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No Words to Describe the Words that Do

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Wil was busy packing his backpack. Then he walked up to me and told me what he was doing and walked out the door. I didn’t understand fully what he said. So I watched him walk down the lane of our back field. If he turns right, that means he’s going to the river. If he turns left, he’s collecting sticks. He turned right.
I threw on a coat and gloves, hopped on the 4-wheeler, and sped down the lane. I hopped off and started making my way from our property to the woods.

But, before I reached the woods, there sat Wil – cross legged in the grass. His backpack was open, the soccer ball he packed had rolled out. In front of him was a spiral notebook. He held a pen in his hand and had written one word: Ashley.

“Hi Wil.”

“Hi Mom.”

“Whatcha doing?”

“Mom, look.” He started writing.

“Ashley summer? Yes, we’ll see Ashley in the summer.” He nodded and continued writing.

“Swimming with Lila? Yes, you’ll have fun swimming with Lila.” He nodded then wrote again.

“Eating? I know you love to eat!” He laughed and wrote again.

“With Mom and Dad. Yes, Wil, that’s right.”

“Mom, look.” And he wrote “I love you.”

“I love you, too, Wil. Very much. I’m also very proud of you.”

He smiled at me, and signed his name.

“I’m cold, Mom.”

“I bet. I’ll give you a ride home.”

Words can’t describe. ❤️

This Is How We Do

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This morning I said to Wil, “You have school today.”

Wil was sitting criss-cross applesauce on the couch. He had his lap desk balanced on his legs, upon which was a plate and his breakfast sandwich. Mickey Mouse Roadster Racers played on the TV.  Wil turned his head to look at me, careful to keep the lap desk perfectly balanced. With his mouth full of breakfast sandwich he yelled out, “Noooooo!”

“Oh, wait, wait, sorry, I didn’t mean you are going back into the school today. I meant you have your Google Classroom call today. It’s Monday. I thought you may have forgotten since we haven’t had a call since Thursday.”

“Oh, ok.” And he resumed chewing and turned his attention back to Mickey Mouse Roadster Racers.

In a way, I was relieved by his immediate refusal to go to school. In the beginning of this pandemic situation, Wil was very upset he wasn’t going back to school. He wanted to see his friends. It was also very close to Spring Break. He then thought it was Spring Break, but the problem with that is we were going to Florida for Spring Break. We cancelled our flight due to the pandemic. As with any change in schedule for Wil, we really talk it up so he’s prepared. We had been talking about the Florida trip to see Grandma Leigh and Grandpa for quite awhile. How he would swim every day with Grandpa. How he’d go for walks with Grandma Leigh. Everything we had talked up over time, we now had to repeatedly break down in explanation.

Wil misses his friends a lot. Zoom calls are both helpful and hurtful. He loves seeing his friends, but then he misses them more when the calls are over. So we decided we’d make a plan. A plan to see his friends in the summer. That way he had something to look forward to. Now, if it’s a warm day, he asks me if it’s summer. We look at the calendar and take note that it’s not summer yet, but every day we are getting closer.

I’ve been lax with Wil on schoolwork during this time. We have been very active outdoors. In many ways, Wil is an old-fashioned kid. He enjoys and learns most from functional movement. He’s very observant of what is around him. I’m always learning when I take walks with Wil. He doesn’t miss anything. He loves collecting sticks so he takes note of different types of bark, how two sticks sound hit together (one more hollow than the other), how certain sticks break and others are strong. He truly does take time to smell the flowers and take in what is around him. If there is a sign to read while outdoors, he reads it aloud to me. We were watching the movie, “Onward” last night, and there were a written signs and notes. He read all of them. We’ve had a natural learning environment, of sorts.

I’ve made him aware school work is to be done, but I haven’t forced it or created a strict schedule. As the beginning of this situation was so confusing to him, getting Wil to sit down to homework was a long stand-off.  I weighed the checks and balances and decided at that time, it just wan’t necessary to have a stand-off at that time. We would take our time and find our way through this. I let him know what school work was available to do, and then he chose which options. In fact, one night at 8pm, he looked at me and said he wanted to do school work. It’s not exactly what I wanted to do then, but I wasn’t about to turn him down. So he did about 30 minutes of school work and then he went to bed. For some kids, a strict schedule brings security. For some kids, if you get off a schedule you’ll have a near impossible time getting them back on. It’s a very individual process. I decided we’d do our natural learning and then the time would reveal itself when more of a regular schedule was needed.

There are memes swirling around on social media from Phd’s in psychology about it being ok to be lax with school work right now. That it’s good for your mental health. That we as parents have a lot going on and we are not teachers. And conversely, there are memes swirling around from other Phd’s stating statistics on the learning our children will lose if we don’t stay on a schedule at home. They are likely both right. But here’s one thing I’ve learned from raising a child with special needs. There is no “how-to.” It’s, “this is how we do and maybe it will work for you too.”  I’ve found taking a deep breath, stay focused on the goal, and rolling forward in our own timing is what works best for us. Suggestions are great. But be careful with assumptions that are made with those suggestions.

I’ve seen it said that this situation is the same for our kids with special needs, that we are all confused. I’d agree we are all confused, but I don’t agree it’s the same. I believe that by saying it’s not the same, that’s interpreted as a bad thing. But it’s not a bad thing. It’s just different. I’ll never forget when I met a school psychologist and he said, “When I was in school for this job, I heard people with Down syndrome were stubborn. And I thought, well, so what? Lots of people are stubborn. Then I started working with people with Down syndrome. And I realized there is a whole different level of stubborn.” We both laughed at that. Because it’s true. It’s not bad, it’s just a different. And those differences don’t have manuals. Ask any special education teacher or parent. There is no true “how-to.” There is “this is how we do and maybe it will work for you.”

So this is how we do–Step 1: A loose structure of time outdoors mixed in with chores, some reading or online work, have been effective. This has kept the momentum rolling forward. However, with Wil’s reaction to going to school this morning, and with our day to day life, I’m now seeing that Wil has begun acting less confused and disappointed about all of the changes in his life. He’s begun to settle into a new normal. Though Wil still wants to see his friends, in person, and he still wants to go to Florida, he’s come to terms with our current situation. It’s now time to schedule blocks of specified school work. So this is how we will do–on to Step 2. 

When Wil finished his breakfast, he set his lap tray aside and walked behind the chair I was sitting in reading. He leaned his chin on my head, and wrapped his arms around me. He took a deep breath in and said, “Ahhhhh, what a beautiful day.”

Let’s all take a collective deep breath with him, and go on with our day, rolling our own way. This is how we do.

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Play, Pray and Don’t Say Beer at School

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I ran into Wil’s room and started cheering, “It’s Friday, it’s Friday, it’s Friday!”

He rolled over, giggled, and pulled the covers over his head. I put my hands on his back, and pushed down, then released, pushed down, released, over and again, bouncing him on his bed, singing, “It’s Friday, it’s Friday, it’s Friday!”

He laughed, craned his head up to look at me and said, “Ok, ok, ok, Mom, just calm down.”

“I will if you get out of bed.”

Still laying on his stomach, he scrunched his body up, his tushy sticking up in the air. I gave it a swat and said, “Get your little booty out of bed.”

“Look Mom, I’m an inch worm” and he wiggled on the bed.

“You are a very cute inch worm. And you are going to be a late inch worm if you don’t get dressed soon.”

“Ok, Mom, hugs.” He sat up and reached out for a hug. As I leaned in to give him a hug, he bear hugged me. I lifted him up and out of bed. He curled up his legs, so his feet wouldn’t touch the floor. I felt my neck and back sinch up, and leaned him back over the bed.

“Dude, you are not little anymore. You can hurt Mommy doing that. Ok, up and at ’em!”

“Huuuuugs.” I hugged him again, then he laid back down in bed.

“Wil, up, up, up!”

“Oh, Mom, too much energy. Hugs.” I hugged him again, and pulled him up.

“Ok, Mom, go.”

“You promise to get dressed if I go?”

“Ugh, yes, mooooom.” From a playful inchworm into an irritated teenager in seconds.

We decided what he wanted for breakfast– “Mac n cheese?” “No.” “Sandwich?” “No.” “Eggs?” “No.” “Oatmeal?” “Yuck, Moooom.” “Ok, hot sandwich?” <pause> “Yes, and tomato soup.”

As I left his room to make his breakfast, I pulled the door almost shut, so I could peek through the crack to make sure he was getting dressed. After putting the sandwiches on the stove, I quietly walked up to his room and peeked in the crack of his door. He was talking to himself about his outfit. He always puts his pants on first, then his shirt. If I’m ever helping him get dressed after his swim lesson, and I forget this rule, he looks at me like I’m a crazy person, then says in a very matter of fact way, “Pants first, mom, then shirt.”

Wil always has a theme in mind when he gets dressed. On Monday, he emerged from his room, threw his hands up in the air and proclaimed, “Grey Power!” He, of course, had on a grey hooded sweatshirt with grey pants. He also happened to match the winter sky that day. I thought, that’s one way to make the most out of a grey day. Especially on a Monday. Unfortunately, even though that day started on a high, it ended on a low. His team and I weren’t sure of the triggers, but he refused to work in his afternoon classes and I picked him up after school rather then him taking the bus.

Today he walked out of his room with a Luke Bryan concert t-shirt his Aunt Carrie bought him. “Look at me, Mom!” (Last night watching Jeopardy, I said to Wil, “if they had Luke Bryan as a category, you would win.”

“Really, what?” He ran up to the television, mistaking my
comment for Jeopardy having a real time Luke Bryan category.

He yelled out, “Kill the Lights!” “Here’s to the Farmer!” “Strip it Down!” “M-O-V-E!” “Drink a Beer” then, under his breath, “No, don’t say that at school. Don’t say beer at school.”)

Wil sat down to eat the breakfast I made him–two warm ham, cheese and spinach sandwiches on whole wheat buns and bowl of tomato soup heated to a lukewarm temperature–he doesn’t like anything hot.

“Which shoes do you want today, black or brown?” This is always a consideration each morning and he enjoys making this choice. The black shoes are his tennis shoes, the brown are a little dressier. Today he chose brown, even though he wore sweatpants. His Luke Bryan shirt must have had him feeling fancy.

When it was time to go, he still had half of one of the sandwiches left and some soup. Occasionally this happens, I believe on purpose, because he wants to bring some of his breakfast to school. I put his sandwich in a baggie with a plastic spoon, and poured the remainder of the soup into a thermos.

He pulled on his backpack, grabbed his baggie and thermos and we were off. He sang Luke Bryan songs the entire way to school. (When I’m driving by myself, I can’t listen to a Luke Bryan song. It’s lackluster without Wil’s backup.)

When I brought the car to a stop in front of the school, Wil bolted out with a quick, “Bye, Mom” and in his low muscle tone way, he ran without much bend in his knees, moving slightly side to side, his backpack bouncing on his back, baggie and thermos in hand. I sent up a prayer for his good spirits to continue.

Every day is a process, with or without a playful start. It’s fun when kids are younger, but now Wil is 13 years old. In many ways I’m thankful for his continued youthful spirit, and in other ways the process gets tiring after so many years. His independence is growing in leaps and bounds, yet still, he requires lots of encouragement to get on with his day and with extracurricular activities. I’ve tried to rush him, and it backfires each time. In fact, a little reverse psychology can go a long way. I used to say, “Quick like a bunny!” but now I say, “Slow as a tortoise.” He’ll start slow, find it to be funny, then get on to the activity.

While a playful start doesn’t guarantee a good day, my own personal calculations show a sharp rise in success with a playful start. So I play the numbers, inch by inch, each and every day. Once he bolts out the car door, in the mix with many other kids and experiences, it’s anyone’s guess as to what may trigger him to turn the day upside down or flip it back around and land right side up. That’s when a good team at school and prayers come in handy.

Give us this day our daily hot sandwich and tomato soup, as we start our day in play, may we keep our day right side up, and remember not to say “beer” at school. Amen.

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Twist, turn, kick. Sputter. Smile.

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His swim instructor was showing him how to roll over from his stomach to his back in the water. He’d start, face down, floating, then twist himself around. As he made the twist, he’d flail slightly, body twisting hard, with a little kicking to get himself all the way around.

He’d pop his head to the surface, his clear-lensed wide-eyed goggles—he affectionately calls “Frog power” when he puts them on—showing wide eyes underneath. His breath sputtering, spitting out water. Then catching his breath, laying on his back, realizing he succeeded, a huge smile spread across his face.

Again, he’d twist, kick, turn his body around. Low muscle tone making the task challenging, his observing mom thankful for the important core strengthening that was happening. Again he surfaced, sputtering, eyes wide, spitting out water, catching his breath. Then the smile. Big. Proud.

Again, he’d twist, turn, kick. Sputter. Smile.

Again, again, again.

Each time, the twist would come a little quicker. The sputtering less. Soon, the smile was already there, shining underwater, revealed as he completed the turn and lay on his back. Floating.

And his observing mom found herself smiling too, thinking isn’t life just like that?

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Slippery Rocks Ahead!

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“Slippery rocks ahead!” It was a dark, pre-dawn August morning in Michigan’s Upper Peninsula. Headlamp lights bounced off the rocky trail. It had rained the night before, so the trail was slick. The jutting rocks and roots mixed with the elevation proved challenging without throwing in the darkness and slickness. Even though I had read about this trail and watched a video of the race, I was only partially prepared. Traversing the trail with my own feet was the only way to truly be in the know.

I have made no hidden remarks about puberty with Wil mixed with Down syndrome. I could have guessed what was ahead, I had read enough and prepared myself enough, but there are certain things you simply need to experience to fully be in the know. I talked to Wil’s teacher consultant for ideas in working with his new behaviors associated with puberty–she has worked with multiple children with multiple diagnoses. I noticed the first thing she did was ask questions. Lots and lots of questions. I respected that greatly. She wanted to know all about Wil and his behaviors. She didn’t make assumptions based on him having Down syndrome. Though she is someone “in the know”, it was important for her to know and understand Wil.

The other morning, Wil was being extremely willful. It took him a full 30 minutes to get out of bed and ready for school. The pattern continued through the day into the evening. He didn’t want to go to Katherine’s CrossFit class that night, but Elizabeth was at basketball, and Matt was out of town, so going to CrossFit was his only choice as he is not able to stay home alone at this point. Katherine and I finally convinced him to get in the car, with the promise of a stop at Bigby Coffee for a cup of hot chocolate with sprinkles. I took a deep breath when we got in the car, played some music, and all seemed to be going well. After dropping Katherine off at Crossfit, Wil and I headed to Bigby Coffee. I ordered his hot chocolate and he drank most of it. We shared a conversation, with a few pauses and prompting. When it was time to pick Katherine back up from CrossFit, he refused to leave. Again, with lots of prompting, I finally got him up and into the car. When we arrived home, he had some time to watch tv and then go to bed. Again, he refused. Thankfully, we didn’t have anywhere to go so I walked him to his bedroom and told him he could stay in there until he was ready to put on his pajamas. This is usually a successful tactic as it gives him time to unwind and feel back in control of his situation. It can take anywhere from 15 minutes to an hour. Well, it took an hour. By the time I got Wil into bed, I wanted to go to bed too I was so exhausted from the constant negotiations and patience required the entire day. Though I knew I would have fallen asleep the moment my head hit the pillow, I felt the need to unwind and feel back in control of my situation, too. So I sat down and read a book, as exhausted as I was, until I felt calmed down, then I went to bed. And indeed, I fell asleep the second my head hit the pillow.

When Matt returned to town, I told him about this experience. How the entire day, Wil had been willful. How I had tried to get him to communicate, but he was being obstinate with anything I did.

“Hmm, sounds like a teenager to me,” Matt said.

That next week, the kids had Friday and Monday off for President’s Day weekend. On Thursday morning, Wil popped out of bed singing, “Friday, Friday, Friday!”

“Actually Wil, it’s Thursday.” I replied.

“No, it’s Friday, Friday, Friday!” He continued singing.

“Huh, you know, you are right. In school days, this is your Friday. Hooray Friday, Friday, Friday!”

On the flip side, Tuesday was not so celebratory. After having Friday and Monday off, Wil was well out of his routine. He refused to get on the bus after school on Tuesday and even took off outside for a brief period. His teacher was on it, rallied him back in, and when I entered the school office to pick him up he was fairly cheerful, no doubt for his bout with fresh air and freedom.

“Wil, you were all excited to ride the bus home when I dropped you off for school this morning. What happened?”

“Mondays are hard, Mom,” he said. I almost said it was Tuesday, then caught myself. In school days, it was his Monday. And yes, I agree, Mondays can be hard.

Refusing the bus ride home on Mondays is more the rule than the exception. If I were to graph his week, it would be an upward slope. As the week goes on, he gets back into the groove of his routine, and though no day is smooth sailing, his days grow progressively smoother and more productive. Wil earns stars for doing work in each of his classes. Wil earned a mere 4 stars that Tuesday, but doubled that count by Thursday. On Friday he promised to uphold that double count of stars. And that he did. Friday, Friday, Friday!

When Wil was a baby, I read multiple books about Down syndrome. First books about babies with Down syndrome (which is an actual title of one of the books) up to books about teenagers and young adults with Down syndrome. I wanted to put myself in the know. I needed to put myself in the know. There were much too many unknowns in the distant future when I learned of Wil’s diagnosis. Reading books helped put me in the know–or so I thought. I really was only partially in the know. Because you don’t know what you don’t know until you do know. Now that I know, I know there is much more knowing to come.

When I trained for the 50-mile trail race in Michigan’s Upper Peninsula, I approached it quite similarly. I read as much as I could about ultramarathons. The terrain I was used to in the lower Peninsula was much different from what I would experience in the race. Where the race’s trail was rocky with steep elevation, the roads I was used to were sandy with rolling hills. I would also start the race in the dark. I wouldn’t be able to see what was ahead of me except for what was illuminated in the small, thin beam of my headlamp. I wanted to be in the know. But until I hit that trail with my own two feet, I was only partially in the know.

At the beginning of the race, we runners were all backed up along the single track trail in the dark pre-dawn with the calls of “Watch out, slippery rock ahead!” We made our way gingery, step-by-step-by-step, careful not to twist an ankle this early in the race. As the dawn spread, and the view of the trail opened up in front of us, we proceeded more confidently, and found the paces we had trained for. Even so, there were many surprises along the way. Along the shore of Lake Superior, I made good time. The ground was a soft bed of pine needles. I enjoyed the view, the soft footing and the flatter terrain under my feet. When I hit Hogback Mountain, I stopped and looked up at the tall climb. I had read about this part of the race, but now I was about to experience it. I was on hands and knees, climbing, crawling, scaling looking for the little orange flags stuck in a crevice, that led the way, so I wouldn’t make a wrong turn. I climbed next to others, and when we’d spy a flag we’d call out, “There’s the flag, this way!” And we’d creep and crawl until we found flatter footing and took off again.

As much as I value preparation, no one could have told me how it felt to know the soft bed of pine needles under my feet. Then, to come to an abrupt halt of a hard rock hands and knees climb, progressing at a snail’s pace, eyes peeled for a sign I was heading in the right direction–all the while knowing, if I made a wrong turn, I wouldn’t make the time cut-off, and will get pulled from the race I trained so hard for. As such, you can’t read about a child with Down syndrome’s behaviors and expect to know what exactly they are communicating without being able to ask questions specific to that child. You can’t know the free flow of milestones being hit, closely to on time, and then bam, a mountain to scale–seeking out any flash of orange to guide you on your way. You can’t know the patience it can take, and also to fully understand when that very patience breaks, until you’ve been through it yourself—all the while savoring your journey, no matter how confusing, exhausting, or exhilarating it may be. As prepared as we may believe we are, we don’t really know until we’ve traversed the path with our own two feet.

I have learned a lot from Wil, but Wil is not a lesson to be learned. Wil is not an object of advocacy. Wil is a 13-year-old boy. Wil has 47 chromosomes and Wil is also a teenager. Wil has tough Mondays and cheers on his Fridays, Fridays, Fridays! Wil has 4 star days and 8 star days. Wil’s week goes in an upward curve quite predictably, but what happens along that curve is anyone’s guess. Sometimes it’s a protest on the basement stairs and sometimes its as close to smooth sailing as he gets. Sometimes I can navigate the journey on my own, and sometimes it takes a team. What I know about Wil is what I know now. Preparation is key, and so is the reality that tomorrow is anyone’s guess.

The only advice I can offer up to this point is there are Slippery Rocks Ahead! I can’t tell you where until I cross them myself. But when you get there, who knows, the climate may have changed and you may sail right through. Keep your head up, always work toward an upward curve, and ask lots of questions. The little flash of orange is always there to lead the way, though you may need an entire team crawling, scaling and putting one hand and foot in front of the other to find it. Mondays are hard, even if is a Tuesday, and celebrate every Friday, Friday, Friday! even if it is a Thursday. Be weary of those who claim to know the answers–only those who ask questions truly seek the answer. Labels define us, and preparation prepares us, so we feel that we may know. And yet, each day is it’s own, and each of us is our own–so we only partially know. You don’t know what you don’t know until you do know. Once you do know, you can betcha it will change.

Time

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I sat at the kitchen table, my chair turned slightly outward, toward the kitchen sink, where Matt stood, washing dishes. Miraculously, Katherine, Elizabeth and Wil were all in one of the bedrooms playing together. This is the time, I thought.

“Matt, what is it that you need?” I asked him. He stopped, holding a plate, the water running over it. He looked at me, then looked back to the plate, the water continuing to run down its surface.

I said to myself, “shut up shut up shut up. Let him think. Don’t interrupt his train of thoughts with words.” The exaggerated pause went on, and I willed myself to stay quiet. I knew the wheels were turning in his head. We had been married long enough for me to know how his mind worked.

When I was growing up, if you paused what you were saying, the person you were talking to assumed you were done with that thought, and filled the space with their words. If you weren’t done with your thought, you’d circle it back around to it, if you felt it important enough to do so. With Matt, there are a lot of pauses. He thinks through his words carefully–a phrase, a thought, and another phrase. When Matt and I were first married I didn’t understand his pauses. I assumed he was done with his thought and it was my turn to respond, and so I did. I soon learned that when I did that, Matt would not circle back and I never fully heard his full view on a subject. So now, thus understanding over the years, I reminded myself to remain quiet. I really, really wanted to hear his thoughts on what I was asking.
Though, at that the moment, as much as I wanted to hear him talk, I wasn’t exactly appreciating waiting. I was tired of waiting. I had moved on and I wanted him to move on too. But he was on one side and I was on another.

The pause went on, the water still running. I couldn’t take it anymore. “Matt?”

He looked at me. “Time,” he said.

Katherine and Elizabeth were born in June 2005 and Wil followed about 20 months later in February 2007. In the 20-month span before Wil was born, I carefully laid out Katherine and Elizabeth’s first words in their baby books. I delicately inserted their first locks of cut hair with details on their experience. I wrote out their sleeping habits, what their favorite toys were, how I enjoyed the fact that their astrological sign was also that of twins (Gemini) and what was happening in the world at large—who the president was (George double-ya), the current weather, the fashion and popular songs of the time. A detail was hardly missed—I filled in every pause. Today, Katherine and Elizabeth circle back to read the memories of their early lives.

Though those 20 months spanned an eventful time, the 72 hours after Wil’s birth threatened to hang above my head like a stagnant cloud. How could I wait the eternity of 3 days to confirm a diagnosis?

I was told it would take 72 hours for a Genetics test to confirm the suspicions that Wil had Down syndrome. This 3-day pause in time was more than I could bear. I pleaded for an answer. I desperately needed to move on and know what our situation was. The 72-hour cloud hung heavy above me–the answer was on one side of it, and I was on the other. It was a pause I could not wait out.

Finally, after much pleading on my part, one doctor confirmed that Wil had all the signs of having Down syndrome. I was given folders about Down syndrome the very afternoon after Wil’s birth. A social worker also came to visit me that very afternoon. Family members came in and cried. Though the cloud had shifted forward, it still hung heavy in front of me, blocking my view of the future. In fact, I could hardly see past today. But at least I had a definition to look at.

By the time the 72 hours came and we received official confirmation, it was simply a formality. However, I did learn that Wil had Trisomy 21– the most common form of Down syndrome. In a strange way, even though I was struggling with the diagnosis, learning of the commonality of Wil’s type of Down syndrome that day was a stroke of relief in a sea of bewilderment. Though I felt as if I was standing on an unknown island at the time, now, with this knowledge of Trisomy 21, I discovered this island was well populated. I may have been lost, but I no longer felt alone.

I tried to nurse Wil, but with his low muscle tone, he needed lots of time and attention to get the nutrition he needed. With Katherine and Elizabeth not even 2-years-old yet, I didn’t have the luxury of time to sit still, let alone to take the hours needed to help Wil nurse properly. Wil’s weight was dropping as he wasn’t getting the nutrition he needed. He would only accept bottles with the disposable nipples from the hospital. Would not nursing Wil set him back? He was already born with cognitive and physical delays. His immune system was already compromised. I asked his pediatrician how I would be setting him back if I changed to bottles and formula (A kind nurse, on explaining my situation on Wil only accepting the hospital bottles, gave me a large garbage bag full of individually packaged disposable nipples). Of course, the pediatrician said that nursing was best, but so was getting Wil the nutrition he needed. He asked me to hang on for 6 weeks if I could. That’s what I did then went to bottles with the disposable nipples and formula. I knew exactly the nutrition Wil had, and I didn’t have to spend hours trying to nurse him and keep Katherine and Elizabeth occupied at the same time. Wil was gaining weight and growing. That six-weeks of time I nursed Wil was both an eternity of patience and a blur of activity. When it was over, and I changed him to 100% bottles and formula, I didn’t realize how stressed I had been over that decision. I let out a deep breath and reveled in the pause in time, then moved on fully from one side to the other.

I began to grow a village around me. The first was Early On—an early intervention program for children birth to three years of age. I met the therapists who came to our home and worked with Wil–speech, occupational and physical therapists. These therapists showed me exercises to do with Wil. They also included Katherine and Elizabeth in these exercises. Katherine and Elizabeth were very intrigued with their brother’s therapies and liked to help out. The therapists in those early days gave me hope, even if they couldn’t give me concrete answers. I asked the physical therapist if Wil would walk. She answered that he would, but could not say when. Maybe he would be 2 years old, maybe he would be five. I sat there again, the stagnant cloud heavy above me. I was on one side of that question, the answer on the other. Though this time, there was no test that would give me a black and white answer. Time would tell. I was desperate to fill the pause. I willed myself to be patient. Finally, I could take no more. I asked the therapist again, in different ways. She could give me no concrete answer, but what she did is tell me this: “See how Wil walks on a balance beam?” He was assisted, she holding his hand on one side, me holding his hand on the other. “See how he can put one foot in front of the other, even though he’s not able to walk on his own yet?”

“Yes,” I responded.

“Well, he’s not supposed to be able to do that. But he is. Sometimes kids are expected to be able to do A and B before they can do C. But Wil, well, he does A then C. Eventually he will circle back to B. That’s just how he does things.”

So I learned to be patient in the pauses. To not fill in the spaces, but wait for Wil to do that on his own, in his own time. I delighted in celebrating that he achieved the “C” activity, even if we would have to circle back to achieve the “B” activity. Progress was progress, no matter how many times we had to circle back to move forward.

A lot of time has passed since those early years. Wil just had his 13th birthday. Wil still puts “C” before “B.” Some days make sense and some days we can’t make sense out of them. The days we are deciphering a certain behavior he is communicating can be an eternity, while the breakthrough on the other side is a clear celebration. It’s easy to step into a situation, point fingers and say, she should have done this, or he could have done that. But though what is deemed as “right” is not always what is right for our situation. That is exactly why I love my special island of Trisomy 21 families. We know what works today has a really good chance of not working tomorrow. Progress is progress, no many how many deep breaths you have to let out, or how many times you have to circle back to go forward.

This journey takes willing yourself to shut up to open the door to hear where someone else is coming from. No matter how long it takes. It also takes pleading your case so your view is heard. This journey takes filling in the pauses with all the proactive energy you have. It also takes patience and allowing time to unfold in its own time. This journey is about jumping ahead. It also is about circling back. This journey is about letting go of guilt when what is right is not always right for you. It’s also about forging forward for what is right, and stepping back when you need to. This journey is about celebrating one step at a time, as jagged and zig-zaggy as the road may be. I can’t promise that this journey will be pretty. But I can promise that this journey will be worth every second of your time.

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Step One is One Step

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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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