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Archive for June, 2014

time flies

Dear Jakey,

It’s funny how sometimes life just moves so fast. I don’t know if it has to do with getting older or what but I seem to get sucked into the vortex of time passing by. The days kind of blur together in the chaos of daily life. And I try to stop everything and have time for you each day. It is often by best moments or at least the moments where I can stop the whirlwind of time. I swam laps in the pool yesterday. And I got lost in my thoughts about you. Good thoughts.

Sometimes though I am forced to think about you and it isn’t with good thoughts. I woke up this morning before 5 at the tail end of an awful dream. And I wonder sometimes why I remember so vividly the bad dreams but have to fight to remember the details of the good ones. This morning’s was brutal and it wasn’t even people I knew and it wasn’t even your face. But it was a baby dying. And it was watching the poor little guy who I will never ever knew die. He was choking, kind of what I imagine happens inside when you aspirate. And I couldn’t stop it. And then he struggled a bit more and then he died. And after that I couldn’t go back to sleep. The dying baby dreams will never get easier. It leaves me feeling like I didn’t do enough.

Some days are harder than others to keep it together. Sometimes I can do it fairly easily, and others not so much. I still struggle to understand how life keeps passing along without you in it. But then today Ethan told Daddy that it was going to be the best day ever. He has field day and the championship game tonight. He is happy. And as I write you, he wants me to snuggle on the couch with him. Which I am going to do now. And when I close my eyes I will picture you with us. Just like the good ole days.

Love,

Mommy

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Dear Jakey,

The other day I was ordering some items for a JHFH kid. We had bought them something to aid with feeding and offered to help them more. We got a big list in the mail of items recommended to help and as I ordered I found myself somewhat overwhelmed. So many of the items they were ordering where things that we used and tried with you. And when we were doing all of this with Linda, finding some of these things were not so easy. And now I could easily order them on amazon! The one that shook me up the most was this:

Image

I am not sure why but as soon as I saw it I got a little teary. We had a pink one that we used with you. And Ethan sometimes wanted to use it and he would take it from you. It never worked overly well but it was one of those items that represented hope for me. And options. That somehow we would be able to keep feeding you by mouth no matter how hard it was sometimes. And I know it was hard sometimes and I still often wonder if we should have let up at some point and gone the way of the g-tube. I just always felt it was one of the only ways you had to control what was going on. And to express yourself. You certainly had your favorite meals and then there were some of my keto experiments that you clearly rejected. Who would have thought that a picture of that particular cup would evoke so much?  But then again, it never ceases to amaze me how many moments in a day I still have my breath taken away. The other day I gasped out loud while washing the dishes and Ethan asked what was wrong. I said nothing. But really the sound of you crying when you broke your femur was ringing in my head. And I wish I could forget that sound and your expression and that horrible feeling of panic and uncertainty. But I hang on to that sound and all these other memories. And I am grateful that a silly picture of a cup can bring me back to my happiest days – the days when you were here.

Love,

Mommy

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