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Archive for May, 2014

tingly feet

Dear Jakey,

I have been lost in thought over the last six days over you ~ over meds we had to give you specifically. Dr. Grottkau prescribed an anti-seizure medication for me because of my back. Long story about that but as you know we trust him. And MGH is full of smart, thoughtful, outside the box doctors. And that is what we believed in for you and what we chose for me. So against everything that I wanted I started the medication. You know I hated meds when you were on them and to be honest I have only gotten wackier about my hatred over medication. I barely take advil. I just don’t like it. But Dad is more rational and has strongly encouraged me to give it a month. I can’t promise that I will make it a month but I am trying.

And mostly it makes me want to say I am sorry to you. Sorry for making you feel the way all this crap probably made you feel. The first day I couldn’t wake up. My mind was awake but my body was so heavy I couldn’t move. The second day was more of the same. The third day I couldn’t stop crying. Poor Bridget picked me up to spin and I burst in tears like a crazy person. And I was cold. And my feet wouldn’t stop tingling. And sometimes my hands. And I just felt so god damn out of it. And at first I complained a lot. But then I stopped  – at least to Dad –  because I figured if you weren’t able to let us know how strange and weird it felt than I wouldn’t either. And now I am 6 days into it and it’s not so bad. I feel mostly like myself so I guess I adjusted but I still don’t like it. And to be honest, I know it is helping some with my back but I think I prefer the pain. I know you needed some of the meds you were on and I know they helped. But I also know some of your best days were when we got you off them. And in the end when we got you off clobazam and you were so much more expressive and active. It’s just hard for me to make sense of it. 

Love,

Mommy

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timehop

Dear Jakey,

Recently I realized something that made me pretty sad. Technology down here has changed quite a bit since you went up to Heaven and I don’t really stay on top of it too much. Honestly, your brother has surpassed me in my ability to know how to work things. Anyways, one thing I have managed to figure out and enjoy is an app called timehop. Each day it pulls a picture or that was taken on the same date years ago. It is pretty cool and is usually good for a chuckle or a nice memory. At first, it bothered me because you were never in the pictures from a 1,2, or 3 years ago and that sort of sucked. But I soon became okay with it because I usually got some good photos from 4 years ago. However, in the last few weeks it has been showing me things I remember so vividly like your sleep study at Mass Eye and Ear, your liver biopsy and your hip surgery at MGH and it has begun to make me anxious. I remember the Memorial Day weekend when you were in your spica and developed pneumonia and we were stuck here with doctors that didn’t know what to do. And somehow Daddy and I knew what was best for you, demanded the prescriptions be written and kept you out of the hospital and got you through it. All those memories are still good for me yet I can’t help but think of it now as the beginning of the end. The beginning of your last six months on Earth. And it makes timehop seem al lot less fun.

Love,

Mommy

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blogging

Dear Jakey,

It is always hard to try to replicate something once its gone. In this case I am talking specifically about the letter I wrote you yesterday afternoon that disappeared into the confusing and annoying world of technology. And of course, in my mind now it is the most brilliant of all my letters and I can never write one as brilliant again. But I will try. I started off by saying that it took me a few tries to actually get that letter written, maybe it was doomed from the start. I had a hard time making it not negative. My head was in a negative place and no matter how hard I tried to make it positive it still was riddled with negativity. And I don’t want that, not for you. 

And then I wrote something about yesterday morning. Yesterday morning I helped Mrs. Willard get started with her blog. I was telling her that the more you do it the easier it got. Which is really quite hypocritical of me, since the last letter I wrote you was in February. And it hasn’t been for lack of things to tell you. 

Shortly after I wrote you last, we figured out what the pain in my glute and back was. It was (is) a herniated disc. The whole injury thing is so new to me that I have been struggling with it. Mostly because it has made me think so much of you. And how at times you were in so much pain. I can’t stop thinking about the night you broke your femur in bed. And how that pain must have just been so excruciating. And I think about how you couldn’t tell us or complain or anything. And how you just sucked it up. And that is sometimes where my negativity sneaks in because I have little sympathy at times when I should. I get so annoyed so easy sometimes and I have to try and bite my tongue. And now being the injured one sucks even more. I get mad at myself that I can’t do the things I want and I get tired of everyone’s opinions. It must have been tough for you to deal with all of us yet you did it with such good grace, something your mother is still trying to figure out.

The thing about your good grace is that it made you so memorable. As I have been trying to figure out this back situation and not overly comfortable with the recommendation for surgery, I reached out to Dr. Grottkau and I wasnt overly optimistic that he would respond. We loved the way he was with you and how great you did with him as your surgeon. Strangely enough, he not only is in charge of pediatric orthopedic surgery but he does adult spine surgery. I don’t know much but that seems pretty lucky and pretty special to me and I think you have had something to do with it. When I wrote him, he wrote back right away because he remembered you. And because of you he wants to help me. I can’t help but feel better knowing that you are in the middle of this. 

I know I wrote a lot more yesterday. But I can’t get it out right today. So I will leave it at that. And as I bring myself out of my post-mother’s day haze and try to join the human race again, I will vow to work on somehow capturing some of your good graces and positivity for myself.  And I will blog more, apparently it gets easier the more you do it.

Love you little peanut,

Mommy

 

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