Lately, I’ve been thinking a lot about Wil as a young adult. Will he live with Matt and myself? Will he live independently with help? Will he have his own apartment with a friend? Wil is a very social person; he loves to swim, golf and hang out with friends. I know he’ll want to be involved in various activities as a young adult. Right now, with the pandemic, I’m always looking for ways to keep him active, healthy and interested in hobbies as there is less available. Recently, he had a virtual theater class with his Down syndrome support group. He greatly enjoyed singing and dancing with his friends he hasn’t seen for months.
Wil values his independence. He takes walks by himself in our back field with our yellow lab, Woody. He calls these walks his “adventures.” While he handles most of his self-care on his own, he does not fully appreciate the dangers of traffic and strangers. He also doesn’t understand the value of money. Over time, his understanding of finances and dangers may come. Or it may not. As I have not been gifted a crystal ball, what I can do is find ways to broaden his independence and foster his growth.
I thought Wil having time home alone with his good friend, Lila Harvey, would be a great independence booster for Wil. I asked Lila’s mom, Rebecca, if she would be comfortable with Lila staying with Wil for just over 2 hours without me home. Wil enjoys Lila’s company greatly, she is smart as a whip, and stands firm on her ground. She’s also very good at finding activities they both can enjoy; which is no small task especially for someone her age. I’m always impressed and thankful for their friendship. Rebecca and Lila were both on board.
When I told Wil he would be home alone with Lila, he looked up at me in shock, then said, “Yay!”
Wil and Lila both love music, so when Lila arrived, Wil got out his iPad and they started singing songs together. I left on that high note.
When I returned home, they were both racing their bikes in the driveway. Two pairs of mud-caked boots were on the porch and Woody was wet and muddy; his tail was a-wagging.
“Hi Mom!” Wil yelled out as he sped by on his bike. The scent of lemongrass bug spray hung in the air behind him.
“Hi Miss Christie,” Lila said, “we had a dance party then walked to the river. It was low and muddy, but we had a good time.”
I suppose in our own ways, we all tested the waters that day. Though our waters are not always crystal clear, they are good fun for jumping in and getting your boots muddy. I breathed in the refreshing scent of lemongrass hanging in the air as my son sped by at his own speed, his friend racing with him, and his dog’s tail a-wagging.
As Wil has gotten older, it’s clear he needs closer friends with Down syndrome. He has wonderful friends at school that love and support him fully. As the gap in abilities with his typical peers grows and social lives expand, Wil also needs to cultivate friendships with those whose abilities match his.
Manny’s family lives in the neighboring town, so his mother, Laura, reached out to get our boys together. Manny will be entering 9th grade, and Wil 8th.
When Manny arrived at our house, it was our second get-together. We had met at Portage Lake the previous week and a friendship was formed. Though both Manny and Wil had talked of this second get-together for days, when Manny entered our house he went to the couch and Wil retreated to his bedroom. They were overwhelmed.
I took a big sigh of relief. Why? Because this was normal behavior not for just one of them, but for both of them.
I coaxed Wil out of his room, and Laura coaxed Manny to show Wil the toys he brought. Manny won Wil’s heart by bringing him a can of Sprite to drink with lunch.
The two laughed and were silly with lunch, and that broke the ice. But after lunch, they separated again. Even this separation was refreshing to me as it’s usually Wil I’m coaxing while others wait. This day, we were all gloriously on the same page, even if Manny and Wil were apart. Manny’s older sister, Grace, was there, and she kept the conversation going engaging both Wil and Manny. Like Katherine and Elizabeth (who were at a birthday party), this is Grace’s normal, and she handles it, well, with grace.
Laura suggested a movie to start the ball rolling again. And roll the ball we did — Manny chose Hotel Transylvania 3 and we played a game where we sat on the floor and rolled the ball to each other. When the music in the movie played, that was the kryptonite to whatever was holding them back. Manny and Wil broke out their dance moves. Then Wil broke out his karaoke player and jammed to Luke Bryan while Manny jammed on his Bluetooth mic he brought from home.
After the jam session, we headed outside to the driveway to ride bikes. Manny tried Wil’s recumbent bike while Wil rode his bike with training wheels. The handles on the recumbent bike are what steer it. Manny is used to using an elliptical machine, so he was pumping the handles back and forth zig zagging around. I thought that was a smart technique. With a few more tries, he figured it out and was zooming around, even on the grass!
Then I took Manny on the 4-wheeler. He “woohoo’d” the entire time. The guy has a need for speed!
Soon it was time for them to go, and we said our goodbyes until next time. I talked to my sister that evening, and told her how great it is to have a get-together where the kids are on the same level. It’s something you just don’t take for granted.
A day full of stops, starts, zig-zags, and full speeds ahead — all the while, remaining gloriously in sync.
(Photo: Potato chip lips)
I would say this situation is hardest on Wil. He doesn’t understand as much as I’ve explained it. I’ve heard the response, “I don’t understand, either,” which I respect and appreciate. But Wil doesn’t understand what a virus is. We do know what a virus is, even not knowing all the details of this particular one.
In many ways, I’ve related this extended experience to living with Wil as an adult, should he decide to live at home. I’m the one he leans on, I’m the one he has to talk to, I’m the one to motivate his reading/speech/motor skills, and nearly 100% of his way to get to places. Many of his typical peers, in the coming years, won’t need this help and will be knee deep in their own lives. The importance of Wil making friends with those of his abilities is becoming more apparent and essential. I’ve had parents of adults with Down syndrome tell me of the limited opportunities and activities for their kids. They are their kids’ anchors and a great part of their entertainment and continuation of learning skills. I used to think, “Well, there has to be more out there for our kids.” I heard their words, but couldn’t grasp the full meaning of what they meant. While I can’t yet see through the same lens as they do, as Wil gets older I’m grasping more of what they were telling me. I’m feeling it more than just hearing the words. Please don’t misunderstand, none of us would trade this life. We love our chromosome-enhanced life. What I’m getting at is it’s a new reality for us that we have few examples of. Our kids mature and the divide grows between the typical world and our Down syndrome world.
I’ve heard the response, “No one knows what the future holds.” I appreciate respect that answer. But there are situations we grasp even if we don’t have all the details, and situations we don’t grasp simply for the reason we have nothing to relate it to.
Just because we think we understand, doesn’t mean we do…until we can feel it for ourselves. Then it becomes real.
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.
“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. ❤️
Down Syndrome Awareness = Hello, meet my child. Once you get to know him, you won’t be so scared of him anymore.
Books upon books. Blogs upon blogs. Stories upon stories. As varied as they are, the message is, Hello meet my child. Know my child. Do not fear my child.
But fear is a big emotion to conquer. Fear doesn’t allow one to look at the whole of the story, rather a very narrow and skewed portion. Only love and knowledge can broaden the view.
And so, we parents, caregivers and educators continue on. Books upon books. Blogs upon blogs. Stories upon stories. We never tire, fueled by the truth and love of our children, enabling us to see the whole of the story in technicolor view. Fear can not live there. Only love.
Hello, world, meet my child.
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.
“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.
This morning was a full-on 30 minute morning to get Wil out of bed and into the kitchen for breakfast. This is how it went:
“Wil, time to get up.”
“Good morning, Wil.”
“Good night, Mom.” He giggled and pulled the covers over his head.
“No, it’s good morning Wil.” I said as I pulled the covers back down.
“Good night, Mom.” He giggled and pulled the covers back over his head.
“Good morning, Wil.” I pulled the covers down. I gave him a hug while I lifted him up. “Do you want me to help you get dressed?”
“No, I do it.”
“Ok, it’s time to get dressed then. I’ll go make you breakfast.”
“Ok, Mom.” Then he plopped back down and pulled the covers over his head.
“Dude, you have to get up now. Chop chop!” I clapped my hands and he laughed.
“Oh, Mom. You are silly.” I did fast little claps near his face. He grabbed my hands, pulled me down and gave me a hug.
“You are sillier,” I said, hugging him back. I lifted him up to a seated position. “Ok, let’s go. So you don’t have a rushed breakfast.”
“Here, I’ll get your underwear out for you, then you pick out your pants and shirt.” I set his underwear down on the bed next to him then headed to the doorway. I turned around and he was sitting there watching me. I knew he would lay right back down when I left.
“Dude, please, let’s go. You won’t have time for breakfast if you keep up this pace.”
“Ok, ok, ok.” He said. Convinced he would truly get up this time, I left the room and came back a few minutes later to check on him.
“Look, mom, I put my underwear on.” Wil was standing in the middle of his room, his pajama bottoms and top still on, but he had his fresh pair of underwear pulled up over his pajama bottoms. I knew laughing would slow things down even more but I couldn’t help it. I started cracking up then he started cracking up. Wil then danced around the room in his over-underwear.
“Wil, you are just too cute. That is funny. Ok, I’m sorry to end the party, but we are down to the wire here. Pretty please, let’s get dressed. With your underwear under your clothes.”
He danced around some more, then said, “Ok, Mom, go.” That meant he wanted privacy to get dressed. Progress.
Soon after, he walked into the kitchen. He had on pants and hoodie, with his underwear under. He sat down, and got right to business eating his breakfast. No need for convincing or coaxing there.
Some minutes are under, some are over, but it all evens out in the wash.
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.