I saw Jonah last weekend. He was running and playing with friends. He was playing on his new basketball hoop with is grandpa. He was jumping through sprinklers in the front yard. He was eating cake and playing with trucks. I do my best to avoid looking for him in other children but sometimes there’s nothing I can do – it just happens. This grieving for a child thing is a hard thing to wrap my head around. With Luke, we lost him so early that we don’t really have any concept of who (or really, who she) would have been. Jonah was different; we learned what his favorite positions were and how stubborn he was, and we learned what types of foods brought the most movement. We met him. I don’t see Luke in other children because I have no reference point – only a series of ‘what ifs’ and the hard moments come and go like the tide. Jonah though… he was uniquely ours.
His hair was so distinct to me that I’ll never forget it. Brown, but not as dark as mine, and when it was dry it was so, so soft. His tiny fingers were perfect little baby fingers, ready and waiting to grip our fingers. Those toes… everybody loves baby toes. When I visit him in the nursery I hold my hand up to his hand print and imagine what it would be like to hold his hand instead. And then I hurt. Many families go through similar things to what we have and every one of them feel the same pain we do. For me, the absolute worst was being told that his chromosome issues would likely be the reason he dies, and wondering if we would get to see those toes in the first place. They told us our baby was terminal.
But you know what? So am I. We only have so many days on this earth, and I can tell you first hand that some last longer than others. Every day was a struggle to stay in the moment with him because of how bleak the future seemed to be, but we never would have loved as hard or as long if we hadn’t done those things to live every day with him. So yes, he was terminal – just like Daddy. Five months and one day later I wonder if we’ll be blessed with more chances though I believe in my heart we will. Five months later I hope that his legacy is being carried on in a way that befits the man he would have become, Trisomy or not.
These are days to be cherished. Seek out the life in them. Be your best self, and make the ones you lost proud.
Terminal, but like Daddy. I miss you Jonah