By: Tyce & Kelly Jackson

When we were told that Kennedy was being tested for Down syndrome along with being born with a fatal heart defect I pretty much thought my world had came to and end.

I remember our Dr. getting choked up as he was telling me and me responding with " No! I had the test it came back negative!"

I am going to be honest here and admit that if the test had come back positive I would have considered termination. Growing up I knew of someone's brother who had Down syndrome, and my vision of him was that of a vegetated state. That was over 35 years ago and the medical field has come a long way since.

Looking back now, I am so thankful for that negative result. I can't say it has been easy but I can say it has been worth it.

When we were able to return home after 3 weeks of living at The Ronald McDonald House in San Francisco, 4 hours away from our home town that was when my true journey began.

I had two other daughters Kirstin and Kendall ages 13 & 9 to take care of. I also had to coordinate with therapists ,social workers and doctors for Kennedy . It seemed never ending.

During the first 6 months I was embarrassed to take Kennedy out as she had a feeding tube, leg braces, a huge scar on her chest and the obvious signs of Down syndrome.

I did not want anyone asking me what was wrong with her because that would have resulted in me having a complete melt down.

Then one day after her second heart surgery and a clear bill of health, it happened. I came to the realization that I needed to stop feeling sorry for myself and focus on creating a bond with Kennedy. I made it a point that she was going to be raised the same way my other girls were being raised.

At one point in time I met a mother who was in the same support group as myself and watched as her little boy, who was about 4 at the time, play and wrestle with his dad at the park. It was exactly what you would expect to see from any 4 year old boy.

If you are a new or expectant parent of a child with Down syndrome, I would highly suggest reaching out to a support group in your area but never compare your child to any other child.

I look back now and I would do it all over again in heart beat. Do I ever wish that my child was not born with Down syndrome? Sure, who wants their child to struggle through life and have so many health issues but I believe Kennedy was sent to us and that test was negative for a reason and that was to teach me and everyone that she comes in contact with a lesson.

We might not all get the same lesson but she has taught us all a little something. The one thing that I remind myself often, more so when she was younger and spent so much time at the hospital is " If you think you've got it bad somebody else has it worse."

Kennedy is a funny, strong willed, stubborn, loving kid that is all girl. We have worked hard to keep her up with her typical peers and we have never set any limitation on her,encouraging her to give everything a try.

Kennedy will do great things. She is already making her mark in our home town and the people and kids that know her love and accept her 100% and it does not get any better than that.

Photo Credit: Amy Lindsey Photography

Name: Kennedy Leigh Jackson

Age: 10 years old

From: Redding, CA

Favorite Food: Pasta

Favorite Movie: Teen Beach

Favorite person: Sisters: Kendall & Kirstin

Best Friends: Lexi & Avery

Favorite Past time: Dancing & Singing

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  • Kennedy is gorgeous! I’m glad also that the first test was negative. she looks like such a joy! ?

    Penny on

  • Hello Ms Jackson, we have 3month years old daugher Anna with down syndrom and huge heart defect, and we are waiting for seconf heart operation, as she is small only 3,3kg. When I was reading your post I was imagine our similar situation. Kennedy is very nice girl and I believe that God knows what is he doing and he brings to us with our kids a lot of happines. I wish you all the best in the world, but first of all the healt :-) take care xxx

    Eva on

  • Hi Ms Jackson
    I’ve read your story about Kennedy with great interest, since our second son was born with brain damage. This of course has nothing to do with Down syndrome, but the fact is that people in good health simply do not know how difficult it can be for parents having children with a disability. In our case the neurologist at one stage simply said to my wife: ‘Mrs Coetzee, your son will be ineducable. Best will be to put him in a home and leave him there.’ My wife, being the wonderful person she is, persevered and at a school for cerebral palsied, got him past school-leaving grade and into an apprenticeship as a telecom technician with a good working record of 22 years. We have a long-standing friend who has a son with Down syndrome who is now 50 years old but who is still bullied by ignorant people. As a published author of 29 books for middle grade readers in South Africa, I have now written a manuscript in which the protagonist has Down syndrome and is writing his own detective story entitled ’Brandon’s whodunit’, in which his disability is clearly woven into for the sake of those who don’t know. Do you perhaps know of any publisher in the US, who might be interested in publishing such a manuscript amounting to about 35 000 words? In this country they seem hesitant to publish a story of this nature. I wish you all the best for your beautiful daughter, Ms Jackson. I’m sure she will go a long way.

    John Coetzee on

  • I love how u r very honest with this post! I too felt the same way my result was negative.. and its hard on days n i think WHAT THE HELL AM I DOING! But when he smiles my god do i melt!! He is noisy, climbs, runs, and trys to escape any chance he gets! I love him to bits. I had 3 girls already when i had john and then 13 months later i had his little brother.. total choas in my house but i wouldnt change a thing.. it all just makes me a stronger person for them.. and i reap the benifits of kisses & cuddles plus laundry, dishes n a messy house lol… all the best to everyone and their children. Xo

    Lisa on

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