This is Part 2 of Summer and Mac’s story. Read Part 1 here.
“Naively, I dried my hair and got dressed, not knowing when I’d be home next, because I figured we’d be there a few nights. Chad, never called me and I didn’t think much of it. But the minute I exited the elevator and stepped onto 4 West, I saw why. Mac had already been discharged, but had to wrap up dialysis, something he’d be on three times a week for an unforeseen amount of time. Dialysis machines are set up for adult bodies and then adjusted to work for children. Every time Mac was on dialysis, his body went into cardiac arrest. We would be sitting there talking or watching tv and then you’d hear the monitors go crazy. We’d be thrown out of the room while they tried to resuscitate Mac. The first time it happened, I remember standing in the hall, watching through the glass just screaming for help. Then the day would resume as though it didn’t happen, but leave us a little more scarred than the last. I’d then drive the hour and a half drive I did countless times over the course of the year.
While Mac was getting set up for dialysis, he asked my mom to lay in bed with him and hold his hand. My mom, who was exhausted from the past few weeks, crawled in bed next to him. Knowing there was going to be so much activity and people in and out of our house for the holidays, and to see Mac, they quietly held hands and peacefully fell asleep together. I can’t speak for my mom, but from the stories I’ve heard, she awoke to all the beeping of a Code Red. Mac was in full cardiac. They were trying to save him. My mom ended up running out the door, out of the hospital and right across the street looking for help from the head of dialysis, and then back to the hospital. In that moment, Mac was having an embolism which cut of his oxygen supply.
When I walked into the hospital, nothing felt the same. The entire floor felt eerie. Not knowing any of this had happened, I walked off that elevator giving my normal smile and greeting to the welcome desk, but no one smiled back. As I turned the corner to his room, his dialysis nurse dropped at my feet sobbing and said, ‘Summer, my head knows I did the right thing, but my heart doesn’t.’ I told her this was Mac and all would be fine. From what I hear, she took a leave of absence that day, as these are not just patients to the nurses, they become family.
As I walked into his hospital room, I knew instantly life was about to change in a way I wasn’t prepared for. My mom was by the window, holding Mac’s hand. Mac’s head was turned toward her and I couldn’t see his face. Chad sat by Mac’s other leg with his head down. Mac was making a noise unlike anything I’ve ever heard, but a noise I will never forget. I hung my coat (yes, still in denial) and asked if he was joking with that noise. His doctor, was there and said, ‘No, but Mac’s been waiting for you.’ I walked over and saw his eyes closed, his face not of my brother, but of a body, a shell of who he once was. My mom gave me his hand.
The boy who I so loved, my brother — full of life, laughter, defiance, and practical jokes — was taking his last breaths. I rubbed his arm and let him know I was there. Then I asked his doctors how long this could go on. As hard as I knew it was going to be to lose him, watching him like that was even harder. They said he was comfortable, but they were pretty sure he was just waiting for me to say goodbye. Moments later, he went to heaven, exactly the time we thought he’d be in the car listening to Shaggy and heading home for the holidays. Mac ended up spending just over a year in the hospital. Halloween Day 2001 to the eve of Thanksgiving 2002. I wish my story had a happy ending and I could tell you my brother lived, but he is in heaven. He fought a battle they said was impossible, but he beat it. In the end, he went to heaven due to a medical error. It is not something you could ever prepare for.
That very moment, I knew I didn’t endure this for not. I knew one day I would go back and make a difference within those hospital walls. It took me a bit longer than I expected, but I kept my word, and 12 years later created Brave Gowns.
Around Halloween 2014, I saw a picture of my friend’s daughter going through treatment. She was posing in her gown with a caption that read, ‘Maya trying to rock her blah hospital gown before her spinal tap!’ That’s when the idea of Brave Gowns hit me. Hospital gowns make you feel like just a number. They do not reflect these children’s personalities; they do not tap into the pure magic of a child’s spirit. It triggered one of my favorite memories from our journey, the previous year, once again on Halloween.
Mac was in the PICU and couldn’t trick-or-treat. He was laying there in a dingy, pale yellow hospital gown that looked like it had been washed hundreds of times. There was nothing festive about it. It did not represent his personality or the holiday he so loved! So, I painted his face like a zombie. We were laughing so hard at that moment. Life felt a bit ‘normal’ during this horrible time, but then we got in so much trouble! His skin practically peeled off as we were trying to wipe off the makeup. All I could see behind the facecloth was his smile. Mac looked so happy, just as a 10-year-old boy should.
I told Chad my idea and he asked, ‘You mean like superheroes and characters?’ That comment sparked a fury in me and there was no turning back. I knew we could do better, and we set out to do so, but what I didn’t know was that the hospital gowns hadn’t been updated for over 150 years, and nurses and doctors everywhere wanted a change. I always say I’m just the vessel. Brave Gowns is nothing short of God’s work. We have now put over 500,000 Brave Gowns on children in 480 hospitals throughout six countries. I have passed up buyout offers from multiple companies from anywhere between $2.5 million to $30 million dollars.
Most think I’m crazy and I probably am. Every time I receive a story from a family or see a child in a Brave Gown, it brings me right back to being in that hospital 20 years ago. I can smell the smells, relive the fear, hear the machines beeping, and feel the hope every person brings with them inside those walls. It’s like nothing has changed, yet everything has changed. I hope Mac sees this. I hope the families, people, and organizations supporting Brave Gowns know how much love is wrapped into every gown we send.
When Mac took his final breath, his doctor leaned over to me and quietly said in his thick German accent, ‘Summer, Mac will still be with you. He will be all around you. We are all energy. He just changed form. His body was just the vehicle his soul was driving while he was here. His body grew tired, but the soul never will. I promise you will feel him. I see it every day.’ I didn’t grasp it in that moment, but I can’t make up what I’ve seen, felt, and experienced. Signs of him through goosebumps, pennies from heaven, the phone ringing from an unknown caller at moments I can feel him, and just things I can’t rationally explain are everywhere.
I hope what I believe is true. If it isn’t, then these are the things that keep me going and wanting to do more for the families who walk into the hospital not knowing how much their life is about change, and I’m okay with that. Brave Gowns isn’t just about me. It’s something so much bigger. God gave me this chance to be a vessel of hope. People often ask how I can personally stay in contact with so many families at once and know each story, each name, and look at every picture. The answer is easy. We were one of those families, and although it’s a club I don’t wish upon anyone, once you’re in it, there’s no greater place to be. We are all on the same team here, with one goal. To help families, to save children, and to remind ourselves each and every day truly is a gift.”
This story was submitted to Love What Matters by Summer Germann of Venice, California. You can support Brave Gowns on Instagram and their website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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