I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Wednesday, January 29, 2014

Trying to Make a Difference

Ever since Jess was diagnosed I have been looking for ways to help the T1 community.  I've done the usual fundraising with JDRF, became a JDRF mentor, had the huge honor of becoming faculty for Children With Diabetes (best organization EVER!)  But, I kept looking for ways to use my medical background to make a difference.  A little tricky because I am not an endocrinologist.  I'm a family doctor.  My T1 hubby (also a family physician) and I finally have an idea.  And, we are going for it and turning it into research.  Part of that idea involves looking at many comments from Type 1 diabetes blog posts.

I was unprepared for the emotional onslaught of reading so many comments at once.  I routinely read blog posts and skim the comments.  But, I have never spent hours looking at all of them before.

It is heart wrenching.

There is no chronic, lifelong disease that comes to my mind that is as emotionally and physically challenging as Type 1 diabetes.  These comments detail that with their raw honesty.

My heart aches for my husband, my daughter, and the entire Type 1 community.

And, people don't "get it."  These comments demonstrate the isolation living with this disease can bring.

It is exhausting.  It is constantly there.  The multiple blood sugar checks, the math every time you eat, the highs, the lows, site changes, dexcom changes, injections...

So many emotions....burnout, guilt...the highs...the lows....

I am but a caregiver of a beautiful girl who is becoming a young woman, who happens to have type 1.  I hate that she has this.  I hate that anyone has it.

I see in her how isolating it is.  I hear the intrusive comments fellow classmates make.  I see how she hates being different.  She is so tired of the highs and lows.  And, it has only been a bit over 4 years.

She told me recently that she knows that I love to go on vacation, but that for her the week at Children With Diabetes is her vacation.  She told me it is the only time she can truly relax.  She doesn't have to hide in the classroom checking her blood sugar, hoping no one will see.  She doesn't hide her sites and pump, but wears them proudly like badges of honor.  She is surrounded by literally thousands of people who she knows can keep her safe.  On the one hand, I am so thankful she has this respite, and on the other hand I hope desperately that what she tells me is not true.  I can't bear the thought that she truly relaxes only one week a year.

All I can do is to keep trying.  Keep fundraising.  Keep researching.  Keep helping.  And, keep hoping.   Hoping that someday the elusive cure is found.