Today Wil had a good day. I’m not sure how tomorrow will be, but a good day today is enough to get me to tomorrow. Let’s take this thing day-by-day-by-day.
There is an analogy that no one can walk up to a grown elephant and have the strength to pick him up. However, if you begin by lifting the elephant in its infancy, and lift the elephant each day, you will grow stronger as the elephant grows. One day you will find yourself lifting a grown elephant. In these last few weeks, I feel not as if I’ve been lifting an infant elephant; rather the infant elephant decided to sit itself right on my stomach. I felt the slight shift of his infant weight, carrying on as usual. Then, day-by-day, his weight became almost in-perceptively heavier. Until, one day, I felt like I was dragging around and wondered what the heck just happened.
As I’ve mentioned recently, Wil has been having some trouble at school. He started the school year like a Rockstar. Popping out of bed, going to all his classes, taking the bus home. Shazam!! The twins were cranking out their first year of high school. I was able to coach more classes with the extra time Wil taking the bus home afforded me. We were all on a roll!
Then the stubbornness started to creep in. Some days were good days. Wil breezed through the day, with a few halts, doing most of his work, getting on the bus to come home and telling me about his day. Some days had stops and starts. Wil refusing to do his reading. But then after some time agreeing to another task. Some days came to an abrupt halt. Wil sat on the stairwell and refused to get on the bus. I needed to come and pick him up. I’d go to work with knots in my stomach. Would I get a call that he wouldn’t get on the bus? How would I pick him up if I was in the middle of coaching a class?
I make sure our mornings at home are upbeat to get him off to a strong start. Some days take more patience than I think I have. He refuses to get out of bed. We have lots and lots of hugs. Then all is good. Other days he jumps out of bed ready to go. I never quite know. The elephant grows.
Almost every day now Wil is not cooperating. Wil refuses the bus. A good friend is picking Wil up from school tomorrow. I’ve made changes in my afternoon coaching schedule. It takes a village and I’m thankful to have one. But still, the elephant grows.
Not knowing how his day is going to go, and not quite sure what the right tools are to handle it have, over time, day after day, fed this particular elephant.
I just read a quote that said joy does not bring gratitude. Rather, gratitude brings joy. I believe that to be true. Because really, I could paint a big joyful rainbow on this elephant sitting on me. I could say, look how pretty he looks! I’m making the best of it! But his growing red-orange-yellow-green-blue-purple colored butt would still be weighing me down.
I know others have heavier elephants. And I know we will figure this out. But sometimes it’s plain cathartic to yell out the simple truth: Dammit this is hard!
But this is my favorite part of life—-the little spontaneous things that happen. Seemingly inconsequential things that give you just the right leverage right when you need it. Just the right wedge under the elephant to lighten the load.
Today, the back of my car was full of thank you letter and packages for our Buddy Walk sponsors. It was more than I could carry into the post office in one load. A man with a Vietnam Veterans hat on walked over to me and said, “Do you want a little help?”
“Yes, thank you!”
“I’m retired, so I have the time. But in return,” as he eyed all of the mailings, “you have to let me get in line in front of you.”
“You have a deal.”
I was at the post office long enough to overhear multiple conversations. People sending packages to loved ones. Another woman who took in a sickly dog that lived 15 years. She was mailing photos to the place she bought him from. They had kept in touch over the years. I drove home feeling a little lighter for my gratitude.
Wil’s team at school has been working hard to find motivators for Wil. They set him up for success every day. I’m thankful for that, more than I can express. I walk into his goal setting meetings not ready for a fight, sadly as some parents must do, but ready to talk as a team. That is some major gratitude leverage.
And today, when I picked Wil up from school, he was full of energy. It was so good to see him end the day on a high note.
Driving home, Wil picked up my phone, turned on Amazon Music, and pulled up his favorite country singer, Luke Bryan. He played Luke’s song, “Rain is a good thing” and started to sing with Luke at the top of his lungs. When Wil looked out the window, he changed the word “rain” to “snow.”
Wil sang, “Where I come from, snow is a good thiiiiiiiing! Oh yeah!”
I guess elephants don’t like the snow, because that big guy got up and ran.
Yesterday evening, when I left for work Wil’s comforter was still in the wash machine. I told him I’d put a different one on his bed. As I fanned it out over his bed, before it had even fully settled, Wil jumped up and landed spread eagle across the comforter on his bed. He closed his eyes, smiled and uttered an, “Ahhhhh.”
I’m not a scientist. I’m not a psychologist. But I do know one thing. Spending time with people with Down syndrome sure brings out those feel good feelings we are all looking for.
And it’s a lasting happiness. Each time I see that comforter fan in the air and Wil jump up upon it and live his simple joy out loud, I’m lifted a little higher. It may be simple, but it is no less powerful. I can do today in a better way. I truly believe a positive biochemical change happens in us spending time with people with Down syndrome. Our instinctual feel good hormones are released naturally, without the aid of substances.
I have a vision — a vision of a large gym room. Wil is there. Friends with Down syndrome are there. They are jumping rope. Twirling with hula hoops. Shooting baskets. Some basketballs “swooosh” through the basket while others bounce off the backboard. Wil is attempting with all his heart to keep the hula hoop around his hips. It continues to fall to the floor. He laughs, picks it up, and tries again. A small group of “typical” individuals who are struggling in life walk in. They are desperately seeking happiness. They may be overly competitive. Have social anxiety. Low level energy. One grabs a hula hoop. Another picks up a jump rope. And some others gather to shoot a baskets. The social anxiety kicks in. They can’t hula hoop. They haven’t jumped rope in years. The intensely competitive feel their juices flowing. I’ll hit every one of these and drown these suckers. Wil urges the woman next to him to try the hula hoop. His laughter as the hoop falls and he picks it up again is contagious. She tries. Hers falls. She picks it up again. She still feels self-conscious. Others are watching. But Wil encourages her. She tries. She finds the trying is more fun. She forgets others are watching for brief seconds at a time. This is the most fun she has had in years.
Our competitive friend shoots and sinks every basket. Another friend with Down syndrome congratulates him. He starts to talk to him. Our competitive friend can’t quite understand. He nods his head like he does understand. Who has time for this? He’s got things to do. But does he? The two guys shoot more baskets together. They start to talk again. Our competitive friend really has to listen this time. He’s been asked a question. He has to talk a little slower. They get into conversation. They shoot more baskets. Though their success rate differs, they both find each other congratulating or encouraging another effort. But now it’s time to go. Our competitive friend doesn’t know what just happened, but somehow, he feels like he just took in a huge breath of fresh air. And he hasn’t done that for a long, long time.
They meet again in the gym the next day. Our friends with Down syndrome yell out the visitors names and run up for high-fives, fist-bumps and hugs like long-time friends though they have only met the day before. They pick up the hula-hoops, jump ropes and basketballs. They pick up right where they left off, but somehow feel years lighter than only a day before.
They come back again the next day. And the next. And the next. They start to make real friends. They get better at shooting baskets, jumping rope and hula hooping. Those that made their first full twirl before the hoop fell are congratulated just as enthusiastically as those who just hit their 20th. What is recognized is doing better than the day you did before. Each and every day, big enthusiastic greetings are the norm. The talking is slower, the listening needs to be more intense. While this may have first resulted in impatience in our visiting friend’s “outside” life, they begin to see how gratifying slowing down is. How taking time to listen is actually a “feel good” mechanism. Go figure.
Our visiting friends find themselves bringing some of these attributes to their life outside of the gym. They greet others more enthusiastically. Genuinely. They listen. Like really listen. They’ve slowed their roll some, but notice they actually have made stronger connections. Their accomplishments take on a different meaning. They are more fulfilled for the connections made. In that, they are able to honor their own achievements as well as others.
I can be any of those people that walk in the gym. I can get overly competitive. I can get anxious about what others will think. Heck, even sharing this post I can hear you saying, “What kind of utopian world does she live in thinking this gym vision would have any impact?”
But here’s the thing, I walk into that gym every single day. And thankfully I also come back the next day. And the next. And the next. I need the reminders the gym life has to offer. Because the outside world does everything it can to take me away from what is important. How amazing is it that I am greeted enthusiastically every single morning? This fact alone makes me want to greet others the same way. Slowing down is a toughy for me. But my goodness, how incredibly rewarding that is once you do it. To listen, to offer your best self, whatever that looks like for you. Not in comparison to another. And all the while, finding a way to have fun doing it.
Wil has had a tough few days. Sometimes I can find the trigger, sometimes I can’t. Thursday I know what the trigger was.
In an unsual set of circumstances, I worked late Wednesday night and early Thursday morning. This meant I did not put Wil to bed nor wake him up the next morning. Two mornings a week Katherine and Elizabeth wake Wil up and help him get ready for school. I arrive home just in time to take them to school. Most of the time this works out great. But, like all of us, some mornings for any number of reasons are harder or easier than others.
I prepared Wil for my being gone Wednesday night and Thursday morning. I told him I’d come in his room when I got home from work to give him a hug, and that his sisters would be there in the morning. He said ok. However, when I returned from work Thursday morning I could tell it was going to be tough. And it was. He had a stubborn day and refused to get on the bus.
Yesterday was a stubborn day too. I’m not sure why that was. But it was. To prevent another stubborn day, this morning I woke him up 10 minutes early. I always lay down with him in the morning –other than the mornings his sisters wake him up– and we take about 10 minutes to laugh, giggle and he asks for lots of hugs. So today, by waking him up 10 minutes early, that means we spent 20 minutes of laughs, giggles and hugs. He got out of bed and was singing all morning. “Happy, Happy, Joy, Joy, Happy, Happy, Joy!” He ate a turkey burger (he’s definitey a dinner for breakfast kind of guy). Then when I heated up some egg casserole for myself that we had made the night before, he stole that from me and ate it too!
There are many stops and starts in our days. Even with homework last night. We did it in pieces, as fortunately we had the time to do last night. He was humming along through the questions until he was in the process of writing out the word “P-r-e-s-i-d-e-n-t.” When he got to the “d” he wrote a “t” instead.
“Oh, Wil, hold on, that’s supposed to be a “d.” Presi DDD ent.”
“No, T. Presitent.”
“It can sound like a “t” but it is a “d.’ Presi DDDent.”
Pencil down. Arms crossed.
Fortunately there was time to burn in the evening and we only had a few questions left to answer.
“Hey Buddy, how about we take a break. You’ve done an amazing job getting through this. Let’s finish after dinner.”
I never quite know how “after dinner” will go. So after dinner, “Wil, how about we finish those last few questions?”
<sigh of relief>
We breezed through them and then I said, “Ok, pajama time and then some free time before bed.”
Just like any 12-year-old boy, Wil is dealing with hormonal changes. His mood can shift with the wind. One moment he’s happy-go-lucky and the next his heels are stuck in the ground until he is good and ready. He’s typical in so many ways, and yet he is not. This world is made for those of us with 46 chromosomes as differing as we are. It moves at a whirlwind pace for Wil and it keeps getting faster.
I was told once, many years ago, as I was delighting over how Wil was doing in 3rd grade, “You know it’s going to get harder as Wil gets older.” I believe this person thought I had blinders on. That because Wil was having such a good year, I didn’t see the struggles that were ahead. And you know what? That person was right on one point. It is harder.
But I don’t wear blinders and I never did. My optimism is my strength.
When Wil was plopped down in the stairwell at the end of the day refusing to get on the bus, two of his friends encouraged him up. It took multiple tactics but they were able to eventually get him up, running and laughing. Soon they were outside joining other friends. Moments like these encourage compassion in others, cooperation in Wil, and delight in a mother witnessing it all. So yes it’s hard, but the rewards are far reaching. Every day there is a lesson in his actions. As hard as it can be, we need the Wil’s of this world to slow us down from time to time. Can you imagine what a different day it would be for all of us if we took 10 extra minutes of laughter and hugs to start our day? Happy, Happy, Joy, Joy, Happy, Happy, Joy!
I meditate. 10 minutes a day. With Headspace. I get to choose when and where I meditate. My chosen 10 minutes of living in the present. It is bliss. It is zen. It is being. It is da bomb.
But being put in the present moment when it’s not my chosen 10 minutes? Is there a fast-forward button on this present moment thing?
Last night Matt and I both got home about 7pm. Wil had two sheets of homework. Just one sheet, depending on Wil’s mood, can take hours or minutes. Currently Wil is congested. So he’s tired. Hours, rather than minutes, was the likely scenario. We usually start homework about 4:30 so Wil can take multiple breaks, if needed. Knowing I’d be home later, I asked Katherine and Elizabeth to work on one of the sheets with him, giving him breaks, and I’d complete the rest with him when I got home. Katherine and Elizabeth are very good at doing homework with Wil, and he enjoys his big sisters’ help. But even they could only elicit 3 answers of the 25 questions from Wil.
In the end, pulling out all the silliness, encouragement and creativity we could muster, 7 questions were answered of the 25. The other sheet remained completely blank. Wil went to bed and immediately fell asleep. I did the same. It was exhausting for all of us.
You can’t press time on Wil. The minute he senses force, he responds with like force. Taking breaks is a necessity. A brief break can save hours. He requires encouragement. Silliness always wins. Creativity a must. Some days are a breeze, and other days, like last night, are stumpers.
On school mornings, I wake Wil up knowing it will take him 10 minutes to get out of bed. He requires a hug first. Then another hug. And another. And another. Then tickles and lots of giggles. Then we decide on what is for breakfast. Eating breakfast is a hot topic. He loves to eat, and it’s usually leftovers from dinner or a sandwich. He’s not into cereal. After breakfast, brushing his teeth is another process. He is a sensory kid. This too requires patience, silliness and creativity. Some days, brushing teeth is left until after school because of the time it can take.
All of these moments with Wil require me to be present. If I press time on him, then it’s like taking 2 leaps back. Though I can predict these times with a fair amount of accuracy, they are not my chosen times to be in the present. This can be admittedly frustrating. When time feels too short to be in the present moment. Can we just move this show along already?
At this point in my life, I don’t believe that being in the present moment is filled with bliss. That is, if it’s not at a time of our choosing. When I really want to press time on Wil, but know I can not, I have to find my silliness. I have to find my creativity. I have to find another well of patience. Some days I do better than others. When I reach a point of losing my cool, I get more creative. I get sillier. And my well deepens even more. So while the present moment is not what I’d call bliss, I’m still deeply grateful for my growth in it. Because I can’t press time on Wil, the present moment presses on me to grow. Maybe that is the lesson of the present moment–growth and gratitude. At least that is the theory I’m going with right now. And I’ve got about a million morning hugs to back that theory up.
Last night the word “retard” was said on a tv show Elizabeth and I were watching. We both reflexively flinched.
“Why did they even need to say that?” Elizabeth said. “It wasn’t needed at all.”
Can you imagine proving the value of your child? The mere fact your child was born with one more chromosome leaves you in a position to prove his worth. To tell the world he is not “less than.” He is not the subject of a joke on tv. Because that is how he is seen from the second he is born. In fact, if you have prenatal testing, many will share words of sympathy with you even before your child is born. Can you imagine? Sympathy for the miracle of a new birth?
I wonder, sometimes, why should I have to prove his value? Why do I have to tell people I’m not sorry? Isn’t the fact that he is a human being born into this life miracle enough?
But it’s not enough. So when occurrences like last night happen, I am reminded not to get lax. That even though my immediate community is supportive, there is much outside work to be done.
So I prove. I prove by sharing Wil with you.
Wil sings the whole way to school. Every single day. When you and I are complaining that it’s cloudy, or raining, or snowing, or windy, or what’s ahead in our day, Wil is singing. He has bad days too, but he always makes room for singing. And when the sun comes out, no matter how we may be rushing to the next thing, he always stops, tilts his head to the sky and says, “Oh mom, what a glorious day!” I can’t help but stop and realize the same.
How much can I expect to prove to you? How much can I expect to prove to the television show writers? How much can I expect to prove to the new moms? And expect to prove to those who utter words of sympathy that we’d really love to hear words of their congratulations?
Proving is hard work. That’s why it frustrates me. It stresses me. I feel it falls on closed minds and ears.
Rather, I have chosen to share. Sharing is fun. Sharing is grateful. Sharing is personal even across these vast social media waves. Sharing is what Wil does best. Sharing is the miracle, the singing, the glorious in this life.
I opened the car door, felt the wind hit me and my body instinctively stiffened in defense. I looked over to see Wil stepping out of the car–when he felt the wind he muttered an ahhhh, tilted his face to the sky, opened his arms wide and spun around in circles. I decided to follow his lead.
I see a lot of stressed unhappy people out there. And I wonder, how can we change that? I mean, we all have different battles to fight. And we all have different things that make us happy and sad. The online self-help bookshelves at Amazon have multiple aisles. There are therapists and any drug you can name that advertise relief.
With so many tools available, why do so many seem as stressed as ever? It’s like a competition to see who is busier. I overhead a conversation waiting in the check-out line at a grocery store. Two ladies ran into each other, and soon they were competing over who had less sleep. Is that really a competition you want to win?
There is a difference between being purposeful and being busy. It seems that being busy is supposed to win us a gold star. But how purposeful are we really in our busyness? Are we missing the point as we run in circles?
I don’t have the answers, but it sure hurts to see so many people hurting. We seem busier but unhappier. I don’t believe there are any secrets but I do believe there are methods to being happier in life. And it does involve making some changes….in who you talk to.
I will tell you, every time I go to a special needs event I am filled up. Not just by the participants, but also those doing the volunteering. Now, I’m being very general here because everyone is an individual; but when you are talking and working with someone with special needs, for the most part, their learning style doesn’t so easily fit the norm. Most of us typical folks adapt even if it isn’t our preferred way of learning. But you can’t tell a child with Down syndrome to hurry up when they don’t want to. It ain’t gonna happen. You can’t talk to a child with autism in generalities, you won’t get through or you will have someone very upset on your hands. You have to slow down and think through what you are going to say. You can’t just force things. You have to look at things from their perspective. Now, that may sound stressful to some of you, and at times it can be. But here’s the secret…it gets you out of your own stressful world that continuously spins around in your head. It forces you to think above all that noise on a different plane. To broaden your perspective and throw in a dose of compassion. And even though you may have some very big things on your plate, these experiences have the power make them shift to a better place in your mind.
At a recent Special Olympics function, I was sitting on the side of a hill with a few of the athletes. I struck up a conversation with two of the gentleman. One of them works at a nursing home. He stutters a bit, but that did not slow down his enthusiasm in explaining how he cleans the floors, makes the beds, takes care of general room clean-up. I barely needed to ask a question before he was answering it. I was thoroughly enjoying our conversation. I actually found myself almost to tears. I’m sure it was part happiness seeing this young man thrive as Wil will be a young adult in 6 years. But, mostly I think it was the pure joy I felt as a child. Sitting on a grassy hill in the summer sun and having an enthusiastic conversation. It was so refreshing. He wasn’t telling me how stressed he was to clean the floors, or how some coworker was an absolute jerk, or how he hadn’t slept in 3 days. He was a man grateful for his daily life and couldn’t wait to tell me all about it. I want to be more like him. Sorry, ladies competing in the grocery store aisle, my new friend is the real winner.
So many of us are given more cognitive abilities than this man, and yet we use most of our time stressed to the hilt. I’m not saying that we do not have very important things to attend to. But what I am saying is that it’s ok to take a step back. To take a good look to be sure what we are doing has purpose to it. To find a purpose for growth and a broader perspective, and in some cases, great enthusiasm.
The next time I get stressed, or overwhelm myself, I’m going to bring myself back to the conversation on the grassy hill. Our friends with special needs may need our help to achieve certain goals, but we need their help just as much, if not more, to remember what a purposeful life is meant to be.