Twenty-one years ago today, I brought my husband home from his overnight hospital stay. He had a colorectal tumor removed. He was 34. He had no history of cancer in his family. He was young. He was healthy. In just over four months, he would become a father. We were blessed though. He had found it early. His primary care doctor was cautious and sent him for a colonoscopy. His GI doctor was sure he would have a complete recovery. He did. He is 21 years cancer free, and we are so grateful. While not the purpose of this blog, here’s your reminder to find out when you need to have a colonoscopy and then have the procedure. The alternative is worse that the procedure. You’re welcome.
Later in the day, I would get a call that would change my life and a lot of other lives, lives that I didn’t even know about, in ways that I couldn’t imagine. Twenty-one years has gone too quickly in some ways and in other ways it seems so long ago. For this would be the day that we would learn we were about to join a new club. Our unborn daughter Rachel would be born with Down syndrome.
Many, many of you have been on our journey since long before February 5, 1999. Many joined us then and many others have joined or have been recruited to the Friends of Rachel movement over these 21 years. We are more grateful than words could ever express for the Friends of Rachel.
We moved to Olathe, Kansas 11 years ago. In 2011, I was selected to be a Faith Writer for the Kansas City Star. In its original form, this is the article I submitted as my sample to become one of the Faith Writers. There are still parts of this that I use in speeches. Through Rachel, I learn over and over again that there is joy in the journey, and for 21 years I’ve had “A Glimpse of God’s Grace.” Enjoy.
Glimpse of God’s Grace
February 5, 1999 was no ordinary day in my life. I brought my 34-year old husband Jonathan home from the hospital. Doctors had successfully removed a tumor the day before. We were both almost giddy as friends and relatives called to check on him. Both of us were relieved that this ordeal should be out of our way by July when our first baby was due.
While entertaining inquiries about Jonathan, my doctor called and left a message for me to call him at home. I had an amniocentesis (prenatal test to screen for certain genetic abnormalities) two weeks earlier. I reasoned that my doctor was calling to tell me that my baby was perfect. Today, I can recite word for word the conversation we had: “Jawanda, this is Dr. M…. How are you?” I replied that I was tired and a bit nervous about his phone call. “Jawanda, I’m afraid I don’t have very good news. There ain’t no way to sugar coat this. Your baby has Down syndrome.”
A few seconds of dead silence and I started to barter with him. I pleaded, “The amnio is wrong and maybe I could have another one?” The amniocentesis is an almost 100% accurate test, but in my heart I wanted to bargain. I just couldn’t believe this was happening to us. After everything we had been through with Jonathan’s cancer, this just couldn’t be happening. My doctor said we needed to discuss our options. I tried to say that we would not consider terminating this pregnancy. My doctor and I had discussed this. I didn’t have the amnio so I could terminate. I had it so I could be prepared if something was wrong. I just never believed there would be.
I knew very little about Down syndrome, and what I did know was not very promising. I was paralyzed by the fear of what she would be unable to do. I could not imagine what she would be like or what my life would be like. All that I imagined was pretty bad. As a person of deep faith, I felt totally and completely separated from THE GOD I had trusted. The next morning as I sat out my patio looking at the overcast sky, I heard these words, “Jawanda, I know you are angry at Me, and scared and unsure, but I am still the God who has the plans to prosper you to give you a hope and a future”. My favorite verse, Jeremiah 29:11. I know it sounds crazy, but it was truly as though God was audibly speaking to me in my backyard.
Three days later, I looked in the mirror and said, “Time to get over this pity party. You need to get busy.” And I made the conscious decision to learn everything I could to help my unborn daughter become a productive and contributing member of society. This was my new call, and I had a huge learning curve. In my paralysis, the faith that had been cultivating for my almost 38 years, sustained me.
Most people have no idea what they were doing on February 5, 1999, yet it was truly the defining moment in my life. Our story changes every day. Rachel is a beautiful, independent little girl full of life and fun. Through Rachel I get a glimpse of God’s grace that most people aren’t privy to on a daily basis. You see, 12 years ago I didn’t know that she would have the sweetest voice I ever heard. I didn’t know what it would be like to have that tiny little hand reach up to hold mine. I didn’t know that she would light up a room with that smile and those sparkling eyes. I didn’t know because my plans are not God’s plans.
I am not now nor will I ever be that person who says, “I can’t imagine my child without Down syndrome. I wouldn’t change him or her if I could.” I couldn’t love her more, but I would give almost anything to take away that extra chromosome. Still, I know that my worldview, my faith view and my people view is richer, fuller and different because of Rachel and this journey we have embraced. While I know that God is touching lives through her, the first life He had to mold was and is my own.
AUTHOR’S NOTES: Yes, I do know there is nothing wrong with Rachel. She is perfectly her just the way she is. This is, however, my raw, open, and honest account of that day.
I also know that based on the many Changing Lives presentations I have given to healthcare professionals, my own doctor didn’t follow the textbook, which didn’t exist then, on delivering a diagnosis. He knew me and handled it perfectly for me at that time. He was very low-key and honest and connected me to another family who had a child with Down syndrome. He was present. That’s important.
Finally, we are all a work in progress and that includes me. I have evolved over the years and will continue to progress (I hope.) Again, this is just from my heart.
And Rachel? Well, she’s in her second year at Missouri State University, living her dream, and living her best life. Like every single person who lives, she has challenges. She is still lighting up rooms with her smile and eyes. She still has the sweetest voice I’ve ever heard. I am eternally grateful that God chose me to be her mom.
