Dear Jakey,

I was emailing with another mom who lost her son about 10 months ago. She said that she kept thinking about how last year at this time he was still alive. I know what she means. I remember when you first got sick and we spent all that time in the hospital. That first year after was so hard because I could always remember a year earlier when you were healthy and what we did. It wasn’t until it was over a year that those memories weren’t as prevalent. They never went away – thank goodness, because they are part of your story too – but they weren’t as painful. I wonder if this will be the same.

Last year I remember being so anxious at this time. I remember how great you were doing, but I also vividly remember all we had ahead of us. Your liver biopsy was on April 27th and your hip surgery was on May 18th. I remember being so scared about the anesthesia, the hospital stay and I remember thinking so hard about what I would do if you didn’t make it. I think I had a massive pit in my stomach for two months. I also got your name tattooed on my arm. I got it on April 26th as my attempt at good karma. And I vividly remember knowing that if anything happened I would put your dates above and below. I need to get that done. Not sure why I have put it off but it I haven’t done it yet and I need to. A year ago though, everything was different. You did awesome with your liver biopsy and that ended up being a really great family experience. It was when the amazing nurses and doctors at MGH let all of us, not just me, stay with you. They brought a cot in for Ethan and he slept right next to you and me. And all four of us were together. And then we went home. And your liver was functioning well – no one understood why it was so atrophied or why it still worked but it did. It was another unknown piece of the puzzle.

And then there was your 4th birthday. We went to Montreal. I dread the thought of ever going there without you. You are all over that city. Another place that we felt comfortable. And had such great times. I remember like it was yesterday sitting in the park, feeding you and snuggling while Daddy and Ethan flew their Batman kite. Such good times.

And then was your surgery. I have never been so scared in all my life. Dressing in scrubs and kissing you goodbye was the hardest thing I ever did – well, the hardest thing until I had to close your casket and carry it out of Tunison. And even through that over 6 hour surgery. You did so good. They told us your bones were so small and fragile and you would have to be in a body cast but you did great. So great that we went home the next day. And through all of that followed, the constipation, the pneumonia from the cast, the family camp out on the couch – that whole three weeks of spica #1 – you were a rock star. And I can remember with such clarity that I can, even as I write, hear the sound of the saw cutting off your cast – and I can picture Ethan standing by you with such seriousness about protecting you. And I remember the next day when you hurt. Buddy, I remember it all. I remember this time of year with such clarity and I remember the fear I had of losing you. And I am struck and devastated that you made it through that all so well and when I did actually lose you I didn’t see it coming.

It doesn’t make sense. You are so close to my heart. I can’t stop thinking about you  – both now and then.

I love you,