From my book “Butterfly Child“:

“For a long time I told myself that things would get easier. It was going to be easier once he sat up, or when he was out of diapers, or when he turned 10, but I had been duped. The wounds were bigger, nastier, took longer to heal; the limbs were longer, we needed more bandages, longer wound care, hands worse, more homework, and things were only going to get tougher.”

I wrote this sentence in my book to illustrate how, as time went on and Nicky got older, some things got easier, while others got tougher. At 20, Nicky can tell me what hurts, where it hurts, how to make it better, when to change his bandages and is practically in charge of his well being, to which I oblige, but his inability to walk anymore or even move at times and my inability of carrying him because he’s too heavy and would cause him blistering, makes things very tough.

Just yesterday I was looking up a friend that Nicky had in kindergarten after watching a video of them together. It was one of those “I wonder whatever happened to her?” moment. So, I looked her up, and found her on facebook. It was so strange to look at this girl, who was Nicky’s age, married… with a baby? It’s hard for me to believe that Nicky, at 20, should be going to College or have a life of his own. It hurts, I can’t deny it. Even though I’ve accepted the diagnosis and our life, sometimes the emotional wound of “what could have been” comes right out in the open. While my child has grown up along his peers, his independence never will. Every transfer, change of clothes/bandages, drink, g-tube feedings etc needs my assistance. And I hurt for him.

Of course it doesn’t help that I am getting older in the process. I am no longer in my early thirties, I am in my early fifties. I try to stay active, but life is draining for me. What has helped me the most is to try to control my emotions. Things that used to upset me I refuse to get upset about. We don’t choose what happens to us, but we can choose how we react to it. I don’t complain because it doesn’t help anything. Being happy costs nothing & keeps you healthier. My mental, emotional, and physical health relies on how I look at things. I also try to take time out for myself. I take a nice bath once or twice a week. I have 6 books I am reading on and off at a time. I try to do what I can do since I am stuck at home. Nicky cannot be left alone for more than a couple of hours at a time, and on many occasions, even when I am out shopping, at the gym or running errands, I have to rush home for him. It’s not easy to be at someone’s beck and call. Yet, when he’s at his dad for the weekend, I feel completely lost. Part of me is missing. I don’t like it one bit. I worship my son, I will do anything and everything for him, and that’s the truth. I’ve always believed that one of the most important things kids need to hep them survive in this world is someone who’s crazy about them. My parents taught me that.

With EB, as in with everything else. is all a matter of perspective. We’ve gotta put that brave face on, that foot forward, and march on, I strive to make my son’s life worth living.

Quality of life, however difficult it is to maintain at this point, is still my main goal. I am always so desperate to find anything to ease his pain and make it possible for him to lead some resemblance of a decent life. I know things are not “normal” and will never be. Every month Nicky is in the hospital for an infusion and blood work at the very least. Less often are surgeries or other procedures. It’s a way of life. We have the routine down to a science. I lost count at the times we’ve been to Stanford in 20 years, it was 9 times last year alone. Let’s just say that CHLA & Stanford Hospitals are my “other” homes. Hospitals don’t scare me anymore like they once did. I’ve come to know them well. I drive my son around so much that I often think I should have a special bumper sticker on my car. Instead of having one that says “My kid is on the honor roll” (and Nicky was on the honor roll BTW!!!), I should have one that says “My kid is fighting EB with courage”.

If I was to give anyone advice on how to help a special need parent, is to please be part of their solution – not their ongoing problems. Please be that person who wants to help their child instead of giving them negative feedback… be the person eager to offer uplifting encouragement. We all need that.

Love & Light,

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