Monday, November 8, 2010

Surgery Fears

Daniel's tonsil surgery is scheduled for a week from this coming Wednesday. I hate to admit that I'm terrified. There are so many things that can go wrong in any routine surgery. What's more, I keep thinking about how many other things the doctors could find with their tests. He is having a GI scope done to check for damage from his refluxing. The doctor could also find a number of other structural problems that may be causing the reflux. The ENT is also doing a scope and he could find things that would require other surgeries or therapies. The cardiologist is also doing an echo cardiogram which is looking at a known heart murmur. We just don't know how serious the murmur is, if it's serious at all. So many unknowns, and I can't help but feel fearful.

The most important and simplest procedure Daniel is having on the 17th is the FISH test. They are pulling vials of blood in order to test for the deletion on his 22nd chromosome. This test could come back either positive or negative, but if it's negative he still may have a mild deletion that cannot be detected. Basically, I keep thinking that there is still hope (though it's pretty small at this point) that he's just a normal kid with a few minor issues that can be fixed with therapy and counseling. Once the test results are back, if it's positive my hope is over. He'll have the deletion and nothing can fix it. I keep thinking about what his life will be like, and I keep wanting the best for him. What mother would NOT want the best for her child? A bad one, that's who. I'm a great mother, so my concerns and hopes for my children are also great.

I decided to use 22q deletion as a topic for a research paper for one of my classes in an effort to try to accept things. I'm learning a lot, and some of it is scary like how 60 percent of VCFS cases also have an accompanying mental illnesses like OCD, schizophrenia and ADHD. Of those I would prefer ADHD, but I would rather he had no issues at all. The truth is that it's helpful to have information so that I can know what we might be up against. The flip side is that it's hard to see what may happen since we have no way of knowing where he is on the scale of issues. Since I started doing the research for my paper, I was searching for books at the library and found two that looked promising. One called out to me just by its title, "It's Nobody's Fault." It's really more about mental disturbances and illnesses like ADHD and how it's a brain issue, not anything parents have done or didn't do. The other book was written by a man who grew up with learning disabilities and also happens to have VCFS. His name is Quinn Bradlee. His parents were prominent writer/editor at the Washington Post. It's hard to read because so many of his experiences are reminiscent of what we're going through with Daniel, but it's good for me to read it because he's a grown man and has more confidence than I do, and I'm "normal." The book is called "A Different Life" and it's opening up a world of possibilities for Daniel that I wasn't seeing before. I think when you're raising any child with special needs it's up to you  to be realistic about their potential, and it's your responsibility to help them reach their potential and educate others about it. Daniel may not be a brilliant scholar or a rocket scientist, but he will graduate from high school, have friends, have jobs, and most importantly, he'll enjoy life. I know he can because Quinn Bradlee did, against all odds. He even attended college, made a movie, wrote a book, set up a web site. ... Daniel can do anything he sets his mind to, and I aim to teach him that his entire life, no matter what the results of any test may say. He's my boy, and I can't shut down his dreams, but I can help him reach them.

1 comment:

  1. You might like to read Sherry Baker-Gomez's book balled "Missing Genetic Pieces" and also invest in Donna Cutler-Landsman's book called " Educating a child with Velo-card-facial Syndrome". Both authors are also parents of VCFS children.


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