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.

2 comments:

Christine McKinney said...

So beautiful. It goes by so quick. Congrats on the golf tournament.

Naturally Sweet Sisters said...

Thank you, Christine. The girls were so happy on the tournament. It really puts T1D in perspective. Anything is possible!!