When my oldest child was two her younger brother was born. Complications began minutes before he was born when his heart rate began to drop. He was born a week late. My doctor told me he was grateful he induced labor.
At that moment, during labor, I was not so pleased that I was induced. I was begging for the pain to stop. I was lucky I had a good doctor.
I do not believe I will ever forget the first moments of my son’s life. It was very very quiet. I waited for them to hand me my son. It took a few minutes, nurses checked him over, but they let me hold him long enough to say “hello” and get a few pictures. After that they took him away. I did not worry though, or maybe I did but I do not remember. Things seemed calm and I had hope.
We spent four days in the hospital and I was so very happy to bring him home. He struggled to eat, but that was expected. That first night we kept him in our room because we were terrified something might happen. We wanted to be there for him. Even though I do not remember his breathing before that night I do recall that his breathing was so loud we had to take him into another room so we could go to sleep.
We were not surprised by what was happening. The pediatrician had explained what he thought our son had so we were prepared enough to know he was breathing okay.
It would be a few months later before the pediatrician said he did not think his diagnosis was correct and that he wanted to call some specialists. It seemed he was always calling a new specialist every time we went in. He was an old man, he was experienced and he had no problem asking for help. That first year there was an appointment at least every week, usually more than that.
Every time I took my son to a doctor appointment I would reassure my husband that everything would be okay, but it did seem that every time I came back to report on the appointment it was always one more thing wrong. Eventually there was a long list of symptoms and no answers.
It has been several years since that first year. There are still no answers, and there is still a long list of symptoms. Some things he has overcome but there is always another thing to be added. There has been so much that I often find myself forgetting what is wrong. I sum it all up now the best I can for those that ask.
During the first year my husband told me something to the effect of, “I never wanted a disabled child.” Not too many years later he asked me if I wished my son were normal. That was a tricky question. Wishing for a more normal child felt like I would I would not be appreciating who he was and wishing away the son I had grown to love. I could never wish that away and I fully accepted what and who he was, despite the difficulties.
I have had many opportunities to ponder and think about those two things my son’s father brought up to me. One thing that really struck me was the “never” comment.
Never is something I hear quite often. Many people have said to me, “How do you do it? I could never do that.” I know they are trying to be nice and compliment me, but I remind them that they could if they had to. I tell them I have no choice. Okay, so I do have a choice, but I made my choice and that was to eliminate the other choice. I either do or I don’t. There are many times I feel inadequate and not capable, but I am doing it the best I can.
It is that never thing that really hits me though. It is a mindset. It is quite a bit more difficult to believe you can do something that is unexpected if you have already made up your mind before hand that you could not do it. There is a big difference between “I could never” and “I don’t think I could.” One shuts down the whole possibility of success before you even try.
I also find that, for me, it is also easier because of my religious faith. My faith keeps me going and helps me to see the miracles. It takes away the despair that could easily overwhelm me.
So, I tell people that they can, and they will. My son’s disabilities and needs were completely unexpected but I would not change a thing.
Why was I so calm when he was born? When I was pregnant I had many friends who were also expecting that same year. My son would be one of the last in that group. A few months before he was born I was thinking about how all of the babies born so far were very healthy and there were no complications. I thought, for some odd reason, with that many babies being born one would be bound to have something wrong. A morbid thought, I know. However, that was followed with a clear thought of, “if anything is wrong with any of those babies it will be mine.” It was a rather odd thought. I did not pay too much attention to it, but it prepared me for what was to come. Maybe he was not so unexpected after all.