A podcast interview: Down syndrome, hope and what it means to be human

A few weeks ago, the lovely Erin Franco (from the Humble Handmaid blog) kindly asked me to join her on her podcast about faith and motherhood, The Right Heart, for a conversation about having a child with Down syndrome.

I thought that was a super fun idea — so on a rainy Wednesday evening, I snuck away into my closet (the only quiet place I could find in the house with four children) and sat on the floor next to the treadmill (you don’t keep your treadmill in the closet?) and called Erin for a heartfelt chat.

Some of the questions Erin asks in the podcast are: What is the best reaction or treatment of Kate that you think people can have? Why do you say it is a “gift” to have a child with special needs? How has having a child with Down syndrome affected your marriage? How did you and and your husband decide to have more children after having Kate?

To listen to our conversation, just click here.

(Thank you, Erin, for having me on your podcast! I so appreciated your honest and thoughtful questions — you are a wonderful host.)

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Special Children, Blessed Fathers

My husband was recently invited to contribute a chapter to a new book about faith, fatherhood and children with special needs called Special Children, Blessed Fathers.

In Matt’s chapter, titled, “A Different Life,” he naturally talks about his experience as Dad of our daughter, Kate, who has Down syndrome. Here’s an excerpt:

Many of us spend our lives trying to make life easier. We imagine that having a lot of “success” — extra money and influence, a nice house, the ideal family and plenty of free time for pursuing hobbies and career interests — will make for an easier, happier life.

Deep down we know it’s not true. Not only does every bit of conventional wisdom testify to this lie, but we also see it played out every day as we learn the unhappiness of the rich. Yet we still insist on learning it the hard way ourselves, often wasting our lives pursuing this “easier life.”

I’m one of the lucky ones, though. Having a child with special needs is like a secret short cut. When you have somebody who needs you a little differently, you have much less time to waste on such other pursuits. Of course, having any kids at all does this in its own, beautiful way. But having a child that nudges us out of the norm and demands our attention in a different way has been a great gift.

Yes, some things in life are harder. There is no sugar-coating the extra challenges that come with having a child with special needs. But, for us, while some things are harder, the most important things in life are actually easier. It has compelled us to live the life of service we were already called to. And when you begin to live in this way — with less room for your own selfish ambitions — it’s easier to see the simple and miraculous life God planned for you.

Mother Teresa says, “The fruit of service is peace.” Well we’ve learned that all the unexpected trials of life are not really burdens at all, but opportunities to serve. They are the path to peace.

Matt’s chapter is beautiful (and I would say that even if he wasn’t the love of my life) — but the other chapters bring great wisdom as well.

Writer and father, Joseph Pearce, who pens a chapter called, “Unless We Become As Little Children: Lessons my Son Has Taught Me,” also writes about having a child with Down syndrome.

An excerpt from Pearce’s chapter:

Children with Down syndrome are, indeed, very special people. They are here to teach the rest of us about love, not merely in the feel-good sense in which the word is so often abused in our largely loveless world, but in the self-sacrificial sense, which is the heart of love’s deepest meaning.

If the true definition of love is to lay down one’s life for the other, the child with Down syndrome or with other challenging disabilities teaches us how to love more fully and more truly. Can there be a greater gift to any family than the gift of this very special love? Once again, Father Ho Lung encapsulates the heart and hub of the problem of modern life and the way in which children with Down syndrome help us to solve the problem:

‘There are so many worries in the world because our modern world requires that we have so much.

We sophisticated people battle and compete to acquire so much, intellectually and financially… There are so many goods that are there to be had; so we miss the flowers, the trees, the birds of the air, and each other.

There is no ambition [in the self-centered sense], no battle for power, no pomp, no falsehood, no hypocrisy in people with Down syndrome.’

Most of the contributors in the book are Catholic fathers who have children with a range of special needs — but the stories span faith traditions and life experience with words of love, truth and encouragement. And you might even find a few words from yours truly if you look close enough! (*cough* on page 190 *cough*)

Archbishop Chaput wrote the forward — he has spoken positively and powerfully about people with Down syndrome often, some of my favorite words of his:

A friend of mine has a son with Down syndrome, and she calls him a “sniffer of souls.” I know him, and it’s true. He is. He may have an IQ of 47, and he’ll never read The Brothers Karamazov, but he has a piercingly quick sense of the people he meets. He knows when he’s loved—and he knows when he’s not. Ultimately, I think we’re all like her son. We hunger for people to confirm that we have meaning by showing us love. We need that love. And we suffer when that love is withheld.

These children with disabilities are not a burden; they’re a priceless gift to all of us. They’re a doorway to the real meaning of our humanity. Whatever suffering we endure to welcome, protect, and ennoble these special children is worth it because they’re a pathway to real hope and real joy.

I have a few extra books to give away if you know a father who may need a little encouragement right now. First come, first serve — just email me at sippinglemonade (at) gmail.com and I’d be happy to drop one in the mail for you. Update 7/14/15: All of the free books have been claimed, if you would like to purchase one from Amazon, just click here.

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Glasses for children with Down syndrome

A couple of months ago, we learned that Kate needed glasses.

My first thought (after learning all about her prescription, of course) was: She’ll be adorable in glasses!

My second thought was: Wait — how in the world will we get her to keep them on? (She’s not a fan of anything she deems an extraneous accessory: i.e., hats, shoes, sunglasses.)

I immediately called a dear friend of mine whose daughter also has Down syndrome and wears glasses (she was born the same week as Kate) and was comforted to hear that her daughter had no real issues keeping hers on — she was just so happy to finally be able to see the beautiful details of life: the individual blades of grass and the fibers of the carpet. “It brought me to tears,” my friend said, recounting the story. Her words encouraged me — and that same evening, I went on a mission to find the most comfortable, practical, (and adorable!) glasses for Kate.

The first glasses I researched were the most common I see on young children — and the only kind of children’s glasses many of the stores I contacted carry: Miraflex

Glasses for children with Down syndrome
Miraflex glasses (from website)

Miraflex glasses are common for a reason: they are incredibly endurable as they are basically manufactured as one single piece of a malleable material — with no metal components. And they come in a lot of fun colors and shapes! But when Kate tried them on at the store, they fit her a bit too close for comfort. With no nose piece, her eyelashes would brush against the lenses — and for a girl who doesn’t like accessories that feel “overbearing,” I thought these might be too much for her.

However, Miraflex are a wonderful option for younger children and infants (seemingly indestructible!) — and I know many families who love them, though they didn’t fit Kate’s face well.

Next, I looked at Specs 4 Us — a line of eye glasses created by an optician and mother of a child with Down syndrome who was frustrated with trying to find frames that fit her daughter. As their catalog says, the frames are “specially formatted to fit individuals with Down syndrome and other people with low bridges.”

Glasses for children with Down syndrome
Specs 4 Us glasses (from website)

I love creator, Maria Dellapina’s, mission (and passion to help her daughter and others have frames that fit well and look great!) — but I was concerned about the durability of all-metal frames for my rambunctious 4-year-old. I will definitely keep these glasses in mind for the future, though! And seriously — moms are so awesome.

Finally, I stumbled upon a wonderfully informative blog post by Bri, a mother of a son with Down syndrome, who has had quite the journey with several different types of glasses (including the two I mentioned above). Her post is where I first learned about Tomato Glasses.

Glasses for children with Down syndrome
Tomato glasses (from website)

Made in Korea, Tomato Glasses have the durability of Miraflex (they are made for children of all ages), but they also have a nose piece attached, so they’re not such a close fit. Plus, in all sorts of colors and designs, they’re super cute.

Only 14 stores in all of the United States carry Tomato Glasses, but Bri had no problem ordering her son’s pair directly from the website. She says: “As for ordering the glasses, we simply emailed the company.  They were prompt in replying and very friendly. To this day we still email them if we need a replacement nose piece and usually a few days later we have a box at our door with our order!” (Here’s a link to their catalog. You can contact them here.)

My plan was to order Kate’s glasses from the website as well — but instead, I called the store closest to us in Texas (though still not within quick driving distance) that carries them: Dallas Youth Optical.

Can I just say: I have not had a better customer service experience in years. Billy (the owner) and his team were AWESOME! Not only did they have the color and size of Tomato Glasses that I needed for Kate, but they went above and beyond to make sure I was happy with my experience and mailed the glasses straight to my doorstep. If you are in the Dallas area, I highly recommend them — they carry Miraflex, Specs 4 Us, Tomato Glasses (though they have a limited inventory of Tomato Glasses right now) and many others — and they are experts in serving children of all abilities and their families.

Tomato Glasses come with an adjustable strap, extra ear pieces and nose pieces and a hard case:

Glasses for children with Down syndrome\

Glasses for children with Down syndrome

Kate was able to try on her new glasses (with new lenses) for the first time this weekend. Her response when she put them on? She said one word:

“Wow!”

She definitely seems to like them, though she’s naturally adjusting to the new “view,” so we’re all easing in. But overall, we are very happy with the glasses, and story time is even sweeter.

Kate in her Tomato Glasses
Kate in her Tomato Glasses

Do you have a brand of glasses that you love for your child?

Since my little glasses-finding-adventure, I have had multiple opticians, optometrists and even our wonderful ophthalmologist ask for tips on what sorts of glasses they should recommend to their families of young children — especially young children with Down syndrome.

I am so thankful for the people and products we have available today to help us all see more clearly.

What I found inside this old white dresser

The white dresser sits, freshly painted, below a perfectly-spaced congregation of blue and white porcelain plates.

The plates, which belonged to my paternal grandmother hover delicately above the dresser, which belonged to my maternal grandmother — except then, it wasn’t painted white.

Then, it was a wood veneer — a pretty, deep rosewood color — but age and time and living (it sat in the living room after all) had chipped away at the top layer and by the time it made its way to me decades later, I thought: “You know, that would look really great painted white.” And so we asked the painters who were painting the cabinets of my in laws’ house nearby if they wouldn’t mind terribly if we added a bit more wood to the mix. They graciously obliged. And the rest is history.

History, of course, is what the dresser is all about. And if I kneel down and place my entire head inside the cabinet door on the right, it smells like the old brick house where my Grandma made scrambled eggs and the farm dogs slept on a hot summer porch. Like the closet to Narnia, the little cabinet transports me out of time to the very place where a not-so-old woman in blue house shoes put linens in those drawers before me.

Before me — after me — the generations are a reminder that it’s not really about me at all. A reminder of how we are all part of something bigger; the dresser was passed to me, I paint it, and I pass it on. Like all that is passed down from one generation to the next, we use what is gifted to us with, God-willing, grace and gratitude and then, we share it. Not just dressers — but faith, love, wisdom. Sometimes there are chips that need to be filled in, edges that need to be repainted, stories that need to be repeated. Sometimes we just need to inhale the air of an old cabinet and remember (or close the door and move on.)

The white dresser is wearing week-old paint and decades-old hardware. It cradles linens that match the liturgical year — ready to be pulled out and parachuted over the handmade farm table (made by my husband and brother-in-law) when the occasion arises. It is as much a conversation piece as it is storage, and I have decided that the conversation is really the greatest utility that comes from it. Sure, it holds stuff — but its value is less in the space for place mats, but rather, the room for memories. It holds the smell of Christmas-past. The stories of grandparents passed away. The reminder that I stand on the shoulders of many-a-strong mothers who dressed tables and babies that grew to dress tables and babies.

The paint is already chipped, mind you. That big drawer at the bottom is a doozy and gets stuck easily when you try to push it in and it’s made its mark. Kate likes to hide in the little space between the dresser and the wall and play drums on it. My 1-year-old likes the noise the floppy handles make when you lift them up and then — snap! — drop them. There will be more chips and scratches and that’s all good, too. It’s all part of the story of a dresser turned timed capsule turned hiding space that simply fits in where it’s needed.

And who knows — maybe in 60 years, my own granddaughter will stand with a cup of coffee in the morning light before it and say, “You know, that would look really great painted red.”

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It’s potty time!

We’re in the world of potty training in this house (with more than one kid) and I have had the lyrics of the Potty Time theme song stuck in my head for days: “Listen to your body.. it’s time to go pottyyyy.. it’s Potty Time!”

Which is why I have to share a great product that’s making potty time a little more fun in our house: Rachel Coleman’ s Potty Time DVD and sing-a-long CD. (This post is not endorsed by Rachel — only by my little ones!)

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You may have heard of the Signing Time series — we watch those a lot around here to help the kids learn basic sign language. At first we started learning basic signs to help Kate communicate as she finds her words, but then we realized how helpful and fun it was for all of the kids.

The DVD has a lot of catchy songs as it talks to kids about growing up and using the potty — but what I’m enjoying even more than the music (which we’re all singing around the clock) is the Potty Time app feature that allows us to “Facetime” with Rachel and tell her about our successes (and our accidents.) The kids love this, saying: “We have to call Rachel!”

I just let Rachel know that we want to have a call with her…

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I tell her which type of call we want to have:

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And before we know it, the phone is “ringing”:

 

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If it’s to brag about how good we did, she tells us how proud she is:

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And if we call her about an accident, she positively gives encouragement to keep trying:

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Pretty fun stuff. And along with a few jelly beans, it has been quite the motivator.

It’s potty time!