The Parent’s Journey

Nothing about Epidermolysis Bullosa is simple — not the diagnosis, not the daily care, not the long term. If you really want to know about my condition or my child's, it’s not a one sentence answerI read a quote recently which came across a Special Need Parenting website that truly aggravated me. It stated that it was not the parent’s place to tell their child’s story, that the diagnosis was that child’s journey, not the parent’s. Needless to say, that quote received quite the amount of backlash, since most parents of chronically ill children’s lives are completely turned upside down and changed in ways hard to describe in a one-sentence answer.

This is the reason why I wrote the book (Butterfly Child), which entails *my* journey, the journey from a parent’s perspective. I made sure never to speak for Nicky per se, and even so, I did read the entire book to him which he enjoyed immensely since a lot of the stories I described happened when he was too small to remember. At times he told me he was happy he did not remember them, too.

Having a healthy child after having a special need one, made me realize that while with Connor as time goes on I can count on him being more and more independent, this is not the case with Nicky. If anything, since the condition is degenerative, he’s becoming more and more dependent on me. With Nicky I have different priorities and routines, and my day has to revolve around his needs. It’s not easy, but it’s a role I’ve accepted completely. I suffer when he suffers, but his laughter is the best sound in the world. I worry about the future, he may be taken from me at any time, so I give of myself completely, at times forgetting about my needs and desires, and while most of the time I am perfectly OK with my role as a mother and caregiver, in few others I do cry. I am human.

In a way, I had to learn to be a selfless parent in a hurry. When he was born, I was thrown in a world that made no sense to me, full of hospitals, doctors, specialists, insurance craziness, medicalese galore… coupled with a diagnosis I could not even pronounce, let alone understand. Who knew one tiny little genetic mishap could cause THIS much damage?

My subscription to any Parenting magazine got cancelled since it was a painful reminder of what my child could not do. I can’t describe fully how it felt seeing another child his age doing things so effortlessly. My dreams and plans were shattered, the future unknown.  As time went on, the difference between him and his peers only widened, and I started turning a blind eye to his peers. I could not compare, I wouldn’t. I refused to. I’ve even refused to compare him to other EB children, since the condition varies so greatly due to so many mutations causing the disorder.

Even so, when Nicky was born, I didn’t grieve. Nicky was alive, unlike his big brother Alex that was stillborn at full term, and I was determined to enjoy every moment. Instead of grieving, I became an advocate instead. Armed with a computer, I researched everything I could, became a self-trained nurse, and a different kind of parent. I didn’t know what kind of parent to be because Nicky was my first “live” baby. Since Connor’s birth, I realized that I became the parent who hopes against hope despite a horrible diagnosis, the parent who jumps out of bed the moment the child calls you even if you were in deep sleep, the parent that wants to believe in miracles.

I don’t know about the future, but I have today. And this is my journey.

Love and Light,

Silvia-Snow-Girl-DD

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