Written by: Kelly, Mom of Starlight Kid, Finn
Being the mom of a seriously ill child is something that no one can prepare you for. When I was pregnant with my son Finn, the doctors told me he wouldn’t make it to birth. But today, I look up and see a bright, energetic nine-year-old who continues to put a smile on my face no matter what challenges we are facing.
While Finn was my miracle baby, his life has been a battle – he was born with congenital heart disease and has had 18 procedures, two open heart surgeries, and countless appointments, blood draws, medications, and more to keep his little heart healthy. He is my heart warrior, bravely persevering through his illness one day at a time.
As I reflect in gratitude on Finn’s life, I know that no matter how much time passes, I will never forget sitting in a hospital room and watching him fight for his life. From our family and friends to the nurses, surgeons, and doctors who care for Finn, to organizations like Starlight Children’s Foundation, who always gave him reasons to smile — there are so many who have given their all to help him at all stages of his disease. Because of them, Finn still has a chance to be a kid.
After all, sick kids are still just kids. Regardless of Finn’s disease, he still wants to hang out with his brother, meet new friends at school, play on the playground, and just enjoy all of the joys of childhood. Yet, those things are a gift — having a “normal” childhood isn’t so simple for Finn.
Throughout Finn’s journey, Starlight programs have not only given him opportunities to smile and play but have also been a warm and comforting presence during some tough times.
Starlight Gowns provide better access to Finn’s heart during hospital stays, surgeries, and appointments because they tie down the side with buttons to open each sleeve. This makes procedures more comfortable for Finn and easier for his healthcare team.
Plus, the Starlight Radio Flyer Hero Wagon gave Finn a place to sleep when he didn’t feel comfortable in a hospital bed. This simple red wagon offered a unique way to escape the four walls of his hospital room when he wasn’t able to walk — getting to and from his treatment actually became fun!
While I know that Finn’s challenges are not over, I am filled with joy when I see his smile and am grateful to be his mom.
With 40,000 babies born with CHD each year in the US, Finn and his family are not alone in their experience.
These heart warriors often undergo multiple surgeries throughout their lives, staying in the hospital for extended periods. Uncertainty and fear of staying in the hospital can make a child's stay an emotional and stressful experience. But when you give kids a Starlight program, they feel happier, more at ease, and more resilient to endure the challenges they may face during their hospital stay.