Two Years with an Angel

As I write this (a day before it “goes to press”), I’m recalling the events that transpired exactly two years ago in this moment. I had contractions all day, and due only to the persistence and insistence of my mom and sister, Mitch and I headed down to CHOP (a two hour drive for us) around 11PM. I’ll spare you all the details, but in a matter of less than two hours of arrival to the hospital, we had Regan in our arms. And our lives were forever changed.

The first few months were rough – probably the most difficult experience of my life to date. There were times I struggled as a mom, times Mitch and I struggled in our marriage, and nights of struggling to wake up for the dreaded feeding tube schedule. And then there was open heart surgery – something I never wish to relive, and yet something for which I’m eternally grateful. And then it was as if our angel got a second chance at life. The change was almost immediate, and within a week of open-heart surgery, she was off all heart failure medication and only on Tylenol for pain management. (Think about that for a minute – within seven days of open-heart surgery, she was only on Tylenol for pain!) Surviving heart failure through the winter months and coming home within a week of surgery was just the first time Regan shocked us with her strength and resilience.

Regan is incredibly strong, albeit not always in the traditional sense. In the last year, she’s gone from just learning how to sit independently to aaaaaalmost walking. She’s eating like a champ, she still loves her bottle, she’s up to somewhere pushing FORTY signs, and uses signs to communicate regularly. She says “hi” and “bye bye bye bye”, is trying to say “book” and making a lot of new and fun sounds (all great indicators of verbal communication). For a girl with low muscle tone, she’s making big strides, literally and figuratively! Two years ago today, I was quietly wondering what life with Down syndrome would mean. I had no idea the joy that awaited me on December 5, 2016.

It’s true that when you have a child, your heart grows this new space that can only be filled by the happiness, joy and peace of this brand-new person. When you have a child with special needs, you’re keenly aware that the happiness and peace is a precious gift and not to be taken lightly. It’s this unique kind of joy that only comes in the form of a divine gift, and it’s a gift that we’re granted for but a spec of time in the scheme of eternity. It’s up to us to maximize our time with the angels in our lives.

So to my precious Regan – thank you for sharing another year with us! I’ll be the first to say this year was a little easier than the previous, so thank you for that, too! Today and every day, thank you for the gift of patience, compassion, and laughter like I’ve never known. You surprise me constantly with your strength, persistence, stubbornness, and awesome sense of humor. You’ve developed the perfect courtesy laugh (thank you for that; you’re a great audience), and you’re already so much funnier than you realize. You have a softness to yourself and you’re cautious even with your own movements. You’re the perfect travel companion. You rarely complain and you’re an ever-present reminder for me to maintain my own patience with others. You bring out the best in those around you, even perfect strangers. You give those who meet you a chance to share their hearts. I’ve been the humble recipient of many stories of struggle and love and of those who know the journey of a loved one with special needs, and it’s all because they see your beautiful face and feel compelled to share.

You’re an angel, a gift from above, and one that most days I feel unworthy to receive. I never would’ve guessed how much you’d shape my life, and how much you make me want to be a better person. In a lifetime I’ll never be able to teach you as much as you’ve taught me in your two years, but as your mom it’s my job to try. Happy Birthday, my sweet angel. Cheers to many many more!