Last night I came across an old blog of mine circa 2001, and the words I spoke on that blog are as true today as they were back then. I am not sure if I am sad that my attitude has not changed, or happy to know I was right in feeling the way I did so long ago. I wrote this a little over a month after Nicky had a throat dilatation that, for a couple of days, the doctors thought it went terribly wrong. They feared they had perforated his esophagus. In the end they didn’t, but I was in *hell* for a couple of days.
Here is what I posted:
“monday, august 6. 2001
I am a little upset today. Some people seem hell bent to put down parents whose only lifeline someday is hoping there will be a cure for their dying child. What is it that upsets them so about it? I will never know. What is it to them what helps me deal with things?
Don’t parents of children with Cancer hope for that potion to take the cancer away? They do. I know a mom that lost her child to cancer.
Do parents that have children that are dying of AIDS hope for that miracle drug? They do. I know someone that died of AIDS and her mom was not the only one whose hope kept her alive during the worse times.
The terms “Accepting” and “Living with EB” are different depending on what you’re dealing with. Accepting to me, is accepting that my child will die someday. I can accept that he blisters and that he actually has a horrible condition, but I will NEVER accept that he is going to die someday. If I did I would have already bought a cemetery plot. Heck, I have experience in the matter, I bought one already. Why do them or anyone wants me to ACCEPT that my child will die someday? Why it makes them upset when I don’t want that? That I don’t want my child to die? What is WRONG in not wanting my child to die?
If they don’t want to believe about the clinical trials going on, or the amazing advances done at Stanford… that is their business. But on some days, that’s the only thing that keeps me going.
I live my life everyday. I don’t think about a cure everyday. I just deal with things. Then, I am at the hospital. My child wakes up crying, my child is screaming. He is in pain. He won’t stop the screams no matter how much I cuddle him and hold him. The nurse comes in and we give him the morphine. Now I can’t go back to sleep. I have flashes of holding my dead newborn, thinking someday I will have to bury Nicky too. Another casket. Another cemetery plot. I wonder about the eulogy I will be giving at the funeral. I wonder at what kind of casket I will buy this time. I wonder if I will be as lucky to find another good cemetery plot. Alex has a nice one next to an angel statue… But, yes, a cure. Gene Therapy. The Drs are so excited about their progress. I talked to them. I shook their hands. They showed me the progress. Now a smile is back on my face. I smile. I get up and go kiss Nicky, I hug him. I cry. “You will have good skin at least on your hands someday sweetie, I promise.” A tear is going down my cheek, I hug his sleeping body and I am now able to finally go to sleep. Tell me, what is wrong in hoping? Even if it only helps me go to sleep?”
It’s 2013 now and HOPE is still helping me sleep at night. I cannot think of what can happen, what might be in store for us, my mind refuses to go *there*. The future is a scary, possibly horrible place and I still live day by day as I did back then, not really thinking about it. It’s how I am coping. I refuse the thought that ‘accepting’ having a lethal diagnose means I should just give up and let EB do his business and take my child’s life. I will never, EVER give up on my child. I will always hold HOPE dear to my heart. Maybe that makes me delusional, maybe I am not facing the “truth”, “reality” or perhaps I am living in la la land, all I know is that if how I am coping allows me to take care of my son the best way I know how, it cannot possibly be a bad thing. And who is anyone to judge me anyway?
As I say this, Nicky is in horrible pain. Morphine is the drug du jour, and since I only give him the big M in extreme occasions, one can only imagine my state of mind right now. If and when the time comes for Nicky, that is not up to me, but I can sure as heck fight every step of the way.
To accept or not to accept, this is the question. I can accept my son has EB. I have, long ago. I get it, the blisters, the pain, the cries. It sucks and it’s horrible, but it’s our life. Accepting the fact that he’s dying is what I have a problem with…