But today I remembered you...
I remembered when you got your Tobii and you talked and talked and talked about everything! You used it to tell a classmate "good job!" after a presentation. You told the principal that your test was boring, and your teacher was boring! The day after you stayed up until 4 am playing, you announced you were "tired and grumpy." When Linnaea was born, you navigated away from what you were supposed to be presenting to tell everyone, "Baby girl! Baby girl! We have baby girl!!" Your teacher suggested that we get you a t-shirt that said, "Moving my seat won't help, I talk to EVERYONE!"
But it wasn't just talking. You understood. When I was talking with someone about which of your siblings would want to learn to change your trach, you just listened, until we got to Michael. You started nodding your head. When I asked you, "So do you think Michael wants to change your trach?" you nodded more and more. He wasn't around so I asked him later and his response was "of course I want to!"
You knew your brothers well. You knew that while they all would have done anything for you, you also were aware that some were more comfortable with medical issues than others.
Of course, when Michael did try to change your trach, you were a nut! Instead of lying still with your chin up high like you always did, as soon as he pulled the trach out you started doing crunches, completely hiding the stoma he needed access to. Silly boy. You loved to tease him, and he loved to tease you. I love the bond you have.
But in reliving those memories, I could also see the beginning of the end. I laugh and smile at the earlier memories, but the last two years are much more difficult, painful, poignant.
My brave boy.
You were so strong. I could see the decline, the struggle, but not nearly as well as I can now, looking back.
I remember feeling like your 12th birthday might be your last. It wasn't, but it was the last we could hold a party for. And unlike any since your first, you were really tired and slept quite a bit. Your 13th birthday you were in the hospital, so sick. We had almost lost you just a few days earlier.
Your body was slowing down; it was tired. Your big wonderful heart was struggling. Your digestive system wouldn't work right. Before that, we used to joke that you had a cast iron stomach. You loved a full tummy and moved your food right on through. But not the last two years.
In February 2022 when you were so, so sick, when you came right to the brink of leaving us, it damaged you. Your brain certainly took a hit, but so did your heart, your lungs, pretty much everything. And yet, you soldiered on.
My sweet boy, thank you, thank you for everything you gave, everything you taught, just everything. Thank you for enduring, for fighting, for staying as long as you did.
Miss you, miss you so much.
Love you even more...
A thirteen-year-old heart shouldn't feel like this.”
Sending love! Thank you for sharing
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