Matthew was diagnosed ten years ago with Duchenne and Patrick about another eighteen months later. Today it is like looking back into a 1950's TV show for my family and me. My wife and I sometimes speak about how much simpler things were "back then". In some ways there is truth to the saying that ignorance is bliss. Sure, Matthew had "refused" to climb stairs alternating feet and wouldn't pedal a tricycle, but he was also content to play standing in front of the couch with his toys on the cushions for long periods of time. He didn't race around the house like many little boys and possessed the patience of Job. Patrick was always a "hand full", yet he was never a malicious child and always smiles and get you to laugh at his antics. The neighborhood where we lived had only little girls, so it was easy to rationalize Matthew's development saying that boys often are much slower at meeting milestones than girls. We still knew something wasn't right. His legs looked like he could be a football lineman, yet he couldn't run. Matthew's early speech was sometimes difficult to understand and we wondered if he heard everything we said to him.
Matthew and Patrick's "well baby/child" visits to the pediatrician were always good. Their older sister Rachel had been diagnosed with Type I Diabetes and we had our hands full managing that. The boys were rarely sick, yet when Matthew's physical development was discussed we all agreed he would catch up. The fall prior to attending school Matthew went through the assessment and it was recommended he either wait a year or attend half day kindergarten. Surely he would be fine we thought and we opted to have him attend the half day and repeat if necessary. The nagging doubts about his physical ability caused Alice and me to seek a more thorough exam before school began. We scheduled an appointment and planned to ask more questions. As fate would have it our daughter's Endocrinologist was alerted by a physical therapist based on comments I made during a Diabetes Camp stay about Matthew's ability and he contacted the pediatrician. We left camp to see the pediatrician, then to a neurologist and then the lab before getting home hours later than planned with three very tired and confused children and two newly worried parents.
The story is more or less typical from here. There were blood tests and waiting, more blood tests and more waiting. I visited the library in the School of Medicine at a local college learning there was more than one form of muscular dystrophy and based on my reading and multiple internet searches of the very basic muscular dystrophy sites available at the time I decided Matthew had Duchenne MD. Those out dated texts only had photos of disfigured children taken before aggressive physical therapy and spinal fusions became common practice. The pathology and prognosis was very different than what is typical today. It was both eye opening and mind numbing. When Matthew's sequencing was completed Alice and I already knew what the diagnosis would be and sat in the neurologist's office expressionless. As there was no family history and based on a quick physical exam the neurologist assumed Patrick was unaffected. About a year later we began to wonder about Patrick and soon decided to end that nagging doubt and had him tested. Lightening does strike in the same place twice.
Life didn't end for us and we plodded along, sometimes out of habit, yet decided to learn as much as possible and stay involved in any way possible. Learning became therapy and involvement provides us a positive outlet. The days turned into months that slipped into years and we've learned to accept and cope. Matthew lost the ability to walk early at age eight and Patrick is at the very end at almost fourteen. We talk about everything as openly as possible and have never denied the boys any information they needed or wanted. Their perspectives also keep us going. Despite losing the ability to walk or bath independently they focus on what they are able to do. They both refuse to consider themselves "handicapped". They challenge each other with school work and activities and are competitive with video and computer games. From outside if you were able to see them and all you heard was their banter and occasional fighting you would be surprised to see them in wheelchairs. This is normal for our family.
Days are often long in our home caring for Matthew and Patrick along with our other obligations. It doesn't end at nine or ten at night when we put the boys and ourselves to bed. Matthew hasn't been able to roll over independently for over six years. When he becomes uncomfortable he calls out to us and we turn him over. Of course it isn't a simple thing. He needs his feet positioned a certain way, his arms need to be one over the other and his covers can't touch his ears. The hose on the Bi-Pap needs to lay just right and when I'm really tired or need to get up extra early he needs a drink of water or he has to pee. I sometimes become frustrated and tell Matthew to "just go to sleep". In the morning I remind him it is my job to turn him and his job is to call. He typically does his job better than I do mine.
Some early mornings, usually around 2 AM, I hesitate going in their room. For less than a minute I wait and before I go in I think against reason that I'm just having a bad night and things will be different. I haven't slept well in a while and once I go in I won't see equipment. There won't be hospital beds, I won't hear the hissing of the low pressure mattress or the Bi-Pap or see a lift pushed against one of two power chairs. But, I'm too rational and continue in knowing I'll see everything as it is in the dim light and quickly and quietly turn Matthew and then check to see if Patrick is covered. This really is my job and my boys need me to do it without complaint.
When people learn our sons have muscular dystrophy they ask how we do it or say they wouldn't be able to handle things. I tell them this is the hand we were dealt, so we play these cards. Still, there are some early mornings when I hope to be dealt a wild card or two.