Max W

Our sweet Maxwell was born 10/4/09 in Peoria, Il. Four days after birth, we were rushed to a hospital in Chicago, where we received Max’s diagnosis of PA, which results had shown on his newborn screening. After two weeks there, we came home to begin our beautiful yet challenging life. The first three years were riddled with hospital stays, and doctors’ appointments, and therapy sessions – but Max smiled through it all. He was our strength in any moment of despair. He had a gtube placed at eight months old, and continued to rely on that for nutrition throughout his life. He was diagnosed with asthma after multiple hospital visits due to croup/respiratory issues, and starting a daily inhaler ultimately fixed those issues. Aside from the occasional short hospital visit, he was relatively healthy. He was very quiet the first few years of his life, but his eyes said everything for him. He was a “soul-gazer”. His big beautiful brown eyes could capture every bit of your essence, and he wouldn’t break his stare until you had seen his soul as well. Then, the big hospital stay happened- the worst we ever had. In 2015, something happened, that we still can’t explain. He got extremely sick, and we ended up spending seven weeks in the hospital, fighting for his life. He was paralyzed, intubated, placed on an oscillating ventilator, received multiple blood transfusions, special TPN IV, dialysis, picc line, daily xrays, among many other invasive procedures. Even with everything the doctors were doing, we thought he was going to lose his life. While my family and I were by his side constantly, he felt us. His heart would race when he heard us laughing (as hard as it was to laugh in those moments, we found comfort somehow). We made sure to turn Ellen on every single day at 4pm – Ellen was his FAVORITE! Her smile, her laugh, her positive energy- he loved her! And then finally, he started getting better, slowly but surely. The day finally came when he was extubated. I said previously that he didn’t talk much prior to this hospital stay. That changed the second they took out the breathing tube- he literally said “HELLO” over and over right after they took it out! And from that moment on, he was our chatty little buddy! Always talking, always laughing, always something to say. It was incredible to see his progress after that stay. Something clicked, and he decided nothing was going to stop him. “Monster Max” as he was affectionately known, was an enormously vibrant boy who lit up any room with his infectious smile, contagious laugh, and mischievous dimple. He was as social as they come, and his ability to befriend anyone was admirable. His unending happiness, and love of music and dance were a few of the many ways he brought unforgettable joy to others. No words can explain the amount of beauty he brought to this world and how very missed he will forever be. He taught every single person that he met what kindness and patience are. I have no doubt he will live forever in the kindness every one of those people will continue to give to the world. He didn’t judge, he knew no differences, he only knew friends- and a friend he made in everyone.

Maxwell passed away in his sleep on 1/28/22, so peacefully, at his grandparents’ house, feeling warmth and love surrounding him. As sad as we are, we will continue to find joy in every day, as Max had more “joy of life” than anyone. Spread joy wherever you can, and remember to “Be Kind”.