It’s My Party, I Can
Whine If I Want To.
Nobody has necessarily
outright told me I’m playing the victim after my sons’ Type One Diabetes
diagnoses, but it begs the question if some have thought it. If the thought has ever crossed one’s mind,
this one’s for them.
Most days I handle this diagnosis well, but there are days
it gets to me. This craptastic disease
victimizes not only the innocent patient, but it also victimizes the
family. Diabetes, the Robber.
My 7-year-old sons did nothing to cause or deserve this
disease. Yet, it was thrust in their
laps, and they will be forced to deal with it until the end of their lives or
until a cure is found…whichever comes first.
Diabetes is not the worst enemy in the world, but he has still stolen so
much from my sons and our family. In the
words of my friend, “because of this theft”, they will always have sore fingers
that get more calloused and tougher by the day.
They will always have to take insulin just to survive, whether by
regular shots or via pump. They will
have their blood drawn via venipuncture and have to see the Endocrinologist
every three months. As if that wasn’t
enough visits, they still have to see the pediatrician for regular check-ups
(like any other kiddo), and they have to go to the Ophthalmologist
annually. All of this, to screen them
for long-term complications including kidney damage, vascular damage,
blindness, and nerve damage. That’s a
big EXPENSIVE pill to swallow for an 8-year-old baby…an expense they’ll have
all of their lives. Most of the time we
do our best and roll with it, but there are days when it just gets to me and I
feel a bit sorry for myself (and them even more!).
Diabetes the Hijacker has hijacked their innocence. Now, they know way too much about anatomy,
medicine and health than any child their age should have to know. They worry about immediate and long-term complications
of an abnormal glucose (high or low). They have to suffer the curious stares
and questions of classmates, friends, and strangers when they check their
sugars, have to go to the nurse daily, or hear their Omnipods beep. They have to endure being teased by ignorant idiot
children who target anyone who has to do something out of the ordinary. And, Mommy has to worry about ANY minor
illness knocking them down and hospitalizing my child with diabetic
complications. What you fix with TLC and Tylenol can devastate my diabetic
child. The majority of the days, we work hard to manage it and teach the boys
to roll with the stares and teasing, but sometimes, I feel sorry for us, and I
just want to throttle someone.
Diabetes the Burglar has stolen the simplicity of having a
meal or an outing. We have to count
every carbohydrate my boys consume, every meal, every day, every time. Nothing is free. Diabetes robbed them of the freedom to just
pop some M&Ms in their mouth or grab a cookie and run about their day. A field trip, walk to the park, or picnic is
not simple anymore. A restaurant outing
can be a nightmare with trying to make sure everyone orders what they want,
count the carbs, dose the insulin.
Needless to say, I don’t think I’ve eaten a hot meal in a restaurant in
a long time if the boys are with me! Most parents just grab their shoes and
head to the park or for a walk. I have
to bring the D-bag and pack a snack. Most parents just worry about what the kid
will wear and pack a quick lunch for a school field trip. Today, it took me almost 45 minutes. Pack 2 lunches. Document the carb count of every item in the
lunch kit. Pack Diabetes Bag…the same
D-bag that has to be taken with them wherever they go. Don’t take your simple picnic or field trip
for granted. Most days I just roll with it, but sometimes it really pisses me off!
Diabetes the Bandit has stolen regular undisturbed sleep
from my boys, my husband, me and the grandparents. I paid my dues. I breastfeed twins for 8 months, and I spent
over 6 months without sleeping longer than 4 hours at a time in order to give
them the best start possible. Now, there’s
no such thing as going to bed early. If
I do, I have to set an alarm to check the boys’ blood glucoses (or make sure the hubby stays up). One night, it’s high and I have to fix
that. Other nights, it’s low and I have
to poke them and hope they will wake up enough to consume carbohydrates to
restore normoglycemia. Unless the boys
are at Grandma’s house (whereby she
is getting up in the middle of the night checking them), I don’t get to sleep
uninterrupted. Ever. I think when they are 33 I’ll still worry
about them in the night. Most nights,
the boys sleep through the checks, but sometimes it awakens them, too. I stay up late to assure they are ok, and I
get up again during the night to make sure they stay ok. On top of that, there’s
no sleeping late either. If the boys
sleep past a certain hour, I’m immediately gripped with gut-wrenching, heart-pounding
fear that the worst has happened to them. It’s not cool at all. I thought I was over that when they passed the age of SIDS risk. Life's not fair. Most
night, I just suck it up, but sometimes, I just cry.
Diabetes the Mugger has taken away life options for my
boys. Never will their lives be like
someone without diabetes. They can
pursue almost any career path…almost. They’ll
never be a soldier as much as they’d like to.
They’ll never be able to live alone as it would be unsafe for them, thus
stealing complete independence from them. They will have to have constant medical
identification on so they aren’t mistaken for a drunkard, thus advertising their private business for all the world to see. They’ll have to make special provisions
before they operate any vehicle. In whatever schooling, work, or activity they
choose, Diabetes will insist upon being noticed and acknowledged…or he WILL
wreak havoc! Most days, I don’t think too much about more than the immediate future. But, when I hear them passionately singing “Army
of One” (by Bon Jovi, of course), it breaks my heart that they’ll never get to
be that soldier Jon sings about.
Sometimes, I pity us.
I was invited to this party, but I didn’t want to go. Now that it’s “My party”, I’ll cry (and
whine, and pout, and feel victimized) if I want to! I’m not usually and don’t like to be a Debbie
Downer, so most days are fine. If you know me, know that I try not to saturate
every conversation with Diabetes talk. But, this thief has not only stolen so
much from me and my boys, but he dominates my thoughts to boot. I try to keep it light, but we live with this
every
day. Every. Day. And, since I’m
forced to act in a role for which I am ill-equipped, will never fully
understand, and will always be inadequately trained….I’ll whine and cry if I
want to!
What I can do to cope is listen
to my Bon Jovi, joke, love my family, and do my part to raise money in the
hopes of finding better treatments and a cure.
Support us today so we can party without crying!
Rhonda
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