Step One is One Step

After coaching an early morning class, I was talking to one of the members and asked her what her occupation was. She told me she was a social worker. I never knew much about social workers until Wil was born.

“You do good work,” I said, “but my guess is a lot of people don’t see it that way. They probably don’t want to see you at all.” A social worker came into my hospital room the afternoon after Wil was born and she was the last person I wanted to see.

“Yes, I can walk into some very challenging situations.” She told me a little about her work, of course keeping confidentiality.

When people are struggling, they typically don’t appreciate someone who has only learned of their situation via a file, to walk in uninvited and try to fix them or their situation. “Don’t walk in and say every little thing is going to be ok.” “Don’t try to fix me.” “I can hardly see past the next minute let alone think about how to overturn this entire situation for the better.” These were at least my thoughts when I first met the social worker that walked into my room. It’s not that I didn’t believe things would get better or that I didn’t want help. Its more that I couldn’t think that big at the time. I couldn’t think out that far in the future. When you are struggling, it’s hard to see past the fog you are in in that particular moment. For someone to walk into your story at that point and say, “You got this!” “You are awesome!” “I believe in you!” while kind, is hollow. It’s much too vague and has no real meaning attached to it. It doesn’t connect specifically with your situation.

That’s why I’m not particularly fond of the posts on social media proclaiming, “You are awesome!” “I believe in you!” “You can do it!” While there is nothing wrong with a positive message, and it’s certainly worlds above low-dwelling negativity, the words, while positive, are empty. They are much too broad to connect with any substantial meaning. If the social worker walked into my hospital room and said, “You are awesome! I believe in you! You can do it!” I would have looked at her with wide eyes, like who do you think you are? Will you get out now please? Don’t puff me up with your empty positivity. It gives me indigestion. I couldn’t see past the next minute, let alone see how awesome my future was and that I could do it! Do what exactly? What does that mean? How about you tell me how I can get through the next minute because I can’t see beyond this fog. If she said, today you will shower and that’s all you have to think about, I would have jumped out of bed and given her the biggest hug ever. I was too overwhelmed to be awesome. I was too overwhelmed to be believed in. I was too overwhelmed to do it! whatever that was. But to be given one specific action to take just one step forward would validate where I was. It would make a connection with me—we could meet at a place of understanding. Eventually I could find my way to awesome. Eventually I could do it! (whatever that is). But right now, that was much, much too vague. Much too broad. Much too rah rah rah. When you are living in a fog of overwhelm, you need one specific direction to be pointed in. And just one. That is enough.

The social worker that walked into my hospital room, though, broke my preconceived notions. She did not tell me I was awesome. She did not tell me I could do it! She didn’t try to fix me or tell me about some future I was incapable of seeing at the moment. She was much smarter than that. She didn’t say anything. Instead, she held up a folder. A royal blue folder. You could only see the royal blue on the periphery of the folder, because the majority of its surface was overcome by a very close-up picture of a blond girl with Down syndrome.

“Isn’t she beautiful?” The social worker asked me.

I have written in detail about this moment on a number of occasions because it was so impactful to me. This occurred over 12 years ago, and when I recounted this story to the member at the gym that morning, I was surprised by the tears that welled in my eyes so many years later. Impactful moments do not lose their emotion easily.

No one told me my baby was beautiful the morning when he was born. Rather, it was a flurry of activity. He was born “floppy.” Those were the first words after, “It’s a boy!” Elation to confusion in a matter of seconds. What does floppy mean, I asked. I was told it means low muscle tone. And low muscle tone usually means Down syndrome. And yes, look at his short stubby fingers, and the separation in his toes, and the small nasal passages. And these are the words and the conversations that happened seconds after Wil was born.

Tears appeared in visitor’s eyes. Consoling words said. But by afternoon, when I lay alone in the hospital bed while Wil was being examined, the words I most needed to hear came from the person I least wanted to see. The social worker who walked, uninvited by me, into my room. My preconceived notions of her purpose there were shattered. Thank goodness. She was the first person who helped me see past the moment I was in. The fog that surrounded me lit around the periphery. She gifted me one forward step.

After I brought Wil home and we got settled into our first months, I began to seek out support groups. I went to a number of meetings with various different groups. All of the support groups did validate the pain of the initial shock. They all knew the fog I was walking in. However, some stayed there. They told their sad stories, and everyone listened. But what was missing was how to get out of that story. I didn’t want empty promises of positivity. But I also didn’t want to stay where I was. I walked out the door of those groups, thanked them for their time, and never went back.

A few years ago, Matt and I went to marriage counseling. On our first visit, when the counselor was navigating our situation, she asked me if I felt to blame for birthing a child with Down syndrome. I was flabbergasted. That never once crossed my mind. Down syndrome is random, and in any case, what good is blame to do? I had learned over the years, that I was the center of my story. That no matter what anyone did to me, I was still the center. That I had the choice to make a decision to make my life better or wallow in pain. She ended up being a very helpful counselor, but her question always stuck with me. It was a reminder to never get stuck in useless blame. She gifted me one forward step.

The reason Matt and I went to marriage counseling is because we came to acceptance of Wil’s Down syndrome at a different rate. No one person comes to acceptance in the same way at the same time. Acceptance is a journey of experiences. A journey that is helpful to walk along with others, but you also must do your own work. Matt and I had our own separate work to do so that we could come together in acceptance. We are each different people with different backstories. We work well together, but we often see and approach things in different ways. We needed help in bringing our acceptance together for the sake of our marriage, for the sake of Wil, and for the sake of Katherine and Elizabeth. We are their role models in how to value acceptance in differences. It’s not something that can be answered with empty positive promises. It’s not a big, blanket you can do it! type of thing. It’s validating each other’s concerns. Some days it’s a high-five and other days it’s a kick in the pants. It’s a one step at a time kind of process.

In the early days after Wil’s birth, many helpful family members and friends gave me phone numbers of acquaintences who had a child with Down syndrome. “Here, call them!” they said. The thought behind these passed on phone numbers was out of kindness. And the meaning behind these passed on phone numbers was out of wanting to help. And yet, here you are feeling overly emotional, and there is so much information being thrown at you at once you don’t even know where to start. Calling a complete stranger can feel absolutely monumental at the moment. Today, I now get asked if I can talk to a mother who just birthed a child with Down syndrome. I love nothing more than to be approached to talk to their friend or family member. I too want to help and be of support. But I remember those early days well. I always accept that my contact information be passed on. But I also add,” let them know they can email me or text if that’s easier. It’s never too early or too late to reach out to me. Sometimes one phone call can feel absolutely overwhelming. I’m here when they are ready.” One step at a time.

Sometimes making one single phone call to a stranger is all you have in you. One step. Sometimes taking a shower that day is downright heroic. One step. Sometimes working up the courage to approach your spouse about the accruing months of difference in acceptance is the most monumental thing you can do. One step.

You are awesome! You can do it! is too big, broad, and vague when life already feels that way. When you can’t see further than today, committing to one, specific step is the bravest thing you can do. One step. One step. One step. Is that royal blue on the periphery of the fog? One step. One step. One step. More colors are coming into view. One step. One step. One step. I can see the larger picture now. It is a different one than I expected. One step. One step. One step. Would you look at that! Now that I’ve stepped up, so I may now see clearly in close-up view, I must say, the beauty is spectacular.

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When She Watches Him Play

When she watches him play, she sees not only him, but the distance they have covered together. The places they have been, the people they have met–and those yet to come. Willing the first forward steps–halting, unfamiliar. Then, with time, more fluid. Momentum building. Lessons learned. Villages created. Paths made, step-by-step-by-step. When she watches him play, she takes time to appreciate the sunshine on her shoulders. When the clouds fade back in, she knows they will cover the distance into the sunshine together again.

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Happy is as Happy Does

I wasn’t feeling very well yesterday. Wil had just gotten over the flu, and I believe a lesser degree of his illness hit my system yesterday. Other than going to work in the morning, and taking Katherine and Elizabeth on a few errands, I laid low and got as much sleep as I could. I decided to sleep in this morning, and Matt had long left before I woke up.

I could smell the coffee in the kitchen when I woke up. It smelled good, so that was a good sign. I could hardly drink any yesterday with the nausea.

It was still dark in our house, as I padded from my bedroom toward the kitchen. Katherine, Elizabeth and Wil were still sleeping. I walked by Woody, curled up in his bed on the living room floor. He didn’t lift his head, but his tail, extending the outskirts of his round bed, gently and rhythmically tapped the hardwood floor. I bent down and gave him a pet.

I made my way into the kitchen, and poured myself a cup of coffee, then turned the desk light on just above the Lazy boy chair. I nestled in the chair with a book. My New Year’s resolution has been to stay off of any media first thing in the morning and read something that will improve my life. Twenty days in, just one more day to cement the habit.

Soon I heard Wil rustling in his bed. He got up and must have seen the desk light in the living room. He walked toward the doorway in his room, and leaned to peer out of it. As soon as he saw me, he quickly stood back upright and shut his door. Privacy has been a big deal lately.

A few minutes later, he emerged fully dressed in a button-up collared shirt and pants.

“Going somewhere special today, Wil?” I asked.

“Hi, Mom.”

“Hi, Buddy.”

He walked over and climbed up in the chair with me.

“You are squishing me, Mom.”

“Hey, I was here first, you stinker. I think it’s you that is squishing me.”

“Ohhh, Mom. You are being silly.”

Hearing his string of words must be how an elementary music teacher feels when the choir comes together in harmony. Hours of practice, working for the notes to come together–to click. Wil used to say “you be silly Mom.” Now, the combination of “You are being silly” strung together in perfect harmony to this mother’s ears.

“Breakfast now, Mom.”

“Ok, let’s have your pill first.”

Wil takes a thyroid pill every morning in a spoonful of peanut butter. 

He has since he was six months old. He first took his pill in applesauce. Then at some point, he decided peanut butter was a better choice.

“Do you want to get out the peanut butter this morning, or me?” I asked him. Along with privacy, his independence was flourishing.

“I get the peanut butter.”

After I scooped up peanut butter on his spoon, and sunk the pill into it, I held it up to his mouth. His independence may be growing, but with his pill he still loves the game of “open the tunnel.”

He took the spoon, and I said open the tunnel, and he swallowed down his pill.

“Mom, guess what. I’m a choo-choo train!” And he started taking straight-legged, tiny steps around the kitchen island. His arms were bent at 90 degrees, making short, choppy swings.

“Mom, you do it with me!” I fell in straight-legged, tiny steps behind Wil and we choo-chooed around the kitchen island.

Once we made it full circle he laughed then said, “Ok, done now.”

He helped me make his breakfast sandwiches. Then he grabbed his plate and walked downstairs to watch Sofia the First on Netflix. I don’t know why, but he only watches that show while he eats. When he’s done eating, he’s done watching and moves on to something else to play with. I went back to reading in the Lazy Boy.

When Wil came upstairs after eating his breakfast, the sun was rising and warm on the window in the living room. He leaned his back up against the glass and said, “Ahhhh warm. It’s a beautiful day, Mom.”

“Yes, it is. Elizabeth has basketball practice this morning, but when she gets back, let’s go outside.”

“Ok, Mom.”

Wil walked off to his room, and put his favorite Luke Bryan CD in his CD player. He started singing at the top of his lungs. I started singing with him.

“No, Mom! Just me this time!” (I again heard the harmony with the addition of “this time” when he used to say, “Just me!” )

“Oh, geez, fine whatever. You never let me have any fun.”

“Oh, Mom, you are being silly.”

I gave him a hug and went back to my book. He restarted the song because clearly I messed up his groove. But I still belted out the choir with him from my chair in the living room because I just couldn’t help myself.

Yesterday, I did not feel well, and you never appreciate feeling good more than when you don’t. I was also living up to my resolution, and well on my way to forming a habit. My dog greeted me with the whap of his tail to start the day, and my son and I had already choo-chooed around the kitchen. When Katherine and Elizabeth woke up, I would surely annoy them with my great enthusiasm for the day (it’s so fun to annoy teenagers).

I don’t believe happiness is this big, elusive thing that we wait for to come to us. I don’t believe happiness is merely positive thinking. Happiness is positively doing. Happiness is positively seeking. Happiness is found and taken in lots of small doses that add up. Happiness is choo-chooing around the island rather than grumbling over a daily pill. Happiness is taking note of the sun through the window, leaning into its warmth and soaking it in. Happiness is hearing a harmony in a string of words. Happiness is singing at the top of your lungs because your son’s joy is downright contagious. Happiness doesn’t find us, we find it – in what we do, see, say, sing, and feel.

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A Question of When

When. That was my favorite question in the beginning. Even if it is not always specifically answerable, the question of when held a note of hope. When promises it will happen, it is only the timeline that is unclear.

On one occasion I asked the question, Will he? I was met with a long pause. Will, like when, is also not specifically answerable. But, unlike the question of when, will promises no hope. The question of will hangs on the edge of a cliff, it is random, free falling. To start with, there are already too many unanswered questions. Even the slightest flash of light, a word of hope, is strength to step forward to, even if blindly at first.

There may be no such thing as a bad question. But there is such a thing as better questions. I learned that quickly. When you are living in a place of question marks, don’t ask for more question marks. Ask questions that have a hint of hope. You don’t have to see the light, only to know that it is there. That there is a chance. That there is an opportunity. That there is something to step toward to. That is enough.

I didn’t know if Wil would talk. Nobody knew. At first I asked will he talk. No one can say, was the answer. Then I quickly learned to rephrase that as When. No one could answer either, but the latter moved us in a forward direction. When is progressive. When looks ahead. Will just wonders.

Wil’s first words were a thrill. Like any baby, he babbled. Like any mother, I heard decipherable words in his babble. The question was, when would two words come? Two words were much greater than one. Two words meant comprehension. Two words meant that three words would come. Three words meant that sentences would come. Three words meant that he could communicate with others. Three words meant four and five word sentences to come. Four and five words meant a complete sentence. Complete sentences meant he could make conversation. Making conversation meant making friends. Making friends meant the ability to have a social life. Having a social life meant having an enriching life. Having an enriching and full life meant the ability to have a job and succeed in adulthood. Not if, but when. Hope. Forward progress.

“Goldfish, Mom.” Not just “Goldfish” but “Goldfish, Mom.” Then, “Goldfish, Mom,” expanded to “I want Goldfish, Mom.” I couldn’t wait to share with Matt, “Wil said, I WANT Goldfish. Not just Goldfish, but I WANT Goldfish.” The flash of light was so bright I could hardly see. Not if, but when. Hope. Forward progress.

Soon, “Light” turned into “Turn off the light.” “Go to the store” turned into “I go to the store” and then into “I am going to the store.”

Wil talks in complete sentences now, but I continue to thrill at the formation of any new addition of a word. I have new questions of whens now, but the present whens continue to hold their hope, their strength and their promise of forward progress. Our first questions of when are our building blocks for the promise of new hopes and dreams.

Wil looked up at the sunset and pointed, “Mom, look! The sunset is beautiful.”

“Yes it is, Wil.” Almost as beautiful as your words used to show it to me. I will never forget to be thankful for those words, because I remember when.

Beautiful Wil

Overwhelmed: Discovering a New Landscape with Down Syndrome

We walked down the hallway of the church, where the meeting was being held. Matt held the baby carrier, swaying slightly with the gait of his walk. It was somewhat dim in the hallway, Matt and my footfalls echoing off the walls. It was evening and the congregation had long returned home from the morning’s service. Though this was the first time we had set foot inside this church, I imagined the vibration of the organ’s music under my feet, the choir in white robes—a bright satin sash of solid color draped diagonally across their chests. White candles being lit, the rise of the preacher behind the pulpit, singing along heartily with his choir–-his flock forgiving his tone deafness for his heart for his Lord.

The sound of voices ahead broke the reverie of the imaginary church service in my mind. The mind is a master of distraction. For that brief moment of choir-filled distraction, I was thankful. My mind had been a swirl of unanswered questions since our son was born just over a month ago. I felt I was living in some kind of surreal dream. Thoughts swirling like Picasso clouds above my head. A cloud is a cloud, and yet, different.

Matt and I followed the sound of voices and found ourselves in a very typical church classroom. Spacious, rectangular, utilitarian. An oblong table had been constructed with two or three long tables pushed next to each other on each side of the room, with one long table connecting the ends of both sides. The tables were lined with chairs. No one was sitting. Women stood around the outskirts of the table, and a few men (I was relieved to see for Matt). The women, and men, were clustered in small groups of four or five. But they didn’t stay in their groups. They would mingle and move around from group to group. There was a sense of ease about them—they all knew one another.

To the far right of the room was an open area. About ten children ran around laughing and playing. Tears started streaming down my face. I couldn’t even place emotions to what I was feeling, it was all jumbled up inside of me. If I had to scoop it all up in my arms and label it, I’d call it “overwhelm.” I was “overwhelmed.”

There were a few adults in this area too, chatting with one another, playing with the kids, or redirecting a child from taking off to a door. It all seemed so normal, but it wasn’t.

“Hi, have we met before?” A woman was standing in front of me.

“Oh! Um, I’m sorry, I just…um, we are the Taylors. I’m Christie. This is my husband, Matt, and um, this is our little guy, Wil. He’s just over a month old now. We have twin girls too. They are home with my mother-in-law right now.”

“Very nice to meet you, I’m so glad you came,” she said, and put her arm on my shoulder. “Let me introduce you to some parents.” When things don’t feel normal inside, the simplest normal responses are breathed in deep like the fresh air they are.

I don’t remember all of the people Matt and I met, but we met almost everyone in that room. The common theme, over and over was, “yes, this is a challenging journey, but a very joyful and gratifying one. Though you may not see it now, you will. I promise, I promise.”

I didn’t see as far into the journey as they did, but their promises were my beacon. Though I didn’t grasp the full meaning of their statements, I could now see beyond the blur surreal clouds I was living in, heavy with question marks.

Soon, the meeting began and we all sat down in one of the chairs that lined the oblong table. The majority of the meeting was about learning styles for our kids. Before Wil had even reached 2 months old, I discovered that day that our kids with Down syndrome are mainly visual learners and math tended to be the most challenging subject. I don’t remember many other details about the sit-down portion of that meeting.

However, I did take home one key element–questions are good, but you can also get too far ahead of yourself. I wanted to know everything, right now. I wanted those funky, surreal clouds to disappear and the answers to make themselves known. And they would, in time. In time I would learn about Wil’s math skills. In time I would learn about Wil’s visual learning. But right then, I realized that what I most needed was having my feelings validated. For someone to say, you know what, I was there too. For someone to say, yes, you have a beautiful baby, but it’s also ok to feel sad, to feel scared, to feel like you don’t know what is happening. For someone to say, we have tried to decipher the same Picasso clouds too, and we have walked through them, and we promise, and promise again, the sun is shining on the other side. It may be a Picasso sun, and you will appreciate this type of sun more for having known the Picasso clouds.

Time is hugely discomforting as you wait for answers. And that is exactly why time is also a healer. Some things must happen with time. With experience. With day-to-day learning. Living in the unknown is an unsettling place to be. I thought knowing the answers would heal my pain. But it was the time with my son, and experiences with my son, that opened my eyes to the beauty of our new landscape.

On the last Sunday of September each year, I walk into a big park. Some years there is sunshine. Some years there are clouds. And some years there is rain. But every year, you will find multiple volunteers assembling long rows of tables lined with chairs. A big truck will pull up and unpack banners, balloons, t-shirts, food trays and such. Another big truck will arrive with a stage and band equipment. Once the stage, instruments and speakers are set up, the music begins to play. There are many spare instruments laid out for anyone who would like to play with the band.It doesn’t take long before a huge group of kids and adults with and without Down syndrome are dancing and playing with the band. There are multiple families and friends clustered around the stage. They mingle and move around and talk with one another. There is a sense of ease about them—even if they don’t know one another, they all have a common bond that brings them together.

This is a surreal dream. One that I now can’t imagine not living in. Those funky Picasso clouds and sun I once wondered at, are our normal. The promises I held so tightly to those years ago did come true. Time, experience, and support truly are healers. If I had to scoop it all up in my arms and label it, I’d still call it “overwhelm.” Overwhelm of joy, gratitude, fortitude and community.

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You Don’t Need to be Special to Raise a Child with Special Needs

“To raise someone with special needs—it really takes someone special to do that.”

What does that mean exactly? Did I need a certain number of qualifications to be certified as special? Or was there some checklist I filled out? Who does the interviews anyway? I’m really confused as to how I qualified. I mean, I didn’t ask for this. But I do have a son, and I love him. Does that make me qualified? We might take a different route sometimes. So is that it? But don’t you take the routes that you need to when you love somebody?

If only those of us who have passed some invisible test raise a child with special needs, when will there be acceptance? I won’t deny the challenges are there. I won’t deny that many need to rise to an entire new level of dedication. And I do revel in the inspiration I derive from other parents who do rise to such levels. But when it comes down to it, are any of us qualified as more special, because we are doing what we need to for the love of our children? Isn’t that what any parent would do? Would I do less for my child with special needs just because that journey looks different?

I was talking to a mother who has adopted multiple children with special needs. She gets asked all the time how she does it. Her answer is: “We just do it. Anyone could do it.”

There is a teenaged girl on our Challenger baseball team. She is in a wheelchair and has very little function of her arms and none of her legs. Her mother stands over her daughter’s wheelchair at home plate, wraps her daughter’s hands around the bat, and they both hit the ball as it’s pitched to them. Her mother then grabs the back handles of her daughter’s wheelchair and makes an all-out sprint to first base. The mother and daughter both laugh on their way. (you can’t help but laugh with them) When the next batter comes up, while the mother and daughter wait at first base, the mother will make conversation with her daughter. Her daughter, who is non-verbal, will make head nods or noises in response. They talk back and forth this way until the batter hits the ball. As this is Challenger baseball, and the kids all have varying levels of abilities, it may take some time before the ball is hit. Once the ball is hit, the mother once again makes a mad dash with her daughter, both laughing, to second base. This goes on until they make it to home plate. It’s a joy to watch.

Do I find this situation inspiring? Absolutely. Do I think this mother is someone special? You betcha. But, here’s the thing: this is their normal. This mother did not pass some kind of test or interview to be qualified as special. This mother is doing what she does because she loves her daughter. Her journey quite likely looks different than yours and mine. Her journey may be more challenging than yours and mine. But she loves her daughter just like you love yours. This is the way they have fun and connect with all of the capabilities she and her daughter have. Isn’t that what we all do in our own way?

The challenges may be higher, and the situations may look different, but when it comes down to it, we are all parents who love our kids. The love for our kids is special, and it lives inside of all of us. Not just a select few. We are all doing the best we can, with the capabilities we have, in the villages we surround ourselves with.

We just do it. Anyone could do it.

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Life with Down Syndrome: Never a Dull Moment

Last night, Katherine had Crossfit at 5:30pm, and during her hour there, Elizabeth, Wil and I grocery shopped. I wasn’t feeling that well (some winter bug), so wanted to make it a quick visit. We picked up the necessary items for dinner, then got into the grocery line. The line was quite long. As we waited in the grocery line, Wil spied a Sprite in the cooler.

“Look, Mom, Sprite!”

“Yes, Wil, you love Sprite.”

He started to walk toward the cooler. I put my hand on his shoulder to stop him.

“Not tonight, buddy. Remember, Sprite is your reward for riding the bus. If you want a water, I’ll buy you one. Would you like a water?”

“No, Sprite.” <of course>

“Wil, if you’d like a drink, water is your choice. We are saving Sprite as your reward for riding the bus after school.”

“Yes, mom, I ride the bus.” He said this very seriously. We’ve had instances where Wil refuses to ride the bus. It’s typically when he is having a tough day for any number of reasons. It’s a way for him to have control of the situation. But his teachers and I want to develop this independent habit of getting on the bus and riding it home every day. When he does ride the bus, he feels great pride in his independence. Though I’m not a fan of soft drinks, right now I’m going with the “whatever works” policy. And what works is his knowledge of a Sprite waiting for him in the fridge when he gets off the bus.

“Yes, you do ride the bus, Wil, and I’m very proud of you for doing that. Sprite is for after the bus. Tonight, your choice is water.”

He pondered this for a moment. Right now I could tell he was on edge. In these situations it was very possible that he would decide to dig his heels in about the Sprite. Which means he would go for the cooler against my protest. If I held him back he would sit on the floor on the spot and refuse to move. If I tried to move him he would kick or push me away. He’s getting too big to pick up, but if I did that, he’d get extremely upset and cry. It’s a very sad cry. A sobbing, body shaking kind of cry. It’s more than not getting what he wants. It’s about feeling out of control of his situation.

I leaned into Elizabeth and said quietly, “If this starts to blow up, I’ll give you my keys to walk Wil to the car.” She nodded knowingly.

“Wil, how about we take a walk and see what kinds of water they have? Elizabeth, would you mind waiting in line while Wil and I pick out a water?”

“Sure,” she said.

Wi agreed, so we walked across the numbered aisles and their accompanying coolers until we found one with bottles of water. He chose the bottle of water that appealed to him and we walked back and met up with Elizabeth in line. It was all gloriously uneventful.

If Wil refused and it turned into a full blown plop-on-the-floor-on-the-spot-and-not-move situation, our best choice is to wait it out. The last time we went to the grocery store, I gave him a choice of whether he wanted to go or not. It was the weekend, so Matt was home. Wil said he wanted to go. However, when we arrived, he refused to get out of the car. Elizabeth offered to wait with him in the car while Katherine and I went in to shop. I don’t always know the reasoning behind his refusal. Sometimes he’s simply tired. Sometimes there is something about the situation that overwhelms him. Sometimes it’s a matter of exerting his independence. A friend gave me a technique where Wil and I would count back from 10 together and then make a new choice. That worked at one point, but does not work now. Sometimes I can reason with him. Sometimes I can’t. We live a life of “sometimes” and “whatever works” with Wil. Yet, even though it sounds contradictory, consistency is a must when responding to Wil. I can’t say yes to a Sprite one time for Wil, and then not another. That’s extremely confusing for him. So though I live in a “sometimes” and “whatever works” with Wil, I must reply in consistency the best I know how.

It’s important to give him the time to make a choice– whether he makes that choice by sitting on the floor, staying in the car, or walking to the coolers in the grocery store. Wil requires extra time to process what his next step will be, and every single one of us has the need to feel we have choices. Rush him and you are asking to set yourself back even further.

Last night, I found his decision to walk with me to the various coolers looking for water to be a sign of maturity. He was thinking beyond immediate gratification. He reasoned through his choices and valued the meaning of a reward in the future.

Milestones with Wil are rarely smooth to emerge. They take a lot of patience, thought and trial and error. So when they arrive like last night, they are never overlooked or taken for granted.

I was recently told by someone that they enjoy my zest for life. Situations like last night are exactly the reason. I was standing in line at a grocery store when all this happened, for goodness sakes. How mundane can you get? Yet, in this grocery line, a piece of magic happened. A milestone emerged. Life can never be mundane for me, thanks for the eye-opening life with Wil.

I know Elizabeth and Katherine see this too. I have no doubt it’s hard for either of them to have the patience they do with their brother. This level of patience with his “sometimes” behavior applies to everywhere we go. But it’s also their norm. It’s just what they do. Elizabeth has said to me on a number of occasions, “I just don’t understand why people can’t accept people just as they are.” Because that’s what she does, every single day.

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