Thursday, November 29, 2012

Really Aware

November is Diabetes Awareness Month.  I started out the month with the best of intentions.  I wanted to use Facebook as a way to educate people about what it was like to live with Type 1 Diabetes everyday.  That there is no vacation, that it's hard work, that it's exhausting, that it's frustrating, lonely, sad, painful...  But, somewhere in the month, I got too busy with "living" I didn't get time for the posts.  When I stop to think about it,  I still think it is important for people to realize the day to day challenge of living with such an disease.  However, in living our lives, I became more aware of not just the hardships of this crazy disease but the unexpected and random blessings.

We have met some amazing people that we never would have had the chance to know if it weren't for diabetes.  Last night, I got a call from a mom whose 9 year old daughter was diagnosed with T1 and Celiac this summer.  I have never met her before and, in fact, this was the first time we had talked. Within minutes we were laughing like old friends.  Why? We have something in common that no one can really understand unless you live with it too.  Who else would get the humor in your kid yelling, "Hey mom!  I'm high!" and having the strangers around you look at you like they are considering calling social services?  And then we sighed in understanding when we discussed the expense of gluten free bread and the challenges of trying to make it yourself.   Then there is the group of families that I have met a few times at various events for diabetes but have not ever connected with on a regular basis.  I might never actually meet some of them in person but when I read a post and hear about their challenges and their joys I feel like I am right there with them crying or celebrating.  I know that if I need something- help with a kid, a partner in misery, a voice of reason- they would be there.    That gift of connections goes for my children, too.  Through Camp Sioux they have made lifelong friends, built their self-confidence and know that they don't struggle alone. Their health care providers never fail to hug and encourage them.  The nurse at school is simply the best.  Even the managers of restaurants who care enough to come out and meet the kid they are making the special meal for and to make sure his food gets to his table safely.  We have also re-established connections.  It makes me sad to think that I might have lost touch with a good friend forever if it hadn't been for her daughter's T1 diagnosis.  While I would never wish T1 on anyone, I am thankful to have her back in our lives.

Two nights ago, in the middle of a set change, I caught the whiff of the insulin as it dripped from the plunger.  My first thought was, "I hate that smell."  My second thought was, "What if this wasn't an option?" So, yes, I hate the set changes, the pharmacy visits, the constant doctor appointments, phone calls, pump uploads, blood draws and all the rest that comes with the medication but I certainly can't hate the thing that gives my kids the options that they have!  This clear little liquid gives them a chance to play hockey and baseball, run, dance, be active in school, participate in DECA,  have a social life and just "be".  That little box they wear is not a beeper or a cell phone but is much more valuable- it's their pancreas.  As TJ pointed out once, "Diabetes isn't great, but I do get to wear this awesome machine!"   These two things put together are not their cure- oh, how I wish they were- but they give them the choice that not everyone has and for that I am thankful.

Over a year ago, the mom of a player Troy had coached called me out of the blue. (Again with the past connections.) Her 3 year old granddaughter had been diagnosed with T1 and she wanted to be actively able to help when she went out to California to visit.   She came over and met the girls and TJ and they talked to her about how they live with diabetes.  They were honest with her about it being hard and that sometimes they hated it.  But, when she asked if it limited what they did and their choices, their answer was, "mostly no."  The girls gave her some of their children's books about diabetes,(TJ didn't want them- they had girl main characters,eww!) a little stuffed bear, and a backpack they had gotten from Camp Sioux that was pink for her to take to California and share with her granddaughter.  She called me a few more times with questions throughout the year.  This spring her granddaughter was also diagnosed with Celiac so we talked about that and how we meal plan and the difference in carb counting and gluten free food that is kid friendly.  I have never felt that I went out of my way or that she inconvenienced me by asking for help.   So, I was quite surprised a few weeks ago when she showed up at my house with a story.  She said she felt grateful that she and her husband are able to help her son pay for their granddaughter's medical care.  She told me about how when she was young she was very poor and it always had an impact on her and that she felt now that when she could give back it was important to do that.  She thanked me and we chatted a bit longer.  As she left, she handed me an envelope.  I assumed it was a gift card to Starbucks,  imagine my surprise when I opened it and found cash!  And, not just a few bucks!  I was shocked!  Nothing I had done warranted that kind of reward.  I felt that I should give it back but when I told Troy the story he felt that she would be insulted, she wanted to give the gift.  The incredible thing was the timing.  That very week we had had to make some unexpected repairs to a car we had not planned for in our budget.  Her gift got us by in a tight time and hopefully taught my kids a lesson in giving back.

As Diabetes Awareness Month comes to an end and the holiday season rolls on, I am going to make a more conscious effort to be more aware of the positive things.  I would like to ask the kids more questions about their day that doesn't involve diabetes management.  I am going to try to not just focus on those missed finger pokes or boluses but instead cheer on the two extra she managed the previous day.  I am not going to focus on the sleepless nights or the roller coaster blood sugar readings but be happy that today no sites fell out at inopportune times.   I will smile and nod at the annoying parent at hockey practice who can't quit talking about how busy she is while in my head silently praying a low blood sugar doesn't ruin my kid's time on the ice.  Sadly, Diabetes isn't going to go away tomorrow.  I will continue to do what I can to try and give people a realistic picture of a family living with chronic illness.  We laugh, we cry, we yell, we scream- and that was just today! It's easy to be aware of the hard stuff- it's always there, right in front of us or in the kids' case, attached at the hip, literally.  But, along this unpredictable road, our lives have been touched by some amazing people who remind me to also tune in and be thankful for the hidden blessings.

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