Every three months I have an appointment with my psychiatrist and I strangely look forward to it. He is not a therapist per se, we do talk about my mental struggles, but I do not spend an hour blabbing about my problems. I say “strangely” because before my appointment I am forced to do an inner assessment of why I am feeling low lately so I can accurately explain myself to him. I am not used to explore my inner feelings, I have to force myself to. I am not used to try to figure out why something bothers me, but one thing is for sure, it does help to put things into perspective and get an outsider’s POV about it.
Today, for example, I realized I felt low because in a way, my life is on a “repeat” button. Day after day, week after week, year after year, I do the same thing, over and over and over again. There is a shadow overwhelming everything and that is how much my son is suffering. My husband is also not doing fantastic, his new brace hurts but it is helping him walk better, and the notion that neither is EVER going to be either cured (for Nicky) or the way he was before (for my husband) is something extremely hard to accept. Hence, my biggest challenge to overcome is still acceptance on some days. Not every day, mind you, just some days. My husband is most likely going to get a bit better over the next few years, but not Nicky, whose health is always precarious. How many more surgeries will he have to endure? To see my son slowly erode before my very eyes is demoralizing, to say the least. His increasing need for pain control is now a high priority. There is no cure for EB. There are some very risky treatments out there, but none take the condition away. At this point I am not sure there is going to be one for him to save his life. It’s a bitter pill I’ve had a hard time swallowing for the past 20+ years. It’s hard to keep hope alive when many of his friends with the same diagnosys have already passed away, and it’s only a matter of time until things take a turn for the worse. Could be 1 year? 5? 10? 20 maybe? It’s unknown. I fight to have hope every day with every fiber of my being, but the looming reality is that his form of EB is lethal. There has never been a patient with RDEB-HS who went on to live is or her life free of pain and treatment. Our best hope is to make his life comfortable and happy as possible as the condition continues to take its toll on his body.
I do try to take my mind off things, but sometimes it’s impossible. I wish I could go to lunch or shopping with my sister or my niece, or visit my parents, but the day when we move to Italy is still at least 7 years away. I am biding my time at the moment. It’s all I can do.
To make matters worse, as if they could be any worse, there is always the issue of healthcare in America. A disabled friend of mine posted this on FB this morning that put tears in my eyes:
It is tiring being afraid for your health care every single day, for much of your life. I’m exhausted. Continuously, the message received is disabled lives do not deserve to exist.
He’s right. It is exhausting. It’s exhausting to try to explain to people why my child was entitled as the next person to his life when there is a notion out there that they are taking up too many resources. I wrote about it in my book but the fight continues. One of my friends is always advocating for children with disabilities to be able to keep their insurance and one indecent person in particular replied this to her:
“Well, where I’m from, not all the calves born in a herd survive. We just can’t afford to save them all, as much as we would like to.”
I am not sure what is happening in this country, but it’s absolutely disgusting. I’ll keep fighting, but I am getting old and tired of the same-o same-o. Fairy Godmother, where are you?
Love & Light,