It was 14 years ago on June 14, 1994 when we learned that our son was born with something wrong. We had no idea what that something was until the doctors ran some tests and found that he had Velocardiofacial Syndrome (also known as Shprintzen Syndrome). He couldn’t keep his formula down, and he was not gaining weight. Doctors had to insert a feeding tube through his nostrils (NG tube) so he could be fed. Later the doctors had to surgically insert a tube into his stomach (G tube). My wife and I are glad we did not know what exactly we were in for with our son. It has been an up and down emotional “roller coaster” with him for almost the entire 14 years. I’m not sure I can say we would have chosen this for him, for us, for anybody. And yet, here we are.
Raising children is a life changing experience. That’s doubly true for a special needs child. You really find out what it means to love someone else unconditionally. It’s not what you get from the child, but what they need to receive from you. You really have to grow up and accept responsibility for your child’s special care that he needs. At one point prior to his heart surgery, we had to give our son six different medications. He was on an apnea monitor and oxygen. I remember waking up in the middle of the night when his apnea monitor would go off and would think that maybe his heart or his breathing had stopped. Fortunately, it was always the sticky lead patches that came off of his chest after the adhesive stopped working. How we remained calm during those events only God knows.
As our son grew he would require larger tubes to be placed into his stomach. On occasion the acid from his stomach would leak out around the stoma (the opening in his skin the led to his stomach) and cause him terrible pain. I can still remember his cries and feeling helpless to do anything for him until the doctors could see him and change his feeding tube. Another time our son had pulled his feeding tube out (the balloon that holds it into place had deflated) and the pediatric surgeon was in surgery for a long time before he could help. When the surgeon did arrive he advised that the stoma was already starting to close and that he would have to dilate the stoma with a metal dilator. He also informed me that I would have to hold him down while he inserted the dilator. I can still see my son scream in agony while the doctor did this, while I helped hold him down.
Why did I do this? How could I do this? Because I knew that it was in my son’s best interests to get that feeding tube back in his stomach as soon as possible. That’s the why and how of it. It was one of the hardest things I’ve ever had to do. And if I had to, I’d do it again. Just don’t ask me to do it again. Find some nurse pushing a pencil, or a candy striper wheeling a patient down the hall. When our son reached kindergarten he no longer needed the feeding tube and could eat enough on his own. We had a celebration. He doesn’t remember much about his tube. I’m glad.
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Ten Ways a Special Needs Child Will Change You Forever