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Archive for August, 2012

Stuck

Dear Jakey,

Sometimes, as time passes, I find myself really truly stuck. Stuck in this place where life goes on and you are not in it. Stuck between happiness and guilt. And really stuck in sadness. There is so much change happening and it all seems so strange to not have you impact any of the change. Ethan is starting 2nd grade next week. He is 7 and a half and such a bigger boy than when you were here. It seems strange that you haven’t seen the change happening, at least not from down here. And we talk about changes to the house and redoing our back deck – where we still have the wheelchair ramp out the back door even though we don’t really need it anymore. It just doesn’t seem right to remove it. We are planning trips for 2013 – we’re going to Buffalo for a football game, Daddy and I are going to the Otesaga where you were with us last, we have Disney in October, NYC in November and Montreal in December. It seems overwhelming that life is moving along down here and how much time has passed since we have cuddled up, or since I made keto meals or gave meds or researched diseases and cures. And so long since you made a face at me, or I bought you tons of cute clothes. I still get a little weepy when I walk by the little boy sections in stores – no more hipster tees for me to buy you. Sometimes I want to buy them and sometimes I buy random things but then it just seems weird and I don’t really know where to put them. I wonder if this new normal people talk about will ever seem normal. It still sometimes feels like I am on the outside looking in on this new life of ours.

But enough of that talk, I don’t want to make you sad. I just want you to know how important and integral you remain in our everyday life. We all think of you more than you can imagine and I think we each all still have moments each day when we just pause and can’t really believe you are gone. I love you so much and miss your perfect little face so much. I miss your keto breath, even when it was strong and stinky. I miss your sneer when I bugged you or hugged you too hard. I miss you on my arm at night. I miss it all. So very much.

Love,

Mommy

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20

Dear Jakey,

This letter has been brewing since Tuesday. On Tuesday we went up to see Scotty & Leah at the lake. We never went up there last summer but as you know we went up a lot with you. Back then, I sat on the porch with you on my lap drinking white wine and we had some truly lovely evenings up there. And then life happened and it has been quite a while since we were up there. Within moments of arriving, Leah asked if it was hard to be there. She knew and also remembered so vividly you being there with us. And I appreciated it so much. Again, it was so nice to just be able to talk about you and remember moments of you with others. And though I don’t see Leah much, it was so nice and she said out loud what I think so much about everyday – about sometimes it is so hard for me to be around “normal” families. I hate to admit it Jakey, but it is true. Sometimes I just can’t do it. I don’t want to watch or hear about everyone’s life, particularly when it is about how hard it is. And while most of me, most of the time knows and understands life is what it is, there are stages that come and go with me where I just don’t want to hear it. I don’t want to hear about the normal problems everyone has. I don’t want to hear about trouble sleeping or trouble in the store or driving everyone around. And not because I think those things aren’t hard but mostly because I miss those parts just as much as I miss the happy parts. I miss the normal problems, even when our problems were far from normal. And coming home on Tuesday night, I wonder if Ethan didn’t somehow feel the same way. Tuesday night he had a hard time sleeping and woke up with thoughts of missing you in the middle of the night.

And then on Thursday, in the middle of the afternoon I realized that Wednesday marked 20 months without you. And to me it explained some of what I was feeling and doing. 20 months is a long time without you, my peanut.

Anyways, to be honest I don’t mind this mood. We spent last week in Saratoga with Sarena and yesterday we arrived in Plum Island. In a different house – just three down from Mad Martha’s. Just in between the two houses we spent time in with you – #81 where we were years 2 and 3 and #35 where we year #4. Walking by #35 last night, I looked in the windows and I pictured you there so vividly. There were great memories in that house but I could only ever be in that house from the outside looking in. I don’t think  I could ever walk in those doors without you.

I sort of like these periods, or maybe like is the wrong word. I just get tired of acting like everything is fine sometimes.

Love,

Mommy

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all you today

Dear Jakey,

You, my sweet boy, were ever-present today. The day started early with me and Ethan visiting a JHFH family. We went to pick up some things that belonged to Xavier and we spent some time with his grandmother. And before that we made our morning visit with you. And we visualized you and Xavier in Heaven. We figured you must have become fast friends or at least we hoped you did. But the thing is that so much remains impossible. And talking with Sheila about Xavier’s last days and about the loss, while comforting, is also tough. Tough because it still seems so new  – getting used to life without you. And tough because it just isn’t something you want others to go through – and because so very few understand the life, the life I had with you. The life I wouldn’t change for anything but a life that no one really knows unless you are in it. The days and nights are all consuming and when they are gone, it is all so empty. And that is tough. But regardless, doing visits and pick ups in your name are some of the best things that we can do.

And then we came back to Saratoga and visited with Cait. And she is so intertwined with you. I remember back to your first days at Prospect and when I instantly felt okay about leaving you there because I trusted her. And I trusted so few to care for you. And I miss her because once you left, we saw her a lot less. She was always really yours – she hung with you so I could take Ethan places and do things with him and I always knew you were safe and loved. 

And between those two things today you were just on my shoulder – so close yet so far. I felt everything about you near and wanted nothing more than to hold you today. And while I couldn’t so that, I got something else. I hung out with friends this afternoon – friends who never met you, yet love you too – and I talked a lot about you. And it was nice. Because sometimes all I want to do is talk about you because I miss you so very much.

Love,

Mommy

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