When my world was rocked in every way imaginable the day Emma was born and we received her diagnosis of Down syndrome, I couldn’t help but thinking of all the things she would never do. All the experienced parents will tell you that is the #1 cardinal rule of don’ts!!! Don’t tell yourself all the things they will never do. Don’t put limitations on them…the world does enough of that for them. I learned this very quickly.
Still, at times, I don’t think I would be human if I didn’t think about the fact that my sweet Emma might not go to prom, might not graduate high school with a diploma, may not ever drive, may not get married, will not have children of her own and will likely live with us always. I know, these things sound depressing (because frankly, they are somewhat!) but that is not my focus. Trust me, ALL THE THINGS EMMA CAN DO FAR OUTWEIGH THE THINGS SHE MAY NOT BE ABLE TO. Her value and contribution to our lives is far more precious than any typical milestone this world can offer.
When Emma was born a strong sense of grieving took place for me. Grieving the loss of the child I thought I was having, but didn’t. It was like experiencing a death and a funeral at the same time. My inner body was in such conflict with its own self. I knew there would be a lifetime of unknowns ahead. However, when I took my baby home from the hospital, I saw a lot of similarities from when Drew was a baby. She slept and ate just like “typical babies” did, only she was WAY better! She was an amazingly wonderful baby actually, who even started sleeping through the night at 3 weeks old!!! When I tell her story, I never leave that part out because I know that God allowed us to have a good baby so we would have the proper time to digest all that would lie ahead. Even back then I had times of “normalcy” with her.
Jumping 9 years ahead to yesterday…Emma and I went for a ride in the neighborhood in my car. She wanted to get out, so we did. Emma isn’t old enough to sit in the front seat yet but yesterday, I decided to break the rules since it was just in the neighborhood (please Lord don’t let me pay the consequences later for that…meaning she expects that every time we get in the car now!). I allowed her to ride in the front seat. As I’m driving, I look over and there she was. A glimpse of what my typical 9 year old would have been like, in my mind. She was chewing and smacking her gum, flipping her hair in the wind and turning up the radio volume as loud as possible and singing her heart out. Yes, tears filled my eyes. Yes, some sadness filled my heart but mostly happiness. Thank you Jesus for allowing me to have this moment. It was raw. It was beautiful. She was beautiful and I am so thankful for the gift of Emma, in every way. I am thankful for all the moments you allow me to experience with her and I will appreciate all of them, typical and non typical.
