14 years since our diagnosis

This month it will be 14 years since my little boy was given a diagnosis of SMA. The diagnosis that forever changed our lives. I can still remember like it was yesterday. Taking my little baby to see his pediatrician with our concerns. He wasn't crawling nor was he stiffening his legs when held in a standing position. There were other things too that we didn't pay as much attention to and didn't realize until later, looking back, that those too were probably signs early on that something was wrong. After we had finally convinced Ryan's doctor that something was just not right; he referred us to see a neurologist. I can remember sitting in that waiting room with baby Ryan in my lap. He was somewhere in between 10 and 11 months old at the time. The time where most babies are pulling themselves up and attempting to take steps. And I will never forget the comment another mother made to me as I sat there waiting to see the neurologist. "Boy, I wish my baby would sit still like that!" Of course, she didn't realize what she was saying. But, her words stung and have stayed with me all these years. What I wouldn't give for my boy to be able to be busy like her little toddler and stand/walk. I can still remember the tests they ran on my baby. One of the tests involved sticking needles all over him to try and get a response from his muscles. I wanted to grab my baby off that table and run out of that office as fast as I could. But, I couldn't. Aaron was there with me during that test and he was such a sweet, supportive and caring boyfriend. I felt so much better knowing he was there with me. Soon after that, I had to take Ryan in to have his blood drawn. I had no idea this would be the first of many blood draws and IV pokes over the years. But, I still remember the first one so vividly. They drew my baby's blood to test it for the disease, SMA. I remember the weeks following those tests being somewhat of a blur. People called to say they were praying. Aaron was there for me and read me the story Job from the Bible. He was such a support during that time. In fact, I can still remember Steve (my hubby) who was just a friend at the time reassuring me that Ryan was just a lazy baby and that he would be fine. A few weeks later, we received the phone call. The phone call that confirmed our worst nightmares. Ryan had Spinal Muscular Atrophy and we were told that our baby would never walk. But, that wasn't the worst news. We were told that because of his age and symptoms at the time of diagnosis, he would likely not live to see his 3rd birthday. I can't tell you the devastation we felt. I remember being in a state of shock for weeks. I still had to be there for my baby. But, inside I was hurting so badly and wondering how long we had left with him. Well, here we are 14 years after the diagnosis. Ryan is still here and doing wonderfully. Yes, we have daily trials due to this wretched disease. But, Ryan is an amazing boy. He has overcome so much in his life. He has overcome 2 surgeries and multiple hospitalizations. Many times we were sure we had lost him; and then saw him pull through. He is a fighter! I have seen my baby boy turn blue and stop breathing. I have seen him go through numerous, painful treatments due to a common cold with respiratory therapists rushing around his bedside pushing tubes up his nose and into his lungs to try and pull out the secretions he wasn't able to cough up on his own. I have had to stand by his hospital bed at all hours of the night while attempt after attempt was made to get an IV into his tiny little veins. He didn't have the strength to pull his little arm away, and sometimes lacked the strength to even cry. He has endured so much. Please pray for a cure to end this awful disease. It has stolen so many babies away from their parents. And it has stolen so much from the children who live long enough to survive. It steals their smiles, ability to talk and breathe and so, so much more. We need a cure for SMA!!