“Hell was the journey but it brought me Heaven” - Taylor Swift

As promised, I’m going to give you a glimpse into our life, raising awareness for our son Graham’s diagnosis of Epidermolysis Bullosa (EB). So, what better place to start than at the very beginning...

As many of you know, the diagnosis of Epidermolysis Bullosa (EB) was unbeknown to us before Graham’s birth. I had a very uneventful, happy, and healthy pregnancy. There were no abnormalities that showed up on any Ultrasound, tests, or bloodwork. We chose not to do genetic testing, however, even if we did, EB is not something that is routinely tested for in utero due to the rarity of this diagnosis. Those 9 months were filled with so much anticipation, joy, excitement, and love for our firstborn child. We had no preparation for what would unfold on December 5, 2019.

When Graham was born via C-Section we immediately knew something was wrong because he was missing skin from all four extremities, and his back. This missing skin looked like bad burns, and although the medical team at Rome Memorial Hospital knew this was indicative of a serious condition, they didn’t know quite what it was. Within hours of his birth was rushed by ambulance to Crouse Hospital in Syracuse. As they were prepping him for transport, a Nurse Practitioner from Crouse came in to talk to us about EB, as they suspected this was the diagnosis. I don’t remember all of what she said as my head was spinning, but I do remember her saying his life would be very tough and she implied, in so many words, that we may never have the opportunity to take him home from the hospital.

We... Wouldn’t… Take... Him… Home...

Those words hung in the air like a thick fog that completely consumed me from the inside out. I felt like the wind was knocked out of me. At that moment I felt like I was surely in a nightmare, and there was no way that this could be real life.

When I was pregnant, there were many things I looked forward to about being a first-time mom. One of the highest on my list was being able to hold my baby for the first time. It was clear this dream wasn’t going to become a reality just yet, but I was still able to see Graham before his venture to the NICU. It was the most surreal moment… he was all wrapped up with a little hat on, and I swear he looked right into my eyes. As soon as our eyes locked, my heart melted. He knew I was his momma and our instant bond was created. Although this bond didn’t happen as I always imagined it would, it was there and for that, I was so grateful. I was able to touch his skin gently, with a glove on my hand. It meant everything to finally see that precious baby I fell in love with 9 months prior. The suspected diagnosis of EB or not, I thought Graham Everette Robertello was absolutely perfect.

Those next few days following are still somewhat a blur. I missed my son every second of the day and night. Graham was born via C-section, so I was healing from surgery, in a fair amount of pain, and trying to process everything going on around me. Carl was with Graham in Syracuse and alongside him was his twin brother Mike, who drove in from Buffalo as soon as he heard the news. I thank God he was able to be there to support Carl as I was not yet able to be there myself.

My mom didn’t leave my side the entire time. She stayed with me and slept in the chair by my bed every night. We had Lifetime Christmas movies on in the background but didn’t watch a single one. Often, we would look at each other and cry. All along I was thinking about how it was not supposed to be like this. This was supposed to be a happy time. I was supposed to have Graham and Carl with me. We were supposed to be starting our life as a family of three, experiencing joy, excitement, and maybe some sleep deprivation. Instead, I was on a maternity floor after having given birth – but I didn’t have my baby with me. That was such an indescribable feeling of emptiness and sadness. Family came in and out to show their love, and I truly appreciated that.

On the second night, after he was born, I can remember going into my suitcase to find pajamas. I caught a glimpse of the “coming home outfit” I had packed for him. I vividly remembered the joy of picking that outfit out with Carl. The tiniest and most adorable outfit – grey, with a tiny elephant on the shirt. I picked it up and held it in my hands, clutching on to it so hard. I was willing with every ounce of my being that I would wake up from this bad dream. Then, I broke down into tears.

I was discharged on Sunday, three days after he was born. I couldn’t face going home without Graham and seeing his nursery empty, so I stayed with my parents that night. I was FINALLY able to get to the NICU on Monday. It was so impossibly hard to be so far from him and Carl, and those few days felt like an eternity. Although the NICU stay was an adventure of its own, I was exactly where I needed to be.

I share this very emotional part of the journey because I’d like people to understand how far Graham has come. We celebrate every success of his – no matter how big or small. There are many times we think back to what that Nurse Practitioner implied on night one and we thank GOD she was wrong. I don’t think she meant any harm in what she said to us, this was simply her educated guess. An educated guess that likely stemmed from a lack of knowledge and awareness of this diagnosis, which brings me back to the reason for these posts.

We want to get EB into the forefront, and out of the background.

If you know me, you know I’m a HUGE Taylor Swift fan, hence the title of this post. She has a lyric that I feel sums up this initial part of our story – “hell was the journey but it brought me heaven.” Graham is our heaven. Carl and I don’t look at our son and see EB. Although the challenges are certainly there, we see a happy, beautiful, strong, brave, determined, and resilient baby boy who has blessed our lives beyond measure. We will keep fighting, and we will keep spreading awareness. His battle is our battle, and with him, we will fight.

This is EB.