I shared with Wil’s friend, that during the snow days off school, “Wil and I played with these big blow-up things that you put over your hands and then punch each other with.”
Wil interrupted me with a flat-toned, “They are called Socker Boppers, Mom.”
Wil is at a stage where he reads everything around him — even the words printed on the big blow-up things that you put over your hands, that I clearly took no time to read. But when you discover you can read about anything around you, then that’s what you do!
So within that one sentence Wil interrupted me with, I felt elation for his high interest in reading everything around him, mixed with an internal chuckle over his very typical teenaged eye-roll comment.
Life may be found in the present moment. But I have also found that observing the progression of moments over time fill the present with more life.
Most of us don’t choose to be caregivers. Then next thing you know, you find yourself standing on a house of cards.
Last night a friend was at a neighboring table for dinner with her husband and another couple. After they had eaten dinner, the other couple left. As our friend tried to leave, her husband refused. As he’s endured multiple severe health issues, life circumstances now have our friend in the dual role of wife and caregiver. He wouldn’t leave because he’d forgotten he’d eaten dinner, and thought his wife was trying to make him leave before eating. Try as she might to convince him he’d already eaten, he sat steadfast.
Though the differences are many, I saw many parallels in Wil’s determination not to be swayed and our friend’s husband’s determination. I intimately knew the tears in her eyes. I felt her frustration not of just that moment, but of all the moments built as carefully, patiently, diligently and lovingly as a teetering stack of cards; that in just one moment, comes falling down.
After the cards collapse a number of times, you just feel so tired of it all. All of those cards, all over the floor, and one by one you must build them back again. Sometimes, it goes smoothly, and sometimes that one card keeps falling so as it’s impossible to build on it.
I knew this cycle with Wil. The only two solutions our friend had at this point were to wait him out until he decided for himself it was time to go (which could be hours) or a fresh voice to break the spell (as the caregiver’s voice is heard so many times, pleas can fall on deaf ears). It is a new face, or a new voice, that often breaks the spell.
My dad was the one who stepped in, and I looked at our friend, our eyes connecting in a knowingness. It’s hard, and no one asked this kind of hard, but there is so much love here, so much that we’d do for our loved ones, that makes the hard parts both more challenging, and yet strengthens us at the same time. And when friends step in to help, the wobbly card steadies and we can start building again.
Just before the holidays, a member at work shared with me that she was bringing her mother, who has dementia and lives in Florida, back to Michigan for a visit. She said, “Though Wil and my mom have many differences, I now know how you feel when you fly with him. You just don’t know if they will cooperate or not, so you prepare the best you can. Then you find out there is always something you didn’t think of, and things fall apart. And other times things go so smoothly that you wondered how you worried at all. You just don’t know.”
While visiting my parents in Florida, Katherine, Elizabeth, Wil and I went to the Naples Zoo. Wil gets hot easily, so we went on the coolest day. When he grew tired and too hot, I found an area by the zebras which was shady and he really enjoyed. Though Wil is very capable of walking the zoo for the day, its his building overstimulation with the heat, with the crowds and with the animal noises that eventually get to him.
Every year I find ways to keep him at the zoo longer. Every year I learn from the previous year. But I never let him sit it out. Because every year Wil learns how much more he can do. I’m fortunate that the twins can walk off to enjoy the zoo on their own, and circle back to Wil and me, instead of stopping every time Wil and I do. They know how this works. We build the house of cards together.
When Wil finally hits a wall after stops and starts, he still has to make his way back to the zoo entrance. As this zoo is near my parents’ home, they are fortunately available to pick Wil up when that “wall” is hit. I sit with Wil as long as he needs me to, as his will to walk to the entrance is his only way out.
We don’t choose our situations; they choose us. But we do choose how to utilize the time within our situation. We do choose whether to keep building, even after the cards have fallen. When times get hard, locking tearing eyes of understanding mean more than words could ever convey. They give us strength to build again and again; as many times as it takes.
Internal victories are what carry you and lift you through the hard times. Even 30 more minutes at the zoo on this visit delivered an internal joy with iron-clad strength—a strength and joy that will not fade with time or circumstances. I can build a million cards with the super-sonic strength of 30 extra zoo minutes many take for granted.
Caretaking is unpredictable and challenging, yet it brings out our best, and brings us all together if we allow it to. It’s what humanity is all about. (But if you challenge a caretaker to a house of card building game, they will mercilessly kick your ass.)
It’s not that I don’t enjoy them, or learn from them, or feel a connection with them. I do. I have a few of my favorites saved in my library for quick access when I need extra help. But mostly, I enjoy the running podcast of my own life.
Like when Wil goes to Challenger baseball, I look forward to it just as much as he does. It’s as much of a supportive environment for him as it is for me.
There is both structure and freedom in the Challenger games: 3 innings, player placement in the outfield, a batting line-up, and everyone makes it to home plate. But beyond that, and sometimes within that, anything goes. It’s really the perfect parallel to raising a child with disabilities. The parents, coaches and players get it, because they live it. Every day.
Tim stepped up to bat, and Coach H. announced it was Tim’s birthday. Everyone cheered. Coach H. joked that his son, who has autism and scripts (repeats sayings), only told him 55 times that morning. After Tim hit the ball, Tim’s mom quietly told Coach H. that she’s not sure where his son heard it was Tim’s birthday; it’s really in January. But who couldn’t use an extra cheer?
Sandi was next up to bat. She hit the ball and ran to 1st base. But she didn’t stop there. Sandi ran on to join her friend on 2nd base to give him a hug. There Sandi stayed; two players on 2nd base and no one on 1st base.
James enjoys music; the same music, over and over. James’ dad’s cell phone is on a near constant repeat of animated show tunes in his pocket. But James’ dad instilled a rule: music while in the outfield, but no music while waiting to bat.
“I swear I can’t listen to that song one more time!” James’ dad said to me. James, in turn, scripted about the music the entire time he waited to bat. So, by the time James and his dad went back to the outfield, his dad was just as relieved as his son was to play music again!
I jokingly said to James’ dad, “No music on the pitching mound.” He replied, “Oh, there is going to be music on the pitching mound!”
Just before Challenger baseball, Wil, with his strong left-handed throw, tossed Elizabeth’s book into his pool. He wasn’t mad it her. Nothing precipitated his actions. He saw her book sitting on the back-porch table, and his pool was in perfect throwing distance.
He lost his iPad privileges, which means no Luke Bryan. So, he grabbed his Luke Bryan CDs, which I also said no to.
“DVD’s mom?” Wil asked.
“No,” I replied.
At the Challenger baseball game, I shared this incident with my friend, Eleanor. Her son also has Down syndrome and is Wil’s age. I knew she would understand, and sure enough, she laughed and said her son had committed similar acts with his sister’s possessions for no apparent reason. We shared other stories and how our sons always tell the truth, or remain silent, about such incidents. We’ve never heard either tell a lie. Then we watched her son crack an impressive grounder and take on the bases.
Entertainment, sports, connection, support, humor and education; no streaming required, all on a Sunday afternoon.
Like many mothers, I loved my son before he was born. My daughters and husband placed their hands on my belly and felt his kicks and punches. We pondered names and dreamed our dreams. The field of possibilities was laid open before us.
The golden gates to that field slammed shut seconds after Wil was born. My brain valiantly fought to pry them open, objecting to each indicator the medical staff shared with me that my son may have Down syndrome. Look at the way his arms and legs splay out, they said, see his short stubby fingers and his low-set ears, note the thickness of his neck. Interestingly enough, they never mentioned the shape of his eyes.
As Wil melted into my chest the day he was born, I reveled in my love for him. I was careful to keep thoughts of his expected diagnosis locked tight in a separate compartment, though it hovered perilously above me. I looked down into his eyes; their shape struck me. I was both awed by their beauty and intensely terrified. My brain, still playing defense attorney, objected strenuously. But when the heart knows, the defense must concede to rest. The compartment above me busted open and everything spilled out all over us on the hospital bed.
Just days after Wil came home from the hospital, I stared at him in his crib. Though my brain had rested its case — we even had genetic proof by this time — it begged to object. I simply could not believe I had a child with Down syndrome. But it was true. My heart held deep love for him, yet my brain kept its distance. I had never felt so contradicted in my life. As I stood there, my stomach suddenly dropped as if I was going down a roller coaster. The ground vanished below me and I stood suspended, as if in an elevator well. I visually saw darkness under me and the four walls of Wil’s room suffocated me. I knew this experience was a figment of my imagination but my body felt every sensation as if it were real.
When I was able to regain my balance and logically analyze what happened, I knew what it meant. I felt completely out of control. Though I had many loving people around me and a packet full of helpful information, I realized more than ever that the work of acceptance is intensely personal. I had to take the first grounding step into acceptance myself.
Acceptance has no clear start point. I never found a big, red “you are here” circle followed by dashed lines leading the way to acceptance. Rather, acceptance is like an open field surrounded by clouded mountains. You just jump in wherever you are, firmly plant both feet in the field, and figure it out from there.
I overstepped into territory I wasn’t ready for, like reading books about teens with Down syndrome before Wil was even a year old. Those books offer a different meaning to me now for the landscape I’ve travelled, but then it was too much knowledge too soon. I learned how to back-step and move in new directions.
Fourteen years later, I’m still back-stepping and running forward, climbing, traversing, discovering; yet I arrived to acceptance the day I jumped in and firmly planted both feet on the ground.
I know the feeling of the gates being closed on me. And that is why at the top of every mountain we ascend, like Julie Andrews in “The Sound of Music,” I open my arms wide above the clouds, spin with the wind and soak in the spectacular view of this beautiful, vast landscape I gratefully call home.
On Friday morning, Wil sat on his bedroom floor rifling through his bin of hats. He couldn’t decide which one.
“Well, no hat then!” Wil announced to himself.
“Do you need some help, Wil?” I asked.
“No.” I sat down next to him and laid his hats on the floor. He turned them all down. We had to leave for school in 10 minutes.
Wil had a Manchester shirt on so my best guess was he wanted a Manchester hat too. I presented his Manchester hats to him but he turned them all down. I convinced him to get off the floor, even without a hat, which was a good sign.
A few months ago when Wil couldn’t decide on a hat, he stayed on the floor. I told him I was taking his sisters to school so they wouldn’t be late and I’d be back to get him. When I returned, he was seated on the porch step with a hat and backpack on. I was proud of him for turning his day around.
On this Friday morning, however, when Wil stood up he fled the house without a hat or backpack. Katherine dashed after him. I grabbed Wil’s Manchester hats, his backpack, and flew out the door behind them.
I found Katherine standing in the dog kennel which is attached to the side of our garage. Wil was attempting to climb through the dog door which would have been hilarious to all of us, if we hadn’t been in a time crunch.
“Silly Wil,” I said. “Woody is going to be jealous of you using his door. Come on, you don’t want to be late to see Ms. Campbell, do you?”
“Kristi Campbell!” Wil jumped out of the dog door and exited the kennel as he said his paraprofessional’s name. Then he stood unmoving in the driveway — two steps forward and one un-moving step is still a step forward in our book.
I walked behind him, put my hands on his waist and said, “Chugga-chugga choo-choo!” As I pushed him forward, he leaned back in resistance, yet kept putting one foot in front of the other. When we reached the car, Katherine opened his door but he stood firm by it.
“All aboard,” I said. I bent his head down and kind of hoisted him into the car. He laid on his stomach with his legs hanging out. At this point his resistance was becoming a game. I was in part thankful for that, as I knew he was pulling out of his funk. But I was also running out of patience as he was in jeopardy of making his sisters late for school, which wasn’t fair to them.
Elizabeth was in the back seat with Wil and talked him into sitting up straight and putting his backpack and seatbelt on.
“Hey, Wil,” Elizabeth said looking at the Manchester hats I threw in the car, “that Manchester visor is mine.”
“No, my visor,” Wil said. They bantered back and forth. I knew what Elizabeth was doing. Sure enough, Wil chose the Manchester visor.
I reached my arm over the seat and splayed my hand. “Give me a turkey, Wil. You turned it around! Now you are going to have a great day.” He fist bumped my open palm. “And how about those sisters of yours? They are awesome.”
“They are bratties.” Wil said and laughed.
“No, you’re bratty,” Elizabeth said and playfully nudged Wil. (Typical sibling banter is as refreshing as it gets when life isn’t feeling so typical.)
By some miracle, we all made it to the school with 90 seconds to spare and in good spirits.
Sometimes it’s the simplest things that throw us off track, the simplest things that place us back on track, and the simplest things that we appreciate most.
“On page 65 and 66, you said you used creativity and silliness to encourage Wil to do things. How did you think of using silliness?”
“From Wil,” I answered. “He’s the master of silly. He uses it all the time. It’s an incredible motivational tool…for me too!”
I was the guest author of a book club meeting. The book being discussed was, “Stories of Wil: Puberty Part 1.” Upon answering the question, I realized something I had known but never consciously registered — almost everything I do to motivate Wil was originated by him.
As I grew into adulthood, much of my silliness faded. It was revived by raising Wil. He adds silliness to nearly everything he does. And so I learned to do the same. Just last week, Wil refused to brush his teeth. I knew if I pressed the issue he would dig his heels in deeper. The night before, Elizabeth showed our family a salsa dance she learned in Spanish class. So I grabbed Wil’s hands and said, “Let’s salsa!” We salsa danced from the living room to the bathroom while I sang, “Let’s go brush, brush your teeth,” to the tune of “La Cucaracha.” The song and dance flipped a challenging morning into a joyful one.
“On page 92,” a reader from the book club stated to me, “you said that ‘I may be missing a lot of clues that someone from the outside looking in could see plainly.’ I find that astounding, that when you were struggling like you were with Wil’s behaviors, that you could step back like that and have perspective.”
This process of stepping back, too, I learned from raising Wil. Wil’s behaviors, at times, can be challenging and difficult to identify the underlying triggers. When Wil was born, I felt the most stuck I ever have in my life. I knew I needed to take a step forward, but I didn’t even know which way forward was. So I reached out to people who were already living this life, and though the road stretched out long before me, I was guided by those who had a much wider perspective than I did at the time.
On the occasion the reader referred to, Wil was knee-deep in puberty. I was navigating new behaviors I had never seen from him before. Neither his teachers nor I knew what to do. I was receiving almost daily calls from the school. After one such phone call, I pulled into the parking lot at work and broke into tears. I knew Wil was hurting, I was hurting and his teachers were hurting. I was in that stuck place again and didn’t know a way out. I had to go into work so I took a series of deep breaths to calm myself down. I reminded myself there was a solution, I just didn’t see it yet. With each deep breath, I repeated to myself, “there is a solution, there is a solution.” A name popped in my head. Julie Feldkamp. She has been Wil’s teacher consultant since preschool. I called her quickly and she soothed my nerves immediately. She said I was not alone, she had worked with many students with varying behaviors, and we would get through this. We still had a long road ahead of us, but her words pulled me out of the abyss and placed us on the road of progress.
At the end of the book club, the readers shared how much they learned through Wil’s stories. “As I have, too,” I said.
I was about two years younger than Wil when I hopped a fence with my friends. The top of the fence caught the back pocket of my favorite jeans and ripped them. I was devastated. Then my mom found a butterfly patch and ironed it over the rip. I loved that butterfly patch. Those jeans, once my favorite, now held special meaning; a memory I hold nearly 40 years later.
Those jeans, though a simplified analogy, are resemblant to raising a child with special needs. The diagnosis — the unexpected rip. The devastation.
But you don’t know about the butterfly yet.
In just this last week alone, I received a text from Wil’s friend, Lila Harvey, sharing a photo of what she called Wil’s “awesome hair.” Wil had piled up his sweatshirt on his head. I also received a video clip from another of Wil’s friends. The video showed not only Wil sinking a free throw in gym class (she told me he sunk two), but also of his friends jumping up to cheer and congratulate him. I received another message that Wil’s Connect friend, Jacob Mann (Connect is a program that connects typically-developing students with students who have special needs), is going to help Wil deliver a joke in the school announcements on Monday. I also received a photo of Wil and another of his Connect friends holding pizzas they had made on English muffins. Thursday night, Elizabeth had a basketball game in Chelsea — Wil entered wearing his noise-cancelling headphones. The ticket taker made a special effort to be friendly with Wil. When Wil and I sat down in the stands, he laid his head on my shoulder multiple times. He’s never outgrown such shows of affection.
These are the threads of the butterfly. They are not large in size, but they are brilliant in color and meaning. The butterfly is personally delivered with nothing expected in return; the giving as transformative as the receiving. The butterfly is the gift of seeing anew what you once believed to be lost. The butterfly does not take the rip away, nor should it. The process of melding the butterfly to the rip is what creates special meaning; and memories you will hold close for years to come.
'WIL'ingness = Willing to Embrace Extra in Life 