Friday, June 27, 2025

Friday, June 27, 2025

Tonight's picture was taken in October of 2008. Mattie was recovering from his first limb salvaging surgery and that day Anna (Mattie's physical therapist), was in his room trying to get Mattie to use his arms. With Mattie, you couldn't just ask him to do exercise. It had to be done in a creative manner. Through play! So Anna brought in a bunch of water guns and Mattie was going to town using his hands to soak Anna. Anna was a great sport and made amazing use out of a 2x4 of a room!

Quote of the day: Persistence and resilience only come from having been given the chance to work through difficult problems. ~ Gever Tulley

I had the opportunity today to talk with someone who knows about Mattie's cancer diagnosis and death, but she did not know specifics. So over the last several days, she has asked me to tell her about this journey. Somehow I just assume people know what managing a cancer diagnosis is like, but in Mattie's case, it wasn't just difficult it was horrific. 

I reflected today on what our life looked like back then. Mattie's cancer treatment kept us in the hospital more than at home, so the hospital was in essence our home for 14 months straight. Mattie's room was the size of a postage stamp (without a closet or private bathroom). Yet all three of us had to live in this space. We traveled with about 7-10 plastic bins that could be rolled into the room and stacked on every admission. These bins were filled with toiletries, plates, utensils, laundry detergent, toys, games, and whatever else we needed while in-patient. The hospital truly provided nothing to sustain us, so we learned early on that we needed to create a mobile unit! Our admission and discharge days were hard on us logistically, because while juggling Mattie (who was in a wheelchair), we also had to move all these bins, and don't get me started on the parking situation at the hospital. When I reflect on these moments, I do not know how we survived. 

As bad at that was, it was also the conditions in which we lived. Mattie's room had a cot and a reclining chair. I slept at night in the chair, mainly because my husband had to work by day. Which was a joke, because people were in and out of Mattie's room 24/7! If we got 2-3 hours of sleep each night, that was a lot. So imagine being terribly sleep deprived for 14 months and having to work by day, or as I did, care for Mattie and manage all life and death decisions. Which I assure you weren't a once a week occurrence, some days they were hourly!

Living in a hospital also exposed us to other traumas. The room walls were paper thin! I distinctly remember the first week Mattie was hospitalized, a child in the next room died in the middle of the night. The cries and hysteria next to us were blood curdling. It was so horrific, I had to put a pillow over my head to drown out the noise, as I couldn't take what I was hearing. Naturally besides intense sadness over a child dying, I couldn't help but think..... this could happen to my child too! 

Hospitals feed the patient, but not the family! So my friend asked me..... how did I eat? This was when I told her about Team Mattie. A community group comprised of incredible friends. These friends made sure we had dinner, tea, snacks, and all sorts of gifts for Mattie EVERY DAY for 14 months. Truly it was so noteworthy that all the staff in the hospital knew about Team Mattie. Out of our existence which was shear torture, Team Mattie was one of our main blessings. Kindness, which I will never forget, because I saw people come together, with a single goal in mind, and there was nothing we could have asked for that the Team did not find a way to provide. It was amazing, in a sea of sadness. 

What we endured together as a married couple is above and beyond most. Yet the one consistent in all of this was we had each other. We absorbed these horrors each day together, and for 14 months we worked tirelessly to try to stabilize Mattie's cancer. However, Mattie's cancer was very aggressive and six weeks off of chemotherapy, his cancer spread throughout his body. We moved from fighting for a cure, to fighting for comfort and dignity. Yet we continued to fight for Mattie, and we were always united. When you have experienced holding your dying child in your arms and hearing his heart monitor flatline, it transforms you as a person. It is at that point you realize that we have NO CONTROL of our lives or our destiny. It is a very frightening reality. 

As I always used to say....... we came to the hospital as THREE and left as TWO. I feel like the Agatha Christie story..... and then there were none, because my life went from THREE, to TWO, to ONE. No one truly knows what we endured, but what I do know is we endured it together, and sharing that very existential and life altering bond can never be erased. It is what defines us individually and as a couple.