Kids Like Ours

On Valentine's Day, I had a chat about school with the nurse practitioner at Collin's neurologist appointment. She was voicing concerns about the risk of sickness in a typical classroom. 

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"With kids like ours," she said, "the most important thing is quality of life. We want them to have the healthiest, happiest life possible."

At an earlier point in my grieving and healing process, I would have been hurt and taken strong issue with her comments. Aside from lumping together all kids with complex medical and developmental challenges, the statement seems to assume that things important to typically developing kids aren't important for kids with disabilities.

But I know this woman, I know her heart on the issue, and I'm further along in my journey now. So when she said those words and the pain scraped at my heart, it wasn't from offense.

Instead, I saw the faces of my nieces, of my friends' children, and I wondered whether a doctor had ever said words like these over those kids. Had experts ever encouraged their parents to focus on what's most important? Did those families feel empowered to let go of the nice-to-haves when push comes to shove and hold onto the precious no matter what? 

It was the first time I remember wishing that something said about Collin could be said for all kids. I wished that we could all look at each other and say, "With kids like ours, the most important thing is quality of life." And then help each other sort out what that means.

How to Say Thank You

It's not as easy as you might think.

When hundreds of people step into your life and turn it upside down for good. When generosity exceeds the boundaries of comprehension. A thank you note just doesn't seem to cut it.

We are emerging from a period of overwhelm around here.  I think we're finally coming to terms with the fact that this really is our home and we're ready to really live in it.

And that is our ultimate thank you: accepting what we've been given by living a full, messy, shared life in this beautiful, accessible house. Singing in Collin's roll-in shower. Gluey art projects in his school room. Knocking into walls in his gait trainer. Quiet breakfasts at the wheelchair accessible kitchen island. Loud dinners in the wide-open dining room. Talking and reading on the roll-out patio.

By living and loving our own version of normal, we fill our days to the brim with gratitude -- we say our most heartfelt thank you to everyone who made this wonderful thing possible.

It Is Blessed to Receive

This time of year we talk a lot about the importance of giving. "It is more blessed to give than to receive," right? (Acts 20:35)  We give at Christmas because of what we were given in the incarnation -- the beautiful mystery of God With Us. And so we take care of those in need. We think of ways to demonstrate our love for friends and family through gift-giving.

Unfortunately, this is a teaching that can get twisted. Instead of emphasizing the goodness of giving, it can become an indictment on receiving. It turns into, "YOU are better if you give than if you receive."

But receiving is the other side of giving. Just because one is better doesn't mean the other isn't good. And I'm learning that it's important to be able to do both well.

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We're wrapping up almost two months of living in a furnished apartment across town from our home. We brought only the essentials with us and packed everything else in a pod. We have spent our evenings and weekends cozily and simply: swimming at the complex's indoor pool, feeding the ducks at the park across the street, watching Christmas movies by the light of our tiny potted Christmas tree.

Meanwhile, dozens and dozens of people have been working hard on our house, bringing about Something Wonderful. Making it accessible. Making it practical. Making it beautiful. And all for us. Next week, we will get to see our home for the first time since we moved out, and I have no doubt it will be overwhelming.

I was talking to a friend about this incredible experience recently and she shared that her hope for me is that I will be able to really receive this great gift. 

She knows that receiving isn't always easy. It takes a humble admission that you can't always be the one giving. It takes vulnerability to the goodwill of others and a willingness to fully enjoy without trying to repay. Not exactly strengths of mine.

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My favorite Christmas scripture has always been the last verse of the nativity story I read every year. It comes right after the description of how the shepherds reacted to encountering the angels and then finding the baby Jesus: they ran all over the place, telling everyone who would listen.  Then the author, Luke, writes, "But Mary treasured up all these things and pondered them in her heart." (Luke 2:19).

She had just come through the strangest year of her life. Angels and pregnancy and displacement and the Son of God. It was all too big to wrap her mind around. And what did she do? She received it. She treasured it up and thought about it without fully understanding it.

Next week, when I walk up to and through that house in the presence of our loved ones and of the people who worked so tirelessly to bring this about, I want to have a heart like Mary's. I want to receive this thing that is so much bigger than me. I want to treasure the love behind it. I want to ponder the effects of radical generosity, truly taking it in so that it makes me a different kind of giver.

Something Wonderful

For years in Collin's early life, I spent my days clenched in anxiety over what terrible thing might come next. I was constantly braced for the next hard thing. That has eased some recently, but it is still my default.

This September, we sat down at our dining room table with a couple from a local foundation and they told us that they wanted to build a large, fully accessible bathroom for Collin. That two other local businesses had approached them and asked if they could participate, too. That the three of them wanted to work together to redo our kitchen, open up walls in our living spaces, and make our house beautiful and completely accessible for Collin. 

I had been submitting grant requests for that bathroom, getting turned down. We had been trying to come up with a sustainable plan for making those adaptations bit by bit while still allowing us the time we need to care for and spend time with Collin without running ourselves into the ground.

My tears didn't start in earnest until our visitors, sensing our hesitance, asked us to please let them do this for us. They explained that no matter how gorgeous and useful this house turned out, the benefit to us would be nothing compared to the benefit to those lucky enough to work on the project and get to know us.

As they prepared to leave, I couldn't find words for my feelings. "I'm in shock," I admitted to the man. "I'm having trouble wrapping my mind around this."

Their foundation is named in honor of their daughter, who had a rare genetic disorder. Its mission is to improve the lives of families who have children with special needs. These people get it.

"Isn't it nice," he said, "to be surprised every once in a while by something wonderful?"


In the early days, the pain was searing when other babies sailed through their milestones while we struggled just to keep Collin healthy and make it through the days. Over time and through healing, I've come to terms with the fact that, though Collin's firsts are not the same as other kids', they are no less exciting or beautiful.

We've had lots lately. First time mowing the lawn with Daddy. First marshmallow roast. First campout. And something about celebrating these surprisingly meaningful and joyous occasions all in a row made me remember what I think of as our first first. 

Collin was not quite a year old. It was between two long hospital stays. We were still raw from the terror of Infantile Spasms and starting to accept that the new seizures were not going away. We hadn't seen a laugh yet and smiles were rare. Then it snowed. Collin had a beautiful snow suit that was buried with the other unused baby gear behind his medical supplies. I dug it out, zipped him up in it, took him down the front steps, and laid him right in the snow.

He wriggled. He flashed a couple of small grins. But what grabbed my attention was that he kept raising his eyebrows. Over and over. My scared mama heart kept analyzing it, trying to figure out if it was another new kind of seizure. But soon I realized that he was taking in this new experience. He was appraising the situation with what looked like mild amusement. 

And that's when it hit me: my baby has a personality.

It sounds obvious, but it was a revelation to me. For almost a year, I hadn't been able to distinguish symptoms from side effects from "normal" behavior. I was fully focused on caring for Collin, but had not gotten to know him. And here he was. In spite of everything, here he was -- warm, alert, funny. 

He still makes that face all of the time. On the lawn mower. At the campfire. In the tent. His eyebrows reach high and a gleam comes into his eye. I'm liking this, he says. I'm interested. I'm here.