Tuesday, September 26, 2017

Tuesday, September 26, 2017 -- Mattie died 419 weeks ago today. 

Tonight's picture was taken in June of 2009. Mattie was home from his third massive surgery, a sternotomy. He wanted to take home his hospital bin, which actually came in handy as Mattie LOVED to play with water. Taking a bath wasn't something Mattie wanted to do anymore, once he had his broviac catheter inserted into his chest. We weren't going to argue with Mattie about bath time, since I think this made him feel very vulnerable being in water after his cancer diagnosis. Bath time was when Mattie used to have water fun. So in lieu of that, we migrated to a basin of water for him to play with. As you can see, Mattie created his own Sponge Bob Square Pants character. The main reason Mattie loved Sponge Bob was because he knew I disliked him greatly. In any case, what you can't see from this photo was that Sponge Bob took a leap into the basin and Mattie was seeing how well he could swim. 



Quote of the day: Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left. ~ Hubert Humphrey


This afternoon, I returned to Mattie's hospital to push our Mattie Miracle snack and item cart around the pediatric units. Of course no one realizes what Tuesdays mean to me, and certainly the impact of going to the Hospital on a Tuesday. The day that Mattie died, a Tuesday! I never look at Tuesdays the same way anymore. 

I go to the Hospital monthly to push the Cart. I feel it is important to do this direct service work to see the cart in operation and to personally interact with families. Typically families are too tired, overwhelmed, and focused on the care of their child to have a meaningful conversation about the cart with me. I totally understand that, and go into my visits with no expectations. The only expectation is to provide a service to others. 

Today was a very different visit. In one of the units, a couple came outside of their child's room holding their newborn who was hospitalized. I am telling you this baby was ONLY days old. The little one was in her father's arms and you could tell how proud and scared he was! In any case, the father outright asked me who provides this cart and what is the story behind the cart! NO other parent has ever asked this, as parents are typically grateful and focused on the the free items coming their way, to help them make it through the day. This dad literally started by asking me about the physical nature of the cart, why it was orange and then we moved into very meaningful questions. So I told him about Mattie, about the Foundation, and why I felt it was important to provide sweet treats to families in the hospital. 

So why? Because when Mattie was in the hospital, our care community brought me treats daily! Which is when my chocolate addiction started! In addition to treats they brought us snacks and dinners daily for over a year. Given that I found this SO helpful and SO generous, Mattie Miracle wanted to continue the tradition our care community started but on a grander scale. As I was telling this dad and mom this story today, I could see they were visibly moved, so much so, that they wanted a brochure on the Foundation and told me they would tell Mattie's story to other people. Needless to say, I think my story made them appreciate the baby in their arms even more than prior to our chance meeting. They seemed to express awe over having lost a child to cancer, and here I was in the same hospital that Mattie died in, and I am funding a snack cart and pushing it myself to help others. Rarely do I get such feedback about our work, and of course I don't do it for this feedback. But at the end of the day, Mattie Miracle wants to be supporting items and services that positively impact the lives of families caring for children who are hospitalized.