When Alex was born nearly 18 years ago, they took him almost immediately from the hospital where he was born to our local children’s hospital. Learning of his Down syndrome diagnosis at his birth, and then discovering an issue with his heart shortly after birth, the children’s hospital was the best place for him.
But I had to stay at the hospital where I delivered him, as he was born via c-section. It was a lonely, worry-filled time.
When I finally got to see Alex again, it was two days later and he was hooked up to tons of wires in his crib in the NICU.
The nurses kindly gave me a moment alone to visit with him, and as I peered over the crib at his tiny face, a tidal wave of sadness and worry washed over me.
I began to fret about how his life would be. Would he have friends? Drive a car? Would he ever go to prom? Attend college? Those thoughts overwhelmed me as I watched that tiny baby sleep.
After several moments of wallowing in my unfounded sadness, something clicked for me that day and I quickly remembered that nothing in this life is guaranteed. If he wouldn’t do any of those things, it wasn’t going to be because he has Down syndrome. I decided then and there that Alex would do whatever he wants to do. I promised him that if he wanted something, I would make it happen.
That’s the moment an advocate was born, right there in that NICU.
Recently, Alex attended his Junior prom with his peers and had a great time. As we counted the days down to the big event, I couldn’t help but think of that moment in the NICU so long ago. I wish I could tell that uncertain new mom that everything would be just fine.
Just fine, and just how it’s meant to be.
He looked quite handsome for his prom, I think.
But I had to stay at the hospital where I delivered him, as he was born via c-section. It was a lonely, worry-filled time.
When I finally got to see Alex again, it was two days later and he was hooked up to tons of wires in his crib in the NICU.
The nurses kindly gave me a moment alone to visit with him, and as I peered over the crib at his tiny face, a tidal wave of sadness and worry washed over me.
I began to fret about how his life would be. Would he have friends? Drive a car? Would he ever go to prom? Attend college? Those thoughts overwhelmed me as I watched that tiny baby sleep.
After several moments of wallowing in my unfounded sadness, something clicked for me that day and I quickly remembered that nothing in this life is guaranteed. If he wouldn’t do any of those things, it wasn’t going to be because he has Down syndrome. I decided then and there that Alex would do whatever he wants to do. I promised him that if he wanted something, I would make it happen.
That’s the moment an advocate was born, right there in that NICU.
Recently, Alex attended his Junior prom with his peers and had a great time. As we counted the days down to the big event, I couldn’t help but think of that moment in the NICU so long ago. I wish I could tell that uncertain new mom that everything would be just fine.
Just fine, and just how it’s meant to be.
He looked quite handsome for his prom, I think.