When he was born, I knew he was sick.
His heart was broken in my womb, malformed for reasons unknown. The doctors called it Hypoplastic Left Heart Syndrome, just one of many Congenital Heart Defects. They told me it was “bad luck” and they didn’t know what caused it to happen.
At 28, beginning my journey of motherhood with so much uncertainty, I had no idea how I would survive or even if I would. What I did know was that I would never give up on him and I would stay by his side through whatever came. I delivered him— all 8 and a half pounds naturally and without medication to assist me. Somehow, I believed that my stubborn willfulness to survive would transmit to his little body in the process and that he would take on the torch of strength for himself.
The days that followed were filled with pain; physical for him and emotional for me. Although I had yet recovered from giving birth, I stayed by his side, swallowing my own pain to help bear his. Every poke, every procedure, every discomfort I witnessed, I wished somehow I could trade places with him. I would have taken his pain willingly and without reservation if I could have.
For the first time, I understood the powerlessness that comes with watching someone you love suffering without any way to stop it.
I felt guilt for hoping and praying that he would survive knowing that would mean someone else’s child would die.
The night he got his new heart, I waited in the lobby, swallowing back my own fears so I could be strong for him. I was thrilled for his second chance at life and devastated that somewhere, some other mother had said her final goodbyes to her child while she courageously agreed to allow her baby to be an organ donor.
As he healed and grew, I held him down as he endured more and more invasive procedures, looking into his beautiful eyes, filled with tears, hoping he knew that I did it all to give him a chance to really live, to make his pain worthwhile and his donor’s sacrifice meaningful.
For years, I have stood by his side as he’s taken this journey, often holding back my own pain until I was alone and could weep. I carried his scars with me, acutely aware of the pain he has felt. Recently, he’s become aware that he’s different. Other kids don’t have the scars that he does—the jagged line cleaving his breastbone, the star-shaped scars where drainage tubes entered his body, the scars where IV’s were sewn in place and the two indented scars where the pacemaker kept his new heart beating for days after his surgery.
He said to me, “Mom, I wish I wasn’t the only one with a scar” and a seed was planted. What if he didn’t have to be?
Armed with that, I made an appointment with my favorite tattoo parlor and met with my artist. I took only a photo of my son’s scar and left the rest to him. When the day came, I laid back on the tattoo bed, breastbone bared and he went to work. At times, the pain was so intense that my muscles would twitch all the way around my back. I’d breathe and force myself to relax, knowing that what I was feeling was but a brief reflection of the pain my son endured. With nothing more than iron will and fierce love, I sweated my way through an hour of tattooing.
When it was done, I was sore but transformed both inside and out.
I arrived home and allowed my son to take the bandage off of my new scar. His eyes lit up in delight as he realized that he was no longer the only one in our family with a scar. He smiled and said “Twins!” and laughed. We hugged and after a few moments of looking, he went back to being eight years old.
Now, strangers stop me and ask about the scar and when I tell them the story, they often cry. For some reason, I am always surprised at their response; it doesn’t seem so remarkable to me. It seems like the most natural thing to do.
I can’t prevent his pain.
I can’t stop kids from picking on him or the grief he carries for his donor and hero. Her name is Kylie.
Even at his young age, he understands that her death is what gave him life. He often weeps for her, saying “I miss Kylie. She saved my life.”
I can’t always make it all better or kiss away the owie. I can, however, pick up part of the load and help him carry it. Sometimes, when it gets too heavy, I can carry it for him for a while.
I know that he will probably never understand this—and I’m not fully sure I understand it either. All I know is that the most loving thing I could offer to my son was to let him know that he’s not alone, that he will never be alone as long as I’m alive and that I will do anything to help him feel better.
We share that scar and the love it signifies.
The love was always there but now it’s visible. Queen Elizabeth II said that “grief is the price we pay for love” and I know that all too well but now, that grief has been transformed into something more beautiful and tangible. The scar I share with my son, once symbolic of pain, sorrow and devastation now symbolizes overcoming, triumph and the deepest love.
This is a scar that love left…and I wear it proudly.
Author: Lisa Vallejos
Volunteer Editor: Kim Haas / Editor: Catherine Monkman
Photos: Courtesy of author.