Tuesday, April 30, 2013

It's My Party, I'll Whine if I Want To

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!


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