Tuesday, May 12, 2015

Why So Touchy?

Q:  Why are you so touchy?

A:  In short?  Basically because I'm grieving.  I'm grieving a loss, a deep felt loss for all that I've discussed up till now.  I'm grieving the 'what if's' this disease offers.  I'm grieving the loss of innocence and freedom diabetes stole from our girls, our family.  I'm grieving the pain I have to inflict upon my girls DAILY just to keep them healthy, alive.  I'm grieving the fact others don't understand the gravity, the seriousness of this disease.

In addition, I'm simply overwhelmed.  Grief is tough to bear.  It seems even harder when that grief is confounded by needing to step up to the plate and fight a disease that wants to destroy our little girls. If I don't fight, I lose them.  Even if I do fight, I could STILL lose them.  But.... I know I have to persevere.

I'm also tired.  Exhausted some days.  Not only emotionally and mentally but physically.  Something that's lost that seems a bit trite on the outside is sleep.  When you have a child or two or more with type 1 diabetes, sleep is no longer just 'restorative rest'. It's a cause for alarm, for fear, for uncertainty.  You see, while sleeping, the child won't FEEL the low coming on.  We won't SEE the impacts of such a low.  Death is VERY possible.  Due to these 'possibilities' I choose to check their blood sugar in the middle of the night.  Sometimes more than once.  You see, double digit numbers bring fear; triple digits bring stress.  As another mom of a T1D put it, "Numbers aren't just for sesame street to us; for families living with type 1 diabetes, numbers rule. the. day."  So, when I snap?  Know I may just be sleep deprived.

I also struggle with being patient.  Patient with well meaning individuals who make inconsiderate comments due to lack of knowledge, information.  I don't want to lose friendships, to hurt relationships, but.... it's hard.  These are my babies.  Mama bear will roar.

You see, right now?  My very sanity is on the brink. There is so much to consider each day, each meal, each moment.

My nerves are frayed at times.

Sometimes I just want to cry.  Oftentimes I do just cry.  Often I feel I can't control when I'll cry, snap, recoil.  It. Just. Happens.

My brain is on overload.  So much to know.  So much for which to keep track.  Two logs of blood sugar.  Carb counts.  Insulin ratios.  The right insulin pens.  Then there's the general information about diabetes. What it is. What is isn't.  What CAN happen as a result of this diagnosis.  Finding support - from others walking this path. Others who understand the raw, unfettered emotions.  It's a lot.

So, I may be a bit touchy, grumpy, not quite myself.

Q:  At least it's not cancer, right?

A:  Of course I'm happy that our girls do NOT have cancer.  I cannot even imagine how difficult it must be to go through such a diagnosis with a child.  However, you have to understand that such a statement does not - in anyway - make me feel better.  Why?  This disease, diabetes?  It too can have severe consequences.

I understand and empathize with the fact that a child given the diagnosis of cancer has an increased chance of death.  I acknowledge that the treatment for such a diagnosis is traumatic at best.  Some have terminal, inoperable cancer and death is inevitable.  Again, I cannot fathom the heartache those families feel.  However, most don't understand, don't know that death is a reality we face daily.

Many a child has had life altering consequences from this disease.  Extreme high blood sugars in the short term can leave a child with temporary or permanent brain damage.  Swing to the other extreme of a severe low and death is knocking on the door.  I've already heard of far too many children taken too early to this monster.

Add to that the on-going, life sentence of type 1 diabetes.  Unless a cure is discovered in my girls' lifetime they will NEVER get a break from the day to day difficulties of this disease.  Never a 'time out' from treatment.  Such a lapse would lead to their demise.  It's. Not. An. Option.

So, although the simple answer to this question is 'yeah, I am glad it's not cancer', the more complex answer is much deeper.  It's like comparing apples and oranges.  They are two VERY different beasts.

Just as I would not want the diagnosis of cancer, I also did NOT want the diagnosis we did get of diabetes.

Right now there's no cure.

There's no permanent fix.

It's a day in, day out struggle.

Some days are easier than others.  Some are down right hard, unbearable.  We're fortunate that we haven't had those unbearable days yet.  But... we know the possibility exists.

The grief, the loss..... is real.

I hope I've helped you understand, to some minor degree, just how devastating this disease is to any family.  To our family.

I hope you can now resonate with the words "loss" and "grief" as they relate to this unwelcome adventure in which we find ourselves.

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