Thursday, May 7, 2015

Aren't They Just Like Other Kids Still?

Q:  Well, they're really no different than other kids, right?

A:  Yes, and no.  Sure, they can still do things other kids do; they'll still act like other kids act, but...... innocence has been lost.

Can you imagine how heavy it must feel to have to be able to track your own health - at the ages of 6 and 9?  To know that a severe low could result in not only feeling 'yucky' but seizures, unconsciousness, even death?  To know it's imperative that you try to 'identify' what those lows and even highs feel like; so you can tell mom and dad; so that life saving measures can be taken?  Our girls have had to grow up.... fast.  Overnight really.  I am a big fan of teaching responsibility at a young age. But... this disease?  It's not like taking responsibility for a pet, or of chores mom and dad have given you.  It's responsibility for ones own life.  That's huge.

No longer can play be carefree.  Before heading out to run, ride their bike, jump on the trampoline with their siblings and friends, they have to check their blood sugar. If it's low?  Snack and wait.  If it's high?  Push fluids, possibly administer insulin, and monitor often.  Then... while playing.... they have to stop, come in for a blood sugar check. Again, if low, snack and wait.  Then once play time is over?  More checking.  Follow that with checking a couple hours AFTER playtime has finished.  Blood sugars can take huge dips and soars following excessive exertion.  Even if 'just' from play.  It's exhausting.  Worrisome.

They can no longer just 'run with abandonment' as kids like to do.  They. are. tethered.

On the topic of 'being tethered'.  As the girls move forward we hope to have them using insulin pumps and continuous glucose monitors.  Great tools.  Potentially life saving measures.  A 'bionic pancreas' of sorts.  However, as another D-mom put it, our kids sometimes feel like 'cyborgs' because of these life saving devices.  Do you think they 'feel' like 'every other kid' when they have to be connected to various devices just to monitor their blood sugars and keep insulin coursing through their bodies?

Almost synonymous with loss of innocence is the loss of independence.  These lows and highs somewhat dictate their lives.  What, when, and how they do things will all be tainted by diabetes.

Add to that decision making they have to make. Hard and basic decisions.  Something as trivial as pastries being available at church between services results in a difficult decision now.  Our girls have to make a choice.  Is the 'treat' worth another shot?  Do they simply do without and feel left out?  So many things that were once simple, a part of childhood, have been robbed from them.  It's like a black cloud lurking over them, always, wherever they go, whatever they do.

Q:  Isn't their future fine, now that you know and can treat them?

A:  Again, not a black and white answer.  Yes, hopefully their future is 'just as bright' as the next kid.  They CAN do whatever they want and put their minds to in terms of their life.  Yet, this disease does have a grave impact on their future.

They may experience rejection from taking part in certain activities, sports, etc.  If the individual running the activity doesn't understand T1D, they may not allow them to take part.  If they are in a 'brittle' phase with their diabetes, we may, as a family, choose not to take the added risk of some activities.

Plus the bullying that could transpire because they are 'different'. They have to check their blood sugar (multiple times a day); then administer insulin every time they eat.  Not all kids are kind when it comes to such 'oddities' when they aren't familiar with these measures.  Friendships can be altered, shattered, or not formed all because of T1D.

Not knowing what their blood sugar levels will do may rob them of some of their confidence.  Learning to drive can be frightening. What if they experience a severe low, while driving alone?  It's daunting.  What other 'normal childhood milestones' might be impacted due to these uncontrollable variables?

What about the fear of other auto immune diseases?  Yep, kids with T1D are, unfortunately, at a greater risk of developing another disease of the immune system. Doesn't seem fair does it?  It can impact their future.

Then there's the thought of marriage.  Even though none of us know what the future holds, most of us have dreams of our future spouse.  For our girls?  Will 'the one' be willing to take on this disease for better or for worse?  For life?  Not everyone is willing or capable of such a commitment.  The future is so uncertain now for our little girls.  Assume they do find Mr. Perfect who is willing to live with T1D for the rest of his life. Then they have the decision, the worry, the uncertainty surrounding having children of their own.  The potential risks during pregnancy. The possibility of their own child/ren developing T1D as well.  Their future is impacted.

What about career options?  Most job opportunities should be open for anyone with T1D.  However, some dreams for certain individuals have been lost.  Military? NOPE, not much of a chance.  Pilot?  Not gonna happen.  Too much of a risk.  Remember those highs and lows that can't be completely controlled?  That's a gamble not worth taking in these professions.  I'm sure there are others that will be 'out of reach' now that our girls have the diagnosis of type 1 diabetes.  It's hard.  It can be sad.  It causes grief.

Innocence and the typical carefree childhood were lost the minute this diagnosis was announced.

Dreams and aspirations for the future were squelched or at the very least altered for some.


Deep, real, losses.

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