Monday, March 06, 2006
There is something fundamentally wrong with the fact that I have had to use CPR on both of my children. Not full blown CPR mind you, rescue breathing was all it took, but I resent that I even had to do that.
People who have perfectly healthy children seldom really understand what a blessing they have been handed, yet seem obligated to tell me quite frequently how God only gives "special" children to "special" parents. There is so much more to having a child with a disability than being "special". There are ups and downs that no roller coaster or bungee jump on Earth could ever compete with. There are times when you just want to sit down and wait for the world to end so you don't have to watch your child go through any more operations or painful testing. There are times when your child inspires you to hope and dream and push for things that everyone around you says to forget about. A lot of it is just feeling tired, overwhelmed, angry, determined, abandoned, indignant, ignored and frustrated.
There have been so many times when I wanted to give up. Times when the struggle to make it from one day to the next threatened to break me into a thousand little pieces. I am no saint. I get angry from time to time about everything Samantha has to go through, and how unfair life seems to have turned out for us. I get jealous when I see shallow people who seem to have the world handed to them on a silver platter while we must scrape by below the poverty line. There have been so many times when I have had to fight the urge to beat some snotty little twit unconscious, for the way they acted or the thing they said about my daughter. People can be so hurtful when they don't want to understand. I get so irritated with people I see who neglect their children, and refuse to notice what a miraculous thing it is that their child CAN annoy them.
My son learned to clap today. Palms together, repetitive, purposeful clapping. Big deal, right? Well, it is a big deal to me. My daughter is six years old, and even with years of relentless therapy, is still unable to perform that simple task. Every new minute skill Auron acquires brings with it so much joy and pain. Joy because he is healthy and everything seems to come so easily for him, and pain because it highlights how difficult it is for Samantha to conquer even the smallest developmental milestone. Because of Samantha, I know what a wonderful thing it is for my son to walk across the room by his first birthday. I do not take anything for granted. I guess in that respect, I am thankful that my daughter was born with Angelman Syndrome. If she had been a typical child I probably would have never appreciated all the little things that now seem so monumental.
Before Samantha was diagnosed I saw a ballet that made me cry. The grace and beauty of the movement reminded me of my love for my newborn baby, and in my mind I could see Samantha on stage dancing along with the heavenly music. Although I know now that my beautiful girl will never be graceful enough for ballet, the change she has brought into my life is a glorious dance of its own. I hope if you read this, and have children of your own, that you take the time to marvel at what a wonderful gift you have been given. Spend time with them while they are still children, for soon they will have no time for you, and you will regret the time you missed. And please, don't take a single moment for granted.