Joseph, our then almost 2 1/2 year old firstborn child, died 8 years ago today.

He died just 4 months after being diagnosed with an inoperable brain tumor.

He was perfect and still is.  But that part of him, and us, was not perfect.  It was the screaming opposite of perfect. 

When Joseph was within days of dying, I was told by someone who had spoken to a veteran bereaved parent that what a parent of a child who dies fears most is that people will forget their child.  The person said it to me in the context of reassuring me that they will never forget Joseph and I appreciated it. 

In those first few years I felt compelled to keep him “in front of people” in whatever way that I could to help them remember him; however, what I came to learn was that my biggest fear was that I would actually be the one to forget.  I feared that his little sayings or what his voice sounded like or how his hair looked when the sun hit it…or how the one corner of his mouth pulled up when he sensed something funny was about to happen…would fade away or be replaced.  And in some ways, those fears of mine have come true because, like other parents of multiple children, I sometimes struggle to remember which kid of mine said what funny thing or which kid liked what song or who hated bananas most. For most people, this is the result of normal parenting amnesia but for me it is riddled with guilt and complex emotions and represents further loss of a person who is not here to give us new memories.

Then something happens like what happened this past June when our third child, little Bryan, fell and ended up getting stitches in his head at CHOP.  While laying in that tiny bed with him in the hospital room, as I had done a countless number of times with his big brother Joseph, a whiff of the numbing cream on his head hit me and opened a gateway of memories and feelings. In the silent chaos of CHOP’s E.R. on a Saturday night, I closed my eyes and settled into it all.  While Bryan laid in my arms watching a movie on the TV, I let the scent transport me back to an unspecific time, over 8 years ago, when the boy lying next to me was Joseph and not Bryan.  In those few moments, which I knew would be fleeting, I let myself pretend he was here, next to me, never having left.  I held him, smelled him and felt his love next to mine.

When the attending doctor came into the room and zapped me back to the present, instead of being devastated, I felt grateful. Grateful for that tiny gift of a moment that only Bryan could have provided. One day I will thank him for his unknowing generosity.  It is in those moments, which have come occasionally and unexpectedly, that I realize that life’s details, though entertaining, are less important than the feelings of pure connection we feel to the people we love and those bonds are unbreakable. Unforgettable.  

As we round out another year without Joseph I feel surprised that I have lived even a day without him let alone 8 years.  I now fear much less about people forgetting him because what the past 8 years has shown me is that the people who will remember him and allow his short life to permanently affect theirs don’t need my help to remember him.  They remember him just because they do.  And whether they voice it to me or not, I know they know.  I know they remember.  I know they think of him.  And I know they see the same hole that I feel everyday when they look at our family.  Oddly, I take solace in that.

I think that the people who remember Joseph are the same people who would have been in his life if he were here and he would have been in theirs.  Their kids are the people he would have loved with, fought with and grown with.  They would have taught him formative lessons about life and he would’ve have taught them the same.  Or maybe he already has.

I know that so many of you, our family and our friends, remember him (or wish you had known him) and miss him.  That knowledge gives me and Bryan lots of comfort and strength.  

As we mark our 8th year without him, what rings true to me everyday is the old saying that, “Life is short.”  I live that now.  No time for B.S.  Tomorrow it could all be gone.  

Make it count.  

We love and miss you, Joseph, and whether you are here or not, you are an integral part of our family and our lives.