It may seem a little strange to you that I, the mother of a former patient of yours decided to reach out to you, but I feel I owe it to my son — and I’ll explain why.
A little over two years ago, my son Gavin was born. Unbeknownst to his father and me, he had a congenital heart disease. You were the pediatric cardiologist who found the defects in his heart, which led to your suspicion of Down syndrome. You were also the “poor soul” that had to inform my husband and I that our son most likely had Down syndrome. I say “poor soul” because I distinctly remember, at some point during the consultation with you, feeling rage — and you were who I directed it at.
“What do you even see!?” I hurtled questions at you in not the nicest tone. I remember even getting snappy with you because you told me he couldn’t be in the room with me because he needed to stay in the nursery to receive 24-hour monitoring. How dare you provide best possible care to my son and take his well being into consideration over my own, postpartum feelings! Ha!
You see, I was never really mad at you, but the words that escaped from your mouth that evening caused me to have a temporary inability to sort through the emotions I felt and how to navigate through them. So for that, I do owe you an apology. At the time, my husband and I were both completely devastated. We had no clue what this meant for our family or even what to do next. You spoke to us with such assurance, compassion, respect, and understanding. Over the last couple of years, I have heard a great number of diagnosis stories that have amplified my gratitude for you and your caring way of speaking with us. Fortunately, Gavin’s heart defects closed up on their own within his first year. But that also means we only had a few followups with you and you missed a great deal of his story. Ironically, the same day you told us his heart was completely healed was the same day we noticed a strange rash on his legs and brought it up to his pediatrician. From there, labs were drawn and Gavin was diagnosed with acute myeloid leukemia. He spent the next six months receiving chemotherapy treatments. I am beyond thankful to be able to write to you that Gavin has been in remission for nearly a
Earlier I said that I owe it to Gavin to write this, and this is why: I feel I did him an injustice that night of his Down syndrome diagnosis. I feel the impression we left upon you was that of devastation and brokenness. And, while we may have been feeling those things in that moment, I want to make clear to all we ever have and ever will come in contact with that devastation and brokenness are in no way the words to describe what Gavin has brought into our lives. I feel it would be an atrocity to allow anyone to believe that. He has brought us joy, purity, love, laughter, bravery, strength, lessons of acceptance, adventure, wonder, opportunities, new connections and friendships, and strengthened bonds. He has improved our lives in immeasurable ways, and I wish I could go back to that night and make known all of these things to myself, but I can’t. So now all I can do is shout from the rooftops how blessed our family is to have Gavin. Please take away from this that we don’t despair but instead bask in the unending happiness that is having Gavin in our family.
Kind regards and well wishes,
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Thinkstock photo by Casanowe