Drago has been sick with the stomach flu for a little over a week. Just awful. He went back to school today but he isn't 100%. Well, I guess, really when is he? His immune system seems to pick up every bug going around. He just can't seem to get a break. The good news is the pump made his illness "easier". It's always a balancing act and even more so when they are sick.
We got to hear Lauren Sivewright talk about her experience in the artificial pancreas trials. It is so hopeful. Both the boys didn't want to go, but after listening to her they were so excited. Sugar Bear was constantly whispering in my ear about how we "have to get this", this coming from the boy who is hesitant to have devices attached to him. But the thought of more "normalcy"....it brought tears to our eyes. Unless you live this it is really hard to describe the invasive nature of this disease, it colors everything.
We are in full swing of fundraising for our walk. I can't believe this will be our 5th walk for JDRF, our 3rd with two Type 1s. Every little bit we raise goes towards these innovations like the artificial pancreas that will make my children's lives so much better. I don't know if we'll ever see a "biological cure" but strides are happening that give me hope. And hope is really all we have.
I don't cry as often about my boys and their disease anymore but this past week got the better of me. Everyday is such a fight and some days it is all out war. And sometimes we feel so alone with it. It's hard on my relationship with my husband. It's hard on my relationships outside of our immediate family. And it takes a toll on all of us. The days and nights blend together because this disease doesn't rest. We're exhausted. Our brains are foggy. It is so challenging to keep functioning, to keep putting one foot in front of the other, but we do. We have to. I look at my boys and I see bravery, courage, determination. They are my heroes. There is no flinching with finger sticks. No grimacing with injections. And don't think for a minute these things don't hurt or you get used to it, well maybe you do somewhat. You definitely build up scar tissue on the fingers. Anyway, I always ask afterwards and they always give me a number on the pain scale, sometimes lower but many times 5 or above. This disease isn't for the weak.