This photo says it all...
The pallor, the grim expression, the dark circles creeping up under his eyes.
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His focus wouldn't settle. It was like he couldn't find a place or an activity to make him feel "OK" or "right" in his body. This is what I observed of Joe at the New York Hall Of Science in Queens, NY last weekend when we were visiting my sister.
I suspected a low. Right as I was suggesting a blood sugar check, he stopped abruptly, sat, and said in a decrescendo voice "I feeeel low." He was ... a 50 graced the glucometer screen. Four Starbursts were dispensed to Joe, one to Bridget, and one to Cousin Chloe. We all copped a squat next to Joe right in the middle of the exhibition floor. We then waited. We waited with Joe. We waited for his legs to work. We waited for his mind to clear. We waited for him to feel well enough to move on.
At times I find it difficult to explain life with diabetes. Sure, it is relatively easy to talk about insulin, pumping, counting carbohydrates, and "boosting" for activity. But there is oh so much more to it. The waiting. The waiting is something I don't talk much about. We do it. Quite often, I suppose. Joe has some lows that will stop him dead in his tracks. When I see him splayed on the ground, on the floor, on the ice and hear the words "my legs won't work". I know. I know it is a bad one and we will be waiting a good 10 minutes or so before he will feel well enough to continue with his day. Sometimes there will be crying. Sometimes he needs to curl up in my lap. Intense hunger accompanies these lows as his brain waits for the glucose to hit his blood stream and cross the the blood brain barrier. Eyes stinging... ****ing diabetes.
A day-in-the-life of loving and supporting a child with type 1 diabetes.
7 comments:
I can't express to you just how I know EXACTLY that look on his face. The crumpled over feeling. The wobbly legs feeling.
I always say to my friends and family, "it's the waiting game that's the hardest part."
It means the world to me when someone I love puts their hand on me while I come back to earth. It makes me feel "grounded" and reminds me that everything will be right as rain.
this.post.is.real!!!!!
I too know that look. Hate it and loathe those feelings of the D holding us right in it's palm for those few minutes. Love to you, Reyna. xx
I know that look all too well..and that sense of time going ever so slow as you count down 10, 15 minutes which can seem like an eternity. XO
I hate the lows... especially if they come at night. All this time money has gone into research for a cure, but there has been little (very little) change in the insulins, very little research done about how to curb this "side effect" of insulin therapy. Before even a cure, we need safer insulins or some way to time-release glucagon into the body in case of lows. Insulin therapy is a very dangerous tightrope, especially for young children... there is no alternative. Maybe we should all send mass letters to Merck. Merck purchased SmartInsulin for 500 million, I believe. But it seems like SmartInsulin has been shelved or put on a back burner; does not seem to be one of Merck's top priorities. We need the research on this insulin to move forward to animal studies, as had been promised by Dr. Zion, prior to Merck's purchase. Since Merck sells no other insulin, I believe the delay is beaurocratic, not deliberate. I am sure they want to market this drug, as they stand to profit immensely if the drug is successful.
is it crazy that it takes Isaac 20 minutes to come up from a low...and man are those minutes the longest minutes EVER! That look on Joe's face in the first picture says it all, when I try to explain to others the "low look" that is exactly it - no fun at all. I am sure the rest of your trip was fab, you were with your sister for goodness sakes what could be more fun :)
:( I hate the waiting game too. Such a supportive family to stop and wait with him! Hugs dear friend!!
I just read this post today. I can attest to the horrible dread waiting for a "low" to bring me back to normalcy. My mind is so scattered with no focus other than how bad I feel. My heart breaks seeing Joe in the horrible grip of the low. What warms my heart is seeing everyone there with him...on the floor...right there with him. I can't begin to tell you how grateful I feel when all the fog clears and my loved ones are standing there...patiently waiting.
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