I had to take Aaron to the doctor today because he has been hysterical for the past three days and I had no idea why. It turns out he has an ear infection and it looks like his tubes are gone, so we are probably on the fast track for our fourth set of ear tubes.
Life has been really stressful lately and I often feel like I am not doing enough for Aaron or I get frustrated because I just want to be able to understand what he needs. The communication is getting better, but it is still exhausting.
But tonight, in the midst of my stress and frustration with my own situation, I came across this post about another family's struggle.
Appalled isn't a strong enough word to describe what I felt after reading this. I found this story posted on a Facebook friend's wall. This Facebook friend has a son with Down Syndrome and horrifyingly (is that a word?!) was told the same thing about her son.
To summarize what happened, this family has a little girl with a chromosomal disorder and she has kidney failure. She will need a kidney transplant sometime in the next six months. Her parents take her to the Children's Hospital of Philadelphia (CHOP) which has an excellent reputation as one of the best children's hospitals in the world. A few days ago, they went to discuss her medical needs with the Nephrologist and were told that she was not eligible for a kidney transplant because she is mentally retarded. They had written it down on a piece of paper and highlighted it. When the parents said they would find a family donor and didn't need to be placed on a donor list, they were told that the surgery still wouldn't be done at CHOP because of their daughter's disabilities. They told her mother that her daughter's life wasn't worth saving. TO. HER. FACE. If you haven't read the blog post, you need to. I can't adequately express what happened here because it didn't happen to me.
But the panic is rising inside me. Just because this little girl doesn't have Down Syndrome doesn't mean it hasn't happened to children who do. I have already read multiple accounts of this happening to kids with DS. And it shouldn't be happening to ANYONE, regardless of their disability. If someone ever dared to tell me that my son's life wasn't worth saving, that his life is less valuable because he has DS, they had better say it as they run in the other direction. As far as our society has come to improve the lives of people with disabilities, we clearly still have much farther to go. No doctor should have the right to tell a parent that their child isn't worth saving because they might not be as smart as other kids.
I don't know what I can do about this, but I can't do nothing. It's not right. I can't stand that this is happening and something has to be done to make it stop.
So, despite the stress and struggles we have been dealing with lately, reading something like this suddenly puts it into perspective. All of the work is worth it. My son may not be able to talk to me yet, but he will. And his life will ALWAYS be every bit as valuable as anyone else's.