Safe Zone.

“I don’t know why I do this.” He whispered to me through his tears.

My heart ached for him.

He had just spoken to me like I was the worst of the worst. He swore, he dis honed me, he called me mean, a monster, “stupid fucking mama!”. 

He said he hated me.

My heart sunk, but I held on to him, loving him harder.

My heart sunk, but I looked at him with soft eyes and understanding.

My heart sunk, and I sat there wondering if this was really making him hate me.

I walked away for a minute, respecting his wish for me to not touch him, not look at him. As he sat at the table writhing in anger I waited. Waited for him to take a breath. And when I saw it from the corner of my eye I asked him gently if he wanted a hug. “Yes” he sobbed, then he collapsed into my arms and whispered “I don’t know why I do this”. I held him tighter and said that it was ok. That I *did* know why he did this, and it was ok. He was allowed to be angry, to be furious. I told him that I understood he didn’t really hate me.

“I hate diabetes” he said.

“Me too” I responded.

I have since started saying “you don’t hate me, you are angry with me.” And, “you hate diabetes and getting needles, not me”. He will often immediately agree, he’s a reasonable guy that way. In fact the other day he replied with: “I do hate it. I wish it was gone from me. Not given to you, or to Pups, or to dad, or Tig or Bean…just gone from me.”

I get it baby.

This whole experience has been surreal. Every time I change a lancet in his “finger poker” or start prepping the insulin pens I think: “No, this can’t be real. How can Bear have Diabetes? This wasn’t supposed to be his story.” When he started having nightmares right after being diagnosed about dying when he was six years old I couldn’t help but fear the future. Sure, it was just a dream, I knew that deep down and that is exactly what I told him – but my lungs were tight and my hands clenched tight for many weeks until I could convince myself of the same thing. I’m still scared, to be honest.

He caught strep and the diabetes reacted. His blood sugars jumped up to extremely high levels. We had to “correct” his doses of insulin by giving him extra shots during the day and night. We had to check his blood sugar levels every two hours. Five days of this till his levels finally dropped. Our first illness + diabetes. We made it through.

Last night, when he dropped to a dangerously low blood sugar level (twice) and would not wake up at first and then, once awake, refused to drink the cup of juice we had for him – we were struck with the realization that we might be forced to give him a shot of Glucagon (a fast acting sugar kind of like an epipen’s fast acting adrenalin dose). We were scared. Thoughts of coma and death rushed by my mind through my instinct as a parent to get this kid to drink some damn juice. This disease was becoming ever more evident, more prominent, more real. Now it was taking over our nights, not just our days. I couldn’t sleep anymore, not when I knew I was getting up at 12am and 3am to check on him.

He finally took the juice, and as vehemently as he had refused it – he now drank it. He turned his back to me saying that he hated me and would never look at me again and then he drank. And with gusto as if he had been without water for days while trudging through the Sahara, he drank. He drank like a hungry newborn nursing after hours without its mother, ingesting the liquid like he might never drink again. I took a breath, satisfied that he was giving himself what he needed, finally.

Through the massive gulps and swallows he sobbed.

My heart broke for him.

As his body shook with weeping I quietly reminded him it was ok, that I loved him, that he would feel better now. He ran into my arms and wept some more.

My skin, like a Rhinoceros, is thickening, toughening. I am getting through more and more of these moments. And as the doctor so eloquently put when we first met him a couple of months ago “you will get used it. It will all become a new normal.” Fuck him, he was right.

I hate this normal.

Now it looks like Bear might have conjunctivitis accompanied by stuffed up sinuses and a cough. With Diabetes, it is dangerous when he gets sick. His body’s immune system has been compromised by the diabetes, he doesn’t just ‘have a cold’ anymore, his blood sugar levels rise unexpectedly to dangerous and potentially life threatening highs. We are on high alert, we watch, we listen. We are getting wise to this disease. Noticing when his little body is shaky, even when he doesn’t, even when he can’t – even in his sleep. We are noticing the extra giddiness when he is high and the moodiness when he is low. Illness, blood sugar levels…we cannot dismiss these things anymore. There is no safe zone but the safe zone.

We work our hardest to stay at a blood sugar level of between 6 and 12. We push for 8. It isn’t easy to figure this all out. We have no choice, we must try. If we can, we must succeed.

I am sleeping with him tonight. He is snoring horribly through his stuffed sinuses. He kicks, he grinds his teeth, he steals the blankets. I won’t sleep well. But if he starts to shake, I’ll notice. If he goes pee more than once, I’ll notice. There is no safe zone but the safe zone.

We must stay in the safe zone.

And if he wakes up from a nightmare, I’ll be there. Right there. No matter what he says to me, because for him – I am the safe zone. And I will stay the safe zone no matter what, that much I can ensure.

That much I will succeed in as long as I can, as long as he’ll let me.

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3 Comments

Filed under Asperger's, autism, diabetes, diabetes and illness, diagnosed, schedule, Sensory Processing Disorder, strength, Transition

3 responses to “Safe Zone.

  1. You are one tough cookie. Hang in there. Hopefully things will get a little easier or at least not so complicated.

  2. You are amazing. Thank you for sharing your story and your journey and your strength. Your writing makes me cry, on so many levels…thank you for your insights. I’m thinking of you guys as you grow stronger each day and you adjust to a “normal” you never asked for. That part I get, in my own little way.

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