Thursday, July 20, 2017

Not Letting T1D Mess Up HER Goals

Our oldest daughter is now driving.  

I'll continue to type while you adjust and let the information sink in.  If you are like me, that may take a moment....driving IS one of the scariest parenting moments. 

Several years ago, another blogger parent shared her own personal driving stories as one by one, her teens living with T1D made the plunge into the world of driving.  I was actually horrified, while also feeling awe and a slight bit of  jealousy - because truthfully - having another driver was definitely needed within our household.  For the record, her young drivers did just fine.  The worst seemed to be the need to stretch out curfew for 'just a few minutes more'.  That seemed very typical of most teenagers and so reading about their experience helped me to relax. Well, mostly.  

And to give you that same gift of relaxation, I want to share this story with you. 

Over the past 1.5 years, thanks to a graduated license, our daughter has learned to navigate her vehicle and her T1D care with ease.  The reality is that as parents, we often focus on the imagined 'worst case scenarios' and fail to see how proficient our young people have become.  It becomes even trickier when you couple in the 'what ifs' of T1D.  Believe me when I tell you, those first few months, we worked hard at ensuring that our daughter had a protocol for caring for T1D.  There is fast-acting glucose in her center console, there is an ID on her seatbelt and her wrist and we heavily discussed the need for testing - not guessing at BG numbers - before she drives.  

But this strategy was not our sole focus.  We also had to teach her how to handle freeways, roundabouts and parallel parking.  My husband, whose own father was a school teacher and driving instructor, was fixated on giving his own child the best defensive driving education that any child could need.  I tease but he had her working my own minivan like it was a tiny sports car.  I can't even do that. 

Yesterday, our daughter drove to one of her final orthodontist appointments.  The visit required a drive of about 20 minutes each way.  In leaving our house, she felt slightly rushed as she was running behind to begin with.  Hopping into the car, she forgot to check her CGM or check her blood glucose through a fingerstick.  I sat in the passenger side, unaware as well.  My mind was more on the impending visit than what she had forgotten.  

Seconds into our drive, she suddenly pulled into a parking lot.  Surprised, I questioned her.  

"Mom, I almost forgot to check my BG.  I want to make sure that I am safe."

With fingers in action at lightening speed, within moments, there was the all-too familiar click, wirrrrrrrrrrrr and Beep!

"205 mg/dl", she happily revealed.  

Back on the road we went and as she drove further she shared, "I don't want to have problems with driving and T1D.  This is too important right now.  I have things that I want to do and I don't want to mess any of it up."  

I bit my lip to keep from further parenting her and just nodded in agreement.  My advice or scolding wasn't needed and if I had shared any of my favorite lectures or opinions, it might have changed the course of what she is planning to do.  

Sometimes, our teens are their own best guide.  We just have to give them the freedom to figure it out. 



Friday, July 7, 2017

Witness

Sometimes in the middle of a joyful moment, there is a lull.  The music dims for a split second and I find myself taking in the surroundings like an impartial third party witness.  The girls are happy.  My husband, despite his ever-graying hair, looks relaxed and young again.  And for this moment, no one is thinking about health, medicine or outcomes.  We are just a regular family, enjoying a regular fireworks display on a regular summer evening.

It is lovely.

That is the kind of moment that I am cherishing this summer. Our youngest is still dealing with chronic urticaria - though the hives are NOTHING like they were in the early spring.  Thanks to the multiple antihistamine regimen, the hives look less intense and now appear as a splotchy, blotchy map of redness. When a flare occurs, the itching drives her mad and she has explained that it feels like her skin is both on fire and full of ants.  The feeling is so intense, that it immediately forces a dose of her (new favorite) prescribed hydroxyzine pill.  Minutes later, the effect takes hold and the itching lessens as her skin fades back to her normal pale glow.  I have to tell you though, in the brief time span of watching her struggle, my stress flares to unbelievable heights.  I feel the same itchiness, the same frustration, the same (yes, sometimes) anger at having to deal with this. It is hard on both of us.  I want nothing more than for her to feel good this summer and yet, this is the best we have at the moment, mostly good.

The world of T1D is similar, so this feeling of helplessness in watching a child struggle is not new to any of us.  My role is as a witness to the world of highs and lows.  I see them, I participate in them and worse, I remember each and every one of them. This, my friends, compares little to living through them.  My girls are strong.  So darn strong because somehow, they have made this amazing life happen, all while managing one of the most burdensome autoimmune diseases with little complaint.

I think about that strength; the resiliency that they both have cultivated.  It helps to reframe my thoughts when it feels so out of my control.  I know that they will both thrive.  They just will.  Actually, I should say that they have willed it to be so.

Last week, they won their first golf tournament of the summer junior tour season.  Our oldest placed first and our youngest came in second.  The tournament ran for six hours - incredibly hot, slow and frustratingly l-o-n-g golf.  By the second hole, the girls were backed up to two other three-somes awaiting their own turns.  There was little shade on the course and so, the sun hammered down and within a few minutes, I could see our youngest scratching at her cheeks, then her neck and finally her arms.  Because parents are allowed zero communication with players, we had created a plan ahead of time to keep both Benedryl and her hydroxyzine in her golf bag. Without hesitation, our youngest quickly proceeded to give herself a dosage. She knew what she needed to do and made it happen.

That hole wasn't particularly great as she struggled to regain control of her body, but after taking care of her urticaria, she once again hit her stride... navigating her game AND maintaining her T1D.  In fact, both girls were so good at keeping their blood sugars in check, that not once did I ever feel the need to ask a Ranger or a Judge to step in with carbs from mom.

And so this leads me to the moment that I am in right now.  I'm savouring the life we have.  The understanding that this barrage of autoimmune is not going to hold them back.  They want to be a part of life - not just a witness to it.  And that is the best kind of outcome we could ask for.

Thursday, June 15, 2017

Sometimes The Best Outcome is Not a Cure

Sometimes the best possible news arises in a most non-dramatic fashion.  While I would love to pick up the phone and hear someone shout, "There is a CURE! Go get it!" (and for any particular disease that effects any one of us in this world because I really am not choosy - we NEED more cures!!), today, the message on the other end of the line was just as sweet.

"It is NOT systemic!"

If someone ten years ago would have told me that news like that would bring pure joy to our household, I probably would have nonchalantly shrugged it off.  Ten years ago, after the diagnosis of T1D, I was so hyper focused on finding a cure, that I am sure that settling for anything less than, would have been a huge disappointment.

After this week, I am certain that there are shades of wonderful.  Yesterday's hazy gray has given way to a lovely calm, cool and happy bliss.  Our youngest daughter's health is not being threatened by an over abundance of autoimmune diseases.  Yes, she will have her three and yes, there are no guarantees that more will not appear in the future.  Yes, her third is incurable, although remission is possible.  However, today, that is not her worry.  Today, she will continue her journey into a happy childhood; albeit with T1D, Hashimoto's and Chronic Urticaria.

And that is OK.

Sometimes the best outcome is not a cure.

Today, it is an outcome that is healthier than possible others.





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