An Uncomplicated Life: “If You Love Someone, They’ll Love You Back”

jillian and ryan

Kerry and I came up with a few mantras that guided the approach we took to raising Jillian. They’re universally relevant thoughts that I employ just about every day. The biggest:

1. See Jillian. Don’t look at her. Very often as parents of special-needs kids, perception is our biggest hurdle. Once we clear that one, everything else goes smoother. Do not judge Jillian by what she looks like. See her for who she is. Seeing requires empathy and engagement. It is active. Looking is passive and judgmental.

In my book about Jillian, An Uncomplicated Life, I suggest that seeing someone isn’t merely a necessity. It’s a basic civil right, Imagine the human potential we’ve wasted in this country over the centuries, because we looked at people rather than saw them.

2. Expect. Don’t accept. Know the law when it comes to your child’s education rights. Expect it to be followed. Accept nothing less. So often, we don’t get what we expect or want. We get what we’re willing to put up with. Expecting and not accepting is the difference between battling and settling.

3. All you can do is all you can do. Live in the moment. Raising a special-needs child requires a lack of memory and a tight-fist focus. Dwelling over yesterday is a waste of time. Pondering tomorrow can be overwhelming. Kerry and I always asked ourselves, “What can we do today, this moment, to make Jillian’s life better?”

As I wrote in the previous post, living in the moment also means slowing your pace, which is a wonderful thing.

4. We’re only as good as the way we treat each other. Jillian taught us this, both by how she treats people, and how people treat her. Those who have taken the time to See her have been rewarded with a forever friend who owns no guile or agendas, and passes no judgment. Jillian makes you feel good for knowing her. She inspires our better selves.

In line with that, I’m going to try to offer phrases here every day, taken from the book, that hopefully will resonate with you.

Today’s phrase is a quote from Jillian, when she was about 15. A little background:

Jillian had been sick with a chest cold all morning. Since I work mostly at home, I was there with her, rubbing her back and fetching her Kleenex as she expelled mucous into a waste basket. By mid-afternoon, Jillian felt well enough to get out for a quick workout at our local YMCA. She thanked me for nursing her all morning.

“Of course, Jills,” I said.

Then, she said this:

“If you love someone, they’ll love you back.”

I’m not sure our existence gets any better or more easily understood than that.

Check back here often, for more mini-inspirations. We’re all very lucky to have kids who inspire.

Thanks, Paul

You can also find a lot of these on the Twitter feed @jilliansbook.

An Uncomplicated Life: Down syndrome and the miracle of slowing down

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The New York Times recently ran a story about the increase in the number of both parents working full-time (almost 50 percent) and how it stresses their ability to enjoy time with their kids.

Very understandable. We who have a child with a disability — and perhaps one or more kids without a disability — more than realize that strain. What’s more, we worry that we’re short-changing our “typical” kids.

Here’s a different way of looking at it. Here’s one blessing of having a special needs child:

We slow down.

We have no choice.

We wanted Jillian to do everything her older brother Kelly had done, and she did. It just took longer, whether it was tying her shoes or spelling a word or learning to ride a two-wheeler. The extra time needed forced Kerry and I to take it easy. It was fabulous.

John Lennon said, “Life is what happens when we’re busy making other plans.” The suburban bargain can be draining. We continually seek the next Next. We don’t linger. I cannot, for example, tell you what it was like when Kelly first rode his two-wheeler. He learned in an afternoon. It took Jillian two months. When I finally let go of the back of the bicycle seat, and watched her pedal her way down the lane unaided, it stuck in my heart forever.

Kelly’s first Homecoming dance. . . what did he wear? Who was his date? Was he nervous, elated, eager? No idea.

Jillian’s first? You mean after Kerry took her dress shopping (they tried on five) and after Kerry and Jillian got their nails done, and after I watched Kerry do Jillian’s makeup?

You mean when I saw Jillian at the top of the stairs, her date (and future husband) waiting in the kitchen? When I saw him side the corsage of a cymbidium orchid onto her wrist? When I saw them walk out the door to the car, arm in arm, grins wider than the ocean?

Nah. I don’t remember that at all.

It took Jillian an hour to spell the word STORE. We went through various permutations — s-t-o-e-r, s-t-o-a-r etc — until she got it. When Kelly spelled store we went on to the next word. When Jillian spelled store I got up and started dancing around the room. “S-T-O-R-E, store, store, store!!”

We reach a certain age, look back and wonder why we didn’t linger. Kerry and I are empty-nesters now. Time passes more quickly, the older we get. But we still remember to linger, whether it’s over a fine meal or an evening with family and friends or a heart-breakingly lovely sunset. Jillian taught us that. We’re grateful.

The Times story:

http://www.nytimes.com/2015/11/05/upshot/stressed-tired-rushed-a-portraiit-of-the-modern-family.html?smid=nytcore-iphone-share&smprod=nytcore-iphone

That tension is affecting American family life, Pew found. Fifty-six percent of all working parents say the balancing act is difficult, and those who do are more likely to say that parenting is tiring and stressful, and less likely to find it always enjoyable and rewarding. For example, half of those who said the work-family balance was not difficult said parenting was enjoyable all the time, compared with 36 percent of those who said balance was difficult.

An Uncomplicated Life: Number 47

The Mighty.com posed to me this question: What is one truth/secret you’d like to share about your experiences involving people with disabilities?

That was a no-brainer.

The best person I’ve ever known lived under my roof for 23 years, before she moved to her own place more than two years ago. The truth about Jillian Daugherty? She’s fantastically, inspirationally good. The Mighty story will post soon; I’ll link it here. For now, here’s an excerpt from An Uncomplicated Life, from a chapter titled “Number 47” that addresses the subject.

“Jillian owned three copies of Chromosome 21, instead of the usual two. Trisomy 21, it’s called, the most common form of Down syndrome. Human cells contain 23 pairs of chromosomes, 46 in all. This was Number 47.

“If you believe there are no coincidences, you have to at least entertain the notion that Number 47 has a purpose beyond sadness. If you are anything other than terminally pessimistic, you believe the extra chromosome has some beneficial reason for being,

“Number 47 contains a lot that makes us good. It has to. Somewhere in that bonus wiring is a connection to compassion and kindness, a plan for how to be better. Number 47 puts out the fires of ego and envy, vanity and guile. It filters anger. Thanks to 47, Jillian lives a life of joy, giving and receiving in equal time. Nothing defines her more. Number 47 isn’t a governor on her aspirations. It’s an extra storage tank for all her good stuff.

“Jillian knows what matters, and what to do with it. The smallest of joys: A hug offered, a smile received. Jillian’s knowing isn’t learned. It’s not inherent. It’s innate. It’s Number 47 on her shoulder, riding shotgun.”