Tag: special-needs

Here’s to Holland

In Emily Perl Kingsley’s essay “Welcome to Holland,” she compares raising a child with special needs to planning a trip to Italy—only to land in Holland instead. I don’t think any comparison has ever hit me so hard or resonated so deeply in my life.

Today I attended Keelie’s final IEP meeting. This May she will graduate from her post-secondary program, having completed all the credits required to earn her high school diploma. And I can’t keep my mind from wandering back to the day, twenty years ago, when I took her for an evaluation at Early Intervention.

“Your daughter has moderate to severe global delays.” Not just the words, but the look on the evaluator’s face, is burned into my mind.

“Will she catch up?” I asked, gripping Hope like a life preserver.

“Miracles can happen,” was the response.

Miracles can happen—but they often don’t look the way you imagine them.

The miracle I’ve experienced in these twenty-one years with Keelie is a complete shift in perspective.

Emily Perl Kingsley wrote:

“The important thing is that they haven’t taken you to a horrible, disgusting, filthy place… It’s just a different place. It’s slower-paced than Italy, less flashy than Italy… and you begin to notice that Holland has windmills, and Holland has tulips… But everyone you know is busy coming and going from Italy—and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’ And the pain of that will never, ever, ever, ever go away… But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”

Today I needed that reminder. IEP meeting days have always been hard for me. They call attention to what is, and to what could have been.

But what could have been isn’t what matters. What is, and how far we’ve come, is what counts. And, boy, have we come far.

Keelie has taught me so much. She has taught me about friendship, flowers, rainbows, and magic. And I can’t help but think that one day, on the other side of the veil, she’ll hold my hand and show me just how much I’ve grown in my years as her mother. And then I’ll fully understand all the beautiful things about life in Holland.

Twenty years ago, all I could see was the flight path to Italy disappearing behind me. Today, I sat in that meeting and realized I’ve spent two decades learning the language of a country I never planned to visit. Keelie didn’t just teach me to notice the windmills and the tulips. She taught me that the trip I actually took was never the consolation prize. It was the whole point. So today, instead of grieving what could have been, I’m just going to sit here and be proud of how far we’ve come—and grateful for every single mile of it.

The Beautiful Weight of a Shorter Life

A few summers ago, while travel was on hold as I waited for a heart transplant, my family had to get creative about how we spent our time. With nowhere to go and plenty of hours to fill, we found ourselves wandering through the city cemetery.

Morbid? Maybe.

But for us, it felt more like a small, unintentional anthropology project.

We began noticing patterns in the dates carved into the headstones. Our completely unscientific research revealed something interesting: if a person managed to survive childhood, the next major hurdle seemed to be middle age.

There were a surprising number of headstones marking lives that ended around fifty.

And by anyone’s standards, fifty is not old.

That observation has stayed with me.

Recently, my autistic daughter Keelie learned that her dear friend Annie is facing a health challenge. In a moment of anxious honesty she said, “I’m afraid Annie won’t live to be eighty years old.”

Annie is twenty-five.

And the truth is, reaching twenty-five is something Annie’s family already considers a miracle, given the circumstances of her extremely premature birth.

She isn’t the only young person I know living with what might be called a “limited-time offer” here on earth. Sadly, there are a few others whose lives carry that same uncertainty.

And yet, if you know them, you know something remarkable.

Their lives are beautiful. Meaningful. Inspiring.

Each one seems to have been gifted with talents, interests, and joys that exist for no other obvious reason than to bring them happiness—or perhaps to quietly teach the rest of us something about how life is meant to be lived.

If you know, you know.

No one who knows these young people would ever say their lives lack purpose. If anything, their lives shine with it.

And because of that, we celebrate differently. Each year matters more. Each month. Each ordinary day.

So what would you do if you knew your life might be shorter than expected?

I’ll tell you one thing—it has a funny way of making sixty-year-olds look awfully young.

The other night Aaron and I found ourselves talking about death and dying. I’ll admit, it’s not exactly the most romantic bedtime conversation. But the question came up: why are people so afraid of death?

Aging, at least from what we can observe, doesn’t always look particularly appealing. If we’re honest, the process leaves quite a bit to be desired. So if aging isn’t exactly the dream scenario, why does the thought of death frighten us so much?

And suddenly something occurred to me—something I had realized before but never quite put into words.

I had faced death once already.

I had looked it straight in the eye.

And what I felt wasn’t fear.

It was sorrow.

In the months leading up to my transplant, there were moments when the reality of my situation would surface with startling clarity. The heart condition that made my transplant necessary—ARVC, also known as ACM—could have caused sudden cardiac arrest at any time. And of course, the transplant surgery itself carried its own risks.

I didn’t know when the call would come telling me a heart was available. But in the weeks before it finally did, I had a strange sense that something was approaching.

The only way I can describe that time is that it felt a little like Katniss Everdeen before she entered the arena in The Hunger Games—a quiet moment standing at the edge of something enormous and uncertain.

But the truth is, I wasn’t afraid to die.

What I feared was leaving.

Leaving my husband.
Leaving my children.
Leaving the people I love to carry the weight of that loss.

Because I know what that kind of loss feels like.

I have already grieved the deaths of too many people I love—a dear brother, a beloved sister-in-law and friend, my daddy, and grandparents who meant the world to me. I know the hollow ache grief leaves behind.

And if there is anything I would wish to spare someone, it would be that kind of pain.

But grief tells a story of its own.

It tells us that a life mattered.

It tells us that love was real.

And in that sense, a life that is deeply loved—no matter how long it lasts—is not a tragedy.

It is something to celebrate.

A life isn’t measured only in its length, but in the love it gathers and the meaning it leaves behind. Some people are given many decades to discover that truth. Others seem to understand it much earlier. And the rest of us, if we’re paying attention, are lucky enough to learn from them—to celebrate the ordinary days, to hold our people a little closer, and to remember that even a shorter story can still be a meaningful one.