Our family's "elephant in the room" is a pink one. Our 5 year old daughter was diagnosed with Type 1 Diabetes in January 2011 at the age of 2 1/2 years old, and it has changed our lives forever.
For more than half her life, my daughter is one of those superheroes, though she doesn't even know it.
Sunshine turned five last summer, and I am amazed at her growing confidence, her growing limbs, and her growing mind. Like any mama anywhere, these changes are filled with bittersweet nostalgia...my sweet girl is no longer a baby, she is changing and evolving and her little self is settling into her body with a determined presence.
Those early days of diapers and teething and wide open eyes are being traded in for dance classes and hair accessories and thoughtful reflections. And as inevitable as it is, Sunshine's awareness of her condition is beginning to settle into her little self, as well.
Several times a week, Sunshine may ask why she has diabetes, or comment that it isn't fair. She will complain that it hurts so much, please could I take it away?! She panics at set changes for her pump, which is every second or third day. It usually takes the two of us, my husband and I, to hold her down and change the needle which we jab into her like a thumbtack.
She's right, it isn't fair.
We are navigating new territory here, as all parents do. There are concessions to make, behaviousr to modify, boundaries to set. However, this territory with Sunshine is filled with nightmares about her trusted parents forcing her into painful situations. This territory is filled with wondering why she can't eat when she feels hungry, but has to wait 15 minutes, or even an hour, until the insulin brings her blood sugar down. This territory is filled with recognizing there is a difference between herself and other kids.
Most days, this territory is navigable...but there are still days when I feel we are shipwrecked and sinking.
Part of our jobs as parents is to provide opportunities for our children to grow and explore. Since last spring, Sunshine has taken part in more organized activites including dance classes and a soccer league. She loves bike riding, tobogganing, snowshoeing and skiing. I cannot express the fullness of my heart as I watched my sweet girl leaping and twirling, running and playing just like the other kids.
On the outside, she looks just like any other child.
However, they may not see us fuel her up with carbs before exercise. They may not see us stop her from her activity so we can poke her finger for blood every half hour (or more) to ensure she is in blood sugar range. They may not see us slip her an alternate snack to what the team gets to ensure a carb count on the food she will eat. They may not see us monitor her that night after exercise, every hour on the hour, all night long to make sure she will wake up in the morning.
And it does happen ~ the not waking up part. This past summer, my dear friend almost lost her 16 year old child due to a severe low blood sugar in the night. They have no idea what caused her blood sugar to plummet. It is like Russian Roulette some nights.
So we are vigilant. We wake up four to five times a night to check on Sunshine. We monitor her food intake with great attention. We curse, we cry, we wail that it is indeed all so unfair.
And then, we pick ourselves up off the floor, take a deep breath, and poke her finger for another blood sugar check. And we will do this every day, up to twenty times a day for the rest of her life. We will pray for that cure but live like there won't be one.
Superheroes do indeed come in small packages. I know.
My daughter believes that her diabetes will be something she once had. And that innocent optimism is in itself heroic to me. Most assuredly, she is a true hero.
My little girl.