Gator Blog

Thirty-six years ago, right after giving birth to my second child, I received the shock of my life. The obstetrician came into my hospital room, sat on my bed and put her hand on my leg. “Your baby has Down syndrome.” Wait. What? That can’t be right. That happens to other people. My husband and I had just become those “other people”.

Neither of us knew much about Down syndrome, but interestingly and unbeknownst to us at the time, God had prepared us both for this journey. My husband had an older adopted brother with a mild intellectual disability. I had grown up around neighbors who had children with different disabilities, including Down syndrome.

Finding Support

We attended our first meeting of the Down Syndrome Partnership of North Texas (DSP of Tarrant County in 1987) when Kristin was just six days old. I expected to be sitting in a circle, crying with other parents, bemoaning this terrible fate that had befallen me. Boy, was I wrong!

We met happy families and their happy, pretty darn cute, kids. Several of the parents we met that night are still our closest friends. This was our first lifeline — people that understood what we were feeling and helped us navigate this new normal. And that’s exactly what it has become for me: normal. I wouldn’t change it.

A New Perspective

We spent the next year learning more about Down syndrome, and living life with a toddler and an infant. We loved our Kristin — she was sweet, funny and ours. We had her in ECI (Early Childhood Intervention) but, otherwise, treated her just like we did her older brother. I was determined, however, that she would be the smartest person with Down syndrome EVER.

Then, when Kristin was just 14 months old, and I was five months pregnant with baby #3, we received the second-greatest shock of our lives. Kristin had leukemia. With that diagnosis, I realized that I didn’t care how quickly Kristin met milestones, I just wanted her to live. During the next two and a half years, we faced chemotherapy, hospitalizations, and all that came with it.

God used that time to grow my faith, remind me that He is in control, and deepen my love for Kristin.

Faith and Family

After that rocky start, we settled into raising our three children, one of whom happened to have Down syndrome. Was it difficult? Sometimes. Raising children can be difficult. Were there challenges because Kristin has Down syndrome? Absolutely. But there were so many more joys and benefits.

We had a tight-knit community of families walking the same road, raising our children together. Those are now lifelong, cherished friendships for both parents and children. In addition, Kristin’s siblings are more empathetic and understanding of other people because they were raised with Kristin.

In 2000, some friends and I started Green Oaks School  to better meet our children’s needs. Now called Green Oaks Education and Support, Inc. with a vibrant adult program, Green Oaks has given my life meaning and purpose. The best part? I have met the most amazing people with intellectual disabilities that I would have missed out on without Kristin.

My faith in Christ became real after having Kristin. That is the greatest blessing of all. Kristin is also a believer in Christ. As a Christian, I know that my life is not about me — it is about glorifying God. Having a child with Down syndrome has given me so many opportunities to do just that.

Advice for New Parents

October is Down Syndrome Awareness month. I always joke, “I’m already aware.” And I am, but in a good way. Looking back on that day in April 1987 when Kristin was born, I never imagined where I would be today. For new parents, I suggest the following:

• Find a support group. 
  The Down Syndrome Partnership of North Texas and the Dallas Down Syndrome Guild are two local groups that can provide resources.
• Learn all you can. 
  You will learn the most from other families, but there are also national resources, including the National Down Syndrome Congress, the National Down Syndrome Society and the Global Down Syndrome Foundation.
• Explore educational choices. 
  One size does not fit all. Green Oaks has been a lifesaver for Kristin and for many other families, providing appropriate education and a peer group.
• Embrace the good moments and let yourself cry during the tough moments. 
  Count the blessings — there are a lot of them!

Resources:
 

Green Oaks Education & Support
https://www.greenoakseducation.org/

Down Syndrome Partnership of North Texas
https://www.dspnt.org/

Down Syndrome Guild of Dallas
https://www.downsyndromedallas.org/

National Down Syndrome Congress
http://www.ndsccenter.org/

National Down Syndrome Society
http://www.ndss.org/

Global Down Syndrome Foundation
https://www.globaldownsyndrome.org/

Adult Down Syndrome Clinic
https://www.advocatehealth.com/health-services/adult-down-syndrome-center

Jean Jewell is the Executive Director of Green Oaks Education and Support, Inc. and one of the co-founders. She has a BA in Social Work and an MBA in Finance. She is the mother of three adult children, one of whom has Down syndrome.

Jean is a past president of the Down Syndrome Partnership of Tarrant County, has organized many fundraisers, and serves on the Community Advisory Committee for Disability Services at My Health My Resources. She and her husband host a small group through their church and teach Sunday school to three and four year olds.