Dinner brings meaningful service to the Ronald McDonald House

We took a group down to Ronald McDonald House in Chicago to provide, prepare and serve dinner for families. RMH is a “home-away-from-home” for families so they can stay close by their hospitalized child at little or no cost. We had the opportunity to stay there when Ben was at Lurie Children's Hospital the last time - it really was a blessing to be within a few blocks from the hospital. The facility is welcoming, comfortable and can be treated as if it's home. 

It was a nice touch to the week - we got to serve about 50 people and I got to chat with a few families about their kids and what thye are going through. We had a few ask about Ben Smiles so I was able to share a little about our story. And ... I could tell who was a NICU family by the all-too-familiar gold parent bracelets. At one point in time, I wore THREE of them back in 2012!

We had a great group of friends and family who volunteered with our group. Thank you to all who helped out - Amy, Susannah, Alex, Julie and Abby, Rob, Colin & Ava. 

Busy November!

So, I’m just slightly stressed (and blessed!) with all of the Ben Smiles initiatives going on this month. It’s turned into a month of service and giving to others, which I think is appropriate given Thanksgiving is coming up. Here is just a snapshot of what we are doing:

Ronald McDonald House dinner service – Wednesday November 15.

We were able to stay at Ronald McDonald House in Chicago during Ben’s last stay at Lurie Children’s Hospital, so I wanted to find a way we could support them this year. They have a Meals from the Heart program where they have volunteer groups come in a provide/prepare a dinner for those families staying there. We signed up for the only open day they had this year … Wednesday November 15. We’re preparing a picnic theme … ham/turkey burger bar, chicken, baked beans, potato salad, fruit, chips, desserts. This will be a fun one.

Two Adapt A Toy Events – November 18 and November 25

November 18 – Ben Smiles will be at Marianjoy Rehabilitation Hospital in Winfield, participating in their annual Adapt a Toy event. There will be modifiers on hand adapting toys on site. Activation switches will also be available. There will event be a gift-wrapping station where families can even have their toy wrapped so it’s ready to go under the tree! It’s a great time for kids and families – a couple of years ago, we were at this event with Ben and it’s great to see the toys getting adapted. It’s such a treat for families and they get a new toy for their special child! Pre-registration is requested.

November 25 – Ben Smiles is partnering with Kmart, Easter Seals and School Health on this first ever adapting event at a Kmart. Easter Seals is inviting families and clients to this special event to receive a toy.

Thanksgiving Gift Bags for Pediatric ICU at CDH – we have received several great donations for this effort. Ben was a PICU patient more times than I care to count (9 total in 17 months) … that we wanted to give back and thought this would be a great time of year. Not all kids make it home in time for the holidays, so I thought a special gift bag full of activity books, playdoh, blocks, legos, gift cards for the parents, might be a nice distraction to help them pass the time. I’ll be dropping these off the week of Thanksgiving.

PlayItForward Kids event – I was contacted by the local Play It Forward Kids group offering to support Ben Smiles at their monthly event. They heard about our gift bag initiative and wanted to provide treat bags and homemade get well soon cards. There was a great turn out and I loved seeing all the young kids so involved and there to ‘do good’ and give back to their community. Thank You PlayITForward! You helped put a special personal touch on the PICU bags!

Whew! That’s a lot for one month … still a lot of planning and preparing for the next couple of weeks. Right now, I’m headed to Costco to shop for the RMH dinner! Wish us luck! There will be more events in the near future. Keep checking back and email me if you want to become involved!

Halloween memories

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