Nineteen years ago today our world changed forever for this is the day that we learned our unborn daughter had Down syndrome. There is an old song based on the words of Psalmist that says “Hold on my child, joy comes in the morning. Weeping only lasts for a time.” Very true as evidenced in the story below.
In 2011 I was honored to be chosen as one of 13 Faith Writers for the Kansas City Star. This was the article I submitted in the original form and is based on the speech I have given at least 500 times “No Ordinary Day.”
Glimpse of God’s Glory
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 went 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, 13 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.
Baby Rachel, young woman Rachel – thank you for being the #bestteacherever. You are God’s Masterpiece and my greatest gift.
I saw alot of me in your story. I was 24 no history on good health. My husband also 24. So testing wasn’t even on the radar. I carried small and I remember right before I missed my cycle, my job had a blood drive. I gave blood. Around 7 months my doctor had a portable sonogram machine and this was his second time using it on me… he looked puzzled…kinda hesitated…then he stepped out so in can dress and meet him in his office. ” Are you feeling Ok? You’re not smoking or…”? I wasn’t so now I’m asking him if he see something. He said ” He’s a little small, but things will be ok!” December 23, 1988 my Son Craig was born. He has beautiful. Look just like his Father Craig Sr. Eddie was born with a hole in his heart and jaundice. So since he stayed in the hospital a week, Eddie’s chromosomes were tested. We had to wait SIX MONTHS FOR RESULTS. So we brought Craig Jr. whom the family called Eddie
That six months I went to library, my pediatrician provided information and I joined local groups and parent groups in NYC five boroughs… But 35 years ago there was little hope for parents. Only observations and opinions. I fought genetic counselor, agency intake personnel, social workers, and therapists… everyone asking me to reevaluate my SHORT TERM goals because they were probably unattainable. “I will not allow anyone to put limits on my Son… he WILL BE A PRODUCTIVE MEMBER OF SOCIETY…” … and 35 years later Craig Jr. has 2 jobs. He reads at a 4th grade level and does first grade math… He is my first born. My soul, my center, my rock. And he has Down Syndrome… but Down Syndrome does NOT have Him! Hallelujah! He has completed Goodwill Job Training. He has completed 2 internships
Thank you. For your beauty and for Rachel’s too. I love and cherish your whole family. I lift you up constantly 💐❤💐I hope to see you soon. Thank you again for this 😥❤🙏