Down syndrome

I’ve taken a lot of pot shots about how I look at having a son with Down syndrome.  Seems as though I see the whole thing through glasses too rosy for comfort for some of my peers.  They don’t realize when your child is born with a disease that sends him circling the drain every time you turn around, an extra chromosome doesn’t seem to matter all that much.  Your focus is on keeping that child alive, Down syndrome and all.   Each day your child wakes up, you give thanks for that day, recognizing the reprieve you have been given with a heart so full of gratitude that the hard stuff about Down syndrome just doesn’t seem to matter so much.

And there is hard stuff.  The potty training.  The therapies needed.  The inability to talk.  The worry.  Oh, my hell, THE WORRY.

Yes, there have been days when I have been angry that Parker has been given so many health issues.  I’ll curse the Pulmonary Hypertension for the rest of my life.   There are days when I look at other parents who have kids with Down syndrome…….healthy kids with Down syndrome.…..and wish our lives could have been like that.

I’d much rather be fighting for IEP goals to be met than for my child’s life to be spared.

A little boy with Down syndrome playing with a dog.

Eight years into this and I’m starting to understand that you can easily waste an entire earthly experience allowing your heart to be consumed by ‘what if’.   It’s energy wasted that could be much better spent in working to provide Parker with the care and experiences he needs in order to live his best life possible.  It’s static interference that prevents me from hearing that still small voice of direction and hope.

Here’s the deal.  Many families, after having a biological child with Down syndrome, choose adopt another child with Down syndrome.  These families often drain their savings and travel to countries halfway across the globe for the opportunity to adopt a child with Down syndrome.

If Down syndrome was so awful, something to be feared, would families go to this extent to bring another child (or children!) with an extra chromosome into their families ?  Did you know that there are many states who actually have waiting lists of families wanting to adopt a child with Down syndrome?  These are questions I wish I could ask every expectant Mama who is considering ending the life of her prenatally diagnosed child.

3.21 is World Down Syndrome Day

I blog to show that life with a medically fragile kid with Down syndrome is a good life.  That even with all of the challenges, Parker’s quality of life is excellent.  The best testimony I can offer up to this is that if I were to go back in time and given the choice of my life with Parker, I would choose yes.

In a heartbeat.

Without a hesitation.

Do you have any questions about life with a child who has Down syndrome?

 

 

 

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Is that a therapy dog with Parker? We own a therapy dog that I trained through Therapy Dogs International. It has been one of the best investments we have made into therapies for our kiddos. Somehow Buster just senses what a person needs. He is gentle and loving when needed, and silly and entertaining when needed. I have used him to work with kids with brain injuries, CP, autism, down syndrome and more. He is a Boxer, a breed that is less allergenic than most but needs no special haircuts or care. Have you thought about getting one for Parker? Or at least contacting the organization and setting up visits? I wish I lived near you, I would be glad to hang out with Buster and Parker.

    • Wendy, I’m not sure if this was a therapy dog or just the owner’s dog. She was sooo gentle. We haven’t ever thought about getting a therapy dog for Parker simply because of his asthma and the fact that it would be another living thing for me to keep alive. :D I’m not sure I could add one more warm body to our family. I wish you lived near us too!

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