A boy named Ben

Christie Taylor:

This is a blog written by the social worker that helped our family when Wil was born, and we also know Ben :)

Originally posted on Voices from the Infant, Toddler and Family Field:

It’s fascinating to me how my personal and professional worlds parallel the external world, and how certain events help me pause. The world is full of fear right now, and has been for a long time.  I have thought about how that fear has affected me in my work, and in my personal life. The fear has blocked kindness to some degree. And then yesterday and today happened.

Yesterday I sat with a mom whose son is 2 1/2 years old. I’ve known them since he was an infant, when he came into the world way too early, weighing only 1 pound. After 2.5 years, she was able to talk to me about her agony of not being able to hold him after he was born, as it took 4 days before he was stable enough to be held by his mother. Those 4 days were the longest most harrowing…

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Do You See The Yellow?

Check out my latest blog on my website: Wilingness.com

I’m not sure what grade I was in, but I do know I was quite young, when my classroom teacher placed a picture on each one of our desks. She casually asked the class to take a look at it, and then, after a few seconds, she asked us to flip the picture over so all we could see was the white back side.

“Without turning your picture back over, who can tell me anything in your picture that was yellow?”

I wracked my brain yet I couldn’t remember a single yellow detail. Not a one!

A few hands shot up, and I looked around dumbfounded. How could I have looked at that entire picture only moments ago, and not remember anything that was yellow? What else didn’t I see?

Though I didn’t consciously register it at the time, this was an “ah-ha” moment for me. I was beginning to realize that though I believed with every fiber of my being I had seen the entire picture, I was really only recognizing what I had chosen to focus on, whether consciously or not.

Some 40 years, a husband and 3 children later, I found myself rushing around the house on a Tuesday night. Katherine and I were to leave for taekwondo within the hour, dinner was cooking, Wil had a book to read to me, Katherine and Elizabeth were intermittently asking for help with their homework, and I was still yearning for a shower since teaching a 2pm bootcamp class. Once dinner and homework were successfully completed, I zipped across my carpeted bedroom floor, headed straight for the shower in the adjoining bathroom, the movie reel in my mind replaying the same hurried thoughts over and again. Then, just as I was quickly padding past my bed, the glint of something at the edge of the bedskirt caught my attention. My mind and body stopped fast in their tracks….http://wilingness.com/2015/11/09/do-you-see-the-yellow/

Sky's the limit! (my son, Wil, age 5)

How about adding a little WILingness to your Life?

Hi All!wilingness01

I’m pretty darn excited!! I have a real live website now with a real live logo and everything! And to use Wil’s words, I did it ALL BY MYSELF! The website is www.WILingness.com

I even created a fun, upbeat short 45 second video introducing my son, Wil! Head over to Wilingness.com and check it out! I just know it will leave you with a smile!

My writing over the years has found it’s way to a central theme, which is opening my eyes to the power of small miracles all around us, and I only discovered them when I had the WILingness to see them. (clever, huh?!)

Sooo, this website will have some blogs you’ve seen before, and lots of new upcoming ones, all with the central theme of “WILingness.”

Now that I have the video thing figured out, I’ll be doing some of my blogs via video podcast. It’s big girl time now! :)

I’m only just getting started, but do me a favor and stop by to check out the VIDEO, LIKE Wilingness on Facebook, and SHARE and/or comment away. And I have a page on this new website titled WHY WILINGNESS if you are still confused about the name ;)

Thanks for checking out www.WILingness.com!!! Your comments are requested and appreciated!!

All the best,



Alcoholism and Intuition

There is a lot of alcoholism in my family, and I have had a hard time making peace with my own drinking over the years. I have enjoyed a glass or two of wine every night. It relaxed me, and is something just for me in a life of being a caregiver to my family.

For some that is a lot, for others it is not enough, but the point is, is it ok for me? And, I decided it’s not. I have too many past feelings and emotions surrounding alcohol. I’ve discussed it with Matt, and because he has not dealt directly with alcoholism, he does not understand my fear of one or two glasses a night. He is supportive, but cannot relate. What can these few glasses hurt? I drink responsibly, so why can’t I allow myself this? That makes perfect sense, except for the nagging feeling within me that it’s not ok.

I’ve learned, over the years, and especially with raising a child with more needs, a lot about self-care. It is a must. I also have learned to shut out other people’s “Shoulds” for me, and listen closely to my intuition and follow my own direction.

So, I decided to stop this glass a night drinking. I will still enjoy a few cocktails with Matt on the weekends, but the habitual week days, no. So, on my last shopping trip, I did not buy any wine. I admit it was hard. I had grown to rely on that glass for my relaxation. But, I know, to quit a habit, and be successful in sustaining it, I must put something positive in its place.

I heated myself some decaf tea, stirred in a big, sweet spoonful of my neighbor’s homegrown honey, took a cozy fleece blanket outside and sat on the back porch. The cat hopped up on my lap, and her purr motor was very lulling. Soon, Wil found me outside, pulled his wagon out of the garage, full of toys, and he pulled it around the yard singing to himself.

Positive reinforcement for kicking a habit? Hell yes! This experience is exactly what sat right with me deep down.

No matter what anyone else says or does, living at peace with my inner self and beliefs is what fulfillment is really about. There are no if, ands, buts or shoulds about it.

So, I raise my favorite tea mug from my back porch to yours, and I pray we all find the strength to bring forth the joy within ourselves to live the lives we personally choose to live.

Shine on in your own way, every day. We are worth nothing less.


Why Real Life Ninja Turtle Warriors Eat Ice Cream

Wil vanilla shake 2015

In the late summer, the kids and I went to a local wine and cheese store. I wanted to pick up a nice bottle of wine and gourmet cheese for my mom’s birthday. We parked, and headed inside.

There is an ice cream shop down the street and the kids asked if we could go afterwards. It was a warm, calm and slightly overcast day. Perfect for sitting outside.

“Sure, I said, let’s get these things for Grandma, and we’ll walk down there.”

They practically skipped into the wine and cheese store with that news, and I started my search for my mom’s gift. It wasn’t long before Wil found nothing interesting and wandered off to the stairs and made his way to the basement. I quickly inquired if there was a door to the outside (that Wil could escape from). No, the owner said, don’t worry, the only door goes to the bathroom.

I allowed Wil that time downstairs, while the girls and I tasted cheeses. We tried varied thin slices of many exotic and sharp flavors. We had fun, relaxed-mother daughter time that is not always possible with their busy, younger brother around.

We agreed on a white sharp cheddar and raspberry for Grandma that packed a strong bite followed by a touch of sweetness. As we waited in line to check-out, Wil had made it back upstairs and wandered over to the coffee grounds. Katherine saw a mess in the making, so without a word, she walked over, took his hands in hers, and started spinning him in circles. Gentle and slow, mindful of the fragile merchandise around them, the two of them singing and laughing.

The potential mess gleefully averted, we walked out, purchases in two pretty black bags, and made our way down the street for some ice cream. Everyone was in great spirits (who isn’t when there is ice cream ahead?) The street was busy, so I had one hand on Wil, as he can take off at a moment’s notice. I needn’t have worried, he stayed happily beside his sisters without a glance at the street.

When we approached the ice cream shop, there was a face painter set up just outside of it. After we went inside and bought our ice cream, we found a table just adjacent to the artist and watched passerby’s stop to get their faces painted. One boy chose an eerie white skull, 2 girls selected blue and pink glitter-covered butterflies, and one mother decided on a graceful swan princess.

As the line to the artist diminished, I looked over to the twins and asked if they wanted to go next. They laughed and shook their heads. Apparently, at the ripe age of 10, they were just too grown up for such silliness.

Wil jumped to attention. “Me, me, me!” he said raising his hand. He walked up to the face painting chart and chose a green and orange ninja turtle.

I walked over to the stool with him, and he climbed up on that tall stool on his own, and turned himself around and sat down. The artist asked him to close his eyes. He squinted them real tight, just like kids do when you tell them to pretend to sleep, and peeked with one eye.

The girls and I watched the artist as she went to work, smiling at her squinting subject. When his orange and green ninja turtle mask was completed, the artist held up a mirror for his observation. A look of satisfaction spread across his face, and he hopped down off of the stool to finish his vanilla shake.

Soon afterwards, we all piled into the car, and Wil asked me to adjust my rearview mirror so he could take in his reflection from the back seat. He repeatedly rotated his head this way and that, eyes straight and steady in the mirror taking in every angle of his ninja likeness the entire drive home.

Peeking up at Wil observe himself in the mirror, I marveled how Wil so naturally slows things down, just enough, so that I will never look at a typical day as typical again. There are so many adjustments to our family’s regular day to day that I can never move too fast to miss the many varied perspectives on even the simplest of moments.

And, isn’t that how we learn to be Ninja Turtle Warriors? By slowing down, just enough to look at a moment in all of its varied angles, so when things start to get messy, we are not stumped, rather, are able to jump in, grab that moment gently by the hands, and spin and sing our way through it, until the moment has passed, and we find ourselves in a new direction, run-skipping our way to the ice cream store.

Yep, I’m absolutely sure that’s what true, real life Ninja Turtle Warriors do.


Its a Stone’s Throw: Spreading Down Syndrome Awareness

BW 2015 Stommen

Last night, stretched out next to Wil in his bed, having just finished reading him his bed time story, I pointed up to the pieces of paper taped on the wall next to us.

“Where is the beetle?” I asked, and he pointed to the picture with a colorful crayon drawn bug.

“I did that one!” He said.

“Yes, I love her purple head.” I said.

“And, orange feet!” He replied.

“How do you like Ms. Wier?” I asked (Ms. Wier is his new resource room teacher).

“I like her.” He said.

“What did you do with Ms. Wier today?” I asked.

“I don’t know.”

“You mean, I’m thinking?” (A great technique I learned from Wil’s summer speech therapist.)

“Yes, I’m thinking.” (Ha! It worked again!)

“Ok, what’s ONE thing? Just one thing you did today with Ms. Wier?” I asked. “Did you count dots? Go over to the bean bag room?”

“The Fall book!” And, then it all started tumbling out.

I laid there, listening, so thankful. So thankful he could now tell me these things, and so thankful he is with people who love him during the day. People who want him to learn just as much as I do.

And, sometimes, I also feel an overwhelming sadness come over me during these same moments. I think of the sweet babies with Down syndrome in the orphanages overseas, or even children here in the US, who were given away, just because of their teeny tiny extra chromosome. Children who have no one to ask them how their day was, children who are not told they are loved. They fall further and further behind by the day, proving the statistics that their parents so feared, simply because they are not given the love, the time, or the opportunity. As these thoughts run through my head, I look, in close up view, at my beautiful boy’s face, his sweet soft pale skin, the pink cheeks, that bright smile, and his wispy blond hair. I smooth his hair back and say to him:
“You are so very loved Wil. I love you so much, I want you to know that.”

He smiles, and says, “I know!” And he goes right back to telling me all the things he did with Ms. Weir that he “didn’t know” just a few moments ago.

When I have these happy/sad moments, I think back on Mother Teresa’s quote, “I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”

Last Sunday, our Ds support group had our annual Buddy Walk. It was a beautiful, sunny day, the energy was high and the support for Wil and his friends with Down syndrome was no less than amazing! Wil and his buddies with and without Down syndrome held hands on the one mile trek, parents snapped pictures on the playground fixtures along the way, everyone devoured pizza, enjoyed cotton candy, participated in crafts and danced together. There is no fear of those 47 chromosomes on Buddy Walk day. In fact, those with the extra chromosomes are celebrated! And, the best part is, that celebration of our kids does not live only on Buddy Walk day. It spreads far and beyond. We carry that love with us, and have the power to influence others with that love; it is a stone cast across the waters creating many ripples.

I will still have those happy/sad moments lying next to my boy in the times to come; the great waves of gratitude, and the tides of sadness for the sweet souls who have been so sadly left behind. But, maybe, just maybe, for all of those that love my son and his friends, their love will spread to reach a mother in doubt at just the right time. And, that one mother, having been given the opportunity to see her child’s extra chromosome in a new light, will feel her fear dissipate. Over time, as her love grows, she, having known doubt, will become a stronger advocate, having even more power to focus her light on those mired in fear and doubt. And, so the stone is cast across the waters.

Why I’m Sticking With Gratitude

Yesterday, after teaching a morning bootcamp class, I zipped over to the grocery store. The plan was to make it a quick trip. I had a load of things I wanted to accomplish before my afternoon class.

Cool, I thought, the parking lot is near empty, I pulled into a front parking spot, and grabbed myself a big cart (I established a personal rule of no small carts, no matter how small the trip, after the very embarrassing small-cart-incident of unexpectedly hitting a dip in the parking lot, the abrupt stop of the cart almost sending me barreling headfirst, in plain full parking lot view, right over top). The big cart and I safely and efficiently cruised through the aisles, finishing in record speed at the check-out line, with only one woman in front of me, who was already swiping her credit card. Score!

When it was my turn, the woman behind the check-out counter smilingly asked her required questions: Had I had found everything ok, and how was I doing? We then made typical check-out counter small talk as she swiftly swiped my items; what a beautiful day it was, how warm and sunny, and so on. Friendly, yet impersonal. And, I probably would have left the store in about 3 more minutes, with a lift to my step from the ease and friendliness of the experience, but without much further thought as I moved on with the rest of my day. Instead, I turned my head to the new sound of voices entering the quiet of the store.

A small group of kids, all with varying special needs, and their educators, were walking in and grabbing carts. There was a lot of excited chatter amidst the distribution of carts, and once a cart was in hand, a child and their educator were happily off on their shopping adventure. I spotted the back of the blond head of one of Wil’s friends, Nick, as he expertly made his way down the aisle with his cart.

The check-out woman saw me looking their way, and said, “That is a special needs class from Saline schools.” To which I replied, “One of those boys is my son’s friend. They both have Down syndrome. I was hoping to catch his eye, but he went off shopping in the other direction.”

“Oh,” she said, “I was a para-educator for 20 years. My son also had special needs. He went to school at Highpoint (a school for kids with a higher level of needs).” “I know Highpoint,” I said, “I used to work at the WISD and my neighbor recently retired from there.”

“When I started teaching,” she told me, “they were just starting inclusion. I believe in inclusion, but it’s not right for all of our kids. My son needed to be at a place like Highpoint.”

“I understand,” I said. “I’m so thankful for the inclusion my son has right now. We have not had to fight for it, he naturally receives what you had to fight for those years ago. Yet, I also understand what you are saying about inclusion not being right for everyone. Though my son enjoys and benefits from inclusion, I found in certain subjects, like math, the most effective place for him to be is in the resource room. Each child is very different.”

She nodded. “My son was completely typical, then he almost drowned when he was 2 ½. After that, he had multiple special needs, too many to be at a regular school with inclusion.”

She paused, then looked me right in the eye, I could tell she was deciding if she should share something with me, then she did.

“You know, there are some things worse than dying. To have a typical child and then…”

My heart went to the pit of my stomach. I looked at her gently, and all I could do was nod. What words are there for something as heavy as that?

“My son did die, he was only 10 years old. I have 6 children, so, well, that helps.”

But, what can truly help? She did what she could to cope. She helped other parents who had kids with special needs as a para-educator. I have absolutely no doubt that many parents found comfort in her knowing nods and compassionate words when she was responsible for the care of their child each day. I also have no doubt that those kids under her care received her best. You don’t go through what she did, and do the work she did for 20 years if you don’t care deeply about the purpose of that work.

We talked a little more, but by then my items had been checked and bagged, and a man was waiting behind me in line. It was time to go. I told her it was really good talking with her, and we wished each other a good day. I know I will make a point to find her line again.

Back at my car, filling it with groceries, I thought of our conversation. It was heavy, yes, but also, I felt a huge sense of gratitude for that time with her. Gratitude that she chose to share her story with me so that I could connect with her and learn from her in my very own life experiences.

Good days are good. The front parking space, the cruising through the uncrowded aisles, the smile and friendliness of a check-out worker, and the sun burning away the clouds and warming the air. They lift us, they carry us to a certain point, and they even spread, but they don’t run very deep, because they don’t stick. We catch them and hold on to them when we can, and enjoy them, but they are unpredictable and fleeting. They come, and they go.

Stories shared and connections made as in the one at the grocery store have staying power. They stick. I am never left the same after conversations like that, and it’s a wonder, how many I have had just like that since Wil has been born. And, it’s in these very unlikely, common places where they happen.

Last Saturday, I was in the hallway at Katherine’s karate tournament. I happened to put on a necklace that morning that our Down Syndrome Support Team sells. They are beautiful, handmade necklaces, and nothing about them says “special needs” except for the fact that they are sold at our Buddy Walk each year, the proceeds going to our support group. In the crowd of people walking back and forth in that hallway at the tournament, a blond woman stopped, pointed at my necklace and said, “Buddy Walk! I have about 5 of those! I love them, and yours is especially beautiful!”

“Thank you,” I said, “do you have a Buddy you walk for?”

“Oh, lots of them. I’m a special education teacher in Saline.”

We shared a smile, and went on our own separate ways down the busy hallway.

A passing friendly comment on a piece of jewelry in a crowded public place, but it will last longer than the smile she gave me. That compliment drives deeper, because it carries with it a common purpose, a common cause, which we both innately understand in those few words we exchanged.

At a birthday party I went to at a lake, where Wil was happily splashing around, a woman walked up to me, and said, “Your son reminds me of mine when he was your son’s age. So blond, so sweet. I miss him at that age.” And, then we shared stories like old friends reconnected about our kids and our lives, except we had only met that very moment, and our only known connection was Down syndrome. I learned so much about the experiences Wil could look forward to in her stories, and she was able to look back and relive some of her son’s youth.

I can recount many such stories, in restaurants, walking down the street wearing my Buddy Walk shirt, and other such every day places. I believe that I am so easily approached with these experiences is not for any other reason than that I am open to them now, when I wasn’t before. I did not have the “WIL”lingness those years ago that I do now.

Last night, I went to bed overflowing with gratitude. Not because of a front parking spot or the ease of my day, but because I now have opened myself to the gift of looking underneath the surface shine. Diving down deeper, past the pretty and shimmery surface, down through the murky and the messy, the deeper of the emotions, and down, down, down, down, to uncover the treasure chest of connection. That is where the staying power to fulfillment is. That is what sticks.

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