I hear a lot how “strong” I must be to be raising a child with Down syndrome. I’m not really sure what that means. There seem to be a lot of implications in that little statement.
I’ve never been one to agree with that. I mean, I didn’t get a superhero cape along with Rowenna’s karyotype, and I definitely still have days when I tear up. And I certainly don’t feel strong.
Yesterday, though, something struck me. I’m not strong, but I’m definitely building stamina. (and that is a work in progress!)
I sat in our pediatrician’s office yesterday afternoon and listened to her describe her decision to test Rowenna for leukemia. I sat there and held my girl when they came to draw the blood. I sat and played with Rowenna while we waited for the results – our doctor was concerned enough that she didn’t want us leaving without an answer.
And I sat there, calm but silently fuming that cancer is even part of our vocabulary, that it is something that is possible, not a one-in-a-million. Silently fuming that I still wonder if I should pack an overnight bag before heading to the pediatrician, just in case. Rowenna’s blood work came back fine, and I am relieved and grateful.
That’s what this life takes. Not strength, not sainthood, but stamina.
Stamina to hear a nurse call your baby “a Downs” over and over again, despite requests for her to stop. Stamina to hear a politician say your child is a burden to the taxpayer, smile, and come back another day to explain again. Stamina to hear someone ask you if you “knew ahead of time” and didn’t you have the chance to “take care of the issue.” Stamina to hand your baby over for open heart surgery, to talk about leukemia, to sit through testing time and again.
It’s not strength, it’s stamina. It’s being ready for the long haul. It’s soaking up the smiles and giggles, the sloppy kisses on the cheek, the sleepy snuggles to get you through another stretch of the marathon.
It’s waking up to this sweet face each and every morning, and gearing up to start the day.
And it’s something I’m still working on because a couple hours after returning from the pediatrician, I had a good cry over the possibility of leukemia. Feeling like we dodged a bullet. Wondering if (when?) the other shoe will drop for Rowenna. Praying for peace, praying for stamina.
I follow several blogs about Down syndrome. Lately, there have been several little ones in the Down syndrome community who have been diagnosed with leukemia and are currently in treatment.
For their families, I pray they find healing, peace, and most of all: stamina.