A Rose by Any Other Name

Written by Maria Rioux

It was the first and only time I ever got a dozen roses.

We were in graduate school… at least my husband, Jean, was, but I always think of it as a team effort. A rose isn’t edible, which makes it a luxury. A rose is expensive, which makes it an extravagance. Twelve of them fell into the “unthinkable” category, given our circumstances. And yet, following the birth of our first son, my husband walked into my hospital room with a dozen roses and our two-year old daughter, Michelle (her dress... and shoes! on backwards?), who struggled to control a silver helium balloon announcing the happy news: “It’s a boy!!!” What that balloon did not say was that our boy was premature, had Down Syndrome, could not maintain his body temperature, had a hole in his heart, and could not yet eat as babies naturally do. Most people were offering condolences, not congratulations. Those who didn’t say anything looked sad. To be fair, we were happy and sad at the same time: we were happy Tom was alive and getting the medical care he needed to grow stronger, and we looked forward to holding him and caring for him. But we were sad at the prospect of his lifelong cross. A team of doctors had already come to prepare us for the “low quality of life” he should expect to experience in the years ahead.

Yet those roses and that balloon reminded me, and everyone who saw them, that this child was a singular and most precious gift, and that even crosses work for good. Those roses, so unexpected, singular and beautiful, were a foretaste of the surprising joys to come. Joy is sometimes mingled with sorrow and tears. In the natural world, nothing grows and thrives without water. Maybe we can’t fully appreciate blessings or make much spiritual progress without some tears.

“Low quality of life” (which can refer not only to the person with such a cross but also to his care givers) is all-too-often a matter of perception. Much has been written to help one overcome handicaps to the extent that that is possible. I’d like to write about the surprising joys and blessings accompanying this cross. Rather than a low quality of life, Tom and others like him display the beauty of a simple one. If you could have heard Tom’s giggles when he was a baby and young child… in fact, if you could hear them today (he’s 20 now, and doesn’t giggle quite as often) or his laugh, you’d have no questions about his appreciation for life… nor our gratitude in being allowed to share in his!

All things work for good and God’s plan is perfect. How is God’s perfection reflected in such a person? It might not be so much in what he can do but in what he can inspire others to do. Children help us to forget ourselves, sometimes in such delightful ways that we hardly notice. Children who are unusually needy make that all the more necessary, but in ways that cannot go unnoticed. Because Tom is our second child, all of our children have been touched by him throughout their developmental years. They are more appreciative of their own blessings and more compassionate as a result. He has been a gift to our family in so many ways. He reminds each of us of all that truly matters, because so many things that seem important are not possible for him. He doggedly works to master those things that are possible with exemplary and cheerful perseverance. He loves as God loves: without reserve, quick to forgive and eager to help.

Tom could not eat as babies normally do. We were given bottles with very soft nipples which didn’t require much muscle tone while being sucked. Those bottles made feeding the baby something anyone could do. It was something we did together. One of us massaged Tom’s cheeks to encourage his muscles and stimulate sucking, while the other made sure the bottle angle was right so that he inhaled a minimal amount of air. It almost never mattered. No matter how careful we were, nor how well we burped him, Tom’s incredible gag reflex coupled with low muscle tone somehow conspired against our best efforts. We’d have to start all over again. It didn’t always seem to be so, but it was a wonderful opportunity to work together for the good of this child we loved so well. It was also a reflection of how God cares for each of us, so dependent upon Him being handicapped by fallen nature, but so loved and patiently cared for regardless.

For years we worked on developing various muscle groups. One memory stands out: that of Tom, laying in a sling slowly swinging back and forth, reaching for some object he fancied, or for me when he was tired and ready to quit. Tom worked so very hard to get the appealing thing we encouraged him to grab. Initially he did it because he wanted the ball or the car. As he tired, he did it because he wanted to please me and his cheering siblings. Eventually, he no longer cared for anything we might offer by way of encouragement. He wanted one thing: to stop this, to snuggle in my arms, content and peaceful. He was such a concrete image of each of us, while also a reminder to maintain proper focus. We so often pursue what seems attractive at the moment. We’re pretty clumsy about it, and “it” is often elusive. Eventually we tire of such pursuits and recognize what Augustine came to see: our hearts are restless until they rest in Thee.

When Tom was around three we worked on speech. We held pictures of everyday things and he would have to choose accordingly: the girl combing her hair, or a car. Then he would have to say its name. When I was finished his siblings begged for a turn to “be the teacher”. Tom loved it. One day I was making dinner and Angela (then two) was “working” with him in the next room. What surprised me was that he kept getting things wrong that he usually had no trouble with. After a few minutes I went to see what the problem was, fearing a mental lapse, speech amnesia: we were going to have to start all over again. There sat Angela, facing Tom and holding up two cards. Tom had a sort of confused but contented look on his face. “Where is de twuck, Tom?” Angela demanded. Tom seemed mystified, and I didn’t blame him. She was holding both of the cards with the pictures facing her. Maybe this was some sort of game of chance. After a couple of seconds he took a gamble and picked one. “Oooo, no Tom, dat’s a caaarrrrrr...say CCCAAAARRR.” One thing was certain: he had no future in Vegas.

Every child is unique, and Tom reminded us of this in many concrete and delightful ways. When he first learned to blow kisses he did it from his neck. He knew there was supposed to be a clucking sound accompanying kisses but was a bit hazy on the more technical aspects. He pursed his lips a bit more generously than is customary and clucked with his tongue, making him the ideal poster child for, “If chickens had lips...”. When he thought he was a good boy, he’d pat his own head and tell himself so.

Abstract concepts are difficult for Tom. He’s proof that man learns through his senses… and some of us get lost quickly without the concrete. This is why we are amazed at how far he has come in learning to play the piano. He can now play songs like the Battle Hymn of the Republic with the left hand notes/chords matching the right hand notes. He even keeps the counting going… though he does fudge on the rhythm. If he can’t find a note he just drags the previous one out a bit until he works it out. He loves to play for people! A crooked little smile sneaks upon his lips, which he works to conceal because… it’s not professional? I’m not sure why, but he definitely tries to hide it and appear low-key. He talks to himself quietly, psyching himself up. “Okay, now...Yes...yes...Ah! I got it!.... Ahhh!” He plays the piece, sometimes having to look down at his fingers for hand positions or elusive notes, but generally reading and playing in a way that is both a joy and a testimony to years of struggle and perseverance. When he’s finished he beams, now smiling openly and broadly, and takes a bow.

Tom would like to be able to buy things on his own but is still sort of mystified by money. I might not actually kill, but I certainly would like to throttle, the guy who made the dime smaller than the nickel. We’re working on the idea of “next dollar”: giving the clerk the next highest dollar amount so that Tom would not have to count change. Tom spends his money the same way he lives his life: in simple, joyful, and generous ways.

Tom also loves animals. He will happily play with our cats for long periods. It’s then I hear giggles most often. He will use a shoelace or string to entice the cat into pouncing. Though part of the fun may be that he is fast enough to outsmart the cat, most of it lies in the simple joy of playing with animals. Even the cat looks like she’s giggling!

Tom likes to read about strong, brave men or boys. He’s read all the Narnia books, but The Lord of the Rings has thus far been too difficult. Books are incorporated into his life. I find him playing in other rooms, talking to himself. “Oh, Tom, you’re so strong!” he declares as he wings his sword around, challenges all comers, and walks off the field, triumphant again. If he happens to notice you watching him, he gets a sheepish look on his face and says, “What?” which sounds more like, “How long have you been standing there?” Scenarios in the shower are even more involved. I don’t think he realizes we can hear him outside the bathroom.

Tom also writes stories, though they tend to have a single theme: Tom the hero. Sometimes it’s because he’s brave, sometimes it’s because he’s smart, sometimes it’s because he’s amazingly fast… and sometimes he’s all of that at once. He usually has a sidekick, his brother Ben, who is also brave, smart, and fast… though not as much as Tom. He will leave his stories lying around for us to find and read, watching furtively from a distance to see our reaction. He will beam with pride when we notice his great spelling, neat handwriting, or the story as a whole. This can be a joy, but also a sorrow because Tom’s stories have a point: he’d like to be exactly what he imagines himself to be… but knows he isn’t.

Tom wakes up early as a rule. After washing up and eating he checks on the laundry. He loves to surprise us with laundry neatly folded into individual piles corresponding to each person, (though every once in a while Jean gets Will’s underwear… or I (!) do.) This has earned Tom the title of “Laundry Master”, and he works hard to make sure no one steals it. He does not like dishes, but does his fair share. Sometimes I surprise him by doing them for him and he will slide up to me, plant a kiss on my cheek and tell me, “I love you, Mom.”

As his siblings grow older and more independent, the differences have become especially painful. We’ve had discussions with him about Down Syndrome, the impact this has on his life, and the things he can and cannot do. The last occurred when Angela, his younger sister, learned to drive. Tom wanted to learn as well. We both had the sense that Tom didn’t really understand why we insisted this was not possible. He got the gist… he wasn’t going to be driving… but he sort of tuned out or couldn’t really grasp the reason why. Soon Angela will leave for college. Tom would like to do the same. This time the full force of his handicap seemed to hit him. His eyes filled with tears of disappointment and sorrow. Jean wrapped his arms around Tom and hugged him hard. When Will saw Tom and his dad he said, “Awwwww, Dat’s soooo niiiice!!” and Tom, eyes still full of tears, began to smile. He patted Will’s head with affection and left the room, still smiling. Sunday at Mass Tom happened to be sitting next to Will. At one point he reached over and patted Will’s head. At first Will did nothing. Then he looked up at Tom, grabbed his arm, and kissed it fiercely. It’s a guy thing. Even kissing doubles as some sort of attack… it falls under friendly fire.

Over the years people, and even animals, have inadvertently or intentionally hurt Tom. One thing has never changed: Tom is eager to forgive and able to put any and all transgressions “as far from him as east is from west”. His love reminds me, in such a hopeful, joyful way, of God’s love. He has never hurt or offended God (or, to my knowledge, anyone else) in a deliberate way… though he can be unusually stubborn and lazy. Tom reminds us that we are each called to become saints and given all we need to do so. Pope Benedict is right: “Even suffering is part of the truth of our life. Thus, trying to shield the youngest from every difficulty and experience of suffering, we risk creating, despite our good intentions, fragile persons of little generosity: The capacity to love, in fact, corresponds to the capacity to suffer, and to suffer together.”

All parents marvel at the accomplishments of their children. Others forgive us our besotted descriptions of their latest achievements, but, if truth were told, we probably don’t rave nearly enough. We do not fully appreciate the beauty and complexity of these well-oiled machines until they don’t run the way they normally should. We began doing physical therapy with Tom at three weeks. I couldn’t imagine what we were supposed to do with such a small baby, but that was because I took so much for granted. Rolling over, crawling, walking and talking at the same time: each is in itself worthy of resounding applause. We learned to pin his pajama knees together so that he would not spread his legs very far apart (otherwise his hip sockets would be damaged before they were fully formed). We learned how to help him roll over, sit up, and be comfortable with new textures. Most importantly, we learned that there was a right way to do just about everything, and avoided complications in the future by making sure Tom did things that way.

Some books that are especially helpful to that end are:

Gross Motor Skills in Children With DS: A guide for parents/professionals by Patricia C. Winders.

Fine Motor Skills in Children With DS by Maryanne Bruni.