A narcissistic, negative, and always cranky monster lives in my basement. He’s been down there for about a year and a half now sulking with his anger issues. His problems with himself, the outside world, and me have been boiling for a while. I know it’s not all due to the ADD since he’s doing well in school. Well except for the rudeness to his teachers. I swear he has not always been ill-mannered, though.
When this little bundle of joy came into the world I had to fight so hard for his rights, for his little body to be treated more gentle. Although I was certain I’d transmitted our genetic rare disabling bone disease the nurses wouldn’t listen to me. It was amazing how rough and brutish they treated the newborns when they changed diapers in the nursery. I was screaming at them. “Let go of my son now! You will break his hips, ankles, or his legs!” I stumbled to my child on wobbling legs to take him away and would not let go. The on-call doctor ultimately came in and asked me, “How do you have knowledge of your child having this Osteogenesis Imperfecta? Genetically it’s a 50% chance.” I told him I wanted him to call MY doctor or even the doctor who had delivered my precious child because THEY were acquainted with my story.
It took those two phone calls plus a visit from my Early Head Start Teacher before anyone would listen to me, but I finally got a “Handle With Care” poster placed on my son’s nursery bed. This is what happens when you live in a rural area and have to deal with medical staff with God Complex syndromes. Osteogenesis Imperfecta is extremely rare. Living in rural Northern MN where no one has ever heard of it, even medical doctors, had always been a problem for my family. In my family OI has been traced back 300 years, and for this disease which is rare, such is even rarer. The 50% genetics have gone wonky for us, and the mutated collagen genes which carry the OI are dominant. THAT is how I knew my son had it.
At 10 ½ months he sustained his first broken leg. He tried to pull himself up to stand. At least I’d thought that was his first fracture. Terrified of being accused of abusing my son, as many parents of OI kids are, I brought him into the E.R. I called the Early Head Start Teacher to come with me, since she was helping me to get my son tested for OI at the MN State University Hospital of Genetics and the Gillette Children’s Hospital in St. Paul, MN. Sure enough, the X-rays showed my son attained a broken femur, but also showed past healing fractures in his toes and feet. OH MY GOD! When I was putting his shoes on, his toes and feet were breaking! He didn’t walk yet, so he didn’t cry about it. He had just fussed, and I thought he hated shoes! Nothing in my life ever made me feel more guilty than that moment.
Within a month after getting that cast off my son was standing! What a tough little guy. Then he tripped on a towel on the floor and got a spiral fracture a week later. Most spiral fractures are the hallmark of physical abuse. For families of a loved one with OI this is normal. We live as normal a life as we can until the next break. For my son and I it has been a long road. It’s just the two of us. I stopped counting his fractures at 80. That’s a LOT of E.R. visits, which don’t even count the visits for sprains and strains, twists, and what-ifs. We go to the Shriner’s Hospital For Children in St, Paul, MN once a year to observe his level of scoliosis, fractures in his growth plates, and his spinal fractures. When he broke his back, OK taking a big deep breath, I almost lost him. THAT’s another story.
As you might imagine, functioning with all this turmoil is difficult on both of us. There are support groups, but the nearest one to us is 4 hours away. I follow Facebook groups, and comment on those sometimes, but I don’t get much support locally. We realized right away in Kindergarten he had ADHD, too. Having a child with OI who runs around a lot. Not good. The more he broke, the more things he couldn’t do – the angrier he got. The more times he had to be forcibly held down by me and doctors to put bones back into place, to be in pain so many times – the angrier he got. Angry at me. Angry at all adults or people of authority. Angry at the disease. Just angry.
Despite all the anger, everyone loved him though. Teachers, nurses, my friends; everyone always told me how cute he was. He always cracked jokes, had good manners everywhere but at home, and was so whip smart. Yes, he landed problems at school, with the ADD. It had more to do with being mouthy with authority, not wanting to be told what to do and when to do it. He wanted control of his life somewhere. The schools couldn’t understand that it was all the medical stuff to blame and not the child. They would put him in In-School Suspension and then my son would have anxiety attacks. So, they wanted him medicated. I wanted understanding. I finally found a different charter school where my son went from flunking to getting A’s! They took time to understand us and work with us. OK, I cried and begged.
So, my teen has problems taking responsibility for anything he does. He’s remarkably mouthy. He yells and swears at me. He doesn’t help with anything around the house. He’s addicted to the XBox. I’m aware that he could do clubs at school, but he’s antisocial from years of being in casts, not being able to join activities, being left out, being teased, and feeling embarrassed.
Is it my fault he’s so angry and negative? Should I have pushed him into clubs and activities even when he was teased? Did I baby him too much every time he fractured? I never let him not finish homework or anything, but I advocated and fought for his rights. When he yells and swears I don’t let him get away with it. We have a very loving relationship. We appreciate all we’ve got is each other in this world right now. We are a great team. Is this teen-aged monster going to be ready for the real world? Have I done enough? Will he be tough enough to handle it on his own living with OI? Is a mother ever not terrified for her children? Did I create this boy and mold him, or did the disease create this monster?