“Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure or nothing.” ~ Helen Keller
There is one thing I know for sure. I do not resent my son for anything. I do not resent the life we have because of his disability. I do not resent the extra work involved with being his mom. I say I do not resent him, because I am quite sure he didn't show up on this earth to be a difficulty to me. I am quite sure that if he could run, and talk, and stand up, and eat anything he wanted, and play at school he absolutely would. So how could I ever resent the way he is?
That being said, there are moments in my life that I absolutely hate the fear...the constant feeling of fear this life has given me. There is a part of me that says, Max already has the disease that will one day take him away from me. Deep inside me thought, there is a constant fear that he will get sick, and being sick will be the thing that makes his body give-up..and it will take him from us.
And this isn't an unfounded fear. From diagnosis, they tell you how important it is to keep him fed, keep him hydrated, let them know as soon as he has a fever, keep him away from sick people. I've known too many parents who have had to say goodbye to their children because of a cold, or a flu, or fever, or they got dehydrated.
That's just the Metabolic disease side. There is the epilepsy side of things too. Can't forget his medicine, he could have seizures. He has to sleep, or he could have a seizure. He gets a fever, he could have a seizure. His metabolic levels get out of whack he could have a seizure. And a little seizure, while not entirely harmful, could turn into a big seizure. Which could make him stop breathing. Which could end his life.
Now, I'm not trying to sound all gloomy, talking about death of my child. I have not shed a single tear typing this up. I don't sit and dwell on death, or life without Max. But it is just always in the back of my mind. And I don't like it. I wish I wasn't always so worried and scared about his health.
I wish we could go to the zoo or the park, without worrying that I could touch something that a sick child touched, then touch him, then he could get sick.
Or, me going to the store, and touching the shopping cart, that someone had coughed all over, then grabbing my fruit and veggies, and then making sure I was them with soap and water when I get home because they could have gotten the germs on them.
Or, when Steve travels hoping to God he doesn't catch anything because if he gets home and brings an illness from co-workers, or the airport, or airplanes, it could skip him, or me, and Max could catch it.
I don't hate my life. In fact, I don't mind staying indoors to keep him from the risk. I don't like it...but readily stay away from friends and family to give him the best chance of staying healthy.
But I hate being afraid. Because in the end, I absolutely have no control over this disease. I have no control over the seizures. I have no control over what will be THE thing that wins his fight.
I guess in the end I have two choices, and I wake up every day and have to make that choice. Either I live scared, and let that take control. Or, the choice to live cautiously...but still to live. Because the amount of life any of us has is not determined by us...just the quality we get out of the amount of time we have.