It is with some hesitation that I write to you tonight. It was a year ago when we went to MGH so that you could get your Spica cast put on. It was about this day, a year ago, that I wrote a letter to you called Love Story. I remember so clearly how I felt a year ago and how I felt when I wrote it. And it seems wrong how much is different from then. A year ago it was like this:
This is actually not just a letter to you but also to Ethan and Daddy. It is really a total love story of our family. I could not be prouder of you which pretty much goes without saying. You had an impending fracture for at least two weeks, maybe longer who really knows. You ponied up through that, working through all your therapies. And then it breaks. You tolerate a splint for two days pretty much like a champ. And then we drive to Boston, with your broken leg and spend 9.5 hours in the ER. I have to think that most 4 years old couldn’t endure such trials and I am not sure that many families could either.
Your brother said to me this morning – is it okay if i love you, Daddy and Sarena a little bit less so that I can love Jakey even more? He recognized what you went through and just wants to try to make up for it. He loves you so much that he too spent the 9.5 hours in the ER with us – even though it meant he missed two days of school (you know how he is about school). 9.5 hours anywhere is a lot – let alone essentially sitting in one small room shared with a boy with pneumonia . He was really amazing. He listened carefully to the doctors, drew enough pictures to make a book, played with all his battle force 5 and was overall amazing. He had such concern with the whole IV situation – and could watch better than me. And was very watchful when they were sawing off parts of your cast. There aren’t many 5 years olds who could do that and I don’t even think many kids twice his age could be so well-behaved.
And then there is your Papa Smurf. We are so different – him and I, yet the combination of us both makes me feel that you could not be more protected or looked after. I am good about hounding the doctors and keeping their staff up to date and you on their mind. I remember all the meds and various changes and the amounts given for all your countless sedations. I can rattle off what worked when and what never to use again. I can talk endlessly about dates and times when relevant things occurred and I can make a good, reasonable case for things to go the way we want. Your daddy however is your true defender. And he is who Ethan learns his bravery from. Daddy can tell them all there is to know about your veins, which ones work, which ones will collapse – stuff that for whatever reason makes me stand in the corner saying Hail Mary’s over and over. He also will never let anyone get side tract from the goal and purpose. He will stand up for you when people start to comment about your twitches or other idiosyncrasies or start to go down another path. He won’t let it happen. Ever. He has your back more than you could ever imagine. I knew last night when all things were falling into place that he was the man to be in the room with you and that he would stay in control regardless of what chaos came about. I knew when it was the time to take Ethan out and color with him outside the door. I hope you don’t think I abandoned you and I am pretty sure you know I never will.
When we left with you yesterday, even though it was 10:30, I couldn’t have been happier. We left with an expertely put on spica cast, put on by Dr. Grottkau and an impressive team. We left with you only mildly sedated and having never lost consciousness. We left without going through the whole crazy admittance process that we were supposed to follow. We made it happen in the best way we could and I hope you felt the love surrounding you.
So here we are again, Jake. It is like rewinding 6 months – You in a body cast needing to be readjusted every few hours and all the details of spica care I had hoped to leave behind. But I welcome them and know things will be fine and if all goes well you will have it off before Santa comes. Stay strong my incredible boy.
Now there is so much that is different but at its core the letter still speaks to who we are. We are still a mother, father and brother in awe of you. In awe of all you endured and in utter devastation that you left us. Tonight at 8:21, I think of last year. I remember you were about to be seen by Dr. Grottkau in a small OR in the ER. He had worked clinic all day and because he is such a good man who loved you and was in a position to make it happen, he came to the ER and did the job himself. I remember vividly how I felt that day and as I sit on the couch tonight I can see us sitting on the table in that small room. You were in the red stroller with your leg in the splint. Ethan was coloring and Daddy and I were sitting. I remember waiting all day. And somehow even though it was 9.5 hours, it wasn’t awful. It was fine because we were all there together, the 4 of us. And we knew so well how to make it okay. We balanced each other and made each other stronger. And we did it for you. I just think of those days and I miss you so much. We are still trying to figure it out without you. Sometimes it seems like we can so easily lose our balance now. And sometimes it is just so hard to regain it.