Jenny Hatch has Down syndrome, and at age 29, she battled and prevailed over her parents' efforts to keep her in a group home and to control both her activities and with whom she spent time. A court gave Jenny's friends guardianship over her for one year, at which time she will be free to make her own decisions.

I want to be thrilled for Jenny. But my joy at learning a woman will be able to reclaim some of her own life is tempered by the heartache I feel because this scenario actually played out.

As a parent of a child with intellectual and physical delays, this story scares the hell out of me.


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Read more about Jenny's story

Could Charlie be Jenny?

Happy Charlie!My goal for my son Charlie, who is 3 years old and has Down syndrome, is for him to one day live as independently as possible.

"As possible"… this case makes me wonder what those words really mean. The goal for any individual with disabilities is to live a life as full as possible and as independent as possible.

Who gets to decide? The answer should be the person whose life and livelihood are being discussed. In Jenny's case, a judge had to decide what Jenny's parents couldn't relinquish: control over their daughter. Mind you, Jenny's parents weren't asking her to live with them. In fact, they did not want her to live with them; they wanted her to live in a group home — a place she didn't like.

What ifs

If Charlie is unable to live independently, I cannot imagine telling him to live somewhere other than with his family. If living with us is the best possible scenario for Charlie, I will embrace it — he's my child! My husband and I already discussed building an addition to our home that would give Charlie a private entrance. (Then we go play the lottery.)

Some decisions are clear; others become muddled by emotion, perceptions and fears, and those are all things parents have in abundance.

But I also cannot understand objecting to my child's decisions so long as they were as safe as possible. Ah, those words again — “as possible.” Some decisions are clear; others become muddled by emotion, perceptions and fears, and those are all things parents have in abundance.

A parent's hopes — and fears

As a parent, I fear harm coming to my children. As a parent of a child with Down syndrome, I fear one day being unable to discern the truth behind those words: "as possible." I want the best for my children, for their happiness, their safety and security.

I want their lives to be as full, as happy, as safe and secure… as possible.

So, I battle with not understanding Jenny's parents, not knowing enough about her friends who have seemingly done so much for her. I want to root for what Jenny wants; after all, the court did. After all, that could be my Charlie one day.

But for the grace of God...

But not knowing as much as possible makes me step back. It makes me catch my breath and hope — no, pray — that our family is never at odds with what Charlie wants. I pray that we can always find a way to work through any differences and compromise to the benefit of his happiness.

This whole story scares me. Maybe, as a parent, that's exactly how I'm supposed to feel.

Read more about parenting a child with special needs

3 Best lessons from my 3-year-old with Down syndrome
The truth about my child with Down syndrome
One mother's plea to stop use of the R-word

Photo credit: Justice for Jenny Facebook page

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