5 years? … 5 years.

How is it possible that 5 years have past since that fateful day in our lives with you, sweet Declan? It is almost exactly 5 years to the moment we heard the news and saw the “something” in your brain, the something that wasn’t supposed to be there. I remember the faces of the INOVA Loudoun doctor, nurses and child life as they prepared us for our trip to Fairfax INOVA. I now know why. They knew this was big and not very good. I could sense it in my gut but had nothing in my tool box to prepare me for what were to learn. We didn’t know, how could we be prepared for what we were about to learn?

I remember lying in the tiny, foldout PICU bed listening to the sounds of the machines attached to your tiny chest, crying, trying not to wake you up as you slept. Crying about what was getting ready to happen to you, something I couldn’t even wrap my own head around. Sobbing, afraid and alone but for one tiny person across the room.

I remember how snuggly you were, just wanting to be held. I now know you were lethargic due to the pressure the tumor was causing on your brain. How little I knew, how much we were all to learn … so much of it horrific. To this day the wounds, which sliced so deeply into my figurative bones, are still an aching reminder of the those days. Of course, they pale in comparison to what you endured my sweet, smiling boy.

Today, I sit here, again alone, trying to make sense of the deep sadness that washes over me. Knowing there are those close to me that think I do not honor you by being sad or expressing that sadness, that today is just another day. They think I should be honoring you by living the best life I can live … and I am. I also know I can do better and I am trying to do better. But how do you help someone understand the change that occurred that day, and then again 163 days later, and how it forever changed the lens through which I view the world. Not negatively, not at all, but changed. Changed by what I witnessed, what I had to agree to, what I signed off on during the wee hours of the night in preparation for the next days surgery/procedure/etc, what I participated in that hurt you, what I saw that I can never forget, what I lost, what we lost as a family. By what I had to forego with my boys at home, missed playtime, missed milestones … sitting up, first steps, bedtime routines, stories, nightly rocking in our beloved rocker, missed lacrosse games, missed doctor appointments, missed birthday parties, missed daily life.

How do I help them understand that when I look back and remember, whether that brings sadness or a smile, it also brings you, Declan. You reside in my memories … good and bad. You are there, your sweet smiling face with those piercing blue eyes, and I can visit you in these memories. Remember you, your sounds, your smells, your soft skin. Some days, like today, it brings immense sadness. Sadness over what it meant for our lives, your life. What changed and what will never be the same. How much it impacts our lives even today and is still causing pain.

I know I won’t be able to. Our experiences are different and trying only causes more pain, more distance.

Today I am sad. Profoundly sad because I miss you, my darling son. And on this March 9th, 2015, I remember the us that was and I grieve all over again for what could have been if cancer had not come knocking on our door.

I love you Declan … to the moon and back.