Your injury may be “invisible” but you certainly are not. Our struggle and constant uphill battle may be invisible to most, but it’s there. Believe me, it’s there and it’s so very real.
I remember the first time I heard the phrase “invisible illness.” It was in an article about Lupus, an invisible illness I struggle with. It stuck with me because of how bold, but accurate a description it was.
Flash forward to the birth of my daughter. A birth that included three brain bleeds and a stay in the NICU. A birth that gave us a new invisible to deal with. Out of all the things her doctors said in those early fear-filled days, the one that stuck with me the most was the way they described what our future with this type of injury or illness would look like.
It would forever be shades of gray. We would always be in situations that weren’t quite black and white. Any new challenge we face would be a toss-up between being luck of the draw or a direct result of this invisible injury forever lurking behind. Just because the bleeding stopped and the physical injury resolved, the invisible one left behind would remain with us.
And for anyone outside of our little world, it is invisible. Anyone who spends time with our daughter is left stunned when we explain what she went through. What we still go through. I cringe every time I hear someone say, “But she seems so normal.” The phrase gets under my skin to the very core. I know most people mean well, they do. But to the parent of a child with invisible illnesses and injuries and disabilities, it is a tough phrase to hear.
Our invisible injury comes with very real doctors. Lots of them. It comes with therapists and specialists and endless evaluations to ensure we get the best services possible to help our daughter succeed. It means our bright and happy child is constantly under a microscope. By her parents, her teachers, her doctors. Always waiting for the other shoe to drop. Always waiting to see what’s around the next corner.
The uncertainty is the hardest. Never knowing what, if anything, will come next. Whether the next battle could have been avoided if her story started differently. If there is anything we could, or should, be doing differently. The questions are endless and relentless and often keep me up more at night than those early newborn days did.
There is always something to be done. Paperwork to fill out. Therapists to meet with. Doctors to follow up with. The word “normal” is always, always echoing in my head. I’ve tried to train myself to use the doctor-encouraged term “neurotypical” but most days we just end up at “normal.” I spend our days analyzing her behavior to make sure it fits that normal mold.
Most days it does. She’s running and playing and learning with all her little friends. She’s throwing tantrums and pushing boundaries. She’s asking for endless snacks and eating none of them. She’s doing all the things a normal, a neurotypical, 4-year-old should be doing. That injury goes right back to being invisible.
Until it’s not. Until her tantrums start to edge closer away from the normal zone. Or her running starts to turn into tripping as her hips start to go astray again. Or she starts hyper-fixating on lining up her crayons. Random, small moments that most parents overlook must be looked at closer by us. And then looked at again and again until a decision is made if it’s worth bringing up with a doctor or therapist. So on and so forth.
As her parents, we know this isn’t invisible. We know the struggle we go through daily and the strength we’ve gained from it. We also know our daughter deserves all the credit in the world for going through it too. Some days, I wish people could see her injury and illness for what it is.
To see that although she’s talking to you a mile a minute, it took months of intense speech therapy to get us there. To see that although she’s chasing her friends around the yard, she’s only able to do so because every Monday afternoon her physical therapist comes to our home to help her remain in control of her little body.
To see all the things, she has taken on and conquered like the little champion she is. Because while her injury may be invisible, she most definitely is not.
She sure lets you know it too.