On February 25, 1991 I was at my son’s first birthday party and he still was not walking on his own. I can remember him trying to take a few steps, but his legs would buckle from beneath him and his head would smack the ground. I would try to catch him, but the weakness in his legs would come so quickly that I couldn’t respond in time. I knew something was wrong, but what? I was telling myself that he was probably just a slow starter. After all, some kids develop later than others, so I shrugged it off and hoped this was all it was.

I was only 2o years old myself when he was born, and had never even babysat or changed a diaper in my life. I was so naïve, scared and had no idea of what to even expect from being a parent. I will never forget hearing the doctor say when he was born, “It’s a boy!”, as I had desperately hoped for nothing else. He was beautiful, weighing in at 9lb .8 oz at birth and seemed to be the picture of health. Ten fingers, ten toes and a head full of curly, black hair. I thought to myself, “My baby is perfect!”

Over the next year and after several visits to the pediatrician, I began having concerns about the strength in his legs. Over and over again, I heard the doctor say that I was an over protective mother and that he would probably walk soon. But as time passed and he was now a year and a half older, the doctor finally said that he would order a muscle biopsy to see if there was a disease in his muscles causing this weakness. I vaguely remembered seeing pictures of 2 great aunts and 2 great uncles on my mom’s side of the family from long ago that were in wheelchairs. I mentioned this to the doctor this particular day, as he had thoroughly questioned my family history. I immediately saw concern come across the pediatrician’s face and his demeanor changed. He explained that a muscle biopsy could be done by putting him to sleep and cutting a small place in the top of his leg and taking a tiny piece of muscle. This would then be sent to a lab for testing and I would follow up with seeing a neurologist for the results.

My great uncles and great aunts that had Muscular Dystrophy.

As the day came for the biopsy, I was terrified. I was scared of the possibility of something being wrong. What if he was going to live his life in a wheelchair as these relatives had endured? What if I was just over reacting and he was really going to walk soon? But the buckling of his legs had to mean something more. Weakness was evident and there didn’t seem to be anything that I could do about it other than try to catch him if he fell. As fearful thoughts consumed my mind, the nurse walked toward me. She began to encourage him to go with her by saying that Mickey Mouse was just around the corner. He reluctantly crawled into her arms and she carried him toward the surgery room, where a Mickey sticker was hanging on the doorway. I remember him looking back and reaching for me as they disappeared through the door,

The biopsy went as planned and after two long weeks of uncertainty, it was now time to get the results. I remember sitting in the waiting room of the neurologist’s office, awaiting my turn to be called back. A child using a wheelchair had just rolled back to see the doctor. The sight of the chair made my stomach knot up. He was a cute kid and seemed as happy as could be, but was sitting in a big, scary chair with large black wheels and his mom pushed him back as the nurse had called out his name. “We are next”, I thought, as my heart pounded louder and harder. It wasn’t long before the child and his mom came out and the nurse was calling my name. This was it, the results that I had been pushing to get since my son’s weak attempt of his first steps. As I entered the doctor’s office, I saw him sitting at a shiny shellacked wooden desk, He began our encounter by offering  me to sit in a large high backed chair facing him. Things were happening in slow motion. I could now hear my heart beating inside my chest.

He looked so healthy, how could anything be wrong?

The doctor began by making me feel welcomed and he thanked me for coming in. He then went on to describe the discovery of my son’s diagnosis of  Spinal Muscular Atrophy Type II. He said that there are several kinds of Muscular Dystrophy and this was one of them. He said, “Do you remember seeing the kid that left right before you came in? The one in the wheelchair?”. I said, “yes” and my heart sank at the thoughts of my son’s life in a chair. The doctor went on to say that the other child had a different type than my son. He had a form called Duchennes Muscular Dystrophy. This type typically takes a person’s life early in their twenties. My son’s form should not lessen his life span unless he were to develop a severe case of pneumonia due to a weakened immune system. The doctor went on to say that kids with SMA Type I are unable to even suck a bottle as they are so weak and often die in infancy. People with SMA Type III are able to walk most of their lives without having to use a wheelchair. The biopsy found my son was a borderline type II to  type III. He wasn’t showing signs as quite as severe as some II’s, but was a bit weaker than some III’s.

As I began to sob thinking of the struggles that he would face throughout his life, I thought there was no hope. How could this be? What had I done wrong? Why was he being punished? How can I fix this? The doctor explained that he would need physical and occupational therapy throughout his life and that he may or may not need a wheelchair later on as his muscles began to weaken due to the atrophy in them. He would arrange an appointment for therapy before leaving his office and offered encouragement by saying that it should keep him from degressing. It should also help maintain his muscle strength. The rest of the doctor’s words to me that day fell on deaf ears, as I no longer heard what he was saying. I could not focus on more talk of a disability, a disease I had never heard of or the possibility of my bouncing baby boy spending his life in a wheelchair. What kind of life would this be for him? What kind of life would this be for me? Millions of thoughts ran through my mind as we dismissed from the meeting and left the office. I called my parents to explain the news I had heard and I still to this day remember my dad’s words of encouragement. He said, “Just be thankful that he is smart. This is a disease that doesn’t affect his mind and you need to be thankful for that. He will be able to live his life and be intelligent. He will just do it while sitting down if need be.”

Such a happy boy!

From that day on, I set my mind to be thankful for our many blessings. There will always people out there that are worse off and we should make the most of every day by counting our blessings. If my son does end up in a wheelchair from this Muscular Dystrophy, then by George he will make the most of it. I will not let this disease slow him or me down. Bring it on, as we will fight each day with a positive attitude and make the most of every moment.