8 years ago today.

July 7, 2017

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. 


 

The eve of Mother's Day, 2017

May 13, 2017
As tomorrow looms, I can’t help but think of all of the bereaved moms I now know.  I was thinking back to my first Mother’s Day without Joseph in 2010.  All I did was cry.  Not “cry” as in, “I was in bed in the fetal position crying."   No.  I went through my day, talked, walked, cooked, took care of my surviving child who was one year old, etc. and cried through every bit of it.  A friend of mine stopped over with flowers and I just thanked and hugged her, all while crying.  I will...

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"Mother's Day"

May 7, 2015
2015 - "Mother's Day"

Here it comes. So reliable.  Every year - it arrives, welcomed by Hallmark and consummated by well wishes from every nook and cranny.  It once was happy for me, now its really hard. 

Since losing Joseph to brain cancer 5 1/2 years ago, I have wrestled with how to handle this day.  After all, I am lucky enough to not only still have my own mother but also that she is beyond amazing, understanding and one of the most supportive and empathetic people I have ever known.  I als...
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Our 6th year

March 2, 2015
March, to me, always starts our season of loss.  Since it was only 4 months from Joseph's diagnosis to his death, to me, March 1st (the day we went into the hospital to try to find out what was making Joseph lose weight) feels like I am standing on the top of a massive mountain peak and every day thereafter I feel like I am slowly rolling down the mountainside until I slam flat into its rocky bottom like a lifeless, floppy, numbed form of myself.

I am not sure anyone who hasn't endured the lo...

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Joseph's 7th Birthday

March 14, 2014
Below is an excerpt written by Robin Worgan, one of Joseph's aunts, who suffered the loss of her own daughter, Margaret, when she was stillborn in August of 2000.  Robin is the mother of four additional children and a writer. Her published book, "Journaling Away a Mommy's Grief" and blog can be found at www.robinlentzworgan.com.  

"
Gone but Never Forgotten: Nana and Joe" -  By: Robin Lentz Worgan

March always makes me think of my Nana. Her name was Margaret.  We named my daughter, Margaret, aft...

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Some thoughts at holiday time for the newly bereaved...

November 26, 2013

I was recently at a bereaved parents workshop where some newly bereaved parents were wondering how the more “seasoned” bereaved parents chose to remember their child on the first holidays after they had died.  I began thinking about that first holiday season without Joseph in 2009, which also happened to be his infant brother’s first holiday season ever.  The dichotomy of having an eight-month old while having lost our 2 ½ year old felt far more bitter than sweet and, th...


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A YEAR OFF...

July 30, 2013
This post is in response to the many people who have already been thoughtful enough to ask if I am forming a team for this September's Four Seasons Parkway Run to benefit the Oncology Center at C.H.O.P.  

I am not forming a team this year.  We intend to continue Team: "Joseph's Station" next year but, for a variety of reasons, felt it was best for our family to take 2013 off.  

I thank all of you for your continued consideration and support as I help my son, in his absence, create a legacy of h...
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FOUR YEARS SINCE JOSEPH DIED

July 4, 2013

I cannot believe it has been 4 years since Joseph died. 

4 years since I held him in my arms.  4 years since I snuck into his bedroom in the middle of the night to sing him a song.  4 years since I nuzzled my face into his perfectly golden brown head of hair. 4 years since I snapped his picture or picked out a TV show for him to watch.  4 years since I put on his pants or a shirt or gave him a treat to make him smile.  4 years since I told someone about the funny thing he sai...


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Pulling out of the station until next year...

September 30, 2012

Dear Team,

This morning was a huge success and Bryan and I have you (and Mother Nature!) to thank for that.  THANK YOU!

Our team alone raised almost $15,000 (many donations came in today and have yet to be logged) for pediatric cancer research and survivorship at C.H.O.P.  This tally is in addition to any team registration fees so, in all, I estimate that our team generated at least $20,000 for the event.  We had nearly 275 people register for our team and about 225 people came to the event to ...


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TEAM: JOSEPH'S STATION is pulling into the station this Sunday, Sept 30th, in Philadelphia

September 29, 2012

For our team members, this post contains information and details about this Sunday's event in Philadelphia.

On the home page of the site where you registered for this event you will find an option to click on “Event Details” and then you can click on “Team Tent Layout” which shows the location of our tent among the 38 (yes, 38!) teams that have earned tents.  Or, here is the direct link:

http://giving.chop.edu/site/DocServer/Race_Day_Layout_2012.pdf?docID=2561

We are...


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