Honesty, the first days at home with True were kind of
scary. At least for me. There we were with needles and syringes and a bottle of
insulin, a couple glucose meters and test strips and we a folder full of
information and we were expected after just 3 days of education to be able to
care for a diabetic child on our own. We felt both ready and unready and also a
little bit terrified all at the same time. The impact of the situation had not
yet hit us and I think we were running on autopilot those first days. We got
through the weekend and on the first day back to school we skipped Rosh
Hashanah services and instead I met with the school nurse to deliver True’s
school plan that the doctor’s sent us home with and the nurse knew more than I
did. I felt like an idiot. She knew when he should test and when they should
call me and honestly, I didn’t even really know those things with real
confidence.
Somehow we got through it all though. We got through the
first weeks of testing in the middle of the night (which Todd took care of
since he is a lighter sleeper than I). We got through the meeting with the
school counselor, nurse and assistant principal to make a 504 health plan for
True. We got through the first three hour diabetes education class. And then
came our first clinic day.
Our appointment was at 9:00am. We valet parked at U of M
Children’s Hospital which is so much more convenient. We found the
endocrinology clinic and filled out some paperwork. The wait wasn’t too long
and the waiting space was large and cheerful with big windows. Then we were
ushered into a typical clinic looking room. Unfortunately, for the first time
in his illness Todd and I had both forgotten to give True his Lantus (the long
acting insulin) the night before so when they checked his blood glucose it was
high, making us both feel like bad parents. We had to admit we forgot it, and
we truly looked like idiots. I don’t know how we all forgot – it was the first
time (and the last) it happened. After the nurse checked his blood sugar we met
with the dietitian who tried to talk True into expanding his diet. Nice try. I’ve
been trying for years. She gave him a handout about Halloween and talked to him
about nutrition. After seeing her we saw the children’s diabetes social worker.
We all talked to her about how things were going. Then we saw one of the
endocrinology fellows. She checked over our blood glucose logs and did a
physical. It surprised me that she checked his feet already. It felt rather
daunting of risks to come. She said they just like to get in the habit of
checking at an early age but that they don’t expect to see any problems for
many years to come, but still, it was smart to keep an eye on the feet. My baby’s
sweet little feet. I cringed in fear of anything ever being wrong with them.
She left and came back with the attending who talked to us
for about 10 minutes and by the time the doctors left we had been in the clinic
for a good two hours and twenty minutes. We went from there to seek out the big
cafeteria in the main hospital so we made the long trek through the hospital to
find it. We got the guys lunch and then found a Starbucks for me where I could
warm up with a chai latte and then Todd found us a lounge area to kill time in
before our second 3-hour diabetes class started. By the time the class was over
we had spent 7.5 hours in the hospital. We were relieved when it was over as
God willing, that’s our last time at the hospital until our next clinic
appointment until December! It feels like a huge relief to be free of all the
meetings and appointments.
Now it’s been over three weeks since True’s diagnosis and we
feel pretty comfortable managing his illness. I’ll admit that both True and I
finally did have a breakdown day where we both lost it. Mine was after an
appointment I had. I came home, made a pot of coffee, and just sat here at my
laptop, writing and crying for hours. The diagnosis just seemed so unfair and
so harsh. He’s only eleven. Why not me, instead of him? Why a boy so young? Why
my boy? Why the rest of his life? Where is the cure? This is forever! It just
all finally caught up to me and I just needed to cry it out. I halted my tears
before the boys came home. Interestingly, True had a similar meltdown that
night, with the same frustrations. He was sick of the restrictions. Sick of the
shots and blood checks. He just wanted life to go back to the way it was. His
meltdown was so painful to me. What could I say other than he was right, it was
so unfair, and I wish I could take it away from him.
I worry all the time now. I worry he’ll get sick. I worry
his blood sugar will go too low. I worry about complications. I worry about his
future. I worry about his day-to-day life. I worry that I’m doing things wrong.
I worry because I don’t get the math and have to depend on the excel program
that Todd gave me to do the math for me. I worry. I worry. I worry. For the
past three weeks diabetes has basically consumed me. I live it. I dream it. I
have nightmares about it. I dream he is unconscious and seizing and I cannot
find his lifesaving injection of glucagon. It’s as if diabetes has invaded my
brain and taken over. I read books and blogs and try to fill my brain with
information, as if somehow that will shield us from anything bad happening. If
I just know more about it I can protect my child. I wish it were that simple,
but for now I feel this great need to arm myself with knowledge. I want to
understand this, and why this happened. But really, I’ll never truly know why,
will I?
For now we are doing okay. As okay as we are going to get
for now. True has adjusted well. He checks his blood glucose like a pro and he’s
graduated from syringes to an insulin pen which he likes much better and it
makes dosing insulin much easier. He’s not limited on his carbs anymore now
that we have a carb insulin ratio and correction factor. We just have to put
his carbs into that mathematical equation and adjust his insulin accordingly.
He even managed to go camping overnight with his trusty pen in hand. We still
have bumps in the road – like me forgetting to pack a needle with his insulin
pen when he went out to dinner this weekend – but it’s all part of the learning
curve I suppose. And that’s what we are doing right now – learning as best we
can.
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