Thursday, January 26, 2012

12 Years

Twelve years ago today we sat in a hospital room with our 4 year old daughter ready- well, "ready" or not- to start our new life with T1.  I remember the little blonde, blue eyed baby who would giggle every time Dr. T would come near her.  She was so ticklish!  She insisted on a band aide after each fingerpoke and her little fingers held every color of fluorescent by the end of the day.  It feels like yesterday and when I think of it, my heart still clenches the same way and I wish I could rewind the clock to take back all the pain this nasty disease would or could cause her. Some days are so much harder than others - there is always kind of a roller coaster - weeks of good and weeks of  anger and weeks of coasting.  In retrospect, I can honestly say I believe, in general,  she has laughed more than she has cried and that is amazing to me!   I am very proud of her and her determination not to let this disease control her life.  In recent weeks, I have noticed even more of a change in her, a maturity.  She recently  met with our nutritionist and came out of the meeting smiling!  I can't remember the last time we left the clinic with a smile.  She was excited about making healthy eating choices and had recently begun to work out with a friend on a regular basis.  The other night, she asked me if I wanted to listen to her speech for English.  It was about Diabetes and focused largely on the lack of education and money available for treatment world wide-  particularly in developing countries. Here is the link to the video she included:   It is very enlightening and heartbreaking.  It makes us count our blessings.  Twelve years later, our baby is still active, still healthy, still giggling when Dr. T needs to examine her.  Twelve years later, she meets the T1 challenge every day and she is teaching others.  With knowledge is power and progress- I wonder where we will be 12 years from now?

Tuesday, January 3, 2012

Finding a Balance

Yesterday, I got a text from a friend with a T1 daughter asking if I ever felt sorry for myself.  I had to laugh because, of course, the answer is yes!  Some days, there is little else to think about but blood sugar, finger pokes, A1c's, and the nagging doubts and worries about the future. Especially if you have more than one because it is rare that they are all having a good day at the same time!  For example, just the other day I got a call from the school for an over 600 blood sugar.  I did a set change and within an hour he was 56!  The whole rest of the day went like a teeter totter, up and down for him.  Finally got him settled into bed with a respectable 150 and one of the girls wakes up a 37 for a midnight snack.  Even with the technology of the pump and the fine tuning available, there is no guarantee of a "perfect" day.  Which means as the caregiver, we are always asking the questions:  "Did I do everything I could?  What can I do differently?"  It can consume your life!

I remember when Tylie was first diagnosed- nearly 12 years ago!- and I couldn't imagine myself with any kind of life except making sure she was safe.  For the first week, I literally hovered over her!  If I was away from her, I couldn't quit crying.  I needed to have something to focus on, so I was her shadow.  I am not sure when it happened or even how, but at some point I realized that this would not be able to continue.  For one thing, I had a 2 year old and a baby on the way!  For another, was this really helping anyone?  We were very lucky that daycare providers and family members were willing to step up and learn right along with us.  If we hadn't had that support system, I can't imagine where we would be today. It is so easy to be literally consumed with the enigma of diabetes.   The first time I left her with a sitter, I think we were gone barely 2 hours.  We timed it around insulin shots and carefully planned a snack for all contingencies of highs or lows.  Again, I am not sure when or how it happened, but at some point we realized that it was important to have a life away from diabetes.  Just as we followed the motto, "They are kids first." we needed to consider our own lives.  If we were unhappy and stressed out, than we weren't helping anyone!  We hired a babysitter for one night a week.  Troy coached hockey and I played volleyball.  After, we either met up together or went out with friends for a primarily adult night.  Sometimes we snuck in real "dates" but it was good to have a consistent time to get away for a few hours and recharge.  Now that the kids are older, we no longer need a babysitter but we do still try to make a point of one night a week as a couple.  Even if it's just late night appetizers.  While I see the importance of these escapes, it always makes me sad knowing this is an escape the kids never fully get.

The two year anniversary of TJ's diagnosis is on Sunday.  It seems like yesterday but so long ago at the same time.  I work with children who have a mental illness.  Typically, this is a familial trait.  I watch their struggle daily and always have a debate with myself as to whether if I had to choose-  would I choose mental health or physical health?  When I put these children side by side with my own- I have to pick mental health.  Yes, my kids struggle everyday.  Their life is not perfect and some days it is painful to watch their struggle.   But, they have the love and support of people, they are happy and they are able to 'be kids", which was our ultimate goal for them.  Our diabetes educator has told me a number of times when I am frustrated with the choices they are making that "they will be fine.  They are teenagers but you can tell they get it."  I hang onto those words like a lifeline and I believe her.  You can see it in the way they care for their brother.  So, as TJ and Tylie's T1 anniversary dates approach, I am thankful and hopeful.  Thankful that we were blessed with such an amazing support system.  Thankful that we have been able to recognize that it is okay to be angry, sad, disgusted and annoyed with this stupid disease and the hand we were dealt but had the strength to look beyond the anger.  Thankful that we, as adults, can also recognize there is a time to cry and a time to fight and hopeful that my children will be able to learn this from us.  Thankful for the advances in science and medicine that makes that fight easier and hopeful that in the very near future it cracks the T1 code and literally saves my children's lives.  Mostly, I am thankful for each and every day that I have with them and hopeful they recognize the power that they have over their own lives and can create a balance that works for them.

I was thinking about it last night while at the same time thinking about a young man and his family in Minnesota.  This 16 year old boy was playing in a hockey game and went head first into the boards.  The result was a severe spinal cord injury and a devastating prognosis.  My heart breaks for this family.  Faced with the idea their son may never walk again, they pray for a miracle.  Just as we do everyday.   I can identify with them on so many levels.  As the mom of hockey players, their nightmare is one I never hope to live.  As the mom of children whose lives were drastically and unexpectedly changed, I can actually feel their pain.  On his Caring Bridge site, they talked about transitioning to a "new life, a life we did not plan, but must embrace."   They tremendous support coming to this family from all over and the positive tone they have set when speaking about their son gives me so much hope for them.  It reminds me of a quote by Plato, "Be kind, everyone you meet is fighting a hard battle."  It would be so easy to focus only on yours- but at what cost?