Our Down Syndrome Journey Began in 1999

October is National Down Syndrome Awareness month. I spend a good amount of time year round trying to promote positive public awareness of the abilities of individuals with Down syndrome.  Thirty years ago President Ronald Reagan declared October National Down Syndrome Awareness month. So during this month advocates, family members, friends and organizations will all do their best to educate you about individuals with Down syndrome. I have noticed many on Facebook posting posts about when their journey began. I thought I would re-post our beginning for anyone who might have missed it. The original entry was titled “A Glimpse of God’s Grace.” Throughout the month of October, I will continue to post and re-post about Down syndrome awareness, education and I hope, inspiration. Now “A Glimpse of God’s Grace” where our journey began.

baby rachel pink jaffe

A 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 diagnostic test 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 young lady 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, 15 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.”

com appeal baby rachel 00

I invite you to join me in celebrating the lives of individuals with Down syndrome and the beautiful lives they live. I also hope you’ll check back and read more stories from our amazing journey and learn more about Down syndrome and how you can make a difference through inclusion and acceptance. 

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