I can tell you exactly what I was doing 16 years ago right now. I was headed to pick up Jonathan. His 34-year-old, healthy, no family history of cancer self had a colorectal tumor removed. Bring him home. Get him comfy. Go to office. I was the Volunteer Manager for Youth Villages. It was Soup Sunday Weekend. We had over 200 volunteers to manage. Progressed through my checklist and came home exhausted. I was about 18 weeks pregnant with our first child. It had been quite a week, quite a few weeks. We were flooded with phone calls from caring friends and family. Lots of excitement that Jonathan seemed to be on the road to complete recovery.* Then, came the phone call that forever changed our life. I often say the phone call that changed a lot of lives. The phone call from my doctor who said your unborn daughter has Down syndrome. While “A Glimpse of God’s Grace” tells how our story began, today as I always do on this day I reflect on these 16 years and what is yet to come.
I do not apologize for the devastation I felt in those moments, days and weeks after I learned Rachel had Down syndrome. While I had a positive medical experience, 16 years ago we didn’t have many positive role models and support organizations were not as abundant or effective. I hope and think it is better for people today because they have more role models and more supports. Overall, I think social media has been a great help and families do not feel as isolated or alone as they once did.
I think the myriad of thoughts you have in those moments after the news are odd. Some that make total sense and others that now seem laughable. I remember Jonathan thinking “will people stare at us at McDonald’s?” Of course now my response to people who stare is “We know she’s the most beautiful girl you have ever seen. We think so too.” This past Sunday people were staring. They were staring at a young lady with Down syndrome enjoying a moment at McDonald’s in a Super Bowl commercial seen by millions.
I’ve often told the story that one of my first thoughts was she’ll never be a Razorback cheerleader. Neither was I so why would that even be logical? In my pretend life as a little girl I was though. The almost simultaneous thought was a deep sadness that she would not go to the University of Arkansas. Jonathan and I love the University of Arkansas and it made my heart so sad that she would not have that experience. Today I have the benefit of looking back and thinking “Oh Baby the Places We’ve Been” and “Oh Baby the Places You’ll Go.” I didn’t have that luxury 16 years ago.
Jonathan and I are both avid readers and I remember wondering if she would read? She will read and read and read. In fact Rachel is quite the good little reader. She’s won a number of awards for her reading. She’s impressed a number of people with her reading. Though comprehension is a challenge, she has high scores on her tests over “Of Mice and Men”, “The Odyssey”, and “Romeo and Juliet” and she can converse about the books with her friends.
Now as we get a little closer to adulthood I have to be honest and say that some of those fears that seemed far, far away seem very, very close now. Sometime today I will pull out her baby book and my journal. I will replay the words of my diagnosis a few times, and I will be reminded of all the beauty her life has brought to so many but mostly to mine. In reading the entries, I will physically feel how her life has been celebrated by so many.
And I will hear her sweet little voice whisper, “Mommy, don’t be afraid. Be strong and courageous. God is with you wherever you go.”
And I will whisper to her, “I’m so glad God let me be your mommy.”
Baby Rachel, the world is a better place because you are part of it.
*Jonathan is now 15 years cancer free. He did have to have radiation and chemo but his doctor has declared he is healthier than most 30-year old men. Early detection saves lives and quality of life. Get your screenings people!