Thursday, February 19, 2015

Still Learning

It has been a while since I have posted.  That doesn't mean I haven't been writing, just that I haven't been able to write a post worthy of publishing!  Sometimes, a girl just likes to vent! However, in recent weeks, I have been following the story of a little girl named Kycie.  This story has touched my heart in so many ways.

I once had a little sparkly blue-eyed girl with a puff of pale blonde hair much like Kycie.  That baby girl is now 19 and reached her 16 year "diaversary" just 5 days before Kycie's diagnosis.  She still has sparkly blue eyes and a giggle so infectious you can't help but laugh with her.  I thank God everyday that we had a doctor who thought to look beyond the typical ailments of a 4 year old and do an extra little blood test, "just to be sure."  When the tests came back, he gave us the news with quiet reassurance. He had already set up our appointments for our next step (thank goodness as I was numb) and we actually had nearly a full day to let the news sink in before we had to admit her to the hospital.  In essence, we got to prepare her for her journey- a luxury most T1D kids and families do not get.  Since then, I have had numerous people--friends and acquaintances--ask how we knew.  I have to confess, I didn't.  I was convinced Tylie had a bladder infection. I didn't see Taya's symptoms, Troy checked her because he had a weird feeling.  I definitely wouldn't have seen TJ's symptoms if his moodiness hadn't reminded me of  a high blood sugar tantrum.  There are days I still beat myself up over that- should we have seen the signs sooner?  Diabetes is sneaky.  I always respond to these people, if you wonder, have your doctor run the blood work "just to be sure."

As I read the daily posts from Kycie's family, I have a renewed sense of wonder.  The strength and faith this family has demonstrated is nothing short of amazing.  I distinctly remember the overwhelming helplessness when learning to care for all three of my T1's.  While I had more knowledge with each diagnosis, this did not make it less overwhelming.  However, none of our experiences were nearly as life changing as Kycie's diagnosis.  Read their Facebook posts,  Ironically, I typically read these posts in the middle of the night after I hear one girl or the other girl shuffling around to treat a low.  Even after I know they are fine again, I can't sleep.  Their posts are awe inspiring and humbling and even in my anger and sadness I feel hope. 

Today, I was at the doctor with Tylie.  While sitting there, I still see her as that little girl covered in band-aids, frustrated that her IV pole prevented her from entering the tree house on the pediatric floor.  We have reached a new phase in care that I am not that comfortable with.  I am no longer the primary pancreas- she has trained well, and the job is now hers.   However,  I pushed this appointment because she had chosen to go a different direction with her regime and I had concerns- old habits die hard.  I went into the meeting feeling nervous and afraid but left it feeling hopeful. While I'm not sure it would be the choice I made, she is forging her own way.  She is able to do so, because more opportunities exist to help her manage and control her blood sugars.  We will see at her next A1c if her gamble pays off, but I feel better about her plan and am again amazed by the resiliency and courage she displays.  As a control freak, it is hard to let go, but it seems it's her turn to teach me!  It also doesn't hurt that I have a friend at the doctor's office to give me the inside scoop! 

In 4 short weeks I will be in DC with a sea of other like-minded people for JDRF Government Days. We will be advocating for continued research and the ultimate goal of a cure.  This is my first time being invited to this event and I enter it now with even more resolve.  Sometimes, living with this disease as long as we have, I get lulled into complacency; trying to survive day to day.  New challenges my kids face and stories like Kycie's, wake me up again.  Our babies need our voices, even when we are no longer their primary pancreases.  
Know the Signs!

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