It was the third night in a row that I hadn’t slept at all. Sleep deprivation had started to take over my mind. My vision blurry with blotches of light fading in and out. I had the curtains drawn and the blanket over my head, I wanted darkness to help ease me into what had eluded me for nights. My phone began to ring, I had no intention of picking it up. I hit vibrate and closed my eyes, I never even looked. Then it went again and this time I started to think something could be wrong. I rolled over and picked up the skinny pink case and held it in my shaky hands.
Three words came blaring across the screen.
Ronan is dead.
My heart was pounding, hard and fast. I called my sister. She was on her way to the airport and we couldn’t really speak. We had just enough time to listen to the long silence of sadness on the phone.
Who am I? I have never met Ronan. I have never met Ronan’s mom Emily. The friendship that Emily has with my sister makes her feel like a friend, makes her feel like somebody that has been in my life forever. Emily and I have shared emails over the years and she was so kind to even write in my blog. I was always amazed at how she had the strength and passion to go on living in the face of such tragedy.
We all knew that the day would come when Ronan’s body would eventually give in. When his soul would move on. I would stare at his pictures religiously. I would wake up daily and stare at his face, look into his eyes. His beauty, how much he looked like his mother, and the gold that shined around his face in all his pictures. I felt connected to him. Through Emily’s writing so many of us felt connected to him. As a mother I would cry sometimes out of frustration for Ronan. I would yell at my mother on the phone,” it’s not fair, why?” I had those same feelings when Blaise was diagnosed, that all changed for me after Ronan was diagnosed with Tay Sachs’. I had never known anybody who had a child who was terminally ill, not a close friend to the family. It was so real and so scary. It made me realize just how blessed I was.
I sat and watched my youngest sleep and I reached out for his hand. I held on to it tightly. It was days before Ronan left this earth. I was thinking about Ronan as I had Maddock’s little fingers entangled in mine. I started crying, a deep sadness took over. I wanted to take away the pain for Emily, the friend I had never met. I wanted to make everything ok. I couldn’t, none of us could. This little boy who I had never met impacted my life, forever.
Emily spent the last two years living her life with Ronan. I was always in awe and wonder of how she managed to LIVE so much during this time. The news came, it had finally happened, Ronan has his wings. I knew I wanted to live more, he life showed us that much. His short and remarkable life showed us all that we need to live more.
I sat and looked through my bag of pills. This new life that took over for me as of six months ago. I must have at least 12 or more different medications that I have to take at different times.
WHAT KIND OF LIFE IS THIS?
I WANT MORE.
I DON’T WANT TO BE A WALKING MEDICATED ZOMBIE.
I made a promise to myself and dedicated it to Ronan. I am done being a zombie. I am done only living halfway. When I come to the end of my life I want to say one last time that I truly LIVED.
May you rest in peace always. May the sun always shine on you wherever you are. May your eyes always sparkle. May you always know that you have forever impacted this world.
God Bless You Angel