It’s hard to believe this weekend marks the worst days of my life. Having to let go of Henry is the hardest thing I’ve ever had to do and it only seems to get harder as time passes. Everyday I’m torn between suppressing the pain I feel and, when I can, letting myself become consumed by it.  My therapist referred to the “cycle” of grief – stirring up, settling, calm – repeat. However, a friend, who’s also a grieving mother used the better metaphor of a trap door. You’re walking along just fine, then something triggers a memory and BOOM, you fall through the trap.

Despite how many trapdoors (thank you Facebook memories) there are, the other truth is that life moves on, whether you like it or not.  I’ll always be Henry’s mom, but I’m also Ella’s mom, Dan’s wife, a sister, friend, teacher, co-worker, advisor, mentor and more recently, non-profit organizer. Sometimes I fear I push myself to fill so many roles to distract myself from the grief, and this is probably partially true.  However, the other option is simply not to live; to bury my head in the sand and wait for it all to be over. To be honest, without Ella, I may not have had the strength to rebuild my life into anything that actually resembled a life.  Even as I write this, with tears streaming down my face, she’s there dragging toys and books across the room to show me – making me smile through the pain.

When I go back and reread some of the first blog posts I wrote, I’m reminded of the intoxicating feeling you get when you become a mother for the first time. Henry gave that to me. While, his life was certainly full of challenges, I loved every minute of being his mother. Sometimes it feels like I lost some of that when I lost him.  Then Ella comes along again, slams my laptop closed and yells “ALL DONE,” reminding me that she’s here, she needs me, and she really doesn’t care how sad I am:)

Apart from Ella, some of the things that have helped are the various ways we keep his memory alive. In the past year, I have heard from two of Henry’s donor recipients. I’m happy to report that both continue to do well. Knowing that pieces of Henry live on brings peace. We continue to work towards the inclusive playground. Though progress remains slow, I’m in awe of the friends and community members who continue to come together in order to support our efforts. Nearly 200 people, most strangers, came out for Henry’s Run 5k. The Ocean County Purveyors are planning two fishing tournaments in the coming year and we continue to receive private donations … though I’m hoping that once we finish incorporating into a nonprofit, that will pick up a bit.

Many are probably wondering what we’re doing this weekend. The truth is … not much. We both took Friday off, since that marked the first day of his last trip to the hospital. We’ve had a few outings, but most of our time has been spent on the mundane “normal” daily tasks, with bouts of wallowing here and there. This morning, after breakfast, I watched “Wonder” – some may think this would be the worst day to watch that movie, but I first read the book over four years ago when Henry was in the PICU after his heart surgery. So, I think it was the best day. I mean, that movie was always going to make me cry, so why not add it to the lot right?

This evening, we decided on a more traditional celebration – one that actually required leaving the house. We went back to Jacksonville beach, where the picture below was taken and set off some lighted lanterns. Dan’s family did this on the one-year anniversary of his mom’s passing. Though we only got to experience it via FaceTime, it was quite beautiful. So, we decided to go to the beach, and gather our local “family” and send some lighted messages up to Heaven for Henry.  By now, you are aware of all the metaphors of the light and the ocean, so I won’t restate the obvious connections there.

Everyone took time to write a personal message on their lantern. I also decided to send up a lantern for my dad. Most don’t know, but he also passed away on Feb. 25 – fifteen years ago. The wind was unfortunately not in our favor, but we still made some beautiful memories. I hope other beachgoers noticed the lights passing by and wondered who they were for. I hope the lights reminded them of love. Henry taught us all many lessons: strength, humility, compassion and acceptance, but most of all – he taught us how to love.

Henry Robert Kruck

7.1.2013 – 2.25.2017