Blog · May 19, 2016

I Hate EB

Several years ago an EB mom I used to correspond with said something pretty profound and perhaps a little controversial that I wasn’t sure if I agreed with or not.

I normally am pretty clear how I stand on issues, after-all I am in my early 50s, and while I am still open to discuss matters and topics up to a certain degree, there are some things that I just will never change my mind on because my life experiences steered me in a particular direction. That direction being a more empathetic, kind and positive. Yet this issue is one that, after all these years, I am still unsure how to feel about it. I can’t agree and I can’t disagree.

It came all back to me yesterday while reading a book, where the father expressed similar sentiments as my friend, and I realized I still hadn’t made up my mind and I probably never will. The original statement from my friend was that in her view, the worse form of EB was not the one where the children die within their first year of life (the Junctional-Herlitz form), but Recessive Dystrophic, because the patient can live in agonizing pain for decades, becoming more and more dependent on others, not being able to eat, having to deal with surgeries, infusions and the list goes on and on.

quotescover-JPG-17I see it both ways actually and I think they are both horrible, but being able to choose, what would I choose? Would I choose a baby with JH or RD? I sorta experienced both. I don’t know. Neither. And this discussion on what is “worse” is always a little uncomfortable for me anyway. I hate when others compare themselves or their children to Nicky too, it drives me crazy. Comparisons are cruel.

Having lost a baby at birth, I can honestly say, from first-hand experience, that the grief is absolutely and completely heart-wrenching. It is horrible. I lived in sea of tears for months after Alex was stillborn and ’til this day the topic is just too much for me. I realize also that having a stillborn baby and a baby that dies a few months after birth is a little different, but sentiments are not dissimilar.

This coming Saturday on my favorite show (Outlander!), the main character, Claire, has a stillborn baby. This is not something that happens often in shows or movies, as a matter of fact it’s something rarely seen onscreen (despite the fact that 100 babies are stillborn in the United States every single day) and while I did read the book so I know what’s coming, I know for a fact that I will watch this particular episode with a tissue box nearby because I will be for sure be a fountain, a non-stop fountain. I’ve learned to live with Alex’s death, but this episode will bring up feelings I keep buried deep inside. And it’s OK.

The death of a baby it’s a scarring event, make no mistake about it. The thing that haunts me the most is that it’s so FINAL. There is no hope to be had, it’s over. On the other hand, while awful to the nth degree, Recessive Dystrophic allows me to still hug and kiss my child, 19 years later. I do have hope. But do I like that he’s in pain and everything else that goes with it? The bandages, the wounds, the pain meds, how uncomfortable he is, the surgeries and on and on and on and on? I hate it. I hate it. I hate it. I hate it. It’s just incomprehensible how awful and horrible it is. “Awful” and “Horrible” do not begin to describe RDEB. And of course, also here I speak from experience, as I’ve lived with RDEB for almost two decades, and while atrocious, I am yet to feel the grief I experienced after Alex’s death. I am scared of the future because “if” and “when” the fates decide to take Nicky away from me I will be destroyed.

Neither is easy. “Life with EB” or “Life after EB” are equally devastating. I can’t choose because they are both against human nature. As mothers (and fathers!) we have children for many reasons, none of which include seeing our babies in pain for decades nor burying them, which is the end result for both.

All I know is that as a parent (because here I speak as a parent) I hate EB. And nobody can convince me otherwise.

Love and Light,