Your Worst Nightmare vs. Mine

It's funny (well not really funny) how some parents worst nightmare for their child is something that I would sell my soul to have.

A newborn having jaundice is an OMG moment for a new mom. A premature baby getting diagnosed with Cerebral Palsy is a devastating blow. A pediatrician mentioning Down Syndrome markers concerning your week old baby is heart breaking. All of these things are world changing, Earth shattering moments for any parent. And I don't want to down play the significance and the challenges that any of these diagnoses bring.

But I find it funny, ironically so, that these are all things that I have dealt with and I prayed that Noah would be diagnosed with. That's right. I prayed for a baby with Down Syndrome. I prayed for a child with Cerebral Palsy. I prayed for an answer.

Which is what I got, but not one I wanted.

Those other conditions have been researched and written about. There are people in my community to meet face-to-face to talk about the diagnosis. With PMD there isn't much to read. There is so much uncertainty. There is no one within 100 miles of where I live to reach out to!

I am still having trouble, obviously, accepting Noah's diagnosis. It has not been an easy one to digest. Even with as much research, reading, and learning about PMD that I have done since we found out, it's not enough.

I feel silly saying, "I would rather be dealing with something simple like CP." I feel silly because I know CP is a worst nightmare for a lot of people and it's not really simple at all. But that's how I feel sometimes. Even if Noah has to be special needs, why can't it be something that people know about?

I remember researching Down Syndrome when we were still in the genetic testing phase. I was excited! I thought I had finally figured it out! Noah has some similar features and a lot of things could be explained with Down Syndrome. I was heartbroken, sure. I would stay up all night looking at pictures and reading stories on a Down Syndrome forum and just crying. I knew it would be hard but it would be so much easier to know what it was. I had accepted it and was ready to move on to find ways to help him. When the test came back negative for everything, I was still so sure that it was Down Syndrome I even mentioned it to his doctor. I was still clinging to my little version of "hope."

That was the same day we were told about Noah's MRI results and Pelizaeus-Merzbacher Disease. The doctor told us that we needed to "be realistic" when it came to what we could expect Noah to be able to do. He didn't tell us much else except that we would have to do a blood test to confirm for sure. Needless to say, I was reeling. I was in a state of shock that I cannot accurately describe. I cried all the way home from the hospital and then cried myself to sleep when we got home.

It was not simple anymore. It was not Down Syndrome, like I had hoped. It was not Cerebral Palsy, which was my second guess. It was something much worse, with a name I couldn't even pronounce. My worst nightmare had suddenly gotten 10 times darker and a thousand times more confusing.

Why can't it be simple?