The Difference in a Year

One year ago today, my life was flipped upside-down, inside-out. The weather was almost exactly as it is today – partly cloudy, the warmth of the sun and summer air stretching through our quiet neighborhood as I walked Walter with a growing baby bump (though no baby bump today!). I was on cloud 9, thinking how happy I was that I started working with Mitch, grateful not to have a long commute and able to rest as I needed when the woes of the first trimester struck. I answered my phone on this walk to hear my doctor tell me that the pre-natal bloodwork I had done came back with a high (91%) likelihood of Down syndrome.

When you hear that you will have a child with special needs, there are a thousand thoughts that cross your mind. Some of those thoughts I’m apprehensive to admit in black and white, but in an effort to maintain vulnerable honesty, I’ll share them with you here.

I thought I would have a huge burden for the rest of my life. I thought I’d forever have a child living at home and how awful that might be. I thought I will never have alone time with my husband again. I thought I’ll never be able to travel without children again. I thought I’d have a child that others won’t know how to love. I thought I’d have a child incapable of learning effectively. I thought I’d have a child with a multitude of disabilities, learning, emotional and physical. I felt sorry for myself. I wondered what it would be like if I had gotten pregnant at a different time. I wondered if we had waited a little longer, maybe this wouldn’t have happened. I thought if maybe I hadn’t been drinking in Italy this wouldn’t have happened. I wondered if something I did altered the course of events and would now forever affect my child’s life. I wanted to wish Down syndrome away, to take this burden off my child and me. I thought my child will never have a normal life, and I thought I would never have a normal life. I thought about how this child would affect my other children. I wondered if all my children would have Down syndrome. When they told me about the heart condition, I wondered if my child would survive. When they told me about the surgery, I wondered if I would survive. I wondered if my child would ever have friends. I wondered if my child would ever have significant life experiences, like going to sleepovers, school dances, graduating high school, college, or marriage. I wondered if I was capable and worthy of this child. I wondered if I was strong enough to care for a Down syndrome baby, and to have the same unconditional love that I would for any other child. I prayed for grace and strength and courage and so many other character traits that I felt I was completely lacking as I crumbled under the grief I felt.

I cried countless tears that day and in the days that followed, and I still cry tears today. They’re different now, though. I cry for the woman I was that day. I mourn her loss, in a way. And I celebrate her victory. I said goodbye to a life I thought I’d have that day, and today I embrace with joy the one I have. I’m sorry to Regan for the fear I had when the abyss of the unknown seemed to stretch out in front of me like a tunnel with no light. The fear I felt was debilitating, and I wondered when I would feel happy again. But as the world kept turning, so did the days, and my happiness returned through the kindness of our family and friends and their immense love and support through some of the hardest days of my life.

Here’s what I know now – my child has brought me more joy than I could’ve ever imagined. She hasn’t just brought me joy, she has spread her love and joy coast to coast across this country. She has brought me more blessings than I could capture in a blog post, and I don’t suppose they’re about to end any time soon. She’s completely capable of learning and has exceeded our expectations beyond measure. She’s survived and thrived after open heart surgery and her impact on those around her is profound. Our lives are as “normal” as you could imagine, whatever your definition of normal might be. I can’t say for sure whether our other kids will have Down syndrome, but if that’s our path, then we will continue along this journey with open hearts. Things are a lot less scary for us, and if there was a way for me to thank all the special needs parents that came before us, I would give them a big hug and endless thank yous. They’ve truly paved the way for us and for Regan’s future.

For my precious Regan – I love you to the ends of the earth. I promise to be your biggest cheerleader, your forever advocate and a fighter when you need me. More importantly, I promise to teach you to be your own biggest advocate. I promise to face things with you, to chase your dreams by your side and be the wind at your back when you need a push. Thank you for teaching me to be unafraid, to take things as they come, and know that the grace of God is a real, tangible thing. Thank you for giving me a whole new definition of love.

Love and hugs and kisses to all my readers! Have a wonderful, happy 4^th of July.