Dear Jakey,

Another kid died. And another family is enduring the hardest and most god awful thing that can happen to a family. The thing is that almost 19 months have passed and I find myself thinking about the day you died all the time. And I think about all the things I miss and all the things that are different. And I mostly want to hang out alone in my thoughts about you. And I just know that this family is embarking on a journey that just never ends and never gets better. 

I know that there aren’t more kids dying since you died but I am so much more aware of it all now. And through the kids on facebook that are still here fighting the fight you fought I am witness to so many families and kids around the country. Kiddos that look and fight like you. I sometimes wish I knew them when you were here because I learn about so many things through them – things that might have helped you or made your life more comfortable. 

Patrick died today. I don’t know much about him or even where he lived but I know he had seizures and I know his body tired out. His parents knew it was going to happen and had the last couple days at home with him. I wonder what that is like. We didn’t know you were dying. Would I have taken Ethan to bettie’s for a Samoa cupcake if I knew? Would we have gone to TKD?

And another little girl Caylee is struggling and her Mom had to decide whether to put her on a respirator or not. These are situations that are forever impossible to get over and I can’t get over. My heart breaks each time I follow a family yet I can’t stop following them. It is like my only connection to you and our life together. I hate that every day that passes brings me a day further from when I last held you. Sometimes I can believe the crap that tells me it is actually one day closer to seeing you but not lately. Lately I just want to think about you and miss you.