“Where there’s a will there’s a way.”
“You always have a choice.”
Y’all know me. I will be positive and optimistic til the day I die. It’s how I live my life, it’s the lens I look at events through, and it’s the foundation I’ve built our life on after all of our experiences. Optimism rooted in gratitude.
But I would be remiss if I didn’t call out that we do, in tandem, acknowledge the suck, the crappy, and the heart-breakingly hard things that do go along with parenting a child with a disability.
And one of the biggest challenges I think there is for parents of a disabled child, is there are a lot of things that I don’t have any power over–I simply don’t have a choice.
I didn’t choose for Callie to have a disability that will affect every aspect of her life.
I didn’t choose to watch my daughter fight for her life at three days old.
I didn’t choose for her to have to have two open heart surgeries, multiple hand/knee surgeries, or a lower leg amputation.
I didn’t choose to hear her soul shattering scream for me as she came out of anesthesia.
I didn’t choose to take on over a million dollars in medical debt.
I didn’t choose to have people stare at us and point fingers every single time she walks into a room.
I didn’t choose to have PTSD from my birthing experience.
I didn’t choose to battle insurance companies weekly to get the adequate supplies, therapies, and devices she needs to live a happy and fulfilled life.
I didn’t choose for my marriage to be fundamentally impacted by Callie’s health issues.
I didn’t choose to delay plans for the future because we have to worry about saving for Callie’s future.
I didn’t choose to not have anymore babies because I’m so afraid I will “cause” something to happen to my child again.
I didn’t choose for my daughter not to live in world that’s not accessible for her.
I didn’t choose for her to struggle to find pants that fit over her prosthetic leg or shoes that will work with her prosthetic foot.
I didn’t choose to hear her ask “Why me, Mama?” over and over when she gets frustrated.
I didn’t choose to watch her wistfully watch other kids run unencumbered on the playground.
I didn’t choose to have her spend so much of her life in the hospital.
I didn’t choose to live life on high alert for the next medical emergency.
I didn’t choose to turn down job opportunities because I know that I can’t manage multiple doctor’s appointments, physical therapy appointments, and a high stress job.
I think my biggest frustration on some days is that I don’t have a choice at all and…….I never had one. I was thrust into this life, this role, and this responsibility without a moment to process, grieve, or even say goodbye to my “old self.”
So sometimes I can’t choose joy.
I can’t choose happiness.
I can’t choose positivity.
Some days………the only choice I get to make is to not give up and continue to advocate for my child.