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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ON ROYALTY, GOLDEN PEOPLE & FENCES

This morning, I took Elizabeth to the orthodontist. It was a first consultation, so everything was very easy going and pleasant. Her orthodontist shares the name of Elizabeth’s twin sister, Katherine, and when I told her, she replied that we have royalty in our house. A queen and a princess. I laughed, and said, “Would you believe we also have a prince? Prince William.”

“We do, too!” She said. “He is my little prince. He was born prematurely.” We talked briefly about her William, and then eased back into orthodontic talk surrounding Elizabeth.

As we were leaving, I mentioned that my William would be coming to see her soon, as well. She asked what she would be seeing him for, and I mentioned a cross bite and the need for an expander, because his mouth plate was too small for all of his teeth. I told her he had Down syndrome, so these issues were quite typical, and she nodded knowingly and asked how he did at the dentist. I told her it was a big struggle at first, but the last two visits, now with Dr. LaRock, had gone quite smoothly. Great, she said, maybe I could bring him in on Elizabeth’s next visit to get him comfortable here. Then, she shared with me that her William also had learning issues, due to his prematurity, but he had a great teacher this year, the same one her other son had the previous year, so she was much relieved. I replied to that, “Yes, I understand. Every year, it’s like starting at zero. It’s a wonderful relief when you don’t have to.”

“Ah, yes!” She nodded in agreement, “It’s exactly that, isn’t it? With all of his academic issues, I just want him to be happy at school.”

There are so many pieces that go together to make that work, the parents, the siblings, the IEPs, the teachers, the assistants, the special ed director, the therapists, the peers, and the laws to be upheld if not being adhered to. I have found, in this journey with a child with special needs, the explaining can be freaking exhausting. When I happen upon a doctor, or a school administrator, that just gets it like she does, I know I have struck gold.

The royal woman who shares my daughter’s name will undoubtedly be Wil’s orthodontist.

Not too long ago, I was having a very trying morning with Wil. I left the house out of sorts, to teach a bootcamp class. I pumped myself up on the way, and taught the class in high spirits, but underneath that morning was still tugging on me. After class was completed, and we all dropped on the mat to stretch, I happened to sit down with two other mothers who have kids with special needs. We talked about typical everyday things, slow and easy, enjoying the reward of the down time after a tough class. I could no longer ignore the downward pull I was feeling, and as the class emptied out, and we still sat there, foam rolling our sore muscles, I shared that I was frustrated from my morning, and I was having a hard time shaking it. They immediately gave me a nod of understanding, just like the kind doctor earlier today. They got it. No explaining needed. They opened up, began sharing some of their stories, and though our children all had different disabilities and challenges, the underlying emotions were the same. We formed a bond, and I knew, these friends were golden.

A diagnosis immediately places you in a very vulnerable position. It can be very scary at first, it’s uncharted territory for you. But you meet people who understand, who get it, and they help you along the way when you need it. You learn, and you grow, and begin to understand how golden that innate understanding is. I have lived and I have learned. There are people who have dove in and criticized, how I “Should” be doing things this way, and “should do” that and judged every little move I made. But, the funny part is, not a single one of them has a child like Wil. They are the sideline critics, and I no longer have time for them. Their words are loud, but hold no meaning. There is a quote that says, be vulnerable, then put up a big fence.

Then, there are the golden people. When I started opening myself up, so many amazing coincidences have happened that invited them into my life, for which I am eternally thankful.

In this life, I have found that unity and a sense of community is everything. These friends are my gold, they are my shine. We serve to brighten one another. And, if you are one of those that enjoys throwing stones at things that shine, I hope you enjoy the view of our big fence.

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A Coke, A Hug, and A Smile

Beckie and Wil

Monday night, I was talking with one of my friends who is a skilled nurse, and many of her patients struggle with mental illness. Upon entering the room of one new patient, she found the woman on her bed, sobbing uncontrollably. When my friend calmed her down enough to inquire what the problem was, the poor woman blurted out, “Someone took my Coke away! All I wanted was a Coke with crushed ice!”

My friend made her way down the hall, and returned with a nice cold, fizzing drink filled with crushed ice. The woman stopped crying immediately and thanked her profusely.

“A Coke with crushed ice is her world right now,” my friend explained.

I do not understand this woman’s mental illness like my friend does, I have neither the training nor the experience, but I do understand what a diagnosis does to you. I have felt how it pulls the rug hard and fast from under your feet, and leaves you suspended in time, a whirl of scientific terms and statistics closing in on you. Your world has instantly been de-humanized, and you crave something that gives you comfort, some human understanding, in this too close and confusing place. And then, someone takes your freaking Coke with crushed ice away? What the hell?

I have a dear friend who recently went through a deep depression. I had never seen her like this, and I was really scared for her well-being. I sat with her and listened to her long-buried struggles bubbling to the surface, and how terrifying and difficult it was to make her way through them. I felt so ill equipped to help her, but I didn’t want to burden her anymore than she already was by asking what she needed from me, so I was there for her in person as much as I could be. Finally, I admitted to her that where she was scared me, and I wanted to help her any way I could, so please tell me, how can I be there for you in the way you need?

And, she said, just be you, that is enough.

Whenever anyone asks me about how I felt when Wil was diagnosed with Down syndrome, it’s like I have this internal zoom lens that beams me back to the day he was born, with his 7 lb body wrapped tight in a white hospital blanket with a thick blue and pink stripe, laid upon my chest covered in a thin, dull white hospital gown, with little faded blue patterns. The internal camera zooms further still, and rests in a full close-up of his eyes. Those big, blue almond shaped eyes.

So many people did not know what to say at that time. Heck, I didn’t know what to say. Then, my girlfriend Kelly, who I called up shortly after Wil was born, and sobbed into the phone that he had Down syndrome, asked me, “Well, how much does he weigh?”

What a refreshingly normal question! In that one question, I felt a sense of normalcy and of community, two things I had been sorely missing in those tight four hospital walls. I am sure my emotions at that time were not much different than the woman who was delivered that sparkling Coke with crushed ice that had so recently been taken from her.

So, when my dear friend struggling with depression answered my question of how I could help, by saying she only needed me to be me, that was enough, I fully understood. I needed no further explanation.

I think, many times, when we want so desperately to help a friend struggling with a diagnosis, it’s easy to get caught in the trap of thinking we need to do or say something extra special, when what they really need is the normalcy we bring with us, and a comforting sense of community.

And, if she cries out for a Coke and crushed ice, for pete’s sake don’t question it, be a friend and get her one, and deliver that Coke with a hug and smile. A friend deserves nothing less.

To Those With the Gift

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There are some people who are just extra special, that have the “gift.” I am not one of them. At least in the sense of what I am speaking.

Today, we had an 8-year-old friend of Wil’s over. In the last 2 years, Wil has not been invited to a birthday party or a sleep over, yet I know very many kids his age are doing so.

I understand. I get it. I don’t say this to make anyone reading this feel a sense of guilt. It’s simply our reality.

I watched Wil play ball with a group of typically developing boys. They were so kind and patient with him. They encouraged him and included him fully. But when he grew tired of the game and walked off of his own will, I could see the sense of relief in the boys’ faces. They could just play. They did not have to be patient. They just played with others of their own level.

You may say, well, that is a good lesson for them, and yes, I would agree it is. But, really, they are 8 years old. They just want to play. Didn’t you? I know I did.

So today, when Wil’s 8-year-old friend, Lila, who asked for this play date with him came over, I was just as thrilled as Wil. She was not cajoled by her mother out of the act of kindness or charity, she simply out of her own will, like most typical 8-year-old kids, asked for a play date with someone they like.

I was also a little nervous. When she came over before, Wil’s two sisters were here. This little girl is smart. Very intelligent and very brave. She can easily hold her own with tight twin girls who are two years her senior. When you are 8, that 2 year difference is a big deal, but not for her. When Wil had his stubborn moments, he could have a break while she played with his sisters.

Not today.

Wil’s sisters were with their Grandma and Grandpa Taylor. A fun swimming and boating day with another 10-year-old friend an hour away.

The play date started off well, a new introduction to toys, then lunch, that part is easy for just about anyone. But, Wil does not speak the same level she does and he still loves Dora and Doc McStuffins. Kid stuff. Fine by her, we’ll just move on to something that doesn’t need an age limit. Let’s play Wil’s drums!

BOOM BANG CLING (oh, yeah, the cymbals, too). Out came the recorder, and whatever else I had in that music box. It was the happiest I’ve been as a mother of three in the midst of ear shattering noise.

Then it was off to the hose, and the slide that goes into the little pool. Splashing, spraying, laughing and squealing. Water is always equal playing ground. Until, Wil sat at the top of the ladder and wouldn’t budge.

I have seen similar instances to this at the park. Wil has very little control over his environment. Everything and everyone move so much faster than he does. So, what would you do if you felt you had little control over your environment? If you could sit at the top of the slide and make everyone wait, when they are usually moving at warp speed ahead of you, wouldn’t you delight in making them wait? Just a little bit? So, at the top of the slide Wil sat, un-budging.

At the park, I see two reactions. Kids either “mother” and sweet talk Wil, or they just wait until I come over and take care of the situation.
Not this girl. This girl has the gift.

“GO DOWN THE SLIDE WIL!” She says loud with authority.
He gives her a look, sees that she means it, and down he goes.
I love it! She called his bluff!

You see, there is this delicate balance between being mean, being enabling, and seeing where someone is simply being a stinker.

She saw stinker, and she called it, frank, to the point, and the next moment they are back to laughing and spraying each other with the hose.

It seems so simple, so typical, from the outside looking in. But, I’m on the inside now, and Wil is just not treated in that typical way, because, well, in some ways, he’s not typical, and people just don’t know what to do with that. So when I see something like this, I see it for the gift that it is.

I’ve heard it said that everyone should have a child with special needs. And, I know exactly what the author was talking about.

How do you appreciate something like day so completely? How can a ride down the slide have so much meaning? How can a simple play date fill you so fully?

I was not born with the “gift.” And, I think, that is exactly why I believe I was gifted Wil. I would have missed so much without him.

~This post is dedicated to those of you who have “the gift” …you know who you are, and I am so very thankful for you! And, for those of you, like me, that do not have it, there is still hope, if we simply pay attention and learn from those who have it. Life is so very much brighter that way.

Friends Keep Your Heart Light

I was struggling with overload last night, and again this morning. Try as I might to pinpoint the source, so I could address it, it just wasn’t coming. I was a stressful blank….http://christieleightaylor.com/friends-keep-your-heart-light/

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Moms around the table

There is a small group of moms sitting together at a local restaurant. They are sipping on a cool drink, it’s an unusually warm day for early May in Michigan…http://christieleightaylor.com/moms-around-the-table/

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