I know you. I know you far too well. I see you, your weary eyes, your determination, the one that they inspired. And I know them. Though each is unique and special and irreplaceable, I know these kids. The ones break you open and steal your love without ever needing words, the ones with special hearts, whose fighting spirits are so bright, they could light up the night sky.
The world of congenital heart disease is a hard one to brave, but our children make every second worth it.
We didn’t choose this life. We didn’t want it, but we wanted them, no matter the form in which they came. We wanted them, no matter how rare their anatomy. We wanted them, no matter what original condition their heart or his lungs were in. We just wanted them. And so, when diagnoses were confirmed, we dove in headfirst, giving them all our hearts, doing whatever we needed to do to love them fully. It didn’t even matter if theirs were whole.
We dove in to a world few know exist: echocardiograms, endless medications, and phone calls with insurance companies. Surgeries, open chests, and monitors. Nurses, doctors, and techs. Multi-organ lessons, blood tests, and diagrams drawn on a whiteboard. We knew our children would teach us. We just didn’t know it would look like this.
But they teach us. Oh, how these children born with broken, little hearts can teach us— through the good moments and the bad.
I know you just want to make all the pain go away. I know you just want them to be whole, complete, and forever in your arms. I won’t lie to you. This road may be hard.
There may be days when you just wish that they could catch a break, when it’s just one thing after another happening in their little body, and you want to rip your hair out with exhaustion, frustration, and the inability to kiss these boo-boos away.
There may be days when you find a quiet place to just let it all out and cry.
There may be days when it’s all unfair, and you blame yourself, and you question where you went wrong, what you should or shouldn’t have done to prevent this from happening to your child.
There may be days when you curse and rail at the very thought of congenital heart disease and question the greater questions, like the problem of pain, of evil, of disease rampaging at innocent lives.
There may be days when risks and odds are the methods in which you think; days where every breath is spent inhaling and exhaling prayers. Please. Help. Save my baby.
There may be days when you sit powerlessly in waiting rooms, bedside on rubbery hospital furniture, standing helplessly and watching teams of medical personnel swarm around little ones, alarms blaring.
There may be days in which the future is uncertain.
The world of congenital heart disease is a hard one to brave, but our children make every second worth it.
I swear to you that there will be good. You’ll witness miracles. You’ll make unbreakable bonds. You’ll see what matters and watch as the all the rest fades away. You’ll love with abandon, handing over your heart to one whose place you’d willingly take.
I swear to you that they will change your life forever. These children with broken hearts will wreck you in the most beautiful way. You’ll never learn to surrender more when you hand a child into a surgeon’s arms. You’ll never be more terrified than when you love a child you could lose. You’ll never be more grateful for every moment when you face the uncertainty of time.
I swear to you that you will never regret a single second of loving them, no matter if you hold them for hours, days, months, or years. You’ll never love more fully when you love with awareness of life and death, whether you’re loving them in your arms or whether you kiss them goodbye and love them from worlds apart.
After all, it was my son, a boy born with a broken heart who taught me what it meant to love. Loving him in life and loving him now in death.
The world of congenital heart disease is a hard one to brave, but our children make every second worth it.
