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Sunday, June 9, 2013

There’s been something I’ve wanted to write about for a while now…as the journey goes on, the learning never stops, the morphing into whatever I need to be at the time, that time just keeps ticking away…without a cure.

My daughter has had Type 1 Diabetes now for 13 years.  The “they should have it figured out in ten years” milestone has come and gone…then the “who told you that?” phase was short, moving into, finally, acceptance.   I sit and let the word resonate on my palate like a fine wine.  Then I cry.  For a moment, it seems that hope is lost.  Hope, is gone. 

No cure, no end in sight, night after night of praying and tending to the ghost of what might happen if I let my guard down.  More number crunching, more juice boxes bought for the “lifesaving shelf” (I should have bought stock in Juicy Juice!) , more number crunching, an eye on what the next best thing will be to make her life just that little bit more “normal”.  My emphasis switches from relying on hope to relying on the practical items that will get her through the day, make her life better, the practical of Living with Diabetes.  I hate it.  Is this what it is going to be?  Hearing day after day about another child passing away, another struggling with diagnosis and asking, “why?” … The day in and day out of working to make a difference…until, when, exactly?  Bitterness, exhaustion…defeat. 

But then…wait…what is that???  If I listen closely enough, I can hear the pitter patter of little feet in the back of my mind…as the steps grow louder and bolder, I recognize this old friend that has helped me time and time again…HOPE.  Oh…I have missed you…HOPE…HOPE!  Hope for a Cure, Hope for a better life, HOPE!

If there is one thing I’ve learned through this journey, it is that without my side-kick, Hope, I am truly lost.  And I will HOPE.


A short story to share the Footsteps of Hope:  We were fortunate enough to be able to include a glucose monitor in our toolbox of “the next best thing to make life better, a little more “normal”…if sticking another device into your child is acceptable to you as “normal” in this life we call diabetes!

We received our Dexcom on a Wednesday and decided to wait until Saturday to start so that we could both watch the video and learn together, and, not rush the process.  We were both a little concerned about the “plunger” – manual insertion – as the Minimed had a spring loaded device and that had hurt terribly.  Caitie decided to ice the spot while we watched the video of how to insert the sensor.  (2 minutes,tops!)  I helped with the first one and, being the first time, it was awkward and we didn’t hear the two clicks right away…but got it done.  Caitie said it did not hurt at all!

Caitie went to a friend’s house to hang out that evening while we were out with friends.  We picked her up and got home around midnight.  We looked at the CGM and it said 130 with an arrow down.  We tested and the meter said 141.  We discussed a snack, or, were we at the “bottom of the arrow” since her BG was 141.  Caitie said she didn’t feel like she was dropping.  I stayed up another ½ hour to check her again, to see where she was.  At that time the CGM said 140-something (I can’t remember right now!) and so I went to bed and she was asleep.

At 4am I heard an alarm and went in to check on her.  I don’t think I heard the alarm the first time, and, Caitie was sleeping right through it all.  I cleared the alarm and got her test kit.  The CGM said 48!
I tested and she was 52.  I grabbed two juice boxes and got her to drink them (still sleeping).  I waited 15 minutes and tested her again…51… got another juice box and had her drink that one … she finally started to rouse and was drowsy.  She gave me that teenage look like, “Why are you sticking that straw in my face?!”  Another 15 minutes or so she tested at 78.  I waited a little while longer and she finally was in a safe range.  I think that the CGM saved her life that night.  The very first night of wearing it.  If it wasn’t that, I certainly believe it saved her from having a seizure.  I got goosebumps.  As a parent, I was breathless.  This CGM is a step in the Hope that I have for a Cure…it is a step in the right direction…that there are people out there working to save my daughter.

I have been asked, recently, what I wish for my daughter…without hesitation but with tears immediate to my eyes, I whisper, “A Cure”.  I clear my throat, allowing my voice to strengthen, and I again say, to anyone who asks that question, “A Cure.”  Hope brings me closer to that Cure, Hope lifts me out of bed in the morning, through the challenges of each and every day, and Hope is there when I drift off to sleep.  Hope is what I share with my daughter.  How different life would be for all of us if … … …


And, so, I say, Hi, Hope.  Thank you for being beside me until that day comes.  Please don’t ever leave again.

2 comments:

  1. HOPE FOR A CURE is what I wish for every night upon the first star that i see......................I enjoy your inner thoughts and writings.............. please know that you are most definitely not alone.

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    1. Thak you so much for your comment~I hope with my writing to give voice all of us living the life... Thank you!

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