Blog · November 21, 2017

The Hard Work of Being Hopeful

Society as a whole is filled with nice people. I met a ton of these kind people, whose heart is filled with kindness and generosity. But I don’t live in a bubble. I know some people are cruel. I know there is hate in this world. I know there is racism, bigotry, prejudice, misogyny, homophobia and discrimination. And while I encountered this cruelty in my life before my children were born-and stillborn, I just didn’t know how real it was until I became a special-needs mom. I am a little weary taking Nicky anywhere with me-a simple trip to Target can be filled with long stares, ugly looks and whispers. It’s unconscionable, but that’s how it is. This is why I am so very thankful for the people that are kind to us, we really need it.

No, special need parents didn’t ask for this. Neither did we. Like most in our shoes, We’ve been through the “Why Us” debate numerous times and there is no answer – it wasn’t our fault and it wasn’t yours either. It just is. Perhaps harder is the adjustment period, which, depending on the circumstances, can last a few weeks or forever, as some conditions are degenerative, like my son’s. When you become a part of this community, you do not receive a welcome gift, a guidebook, or a neat list of do’s and don’ts, you’re shoved into a new world without a map. It’s easy to get lost, easy to not know where to go or what to do. Finding your way around can be daunting.

The hardest part for me to deal with is the grief. Parents in the medically fragile world are very familiar with it. Not only we grieve the loss of our dreams, milestones, experiences or the future, but also the loss of our these things for our children. It’s a double-edge sword. Some of us know that our children have a very real possibility of leaving this world sooner rather than later. We know we will outlive them. Having hope for a good outcome on a trial or anything to even slightly improve the health of our children becomes a way of living.

Because of this, being hopeful becomes a priority in our life; what other people think of us, becomes less important. When we focus on the people we love and who love us, the other stuff seems to fade into the background. If I am an advocate for Epidermolysis Bullosa is because I know my voice can be loud if I am able to speak, but I must remain hopeful.  This is why I shy away from the EB support groups at large, I cannot function as a human being with hope when I feel death is at my door everywhere I turn. I need to stay hopeful for Nicky, and at times when I receive the devastating news of another death in our community I feel as if I have no hope at all. I do not know how long I will get to keep my Nicky, or Connor for that matter, I know firsthand how precious their lives are. Right now, even thinking about living without my Nicky is a life I cannot fathom.

On top of it all, I have to constantly see on the news that healthcare is indeed a privilege in this country. The “I’ve got mine, so screw you,” belief has been oozing from the American right wing for decades, but pushing legislation that will immediately hurt the most vulnerable among us is horrifying. Just today I ran across an article stating the following:

The House of Representatives voted 227-205 last week to repeal the Orphan Drug Tax Credit as part of a U.S. tax reform package. Without the Orphan Drug Tax Credit, new therapies for rare disease patients could tumble by more than a third. 

It’s as if they are saying: “Hey, my kid is healthy, so screw yours”!!

In the end, all I want to say is this:

I am the mother to a child who has a rare medical condition. I am not the only one. I am one of many. EB scares the hell out of me. But I am also the mother to a child who makes me laugh and loves my hugs and kisses. Please pray for the families living through hell. Pray for a cure, pray for strength. Pray for the moms who had to bury their children. Spread the word about EB. We need a cure, NOW!! PLEASE, PLEASE, VOTE to help us, not to kill us.

Love & Light,