Photo credit: Rosie Kew/Clique
When your child is diagnosed Type 1 Diabetic, if you’re
anything like me, you think you have a pretty decent idea that your life is
about to change completely. I was aware
enough of the disease and how it is managed to know that it meant finger-sticks
and shots, and to know that my heart was breaking because I knew and she didn’t
– she had no idea that I was about to allow her to be poked and prodded and
examined and that she would have to keep doing it for the rest. of. her. life.
What you don’t know, and what no one can explain, is how
completely it will change in other ways.
I didn’t know that sleeping through the night would become
the exception rather than the rule. Or
that you both love and hate technology, because it has improved so much that it
allows your child to live a mostly normal full life…but it is still so new that
it fails often, and that little bit of uncertainty is hell on earth. I didn’t know that I’d be struggling not only
with the results of the disease, but with the emotional impact on a child I
love. I didn’t know that some people
will scoff at the seriousness of the illness, and will treat my child as if she
is overreacting when she’s upset about it, and scoff at my statements of stress
and exhaustion.
I never would have guessed that an appliance that makes
delivering insulin so much easier would become hated in a way that no one can
imagine unless they’ve relied on it day to day for their very life.
I wouldn’t have believed it possible that a child’s
personality could change so much, so quickly.
Or that the failure of some to empathize and understand could hurt so
much.
I had NO IDEA how much work I would miss. I am thankful every single day that I co-own
my company, so I can’t be punished for missed work. I have no idea how those
who hold normal 9 to 5 jobs or otherwise work for others can keep from getting
fired: The routine doctor’s appointments
an hour away which require at minimum a half day away from work, and for my
child away from school; Your child's missed days
of school due to unexpected illnesses, abdominal pain, complications.; The
struggle to figure out what your child has missed, and how to make it up, and
realizing that your child no longer cares and is blowing ALL of it off; The
meetings with teachers, counselors, social workers; The missed work due to utter physical and
emotional exhaustion when you just can. not. do. It.
Field Trips. Oh yeah,
did I mention field trips? Unless there
is an RN or LPN included in the chaperones…you’re going too.
Birthday parties?
Those too. You get to go to every
single one. You get incredibly good at
googling menu items for their carb content, and eventually create a mental
cheat-sheet of routine items that you see over and over again.
You buy a highly accurate scale, and carry it around with
you on trips because sometimes it’s just easier to weigh food than estimate
otherwise.
You dread trips to certain restaurants, because you KNOW the
child will ask for that slushy that contains 140 carbs…and you know you have to
say no because it causes her blood sugars to skyrocket and you spend days
trying to get her back to normal.
You didn’t know that puberty was your enemy in this
battle. Hormones cause crazy things to
happen to blood sugars. As if the mood
swings weren’t bad enough, now you have to contend with sudden fluctuations in
highs and lows, in correction rates, in basal requirements. And they Change. Constantly.
On the up side, you are instantly part of a club - Parents of kids with T1D: other parents you can contact to commiserate, get suggestions, or just hang out with when you need that break. You share stories of diagnosis, treatment, favorite foods. You know these people will understand when you've just had it, and your body and mind are protesting the strain, and you just need to let it out.
Because here's the thing - you have no idea what the stress of being responsible for your child's well-being day by day, hour by hour, will do to you. You think you know - after all, you are a parent! You held this tiny infant in your arms, you were 100%, completely, independently responsible for keeping him or her alive through those first few terrifying days, weeks months of life. You think, "No problem! I got this!"
And, if you're lucky, you do got it. You can learn to handle the needles, the blood glucose meter, the calculations of total carbs based on serving size, the conversions of grams to ounces, or vice versa, the correction factor tables, the dosage guides, the difference between basal and bolus, and fast-acting versus long-acting insulin. What about insulin pumps? Doctors and other diabetics sing their praises! So, which one? is this one better than that? what do they do? how do they work? once you pick one, how do you program it? how do you convince a scared child that yes, it will hurt, but it will make things SO MUCH BETTER! what happens when your blood glucose reads HI and it won't allow you to bolus for that? How do know when the cannula fails and your child isn't receiving ANY insulin when you think they are? how to do you know when that happens? What about checking for ketones? Did your child stick that little test strip into her urine stream to make sure her body isn't building up poisons in her blood stream that can kill her? If she didn't, how do you get her to understand she HAS to do this? You want her to stick this WHERE? EW! When do you call the doctor? when is it time to pack up and head to the ER?
Will tonight be the night when you wake up at 2:38am, for no apparent reason, and test her blood sugar...and have it read 12, and you cannot wake the child up. Will this be the night you have to administer the emergency glucagone shot, and call an ambulance?
Will this be the day you kill her......
No Problem! I got this!
and you do...until you don't. Until the stress and the sleeplessness and the worry finally take their toll, and your body says, no more. You need rest. You cannot do this alone.
<deep. breath>
This is the life of a parent of a T1D child. We don't want sympathy. We do want understanding. We don't want pity, or statements of "oh my heart breaks...that poor girl!" We want better research. better funding. Fewer battles for insurance coverage for the medicines and supplies and equipment that is required to keep their child alive. we want a cure.
and we want sleep. uninterrupted, stress-free, sleep.
On behalf of all of the T1D parents out there, I want to apologize for those times when we just don't have enough left to care about your topic of interest. It's not because we don't value you, or your interests, or your well-being. It's because we only have so much, and sometimes we're just tapped out. And we hate ourselves for it. Please don't think I'm joking. You think...no you KNOW...that you are a failure as a friend, a wife, a lover, a boss...whatever it is. Because you just don't have anything left.
But you have to find it, because in a few days, hours, minutes, another crisis will appear and you will have to make that judgement call. You will have to make another decision that directly affects your child's well-being. You will have to approve having your child restrained in order to get the IV in, give the 10th injection of the day, the 2nd blood draw....
Most of us aren't nurses, or doctors, or otherwise medically trained. We're just moms and dads. We were never taught how to do this. We were never trained in how to make these decisions without investing our whole hearts into the process...to learn to accept that we are human and humans make mistakes, and we are just doing our best...this is our CHILD. One of those people put on this earth that is our responsibility to keep healthy and whole.
So, the next time you see that friend, or sister, or acquaintance, whose kid is T1D....give him or her a hug. Hold on to her, and say, you got this, but you can let it go just a little right now. You are human, you are doing an amazing job, and you can just. let. go.
And hold on for the storm is there, just under the surface, and it just might break over you.
But that's ok...because, you got this.
Holly
