I watch in amazement the Olympics once again this year and I am always blown away. I am not sure if it’s because I’ve never been athletic and anything I see makes me feel fearless or what. I have my own little hero in my house, one that blows me away at every turn. Stuck behind his computer, Nicky can do anything and everything he could never do in real life. Online Gaming and watching videos is part if not his entire life, and in this little world of his, he’s strong, free, he is a warrior, a chef, anything his mind can imagine.
This is how he survives. He just doesn’t think about EB. His computer is his opportunity to be someone else, to transform his state of mind and develop optimism and perseverance. He could be bitter, depressed, angry, instead he makes the choice of chasing EB out of his mind.
He’s stronger than me.
When he was little, in the early days, I was filled with hope and encouraging thoughts, but as months turned into years, and his condition worsened I saw hope fade and reality set in. He got weaker and weaker, more and more fragile. I still have hope, but it’s dwindling.
Lately I’ve been feeling “tired”. It’s not for lack of sleep, I feel my soul is tired. I feel as if I fight constantly, internally and externally.
I fight for services from a myriad of places, and the battle includes mountains of paperwork, phone calls, appointments, all of which takes time and energy.
I fight internally for acceptance of the reality that RDEB is a lethal monster while striving to remain positive and having a loving attitude.
I fight for my own health, which can be difficult when I put myself last. My back is starting to hurt, I’ve got ear problems, my body’s immune system I know it has weakened from the constant stress. I make it to the gym 2/3 times a week and I drag myself there. I do try.
I fight for my mental health, and while my anti-depressant works, it’s still an emotional struggle. The only respite I get is from his dad, and I am enormously thankful. I would love a nurse or a respite, but these services simply aren’t available.
I fight to remember who I was before EB took over. A career left behind, hobbies discarded. Friends that disappeared. I am a different person now, and while I know I am a better person, it came at a huge cost.
I fight with myself, as my self-talk is overly critical. I feel guilty when I say “I can’t do this anymore”. Truth is, I can, but the strength isn’t there.
I fight for understanding from everyone in our life, even from other EB parents/patients, whose journey is not quite the same as ours. Perhaps, I even fight to understand myself, sometimes I am at a loss.
Yet, I cannot give up. I am indeed tired though, and I am not afraid to admit it. This is why I write, it’s my therapy. After nearly 20 years of watching my son hurting every single day, my soul is wearing out, and while I am in absolute awe of him, my life revolves around his care. I spend hours each day tending to his wounds, I prepare his feeding pump at night, then unhook him in the morning while I change him. His bed is always a bloody mess. I measure his medications 4 times a day, I dress him, comfort him. I do everything I can to give him all the care he needs and deserves. He’s my angel. I love him more than life itself.
Yes, I will continue to fight, just as all parents on this journey do. We will fight on all levels, with all the love we can muster, because our children deserve our best.
Love & Light,
