Today Bear turned 6.
And I marvel at the little boy who has come so far.
When he was first diagnosed with type 1 diabetes he was understandably terrified of the needles. In fact, he still is.
Every single shot is a traumatic event that leaves us all a little bit breathless and the hub and I a lot older and more exhausted. We breath, slowly IN and then slowly, OUT.
We sing “Let It Go”. And when the chorus comes we breath again and then we inject.
His body is speckled in bruises from the shots. His arms are hard to the touch because the insulin has created scar tissue there and now we must wait three months before we inject there again.
Nothing is easy and simple and taken for granted anymore. Especially not him. He isn’t just a little boy anymore. He is a boy who understands chronic disease, sick children, the real possibility of death.
He is also a little boy who has gained courage and strength I didn’t know he had, and who has helped me to gain it too.
I watch him give himself his shots and I look on with wonder at this little man so strong and so brave. I see the cupcakes he comes home from school with from some school mates birthday celebration, that he has had to pack away and has to wait till he gets home to indulge in, his face always a little bit sadder on days like that. Because it isn’t about the cupcake, we all know that. It’s about the reality.
The reality of this disease is that it controls his every move. This unpredictable disease that so many, too many, take for granted.
And the reality is that though he doesn’t have a choice he is taking it on like a champ. Making decisions, that are wise and beyond his years. Gaining empathy for others in tremendous ways and supporting others with a maturity only a child who has needed such intense support can know.
He has always been a lovely and wonderful boy.
But he is a better brother because of his T1D
He is a better friend because of it.
He cares more about others, because of it. Because he knows.
He is 6 today.
But he is 6 going on 30.
Last year, shortly after his diagnoses Bear came to me in a cold sweat one night with tears in his eyes. What happened? I begged to know.
Through sobs he told me that he dreamt that he died when he was 6 years old. I swallowed. Like a good mother I said all the right things:
It was just a dream.
You won’t die when you are six.
Sometimes dreams can feel real, and when scary things are happening we can dream scary things, but really truly, it was just a really scary dream.
You are ok. Mama is here.
I said these things, and I believed them.
I do believe them.
But it shook me. And for a year and a bit I have both anticipated and dreaded today. My sweet little boy. Faced with a life, a disease that he feels so alone with. Forced to find a courage little children are not supposed to know about. And it shakes me even more that all I can do is chase the rabbit down the hole, always trying to catch it – always trying to keep his blood sugar levels in balance.
Bear has what is called “**hypoglycaemia unawareness” a condition that can be common in children with T1D that prevents him from recognizing the signs of low blood sugar, especially in the middle of the night.
He’ll wake up – they said
He’ll have a nightmare and he’ll wake up – they assured us
But no, he doesn’t. He sleeps soundly through this incredibly dangerous blood sugar reaction.
This last week the nights have been heart wrenching and anxiety driven. JBear just can’t get his blood sugar up. And yes, as is typical of the diabetic with hypoglycaemia unawareness, he isn’t noticing.
No bad dreams or thrashing around waking himself up. In fact, even when we do jar him enough to get him to sit up half awake and recognize that we are there to save his life, he stays disoriented and becomes verbally abusive (like a bad drunk) and because of this he refuses to take what we are offering. He refuses the only thing that can save his life at that moment – juice. We must beg and threaten. We must force him.
And it’s awful. Just awful.
Yesterday he had trace ketones telling us that his body was not able to get any glucose (energy) from his cells so it was now attacking his fat cells. This can lead to DKA. It was scary – we tested and re-tested him all day trying to bring him to safe level.
Then last night his BSL dropped.
It was 4am.
I had a sinking feeling that I should check him. He was 4.0mmol (he should be between 6mmol and 12mmol). Luckily not too low yet, just low enough for me to squirt some maple syrup into his mouth via syringe and be relatively confident his BSL was going to rise to a good number. And luckily it did.
The thing was though, that his numbers were normal at bedtime and at midnight. Better than normal – he was 8.1mmol. His perfect number. The number we strive for. The number, that in the middle of the night I no longer trust because I have no idea if his BSL is going up or down from that point and why. Luckily the maple syrup did the trick. And I guess if we can put anything positive to this disease, especially from the perspective of a child, having to save your life by ingesting pure sugar as quickly as possible ain’t the worst.
In a situation where a child’s parents says “are you going to die if you don’t get candy? Eh?” he can actually say “yes, smarties can save my life”. Seriously.
So my beautiful boy is 6 today. And he is full of hope and love and courage. He no longer remembers that nightmare from a year and a bit ago that has burned itself in my mind. He is happy and glowing and full of dreams and wishes.
He is a marvel, this one.