When I started thinking about the act of kindness I would do to celebrate Elliot's life, I started to worry that something random wouldn't show up before his anniversary and then I wouldn't have done anything. It also made me realize that I was kind of asking something big of all of you. So again, thank you!
Because I didn't want to wait for something to just present itself, I decided to seek something out. When I started thinking about it, one of the first ideas I had was to do something for another family that had been impacted by Vein of Galen Malformation. Believe it or not, it wasn't so easy to find another family, as rare as VOGM is. I found a few support groups online with different stories. Many of them were from parents who had lost children years and years ago. Some had stories of parents who had discovered their children had VOGM after they were born, and they were years out from their children's procedures. It was wonderful to read all of the children who were doing well, and honestly, really painful to read stories from mothers like me who lost their babies.
There was one mom who stood out. She had a little boy and had recently discovered that he had VOGM, just a few months ago. They had already undergone his embolization procedure. Everytime I read her story, it just struck me. I would read about other children, but I would always come back to this mom and little boy. So, I decided to send her a message. I told her about Elliot and I told her about his giving tree. I asked her to tell me a little about her son and her family. And I asked her if I could send her a care package, explaining that I would like that to be my random act of kindness. I included a link to this blog and a link to the Children's Hospital Al's Run page with Elliot's story so that she wouldn't think I was a random internet crazy person. And then I waited. After a couple of days not hearing from her, I was pretty sure she did think I was an internet crazy. And really, who could blame her?
But then, about a week later, I got a message back!! She told me all about her son and what had happened with him starting from just before she got pregnant with him. And as it turned out, her son was born within days of when Elliot was born. Her little boy was the exact age that Elliot would have been had he lived. And it dawned on me why I had continuously come back to her. I don't typically think about how old Elliot would be had he lived, it just hurts a little too much, and I guess this is why it never clicked for me, even though I knew from the support group page how old her son was. Though it has been really scary and difficult to deal with the VOGM diagnosis, it seems as though her son has a good prognosis and is going to go on to live a normal life - which is so wonderful to see.
It has been great to message back and forth with her. Though she talks about being grateful to have someone to share her story with who knows about VOGM, I really feel like it has been a gift to me to be able to share Elliot's story with her. She just understands in a way that other people don't. Each time I get a message from her, I get excited. It's such a unique connection to another person, and I feel really grateful. I did end up sending her family a care package, but that seems like such a small part of the whole thing. I guess I shouldn't be surprised that in trying to do something for Elliot, to honor his memory, I end up feeling like it's a gift for me.
It's hard to believe that on Thursday it will be one year since Elliot was born. What seems more unbelievable is that a year ago today, I was still in ignorant bliss about my pregnancy, not having any sense of what was about to hit us. I feel really proud of what we as a family have done with the last year. We fought harder than ever to keep our family together, to have Gavin feel happy and safe, and to bring Quinn home with us. Thank you to everyone who helped us through this difficult year, it helped more than you can know having people who were pulling for us along the way.