You know how you have moments in your life that end a chapter and start a new one? Those moments where time stands still briefly and you know your life will never, ever be the same? We had two such moments-in-time — an ending and a beginning and then another ending and another new beginning — way back in 2009.
The first was Ian’s birth and finding out just moments after he took his first breath that he had Down syndrome. Oh the fear of what life would be like. I couldn’t process the enormity of what I had just been told. My baby was born a little after 1am on Easter Sunday but I couldn’t have known that that day would be a rebirth for all of us. And then it seemed that Ian’s birth day wasn’t done with me yet.
I remember sitting in a chair at a table in the parent room, listening almost as if I wasn’t really there, as they told us our brand new baby had all these things wrong with his heart and would need open heart surgery soon. I glanced at the clock on the wall. A few minutes past 9pm. I remember muttering to Jason, “Oh, how your life changes in 24 hours.” And then thinking, with remarkable clarity, that I couldn’t move. If the hospital was on fire, I knew without a doubt that I could not move. I felt so many emotions that I couldn’t feel anything at all. An end of a chapter and beginning of a new one. The end of life as we knew it. A better one was to come, but we couldn’t have known it then.
And then Ian came home and Joey just saw his brother. He showed us the ultimate gift of unconditional love. And still does. Over those first few weeks and months, we settled into life with two boys that felt pretty much like what I thought life with two boys would feel like. And as our new baby began to unfold himself to us, I realized that I didn’t have a baby with Down syndrome. I had Ian. A perfect gift.
The time for open heart surgery came 11 years ago today. And I couldn’t let him go. This baby who saved me when I didn’t even realize I needed to be saved. The end of a short chapter, the blessed simplicity of life with a newborn.
The roller coaster began. He endured a pulmonary hypertensive crisis as soon as they started his surgery; they couldn’t even close his chest that first day; he needed a pacemaker for a few days to make his heart beat properly; he couldn’t come off the ventilator for nearly a week; he blew all of his IV lines and they had to try to get an IV into his head after shaving it; he had another pulmonary hypertensive crisis and needed his body paralyzed in order for it to pass; when he came off the ventilator, each eye was going in a different direction swirling around, which terrified me; they had to restrain him on the bed so he didn’t take out his IV lines; when he finally came off the vent he was awake for 26 out of 30 hours metabolizing the sedation; he needed methadone to ease his narcotics withdrawal; he had to learn how to eat all over again; he was on the ventilator for 6 days and in the ICU for 10 days. On the day of discharge, we burst onto Greene Street in the intense heat and humidity of an August day in Baltimore and thought, “NOW begins the rest of our life!” The beginning of a beautiful new chapter.
And now? Our life is better with Ian. Our life is better BECAUSE of Ian. His light, his joy, his love… they radiate from him and the rest of us are blessed to bask in it. I don’t have the life I planned but I have the life I want. On this day, 11 years ago, the amazing staff at the University of Maryland saved our Ian’s life. The words “thank you” never seem adequate but I know, without a doubt, that ALL the joy of these past 11 years is thanks to them. They are the reason his light shines!