“Mommy, when you were a baby, were you also born with Spina Bifida or Jordan’s Syndrome?” were the words spoken by my 5-year-old.
“No, Noah, I was not.”
“Oh, so you were like me then.”
“Jordan’s takes a long time for stuff…to walk and everything…”
This out of left field comment, out of nowhere statement, at our dear friend’s house, literally made me feel like the ground was moving and I was standing still.
You know that feeling where you are choking back so hard it descends back into your chest, and your eyes are tingling because you are fighting against the gravity of your tears? Yeah, that was it right there.
While I knew my son was struggling with some big emotions with all of the changes and transitions: ending daycare, going to camp, starting kindergarten…I didn’t realize what thoughts were whirling around that beautiful brain of his.
Noah is surrounded by love. He is so lucky to have his parents, sister, grandparents, aunts, uncles, and cousins whom he adores.
But, truth be told, he was dealt with some other cards that differ than what he sees or experiences from his friends.
One of Noah’s cousins, one of the cutest, strongest individuals I know, was born with Spina Bifida. Noah can’t wait to see and play with him.
Noah’s sister, who you know, has Jordan’s Syndrome. He loves being with her and is protective and kind.
I can be hard on Noah and expect a lot from him. I expect him to act typically, to just go with the flow. But truth be told, that is simply not fair. Putting all these expectations on him can feel like a lot of pressure and, in that moment, I was put in my place.
Give the kid a break I thought to myself. He is clearly trying to make sense of this great big world around him- why he doesn’t have a disability, why some people do, and trying to figure out who he is, all in this little growing body.
When Hailey was diagnosed, I selfishly look back and remember thinking solely how it would affect me. I cringe in those moments when I thought about what her diagnosis would mean for me.
It took a while for me to fully understand and comprehend that it was not my diagnosis, but it was something that would affect the whole family. Not just me, but of course, Hailey. My husband, our son.
A diagnosis does not mean that our life is not good. A diagnosis does not mean that we will never smile.
A diagnosis means that our life looks different. It means that we experience moments that some may never: hard but joyful, sad but hopeful.
We also have something that many people don’t have- this totally different perspective.
We push through hard moments- all of us. Me, watching mothers and daughters together, fathers and daughters dancing around the room, brothers and sisters roughhousing. Hailey pushes through her therapies- and with the biggest smile I have ever seen. Noah is figuring it all out, just like the rest of us.
And as I have said before, and will say again and again, there is something bigger for us- a treatment, a cure…
And when that moment comes-nothing will be sweeter than that moment.