I had dreams of my baby being perfect, and when Riley was born that’s the first thing I said, “She’s perfect!” What I've come to realize is that Riley is just that. Maybe not to anyone else, but to me and to God, Riley is PERFECT.
Riley was born a few days after the 4th of July 2016 and I remember it like it was yesterday. Watching the 4th of July fireworks with all my family members, envisioning my daughter to be, who would soon be running around with sparklers like all the other kids. I remember posting on Facebook with my 4 girlfriends who were pregnant, all with baby girls, about my excitement for Riley’s arrival.
On July 8th Riley was born, 7 lbs., 7 oz. I remember that her cry was silent, a few seconds later I heard it, but it was very faint. I remember the nurses saying her low cry was because fluids were in her lungs and she just had a hard time getting them out on her own. Little did I know how this very moment was a sign, a sign of her perfect imperfections.
A few days later Riley came home, a day later than expected. Riley had arrived, I had my little family. I was very excited to begin our journey together. At her 2-month-old checkup, I had a list of things that I was concerned about:
1) Her cry was so quiet
2) She hated tummy time
3) She couldn't hold her head up
I expected her Pediatrician to tell me Riley was just a little behind, and that she had a raspy voice. However, when her Pediatrician performed some physical tests that required natural reflexes, and then gave me this look, I immediately knew something was wrong.
I remembered that I was diagnosed as being a carrier of Spinal Muscular Atrophy (SMA). At the time, it was my 3rd pregnancy and I never looked into the matter. Now I looked up the diagnosis and quickly went, “not my baby”. The next 5 days were the worst days of my life, I knew deep down inside what the results were going to be. I wanted to accept it and start finding answers and solutions but her Dad and I couldn't agree and we shortly separated.
This began our journey together, of crying, smiling, laughing and just looking for ways to enjoy every moment, no matter how small, or how few they were going to be. I have resuscitated my daughter numerous times and never imagined what that would be like. I've watched her turn blue only to see myself turn into someone I didn't know. I have seen myself, without panic, use all of the medical equipment that at one point I could barely pronounce to get Riley to breathe again.
Riley’s disease has robbed her of all the functions that our bodies naturally do, i.e. talking, swallowing, eating and coughing. As a result, Riley requires respiratory treatments every 4 hours around the clock. Her disease also prevents her from sitting up without help, crawling or walking. To say the least, SMA makes all of those visions I had of her, and with her, very different.
Riley loves to go on an adaptive swing, go in her stroller for walks, and her favorite is to go swimming at her Grammy's house. Riley has a huge family of cousins, a big brother, and a sister who love her dearly. She enjoys watching the kids run around, or her brother play with his cars. She loves taking a bath and kicking her legs and feet with the buoyancy that the water provides. She loves attention and her smile and personality are one of a kind.
The next part of our story is that we would like to venture out and see some of the world. Riley loves the water and the beach, so this is one of our destinations. I would love to take her to the Aquarium, because she loves her ‘light up” fish bowl and the movie Finding Dory. To show Riley the real thing, and to see her expression, would be profound. There is nothing wrong with Riley’s intelligence; she thinks just like a physically normal child her age. Actually, many physically disabled kids are intellectually advanced because they are not distracted while learning.
I am honored to be Riley’s Mother; she is my motivation. All the small things Riley does on a daily basis have given me a new perspective on life. It's impossible to complain, give up, or stay negative. Riley deserves the world and I'm going try to give her as much of it as I possibly can.
Riley’s fundraiser is to raise money to purchase a wheelchair accessible van. This van will help us on our Journey, to be able to live a little more freely and to see the world and all the beauty in it. We would be truly grateful and honored if you can find it in your heart to help Riley's Ride for Life.