There are boxes piled up in the mud room. Empty flattened boxes. Waiting for me to make a move. Literally.
The stress level in the house is high. We don’t know where we are going next. So far all we know is that we can’t stay here. Our home is sold and we have to be out by 6pm on April 4th.
But this post isn’t about that, it isn’t about me. It’s about my boy.
In 4 days he will have his third “Diaversary”.
Three years of us all ‘dealing with’ and him having this disease, Type 1 Diabetes. Diabetes Mellitus. Mellitus, the Latin for “honey” “honeyed” and/or “sweet as honey”. Diabetes, meaning to siphon. In other words, to siphon or discharge honey/sweets from your body. “The Sugar Disease”.
He’s come so far this sweet boy. From injections to pumping to counting carbs and recognizing his lows. From the moments of triumph where he didn’t even move or fuss at all when the inset was put in, to the moments of fear where he seized in front of us and we finally used the glucagon that we were starting to think was just a Diabetes prop. And all the moments in between.
All those moments that pass as if we’ve always lived like this. The night checks, the tantrums over wanting a juicebox when his meter said he was normal, the way we watch his moods for signs that he is high or low, the way every bad mood or bad decision on his part is double checked with a blood test. The way we look at him when his blood is in perfect range and he was still acting like an ass. As if a 7 year old boy can’t just be an ass sometimes. The way his sisters ask him constantly “can you eat that? Did you check your blood?” – and they just care, I know how much it drives him crazy – but they just care. The way that all the kids in class got a small bag of treats and he was given a bag of stickers this Valentines, and how cheated he felt. How angry I felt at the parent who would make him feel that way. But he was angry at diabetes, not at the kid or the mother. He knew they had made this choice thinking it was the right one to make, not out of ignorance so much as out of caring. Though the two can look alike from the point of view of a mother bear who only wants her child to feel included. But he was angry at the disease. This disease that makes him stand out as much as it makes him feel unseen. And this is our normal.
This week is especially hard for me. All the house stress aside, this week brings back all the intense feelings from that day he was diagnosed. I remember weeks beforehand my confusion.
“Why is he so aggressive?”
“Why has he stopped waking up at the crack of dawn and now I have to pull him out of bed?”
“Why is he peeing his bed?”
“Why is he so thirsty?”
“Where did his energy go?”
“Why is he so unhappy all the time?”
Like any good mother I went to my mother Tribe and inquired. My best friend at the time offered this: “He’s just regressing because of starting school” “four year old’s go through phases” “This is normal, don’t let yourself get paranoid”. But I knew, somewhere deep inside, that this wasn’t “normal”. Though I had no idea what it was – so I went with what I did know, Asperger’s. It had to be something. And he was so sensory oriented these days and aggressive that I thought “perhaps this is what AS looks like in him?”. At the assessment for AS I non-chalantly mentioned his outrageous thirst and bathroom escapades. I thought nothing of it. The Neurologist who was assessing him said “I don’t think he has Asperger’s Syndrome…but I think you should go to the doctor for a check up”. She didn’t elaborate. I didn’t ask her to. I didn’t think much of it to be honest.
Still, I did finally decide to take him in. Against the advice of my “then friend” and assuming this *had* to be something other than a phase (I suspected a bladder infection). We went to the doctor’s office. They asked him to pee in a bottle, both he and I knew that the little urine collection bottle they gave us was a joke. We had been watching him pee buckets for weeks now. But we did it and we were lucky that his urine only skimmed the top and didn’t spill over. His urine was colourless and cloudy – as it had been for a while. The doctor and nurse looked, what I thought, surprised or amused at the extent to which he filled that bottle. What I know now is that their looks were of concern and shock. Things began to move very quickly then. A blood test with a lancet and a funny looking hand held device (meter) was done. They moved in and out of the room all the while giving us gentle smiles and acting so calmly that it appeared just that – an act.
In those moments all you want to believe is that the act is real and there is nothing to be concerned about. All the while your parental instincts are firing off like firecrackers inside you and you don’t remember how to do anything anymore but comfort your child and like them – act calmly and smile gently. “All will be alright”
The doctor stood very close to me when she came to speak to me, as if she was expecting me to fall. She said “I think it might be diabetes. You need to go to the hospital emergency room right away. I’ve called ahead and you will have a room waiting for you, do you need to call anybody right now?”
I didn’t really know what diabetes was, not really. A friend of mine had died from it years ago, falling into a coma alone in her bachelor apartment and being found three days later. That was all I knew. But she was an adult – he was a child – I said to myself as if that made any difference. But the doctor said “think it might be” so perhaps it *was* something else, something benign…
Even at the hospital I kept asking “but what else could it be?” to the doctors who were working quickly to get blood from him and put an IV in his tiny arm. Finally someone answered me. “Nothing. It can be nothing else. It is Diabetes”. I remember fighting that they had said “might”. I remember fighting for them to do more tests. A doctor came up to me and said “we don’t need to do anymore tests. We know what it is, it is diabetes.” Denial is such a strong thing. I stayed stuck in it all through “Diabetes Boot Camp”. I stayed stuck in it even when I thought I wasn’t stuck in it. His seizure was the moment where the last of my denial was finally shed. Like snake skin my denial had grown thin and transparent and much of me was new and tough and connected to his disease, but until the moment the skin of denial fully fell off that night in his bedroom while I held him so tightly and realized with open eyes that he has Type 1 Diabetes, and that it almost killed him. Until that night I had not realized how important my job really was. I have to keep him alive. Not like the rest of my children, but medically. I have to walk the tight rope for him till he can do it himself. And there is no net if you fall.
I. Have. To. Keep. Him. Alive.
That isn’t dramatic, it’s fact.
Three years. Just a small portion of a lifetime of this to go. But sciencitific discoveries and experiments are growing in the way of a cure, and perhaps in his lifetime he will be able to say “I had diabetes”.
This Friday we will not celebrate his diagnosis, so much as we will celebrate overcoming the sadness of his diagnosis and embracing what he is apart form his diabetes. We will celabrate his bravery and his strength throughout this 24/7 disease. We will celebrate that we, as his family are doing our very best, especially through the really hard times and that we’ve made it this far this well. We will celebrate his awesome A1C’s and we will celebrate it all in the name of all the other diabetics out there who are fighting the good fight. The fight to stay alive.
Happy 3rd Diaversary sweet boy.