Rosie’s Story: Finding Hope Through The Hardest Days
Shared by Trish, heart mom to Rosie
When I prepared for my little one’s surgery, I thought I had prepared for everything. I saved up months of vacation and personal time off. I almost felt as though I was over preparing, since surgery and recovery were only expected to take up to six weeks. I packed all our bags and made sure to include extras, just in case we had to stay a little longer.
Needless to say, you cannot always prepare for what life hands you. My little one came out of surgery on ECMO, a type of life support that does the work of the heart and lungs. This wasn’t our first open-heart surgery, but it was the first time I saw her open chest, with tubes coming from every direction. The room felt so small, crowded with equipment and people keeping my sweet baby alive. Nothing can prepare you for that.
Nothing could have prepared me for the next year and beyond. More surgeries, washouts, pacemaker placement, infections, codes, and staff assists followed. There were big talks about what could happen and whether or not she would ever be able to come home. I felt myself break on multiple occasions, trying to stay strong for her but feeling as if nothing I could do was enough. The things happening, I couldn’t protect her from. I had to trust those who could, and in a God I knew and know can perform miracles.
It took every ounce of strength I had to stay strong for her, which meant the things at our home hours away weren’t even close to a priority. Months turned into more than a year. Living in the hospital became routine. The healthcare workers became family, and so did the other parents I met along the way.
The bills at home, though, became daunting. I couldn’t work a regular job. Our social worker introduced us to The Brett Boyer Foundation. I had heard of the Foundation around the cardiac unit because they provided meals and supplies for inpatient families. I had looked them up online and read Brett’s story, another heart warrior.
I was hesitant to apply for help because, at the time, I felt like a failure for asking. Our social worker assured me that our situation was exactly what these foundations exist to help with. What helped the most to ease those fears was how open Ellen Boyer, Brett’s momma, was about their own experience.
They were so quick to step in and make sure we would be able to come home to our home. They didn’t judge or make me feel inferior for needing help. In fact, it was quite the opposite. When we finally met Ellen, she greeted us with open arms and such kindness. Even more than that, she met us with understanding, because at one point in time she was us: living in a hospital and fighting for her child.
I saw a woman and a momma with such strength, taking her heart warrior’s legacy and turning it into something that helps so many through the hardest moments of their lives.
We are so grateful for their help and even more so for their friendship and for bringing heart families together. I cannot even begin to express what The Brett Boyer Foundation means to us. Today, we are finally home.
The Brett Boyer Foundation helped us through what we couldn’t and shouldn’t have had to prepare for. They made some of the worst moments bearable, and we couldn’t be more thankful.