As I’m sitting here writing this, today is April 30, 2018, just two days before the second anniversary of Ben’s death. Benjamin died on May 2, 2016 at about 11pm in Lurie Children’s PICU in Chicago. This sounds so trite, but I can’t believe it’s already been two years.
It’s been 17 months but only seeing two kids or four people in our family photos still feels incomplete, like something is missing. Most days now I feel okay, having gotten used to Benjamin not being here daily. We have our routine and it doesn’t change much. Each morning the kids ask me what day it is and then they can tell me what we’re doing that day. Very rarely does it change, And I think that helps .... just get through each day until enough time has passed where I don’t feel as desperate to hold my son or see him or talk to him, bounce him around and make him laugh.
But every few days, I’ll see something that hits me hard and I’ll cry and go through his photos. This week it was our Halloween photos and other photos on Facebook of my friends with kids in wheelchairs. Seeing all of the cool costumes that turn their magic chairs into something very cool!
Thanks to Facebook and Mark Zuckerburg, I could easily find my memories from this same day in past years. When they were one, they were insects ... two bees and a ladybug. When the kids were two, we had a Sesame Street trio of Elmo, Abby Cadabby, and Oscar the Grouch in his trashcan. At three, Ben was an army soldier in a tank, Ava was Lightning McQueen, Colin was Iron Man (his adamant choice even though he had never seen one of the movies, and maybe we just had one book?)
I enjoyed coming up with Ben’s costumes ... searching online, getting inspired by what others had done already, figuring out how to build it and then attach it to his chair. It was only two years that I got to construct them, but it feels like more. It definitely feels like it should have been more.
There will be more memories made, more moments wishing he were here, more days of feeling incomplete. And I’ll still reminisce, look through his photos and videos, and try to remind myself to be thankful for the time we had him and not angry for the moment we lost him.
I am trying to do something with his death and keep him alive through Ben Smiles. I’m happy we’re able to impact other kids and families that are like ours was. Giving toys, creating smiles, serving others all in his name makes my heart happy. It gives his life a purpose. And I pray we’re able to give to more and more families as time goes on. If you can, please donate to our cause. It would mean so much, http://go.cffrv.org/BenSmiles
Sesame street gang ... age 2, October 31, 2014
Cute Oscar in his custom trashcan ... age 2, October 31, 2014
Mr army man ... age 3, October 31, 2015
Boys not too happy, but cute nonetheless ... age 1, October 31, 2013
Custom tank and Lightning McQueen ... age 3
Two of the three ... age 5, October 31, 2017
Gerlachs ... October 31, 2017
That smile ... age 3, October 32, 2015
Yesterday I went to a Butterfly Release/ Remembrance Service at MarianJoy Rehabilitation Hospital. They hold this celebration annually to honor and remember those small patients they’ve lost over the years.
Good morning! This is my first blog post EVER so bear with me as I push my way through this intimidating first post. I’ve been contemplating it for a couple of days now as I’ve been building the new site for Ben Smiles. I knew that I wanted a blog just to help with updates and bring a more personal approach to it. Then I wondered “what do I write about?” And “What can I continue to share that would help people to engage with Ben Smiles?”