struggles

The Same, but a Little Brighter

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You know that “brillance” enhancement on your iPhone photos? How your picture is the same, but a little brighter? That’s how it is raising a child with Ds. There is a lot that is the same. So much that is the same. Then there are the experiences that take longer to emerge; I like to call it active patience. You try and wait, you try and wait, you try another tactic and wait. You continue on with active patience. Then it happens. It all comes together. Even though you’ve been trying and waiting, it feels like this big, magical surprise gift. That’s what makes it the same, but a little brighter.

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Navigating Methods of Plane Sailing

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“The gate is closing in four minutes, ma’am.” An airline representative said to me as I sat on the floor with Wil.

“Yes, thank you. I just can’t get him up. I’m trying.”

Katherine was standing by our bags and Elizabeth and I tried to lift Wil up into a wheelchair to roll him onto the flight. When an 110 pound boy with low muscle tone doesn’t want to move, its like lifting an extremely heavy noodle. Once you do get him up, he seems to fold within your hands and slip out.

I saw him falling apart about thirty minutes ago. When it started in his mind I can’t tell you. I saw his shoulders start to slump, then he muttered to himself. That was not a good sign. When Wil gets like this he needs time to unwind. My guess was he was becoming overwhelmed by the prospect of going to Florida. It’s not that he didn’t want to go, it was the opposite. The anticipation of it all was overwhelming him. He’d see my parents, he’d swim in their pool, he’d go to the beach. He loves my parents dearly and the thought of swimming every day was a dream. Especially after being homebound for so long with the pandemic. But all of that anticipation was building to the perfect storm. Unfortunately I only had four minutes left to quell it.

When I saw the first signs of Wil starting to shut down I enlisted Elizabeth’s help, as she jokes around with him a lot and can typically turn his mood around. She already saw what I did. She knew something was happening with Wil and knew it wasn’t a good sign. Katherine was reading a book, and I explained what I saw happening. I asked if she wouldn’t mind standing by the bags if things didn’t go well. She agreed.

Elizabeth and I had tried to perk Wil up with jokes and talking about seeing Grandma Leigh and Grandpa. Through all this, the line of people getting on the plane shortened. I knew our time was running out. And with Wil, time is what we always need. He slumped down further. I knew if he sat on the ground we’d likely not get him up. I scanned the room and saw an empty wheelchair owned by the airline. Likely someone had used it to board first class and now no longer needed it. I quickly ran over to grab it and wheeled it next to Wil.

“Look Wil! Do you want to go for a ride?” He looked up then looked down again. Nothing I had in my arsenal was working. We’ve been down similar roads before. Again, time is what we needed and it was quickly running out. And then, he sat on the floor. I didn’t want to do this, but I could think of no other options.

“Elizabeth, we have to lift him up. Can you help me?” And so, the two of us lifted him and he adamantly refused. The passengers that were still in line began to stare. They knew nothing of the build up of this moment. All they saw was the force being used. I felt sad. I felt anger. Not at them, not at Wil, but at myself. How could I, the mother, be forcing my son against his will. What message am I sending to Wil? What message am I sending to his sisters? What message am I sending to the outside world? That force is the answer? But that was the problem, I didn’t know the answer. I simply didn’t know what to do at that point to get Wil on the plane. I knew he needed time to process. I knew he needed time to tell me what was upsetting him. I knew, with time, he would willingly stand up on his own and board the plane. The problem was that the plane would be long gone with the time he needed. And so, I resorted to lifting him into the wheelchair, which he would then slide out of back onto the ground.

At this point I was sweating. I was frustrated. I was on the verge of tears. I racked my brain for options. I thought of sending Elizabeth and Katherine on the flight without myself or Wil. They were almost 15 years old and they’d been on this flight many times. I’d find another flight for Wil and I to Florida. But when would that be? I also knew how incredibly upset Wil would be when the plane left without us. But I certainly was not going to penalize Katherine and Elizabeth by making them stay back, too.

As these thoughts swirled and Elizabeth and I continued our attempts to get Wil in the wheelchair, one of the women from the airlines walked over and bent down to Wil’s level on the floor. “Can you get in the chair –” she paused and looked at me.

“Wil,” I said, “his name is Wil.”

“Wil, can you get in the chair?” He looked up at her. She was a break in his pattern. He wasn’t fighting me and he wasn’t fighting his sister. This was a fresh, new face. I took a deep breath full of hope. Please, please, please I prayed.

“We are going to see his grandparents. He’s very excited for all the swimming he’ll be doing.” I said to the airline representative, so she’d have more personal information to persuade Wil.

“Wil, don’t you want to go swimming? And see your grandparents? Let’s get you in the chair so you can do that.”

When Wil stood, I felt as if 100 pounds was lifted off my shoulders. And in a way, it was. Wil sat in the chair and the airline representative wheeled him to the gate. I then took the handles, and as I did, I looked her in the eyes and said, “Thank you.” She looked back at me and nodded. I couldn’t tell if she understood what was happening or if she thought I was an awful person for forcing my child against his will. I have no control over her thoughts but I do have control over mine, and I was thankful beyond measure that Katherine, Elizabeth, Wil and myself were boarding that plane together.

That is one of the challenges of awareness. It’s rarely the act of what is seen that’s the full picture. When I saw what was happening with Wil it was thirty minutes prior, and likely whatever was happening in his mind started earlier than that. But what everyone saw was the five minute breakdown. What message was received in that time to contribute or take away from Down syndrome awareness? It’s rarely black and white. It’s this process that happens over time, and though I’ve been raising Wil for 13 years, every day I’m figuring out the grey areas.
Once on the plane, Wil was back to his silly, fun-loving self. We had crossed whatever barrier was in his mind. On that flight, I was already mentally preparing for the flight home. Going back over the signs of Wil breaking down. What I could do to prevent them. For the flight back home, my mom packed his favorite snacks. I downloaded favorite movies. And I didn’t need a single one, Wil breezed through security and onto the plane without a single halt. It was all gloriously uneventful.

But that flight on the way to Florida stays with me. It’s a puzzle to unfold. And I do know it needs to be unfolded with extra time. I’m better at reading Wil’s cues, but I need to find them earlier and earlier when I know time is not on our side. Even so, there will always be those times when he shuts down and I don’t have time. What to do then, I still need to figure out. Force is not the answer. Domineering someone is not the answer. Time is the answer. Anticipation is the answer. But what if you don’t have those things? What then? I don’t know yet, but after that flight, when I do have time, that experience reinforced that I need to take it.

The day after we arrived back home, I needed to make a Costco trip as our cupboards were bare. Katherine and Elizabeth love going to Costco. We had not been there since the pandemic, so the girls were extra excited with the prospect. Wil, not so much. Earlier that morning, Wil had gone with me to the school to return his sister’s Chromebooks and textbooks as school just ended for the summer. We saw his speech therapist and he enjoyed a conversation with her. Wil missed seeing all of his teachers in person with the pandemic, so this was a real treat. He was in great spirits so I was surprised that he immediately turned down the prospect of going to Costco.

“Wil, you love their pizza. Remember those huge slices of pizza?” His answer was still no.

When we returned home from the school, he went directly to his room. As both Katherine and Elizabeth were looking forward to the Costco trip, I wasn’t about to ask one of them to stay back with Wil. So, how to convince Wil to go? I knew, in time, I could figure out what the roadblock was. And unlike the plane incident, time was on my side.

“So, Wil, why don’t you want to go to Costco?”

“Humpf.” (His favorite answer when he doesn’t want to explain.)

“Wil, aren’t you hungry? It’s been awhile since you had breakfast.”

“Yeeeeeeees,” he said and looked at me. His sense of humor was there. A great sign!

“Sooooo,” I said mimicking his drawn out “yes.” “Let’s go to Costco.” And I did a little dance.

“Mom, you are silly.” He said, laughing.

“I know, so are you. Let’s go silly.” I tickled him.
Elizabeth heard the exchange and came into Wil’s room. “Suddenly I feel very tired. I’m going to take a nap.” She sprawled out on Wil’s bed. This is a regular joke between them.

“No,” Wil said and jumped on Elizabeth. “This is not Lizbeth’s bed!” Elizabeth fake snored. “Lizbeth get up.” Elizabeth continued to fake snore and Wil bounced on her. “I’ll go on Lizbeth’s bed.” Wil got up and ran to her bed.

“Hey, not my bed,” Elizabeth jumped up and chased him.

“Yes, your bed,” Wil said laughing and running to Elizabeth’s room. Elizabeth bear hugged him before he reached her room and turned him around. They both fell down laughing on the ground.

“Ok Wil, let’s go to Costco.” Elizabeth said.

“No!” Wil ran back to his room. I thanked Elizabeth for trying, then went back to Wil’s room. I sat down next to him. He picked up his Ipad and started playing a game. I sat with him awhile. After some time and discussion over his game, I tried again.

“Wil, what’s the problem? You love Costco pizza. And it will be a fun trip.”

He was quiet so I waited him out. Then I asked him again.

“Too long of a trip, Mom.” He replied.

I remained calm and nodded my head, but inside I was doing cartwheels. He didn’t simply respond yes or no. He told me why! He told me what he was thinking and why he didn’t want to go! And all it took was giving him the time he needed. Time is both a challenging and simple answer to unravel all that holds Wil back.

Simple: give Wil time and the answers come. Challenge: I don’t always have the time he needs. And, it takes a lot of patience. Time and time again. But when the answers come, they are always worth the time. The milestone of Wil telling me why filled my heart to overflowing. I would wait to the ends of the earth to hear words like that. Every parent out there who waits for milestones to happen, never knowing when or how, and then when the milestone emerges, unplanned, unscheduled, of our child’s own will, knows this feeling of joy I speak of.

“So that’s why you don’t want to go? It will take too long?”

“Yes,” he said. And just like on the plane, where many see the one snapshot in time, and not the build-up, so was this conversation. So simple on the surface, and yet, for me to have this conversation over his “why” was a build-up in time. It was a beautiful moment. A breakthrough. An answer I had coveted and now could enjoy sharing with my son.

“Ok, how about this?” I asked. “How about we make it a short trip? Then a big slice of pizza at the end of the short trip.”

“Ok,” he said and stood up and slipped his Crocs on. No fight, no domineering. His feelings were expressed, heard and validated. Oh, sweet time how I could hug you!

I was thankful, too, that Katherine and Elizabeth were witness to the process of the Costco trip. That the message being sent was the gift of time. I told them I wasn’t proud of the incident on the plane. That I still don’t know what the right answer was. But I do know, when we have time, Wil needs that time extended to him. To unwind, to unfold, to process. How would we feel if people were always running over us with their agenda? That’s likely how he feels all the time. It not about giving him what he wants all the time. It’s about giving him the time to tell us what we wants and how he feels so we can work with that.

When we arrived at Costco, Wil wouldn’t get out of the car. I reminded him that he agreed to a short trip. Katherine and Elizabeth joked with him. Katherine and Elizabeth tickled him. Katherine and Elizabeth eventually got him out of the car. The patience these girls have with most things we do is their norm. We rarely just get in the car and go somewhere. There is always the element of time required. I expressed to the girls that I know it can be tiring to always be extending extra time to Wil, and that they are wonderful at making that extra time fun. But when we make the challenges fun, the joy on the other end is bigger. Just like the big, ol’ slice of pizza at the end of the Costco trip. Wil held his up like a king.

Elizabeth has said, “There are good days, bad days, and Wil days.” Her sentiment sums this up beautifully. Acceptance of the WHOLE. Every day is new, and I learn from each one of them. When I know better, I do better. And as Wil proved, uncovering the “why” behind it all is the joy of a lifetime, no matter how much time it takes.

I’m thankful to know ALL of the days, and my deep breath of hope is, you are too.

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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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