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The years, months, weeks, days, hours…just keep piling up and our old friend / foe Time can sneak up and get you sometimes. Lately, it’s felt as if I am finally coming out of shock and I look at the calendar in disbelief. Though I say that every year now, it becomes harshly more true with each passing year. The pain of losing, and coming to terms with life without, Noah is too much to bear all at once. So it comes in cycles and waves; a little at a time. I cling to loved ones in alternating phases of hiding myself away.

Three years ago today, we were struggling to get and keep Noah on life support. Memories of those days in the hospital PICU are blurry and though I try not to dwell on them for too long, it’s more difficult this time of year. It’s difficult and painful to reflect on that time, but I feel like it’s a way of honoring that final phase of his life, much like taking care of Mom during the final weeks of hospice care. Each touch, interaction, spoken and unspoken word is a final and desperate attempt to convey your love for them as they reach the final milestone.

handsI remember the sterile smell of Noah’s hospital room. His limp hand in mine. Opening his closed eyes so I could see and remember how green they were. Trying to ignore the thick, red tube going from his heart to the ECMO machine that did the work of his organs while they struggled to heal. Laying next to him in the bed and wrapping his arm around me. Taking mental pictures of every tiny nuance of his body: the freckle on his left hand that was similar to mine, the one on his ankle, the swirl of his belly button, ears, head, hair, sweet but swollen face…

I remember giving him a sponge bath, the way I had seen done for Mom in her final weeks. I even had someone bring in his “itchy stuff”: ointment for his eczema. “Maybe he’s itchy,” I thought, “and he can’t tell us.” I went through the whole bath / ointment ritual with him one last time, imagining his predictable responses while carrying on our usual bath-time dialogue. I didn’t care what the nurses or other visitors must have thought: is she crazy? has she totally lost it? I didn’t care what anyone thought. Noah was what mattered and, loud and clear, I heard him in my heart.

I had to be re-assuring and positive when I thought he could hear me nearby. Breakdowns were for the waiting room or outside when I wanted to be alone.

I remember spending the 4th of July in his bed with him watching the fireworks outside his hospital window. Having had the first confirmation of brain death, I knew he probably couldn’t hear me describing them to him, but I couldn’t let go of being his mom just yet. I needed to experience one last special, exciting, fun moment with him and try not to think about all that had happened and what the next few days would bring. I just wanted to tell him about the beautiful pops of orange, purple, blue and all of the shimmering colors as they splashed across the sky, so that he wouldn’t miss them…pretend that there might be something normal about what was happening if only for a few seconds in time.

I know that I can’t re-live or change the past. It’s excruciatingly difficult to look forward when the goals and plans of the past have crumbled around you, taking some of the closest of your loved ones with them. What happened cannot be changed, as awful and unfair as that is. I have no choice but to do my best and try to go forward.

Most children strive towards their parents’ pride and approval: doing well in school, working hard, behaving and doing as they’re told. My goal is to hurry up and do what I’m meant to do in this life so I can finally be greeted by my son, running into my arms as he says, “Good job Mommy!” while my mother looks on with pride.

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