Thursday, April 28, 2016

500 Days

500 days.
That's how many days it's been since Anna was diagnosed with Type 1 Diabetes.


I've always reacted slowly to things.  I never got nervous until after a musical performance.  Tests didn't freak me out beforehand but I was so nervous in the aftermath that I couldn't eat.  Being pregnant and becoming a mom wasn't a problem at all until that first baby got here and All The Things swarmed into my head.

Anna's diagnosis was more or less the same way.  I shed a few tears as I arranged for the other kids to be cared for while we were in the hospital.  I held myself in check for her sake while at the hospital and reminded myself that this was a manageable disease and that my child was going home with me to live a full life with very few limits.


What I didn't do was start Googling T1D.  I didn't immediately seek out others who had traveled this path before me.  I really didn't even understand all the sympathy people kept showering us with.  In fact, I clearly remember asking one friend WHY was everybody so sorry?  Anna was alive and well and insulin injections would allow her to live a pretty normal life (normal aside from glucose checks and shots with every meal).

But the time came when I started researching a bit more.  Slowly because I know that, as a mom, I can spiral to the dark places fast when faced with medical facts.  I learned a haunting phrase, The Dead in Bed Syndrome, that says approximately 1 in 20 T1D children will die in their sleep from a sudden drop in sugar.  They may have had a 'perfect' day as far as the readings on their glucose monitor go.  There is no warning.


The time came when I became a part of an online T1D community - mostly moms of young T1D kids.  Not long after I became active, an obituary was posted: a little girl had passed in her sleep.  I was sad for the family's loss and held my little girl closer that day.  Weeks went by and I interacted more with these other moms and learned more about them and their families.  One morning I was on FaceBook and read that a little boy I 'knew' had passed away.  Dead in Bed.  I started checking Anna several times throughout the night.  Fear driven to be aware and in charge.

500 days.

We learn more each week.  Too much activity or too little activity can cause major swings in her numbers.  Sunburns sway her numbers.  Colds mess with her numbers.  Stomach bugs can take her out and land us in the ER in a quick hurry.


Changes within her body that we can't see any evidence of will cause a fluctuation in how much insulin she needs.  Puberty will have an added facet of 'fun' with Anna.

Birthday parties, potluck meals with our church, overnighting with friends or family.  These are things we never gave a second thought to until T1D entered our lives.  Suddenly these are big deals.  The variables are many and she simply can't do any of it without the help of an adult who understands how to calculate all her formulas and carb-ratios.  Diabetes math, while not all that hard, is more than a 7 year old can handle on her own.


500 days.

There are days when I have a new realization or read something or just have a stray thought and I hide in my room to cry for a bit.  It took a long time to admit to myself that we did, in fact, lose something.  It wasn't the kind of loss some people know, but it was still a loss.  The mourning comes in fits and starts and I've learned not to shame myself for being sad.  I don't dwell there in that sadness.  Anna's life is so much bigger than her being a diabetic.  But I no longer feel guilty when those moments come.

She is so much braver than I would have ever known.  For the most part, she cheerfully pricks her finger and tells us her number (6-10 times per day)  For the most part, she doesn't even flinch when she gets her shots (4-6 per day).


Sometimes, though, the mourning comes for her, too.  Sometimes she wakes up hating everything about the pricks and the needles and not being able to have what she wants to eat when she wants it.  Sometimes she has an old fashioned fit and scream-cries her displeasure over things.  Those times are infrequent and we don't stop her.  We hold her when she's ready and pray with her when she's ready.  But we don't stop her.  Mourning has to happen.


500 days.

She has danced, participated in swim team, enjoyed holiday feasts, learned to ride a bike with no training wheels, celebrated birthdays, camped out, spent sunny days on the beach, lost teeth, skinned knees, and everything else that a healthy 7 year old girl should be doing.  Diabetes doesn't mean 'no', it means 'thoughtfully'.




500 days.

And, in His plan, there will hopefully be so many more.