“Mommy, I will eat all my green beans tonight!”
“Really?! Wow! Shelby, you are such a big girl!”
“I know! That way I can stay healthy and won’t have to get any more blood draws, right!? Because if I eat my green beans, I will be healthy and I won’t need to go to all the doctors any more because you only go to doctors when you are sick, and I’m not sick! I am healthy.”
I froze. I didn’t know what to say and how to react. Mia could see it on my face. She read through my eyes and saw into my soul. Jake chimed in,”It’s ok, Shelby. I eat ALL my vegetables and I still have to get them. But all those doctors keep us healthy. That’s their job and Mommy’s job.”
Mia chimed in too. “You are SO healthy, Shelby! And I will always be there to hold your hand when you need me.”
When I could finally look at their innocent faces again, after a good ugly cry by myself, I kissed their sweet faces and told them that they are one in a million to me and I was so lucky to call them mine. Really, it’s one is 18,000, but who’s counting.
This is the real life of CAH. Meds three times a day, daily. Different doses for each child. Doctors visits. Bone scans. Blood draws are the worst part. At 4 they start to know. They start to remember what’s coming. Who we are going to see. Why we are going to see them. What happens when we see them. And even at 9, Jake sits on my lap for blood draws and his little heart races and I can hide my tears behind his back as I hold him tight and feel the hot tears on my other arm. But it could be worse. It could be SO much worse. So we are the lucky ones, right?
June is CAH awareness month.
Many of you might not have ever known this condition existed had it not been for my kids. But it does. We are extremely lucky. Lucky because there are so MANY rare conditions we could have been dealt. Because our hand was dealt after they tested for this rare condition in our state. Lucky because we get to come home and do not have to live in a hospital. Lucky because my kids will live normal lives for 99.9% of their life with a few bumps along the way, that I am sure we will be able to over come. And to each of you who knows my kids, watches my kids, protects my kids on field trips, sleepovers, at school on play dates and more, thank you. We are the lucky ones to have people like you support and watch over them.
We are the lucky ones. We have have 4 healthy children. Each born perfect in their own way. We have been taught to make people aware of differences and know that not everyone is perfect and everyones bodies are different in their own way. It is a life lesson we talk about often. Acceptance. Tolerance. Humanity. Kindness. Compassion. We are the lucky ones to live each day to see another. We will ride this roller coaster of life and take it one hill at a time.
If you would like to learn more about CAH or would like to speak to me about it in any capacity, please contact me through the CARES Foundation website as I lead their Florida Support Group for parents of children with CAH.