto all night spill onto my cheeks. The man across from me in the subway was asleep and I used that as an excuse to let myself go. I slumped in my seat and allowed my sadness to fill me up. 

I know his mother will read this post, and I want to make it clear while this experience in some ways felt very painful, I am so happy I got to meet her and her family. I don’t regret it, and I will never forget it or him. I will be following his progress and successes, of which I am sure there will be many, very closely. 

One of the perils of special needs parenting is that we all know that sometimes, even if we do everything right, our children are fragile we can lose them in ways most parents would never dream of. A simple cold can mean the end of their life. Eva and I were unlucky. Our time together was too short. I will never stop feeling sad about that. But it doesn’t mean I wish it on anyone else. 

I started the book and then the podcast because I wanted to create a place for new parents of special needs kids to find comfort and community. I didn’t realise it would be such a profound grieving and healing process for me too. I feel so fortunate that I get to experience some of what we might have had through families like this, even when it hurts. Like everything about being Eva’s mother, there’s beauty in that pain. 

4 thoughts on “The full force 

  1. Megan Goates

    I’m following your trip on Facebook and while my special-needs parenting experience is different than yours, I feel compelled to say that this post is deeply honest and moving to me. My children are physically healthy, but their minds work differently, which leads to violent and erratic behaviors. I can’t say “I get it,” because I can’t fathom your grief. But I do feel a deep empathy from one challenged mom to another. Bless you.

  2. Colleen

    I had a lump in my throat just reading about this experience, so I can only imagine how emotionally complex and bittersweet it must have been for you–to celebrate the way this child is growing and thriving, while of course wishing Eva could be here thriving, too. It’s just not fair that she isn’t.

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