Blog · November 19, 2018

Our Life Does Not Fit in a Box

I remember vividly being pregnant with my first baby, Alex. Finally my dream of becoming a mom was coming true. I waited an elated 9 months for his arrival, and on the day after he was due we found out he had died in utero. He was stillborn 2 days later. Seven months after that unthinkable loss I miscarried a baby girl at 8 weeks. Thirteen months after that I finally held Nicky. He was a bundle of warmth that felt like heaven. After that initial bliss we found out he had EB, and everything else was a blur.

For the longest time I felt lower than low. I am not sure I felt ashamed per se, but I was definitely distressed about my story, I felt distraught, even tormented by the memories of holding my dead newborn and surely poking blisters on my precious new baby did not help my psyche.

Our life no longer fit in a box and never would again.  The challenge for me, as his mom, was to let go of what I thought our life and our son’s life was supposed to be. To accept, to grieve and move on, to deal. It was easier said than done. Even when you know what you need to do, it doesn’t mean it’s an easy or fast process. The acceptance came in waves mostly because our new reality was alien to me. Everything I did felt strange. I was not a nurse, but I had to learn to become one. Needles and bandages became a way of life. But my friends could no longer relate to me, and I didn’t know to relate to anyone, plus, unfortunately, I didn’t know how to talk about it. I felt hopeless and alone and it became just easier to just not answer the phone. Pn the rare occasion that I talked to friends or family I could hardly stand to hear my own bullshit: “Everything is okay, I’m fine.”. The old me was gone, the new me was trying to find her footing. But there were also days when I felt defeated. Days that I wanted to make a difference but didn’t know how. Going out with Nicky sometimes was just hard. The stares, the under the breath comments, it was all a new world to me. I knew I wasn’t alone, but when the world around you doesn’t understand you, you lose friends and your family is either far away or unsupportive, it makes it all that much harder. There were also days were EB kicked my ass so hard I spent the day crying. I was not a pretty picture to see back then. My mind was in shambles trying to deal with it all.

Somehow, someway, over the past 22 years, I have mastered the courage to fight the battle again and again. Even though I have often been scared, angry and frustrated, I didn’t run and I didn’t quit. I found a champion in myself that I never knew existed. I will never give up.
It also doesn’t help that RDEB (Recessive Dystrophic Epidermolysis Bullosa) gets worse with age. RDEB can cause a significant amount of wear and tear on the skin over time. Wounds that would heal in a week now never heal, and they are coupled with a significant about of pain. Infections and skin cancer are an ongoing concern and fear of ours.

I’m not going to sugar coat it. It sucks. It sucks for the mild forms and it sucks for the severe forms. While we have accepted the condition, that does not mean we don’t hate it. I HATE photos and videos that show my child in pain, but this is the REALITY of my day, of our day and our lives. While I focus on positivity and am trying to find the way through this tunnel, I feel I need to acknowledge and embrace the negative, because THAT is the path to BALANCE.

Growing up with a rare disease, there are many challenges that range from personal, mental and physical. Holding on to hope is also a challenge. Those with EB are very resilient. It is in realization that you can’t even go to Target without the world staring at your child and looking at you either with tremendous pity, relief your child is not theirs, or disgust that you have the courage to take your disabled child out in public. Nicky hates going anywhere, and when he does we learned to completely ignore the stares. We made a conscious decision to not let it bother us.

Another thing I feel I must talk about is the lack of real-life friends for Nicky to spend time with. He’s now used to only having online friends, and it makes me very sad to know he may never really realize what he’s missing. Or maybe he does.

A few years ago I had a long conversation with Nicky that left me in tears. Somebody that I thought was a friend became really close to him. She claimed she truly cared. I let her buy him gifts and play with him and more. Then all of a sudden she abruptly disappeared. She didn’t move away or go anywhere, she was just always “busy” with her projects, sometimes even too busy to return a text. When I would ask what was wrong, she would always say “nothing”. When I would see this person occasionally, she would never even ask me how Nicky was at all, as if he didn’t exist. When Nicky told me he felt she “used us” for one of her projects, I felt like a horrible mother. I guess I was so eager for Nicky to have real friends I let this happened. I blame myself. Ever since then Nicky has retorted in being even less social. He may be social online with the friends he plays games with, but otherwise he has a hard time just relating to people in general, and I don’t know how to fix it, other than making sure I keep taking him to camp and EB conferences so he can spend some time with other EB patients. It is what it is.

This child of mine has been through more than most people could ever imagine. He is strong and brave. Even with all of the surgeries, daily bandage changes, infusions, poking and prodding by too many Doctors to count, judgment, and isolation he still smiles. He is truly the best person I know. I am so proud to be his mom.

Love & Light,