Blog · July 16, 2015

Narration about my book “Butterfly Child”

Just before my 30th birthday I found out I was pregnant with my first baby. All my friends were already mothers and I had wanted a baby for so long that this pregnancy ended up being something surreal. I walked on air for the entire 9 months, it truly was Unicorns and Rainbows all the way.

I was so happy.

Then, the unthinkable happened.

The day he was due, February 26th, 1995, I could not feel him move at all, not even when I ate something cold as he normally did, all my tricks to make him move failed and I was worried.

The thought that he had died never entered my mind, however.

The next morning, a Monday, I went to the Doctor’s office to check things out and that’s where we found out Alex had died in utero.

There are no words to explain how I felt that day. Agony seems such a mild word to describe it.

I cried until there were no more tears to shed for many months, and at the end of August I felt strong enough to try again, but this new pregnancy ended in a miscarriage 7 weeks later.

At this point I felt worse than I did the entire several months prior, if that is even possible, and I knew I had to come to terms with the rage I had about these losses before I could move forward.

It wasn’t until 13 months after Alex’s death, on Easter Day 1996, that I found out I was pregnant again. No unicorns and rainbows this time. Just because I was pregnant that didn’t mean I was going to have a baby. I built a wall of denial around me, I was so afraid of being positive and hopeful that I spent the whole pregnancy in a daze.

On November 25th, 1996, I gave birth to Nicky and for the first 12 hours of his life I was in awe and breathed a sigh of immense relief, until a dermatologist came by to tell me the name of this disorder he feared Nicky had. Epidermolysis Bullosa.

In a later visit he told me Nicky would not live to see his 1st birthday. It wouldn’t be until a month later that we got the official diagnosis of Recessive Dystrophic.

Grief is a funny thing. Having experienced the worse of what could happen, having to have buried my first son, knowing that with Alex we had no chance, no hope, knowing how final death was, I knew Nicky’s life had hope and he depended on me.

For the next 18 years I did everything I could to keep him as healthy and as happy as possible.

In the interim, I learned a great deal of the injustices dealt with those with rare disorders, the flaws of the health care system in America, I found out who my friends were and who mattered in my life. I was never given a pass for being distraught or upset about how much my son suffered, and I had to look inside myself to find a way to move forward.

I never knew if Nicky’s life was going to be short or long. Will he live long enough to graduate from High School? Will he ever be cured? Will he ever know how much I love him?

In many ways, Nicky has taught me who I was, who I am.

When Connor was born healthy in 2003 I just couldn’t believe it. I know most people take their healthy kids for granted. I can’t. Connor is almost 12 now and I still can’t believe it. I look at him and wonder what I did to deserve him. Then again, I could say the same about Nicky. They both taught me to be patient, kind, to love unconditionally.