Happy is as Happy Does

I wasn’t feeling very well yesterday. Wil had just gotten over the flu, and I believe a lesser degree of his illness hit my system yesterday. Other than going to work in the morning, and taking Katherine and Elizabeth on a few errands, I laid low and got as much sleep as I could. I decided to sleep in this morning, and Matt had long left before I woke up.

I could smell the coffee in the kitchen when I woke up. It smelled good, so that was a good sign. I could hardly drink any yesterday with the nausea.

It was still dark in our house, as I padded from my bedroom toward the kitchen. Katherine, Elizabeth and Wil were still sleeping. I walked by Woody, curled up in his bed on the living room floor. He didn’t lift his head, but his tail, extending the outskirts of his round bed, gently and rhythmically tapped the hardwood floor. I bent down and gave him a pet.

I made my way into the kitchen, and poured myself a cup of coffee, then turned the desk light on just above the Lazy boy chair. I nestled in the chair with a book. My New Year’s resolution has been to stay off of any media first thing in the morning and read something that will improve my life. Twenty days in, just one more day to cement the habit.

Soon I heard Wil rustling in his bed. He got up and must have seen the desk light in the living room. He walked toward the doorway in his room, and leaned to peer out of it. As soon as he saw me, he quickly stood back upright and shut his door. Privacy has been a big deal lately.

A few minutes later, he emerged fully dressed in a button-up collared shirt and pants.

“Going somewhere special today, Wil?” I asked.

“Hi, Mom.”

“Hi, Buddy.”

He walked over and climbed up in the chair with me.

“You are squishing me, Mom.”

“Hey, I was here first, you stinker. I think it’s you that is squishing me.”

“Ohhh, Mom. You are being silly.”

Hearing his string of words must be how an elementary music teacher feels when the choir comes together in harmony. Hours of practice, working for the notes to come together–to click. Wil used to say “you be silly Mom.” Now, the combination of “You are being silly” strung together in perfect harmony to this mother’s ears.

“Breakfast now, Mom.”

“Ok, let’s have your pill first.”

Wil takes a thyroid pill every morning in a spoonful of peanut butter. 

He has since he was six months old. He first took his pill in applesauce. Then at some point, he decided peanut butter was a better choice.

“Do you want to get out the peanut butter this morning, or me?” I asked him. Along with privacy, his independence was flourishing.

“I get the peanut butter.”

After I scooped up peanut butter on his spoon, and sunk the pill into it, I held it up to his mouth. His independence may be growing, but with his pill he still loves the game of “open the tunnel.”

He took the spoon, and I said open the tunnel, and he swallowed down his pill.

“Mom, guess what. I’m a choo-choo train!” And he started taking straight-legged, tiny steps around the kitchen island. His arms were bent at 90 degrees, making short, choppy swings.

“Mom, you do it with me!” I fell in straight-legged, tiny steps behind Wil and we choo-chooed around the kitchen island.

Once we made it full circle he laughed then said, “Ok, done now.”

He helped me make his breakfast sandwiches. Then he grabbed his plate and walked downstairs to watch Sofia the First on Netflix. I don’t know why, but he only watches that show while he eats. When he’s done eating, he’s done watching and moves on to something else to play with. I went back to reading in the Lazy Boy.

When Wil came upstairs after eating his breakfast, the sun was rising and warm on the window in the living room. He leaned his back up against the glass and said, “Ahhhh warm. It’s a beautiful day, Mom.”

“Yes, it is. Elizabeth has basketball practice this morning, but when she gets back, let’s go outside.”

“Ok, Mom.”

Wil walked off to his room, and put his favorite Luke Bryan CD in his CD player. He started singing at the top of his lungs. I started singing with him.

“No, Mom! Just me this time!” (I again heard the harmony with the addition of “this time” when he used to say, “Just me!” )

“Oh, geez, fine whatever. You never let me have any fun.”

“Oh, Mom, you are being silly.”

I gave him a hug and went back to my book. He restarted the song because clearly I messed up his groove. But I still belted out the choir with him from my chair in the living room because I just couldn’t help myself.

Yesterday, I did not feel well, and you never appreciate feeling good more than when you don’t. I was also living up to my resolution, and well on my way to forming a habit. My dog greeted me with the whap of his tail to start the day, and my son and I had already choo-chooed around the kitchen. When Katherine and Elizabeth woke up, I would surely annoy them with my great enthusiasm for the day (it’s so fun to annoy teenagers).

I don’t believe happiness is this big, elusive thing that we wait for to come to us. I don’t believe happiness is merely positive thinking. Happiness is positively doing. Happiness is positively seeking. Happiness is found and taken in lots of small doses that add up. Happiness is choo-chooing around the island rather than grumbling over a daily pill. Happiness is taking note of the sun through the window, leaning into its warmth and soaking it in. Happiness is hearing a harmony in a string of words. Happiness is singing at the top of your lungs because your son’s joy is downright contagious. Happiness doesn’t find us, we find it – in what we do, see, say, sing, and feel.

468791_10201278371705843_580599105_o

 

 

 

Overwhelmed: Discovering a New Landscape with Down Syndrome

We walked down the hallway of the church, where the meeting was being held. Matt held the baby carrier, swaying slightly with the gait of his walk. It was somewhat dim in the hallway, Matt and my footfalls echoing off the walls. It was evening and the congregation had long returned home from the morning’s service. Though this was the first time we had set foot inside this church, I imagined the vibration of the organ’s music under my feet, the choir in white robes—a bright satin sash of solid color draped diagonally across their chests. White candles being lit, the rise of the preacher behind the pulpit, singing along heartily with his choir–-his flock forgiving his tone deafness for his heart for his Lord.

The sound of voices ahead broke the reverie of the imaginary church service in my mind. The mind is a master of distraction. For that brief moment of choir-filled distraction, I was thankful. My mind had been a swirl of unanswered questions since our son was born just over a month ago. I felt I was living in some kind of surreal dream. Thoughts swirling like Picasso clouds above my head. A cloud is a cloud, and yet, different.

Matt and I followed the sound of voices and found ourselves in a very typical church classroom. Spacious, rectangular, utilitarian. An oblong table had been constructed with two or three long tables pushed next to each other on each side of the room, with one long table connecting the ends of both sides. The tables were lined with chairs. No one was sitting. Women stood around the outskirts of the table, and a few men (I was relieved to see for Matt). The women, and men, were clustered in small groups of four or five. But they didn’t stay in their groups. They would mingle and move around from group to group. There was a sense of ease about them—they all knew one another.

To the far right of the room was an open area. About ten children ran around laughing and playing. Tears started streaming down my face. I couldn’t even place emotions to what I was feeling, it was all jumbled up inside of me. If I had to scoop it all up in my arms and label it, I’d call it “overwhelm.” I was “overwhelmed.”

There were a few adults in this area too, chatting with one another, playing with the kids, or redirecting a child from taking off to a door. It all seemed so normal, but it wasn’t.

“Hi, have we met before?” A woman was standing in front of me.

“Oh! Um, I’m sorry, I just…um, we are the Taylors. I’m Christie. This is my husband, Matt, and um, this is our little guy, Wil. He’s just over a month old now. We have twin girls too. They are home with my mother-in-law right now.”

“Very nice to meet you, I’m so glad you came,” she said, and put her arm on my shoulder. “Let me introduce you to some parents.” When things don’t feel normal inside, the simplest normal responses are breathed in deep like the fresh air they are.

I don’t remember all of the people Matt and I met, but we met almost everyone in that room. The common theme, over and over was, “yes, this is a challenging journey, but a very joyful and gratifying one. Though you may not see it now, you will. I promise, I promise.”

I didn’t see as far into the journey as they did, but their promises were my beacon. Though I didn’t grasp the full meaning of their statements, I could now see beyond the blur surreal clouds I was living in, heavy with question marks.

Soon, the meeting began and we all sat down in one of the chairs that lined the oblong table. The majority of the meeting was about learning styles for our kids. Before Wil had even reached 2 months old, I discovered that day that our kids with Down syndrome are mainly visual learners and math tended to be the most challenging subject. I don’t remember many other details about the sit-down portion of that meeting.

However, I did take home one key element–questions are good, but you can also get too far ahead of yourself. I wanted to know everything, right now. I wanted those funky, surreal clouds to disappear and the answers to make themselves known. And they would, in time. In time I would learn about Wil’s math skills. In time I would learn about Wil’s visual learning. But right then, I realized that what I most needed was having my feelings validated. For someone to say, you know what, I was there too. For someone to say, yes, you have a beautiful baby, but it’s also ok to feel sad, to feel scared, to feel like you don’t know what is happening. For someone to say, we have tried to decipher the same Picasso clouds too, and we have walked through them, and we promise, and promise again, the sun is shining on the other side. It may be a Picasso sun, and you will appreciate this type of sun more for having known the Picasso clouds.

Time is hugely discomforting as you wait for answers. And that is exactly why time is also a healer. Some things must happen with time. With experience. With day-to-day learning. Living in the unknown is an unsettling place to be. I thought knowing the answers would heal my pain. But it was the time with my son, and experiences with my son, that opened my eyes to the beauty of our new landscape.

On the last Sunday of September each year, I walk into a big park. Some years there is sunshine. Some years there are clouds. And some years there is rain. But every year, you will find multiple volunteers assembling long rows of tables lined with chairs. A big truck will pull up and unpack banners, balloons, t-shirts, food trays and such. Another big truck will arrive with a stage and band equipment. Once the stage, instruments and speakers are set up, the music begins to play. There are many spare instruments laid out for anyone who would like to play with the band.It doesn’t take long before a huge group of kids and adults with and without Down syndrome are dancing and playing with the band. There are multiple families and friends clustered around the stage. They mingle and move around and talk with one another. There is a sense of ease about them—even if they don’t know one another, they all have a common bond that brings them together.

This is a surreal dream. One that I now can’t imagine not living in. Those funky Picasso clouds and sun I once wondered at, are our normal. The promises I held so tightly to those years ago did come true. Time, experience, and support truly are healers. If I had to scoop it all up in my arms and label it, I’d still call it “overwhelm.” Overwhelm of joy, gratitude, fortitude and community.

Wil and me (2).jpg

Shades of a Smile

There is something about people with Down syndrome that make strangers smile.

There are the warm, friendly smiles. These are those who have an acquaintance with Ds or have a positive image of people with Ds.

Then there are the he’s-so-darn-adorable smiles—just because he is and it makes you smile.

There are smiles of sympathy (those are where they look at Wil with concern, then the smile appears when they look up at me and there’s a sadness in their eyes).

Then, my absolute favorite, is the knowing smile. They look at Wil a little longer, and this far off smile appears on their face. You can feel the connection. Then they look up at me like we know each other—their smile says “I know you even though we haven’t met yet.” Sometimes they will share with me about the person they love with Ds. Sometimes they won’t. Either way I know they love somebody with Down syndrome. It’s a beautiful connection, if only through a smile.

2ACAE53A-AE7C-4E79-BC7A-60ABA22A73C4

Today was a Tail Feather Shaker

Driving home from work this morning I received a call from Katherine.

“Mom, Wil is in the shower and he won’t get out. We have to leave in 15 minutes.”

“Ok, see if you can urge him out. If not, keep getting yourself ready and I’ll be home in 5 minutes. Has he eaten yet?”

“No.”

“Ok, what does he want for breakfast?”

“Sandwiches.”

“Ok, good, thanks. See you soon.” 

This is no new scenerio. Some mornings Wil hops out of bed ready to go, and other mornings take more time. We all have those kinds of mornings for whatever reason. The challenging part is, where we all understand the need for urgency, Wil could care less about urgency. Any rushing sets you 10 steps back. 

Not too long ago Wil would not get out of bed. Would not, no, no, no. Even with the most patience, he was stuck in a funk. He was moving so slow, that there was no way that he and his sisters wouldn’t be late for school. I convinced him to at least get in the car so I could take his sisters to school on time, it wasn’t fair for them to be late, and that the two of us would go back and finish getting ready. Even with that extra time, he still had a challenging day. Those funks can be hard to break for all of us. Consider having verbal delays where you are unable to express in words how you are feeling–this makes it all the more frustrating. 

When these halting mornings are happening, there are typically 3 key questions that need to be answered to anticipate the outcome in this situation: Is he staying in the shower out of independence? Or is it an act of defiance? Or is he simply enjoying the shower and not ready to get out?

If it’s the first one, he’s generally in good spirits and it’s simply that he wants to determine his shower time like most tweens and teens. With a little pleasant urging, he’s usually more than happy to get out and get ready for school. But if he’s rushed, this situation can easily move into key question #2. If it’s obstinance, its hands down being late to school. It means there is something bigger brewing under the surface and I need to find a way to help him get through it. This always takes time. Any amount of rushing and his heels will find a way to dig into that slippery shower floor and they won’t be coming out anytime soon. Giving him time and allowing him to regroup his emotions is the best way to get through this bump in the road. Question #3 is my favorite. Don’t we all like to linger in the shower a little longer? 

When I arrived home, sure enough, Wil was still in the shower. I pulled back the shower curtain. 

“Hi Mommy! Watch this.” He did a pantomime dive down the the base of the tub and started to pretend to swim. 

<Phew, no obstinance. Clearly he just wasn’t ready to get out of the shower>

“That’s really good you little fish! Hey, it’s time to get to school. If we move fast enough, you’ll still have time to eat one of your two sandwiches. You can take the other one with you(he loves to take his unfinished breakfast into school).” 

“Ok!” How do you spell relief? O-K! 

He stepped out of the shower, picking up his towel, held it in front of him, and shook his bare little tail feather in a dance. I wrapped the towel around him and he ran off still dripping water to his room. 

When I followed him into his room, I saw he had already picked out his clothes. His shirt, pants and underwear were all neatly stacked on his bed. Can you spell Independence with a Capital I?!!! 

We had five minutes left. I slapped together his sandwiches and he ate one while I put on and tied his shoes. I put the other in a tupperware dish to carry to school. 

“You’ll be able to eat one and take the other with you.”

“Ok!” Did I just hear the sound of music? So many ok’s at once, my heart overflows. Clearly this morning, he was ready to hustle and get off to school. 

We only left the house 3 minutes later than usual and the kids arrived to school on time. 

When halting mornings happen, I typically start them with questions. And when they don’t work out well, I ask more and more questions. When you are raising a child with communication barriers, the questions are necessary for everyone’s success. Some questions will never be answered, but many will–those answers help us take the next step forward. After many halting mornings where there were seemingly no answers, today was a resounding success. 

When I pulled back the shower curtain I did not know what I was going to get. To hear Wil’s uplifted voice say, “Hi Mommy!” was music to my ears. That swift 18 minutes this morning was a life-winning race. Today it feels like Katherine, Elizabeth, Wil and I are all wearing medals around our necks. 

Shake your tail feather to big, little victories! Onward!

 

All That We Are

He said mom, look at me, and he placed my hands on either side of his face. I looked at him. At first what I was doing screamed for attention. I did not have time. But he smiled, and I melted into his little face. Those almond eyes, his soft innocent stare that only asks for all that I am. He wanted his mom, not half of his mom, but all of his mom. We all want all of who we are with, and all of who we are, but along the way we forget to ask. We forget to ask that even of ourselves. He doesn’t forget. Thank God. 

So then, for that day, by virtue of that moment, I am brought back to life. Back to a place I didn’t know I lost because the distractions filled my life of all the empty spaces. His hands on my face cleared the room. The empty spaces become empty again. It is not sad. It is a feeling of freedom. Life zooms in full focus to his face, and that face is everything. I am filled with a peace, a love, that I was born and created with, but had forgotten a long, long time ago. 

We know that peace holding our babies. We can stare at their sweet, innocent faces with their gurgles and giggles, and their sleep for hours. Everything else sheds away. They are our everything. Then they start crawling, and toddling, and soon they find new independence. Though they are still our everything, distractions start finding their way into the periphery. Our kids soon pick up the habit of distraction just as we did–from our parents, from our environment, from responsibility. It just is what it is. It happens so very gradually, we don’t even notice until our life is full, so we think. 

Until one day, you are awoken. It happens in the simplest of ways. Because that is how the true joys of life are–simple. I was washing dishes, my mind not even on the dishes. I was a million miles away living with the million other things that I had to do and what I already had done. A voice cut through the swirling galaxy of my thoughts and said, “Look at me mom.” The voice interrupts but the distractions need to be heard. They will not lie down for a simple interruption. They have been born of habit and so persist. “What do you need, Buddy?” 

The voice beckons again, but this time, he walks up to me and places his hands on either side of my face. They are like paddles shocking me back to life. The distractions cease. They don’t fade to the corners, they lift and fade into the ether. My Life is back into rhythm with what matters. This is not another distraction pushing out the distractions, like a drink, drug or food. This is real. This is God talking.
This is where we shut up and listen. 

Underneath all the noise, he wanted his mom. He wanted me to see him, to know he was there. Not partially, but fully. 

We all want to be seen fully, to be heard fully, but we learn to live without it. I’m not sure what it is in Wil that he did not learn that part of life, but I’m sure thankful that passed him by. I don’t listen to others as well as I should, but he reminds me to stop and listen. Not partially but fully. Whenever I stop, and turn my head to who I am with or what we are doing and fully listen, life immediately feels fuller. Because that is how the true joys of life are–simple.