This past Sunday, around 6pm, Nicky decided to come sit on the couch where we usually change bandages in front of the TV. I told him that I still had to finish dinner and clean up, but he said he didn’t mind, he wanted his bandages changed BAD. So bad in fact that he told me he wished we could do his ‘whole body’.
I was a little stunned by this. Usually Nicky is not exactly keen on changing bandages, even at 16 I have to call him and bug him about it until he decides to come and sit down so we can get started, and we normally only do either one arm or both legs. After I got done with dinner and the cleanup, around 6:30pm I sat next to him and asked him how he felt, and how his pain measure was. Ever since he was young, I taught him how to tell me his pain level so I can figure out how to help him best, “0” being no pain at all, “10” is excruciating pain. He said his pain measure was 9.5. WHAT? I immediately pulled out the big guns (as I rarely do unless absolutely necessary) “Morphine”.
Within 10 minutes he felt much better and I told him that we could just get started and depending on how quickly we were able to change bandages, we could change up as much as we could. I never, ever saw him take off his bandages as quickly as he did that night, I was mesmerized by the speed at which he was operating. We ended up changing his whole body in almost 4 hours, when usually it takes about 2 hours to do just one limb. As happy as I was at how relieved and content he was after we were done, I honestly felt as if I had been run over by a truck. Some of his wounds on his arms were once again infected with pseudonomas, which we have been fighting off for months now and I thought we had under control, and mentally I was just not in a good place. I was in the horrible ‘poor me’ place, where I hated EB more than life itself, why does my child have to suffer this much, why don’t people understand what we go through, why does life have to be so hard, why are we so alone, why, why why. I hate being in this place, I really do. I can’t accomplish anything while I am in this mood and I certainly can’t put up a good face for Nicky, whose mood is so critical for me. I hated myself.
Just as I was spiraling out of control some photos came through my Facebook feed (which I keep clear of any negativity, anybody that posts anything hateful of any sort gets hidden-I just cannot handle that kind of negative energy, sorry!) of another child with RDEB like Nicky, a younger, sweet kid, whose wounds are so much worse than what Nicky has to deal with, I felt embarrassed. Oh dear God. I felt immense pain just looking at these pictures. A few hours later I watched a video of this amazing couple in the UK, who, after losing twins, now have two adorable little kids with the Junctional Herlitz form of EB, which I know well how horrible and lethal it is. Just to see what this mom and dad have to go through daily and how that darling little kid was happy despite incomprehensible challenges trying to dance to Gangham Style, coupled with the wound photos I saw earlier in the day, was enough to send me to a place full of perspective. As bad as Nicky is, and how much he suffers and how alone we are, we can’t hold a candle to these families. I felt immense respect and felt so humbled faced with these images that I have a hard time, even now, to think of much else.
Just as I thought and was regaining perspective of how Nicky is hanging in there, I did my entire grocery shopping trip crying yesterday because just before I left I found out that one of my other EB mom friends I spent a lot of time with at Camp lost her 23 year old daughter (she had RDEB like Nicky) the night before. Just knowing how she was her whole world like Nicky is mine, just faced me with my worse nightmare. It’s hard to keep hope going when your whole world is filled with pain and challenges. Why does this horrible disorder have to exist? Why do these children have to suffer this much? How can life be taken from them so early, just when everyone else’s is starting? Every day I feel the need to fill my world with hope & encouragement, positive vibes and good thoughts, but it’s hard when the future is so uncertain. Will a cure be found in time to save any of these children? Will a cure come in time to save Nicky? That is the worry that fills my day. I know that worrying about the future won’t change a thing, but it’s hard to dismiss it when you have to deal with it daily. There is no getting away from it. Every day I am faced with Nicky’s wounds, Nicky’s cries, Nicky’s constant and many needs. So, I retort to live for today. There is no other choice. I can’t look at the future in any way but with hope. I can’t really make long term plans. I will get my degree late this spring, and even so, I will be lucky to find something part time or get my own part time business going. I don’t have the freedom that allows me to do anything else. I have big responsibilities at home. I am not complaining, just stating facts. I want the EB to go away, and I am hopeful it can be, but I can’t count on it.
I am blabbing now. I have a tendency to do that. After I vent I feel better. I can go and enjoy my day, today, and do what I need to do and get things done.
Thank you for allowing me to do that.
Anyone up for a hug? I could use one.
Blessings,
