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.

 

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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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Travelling Light

Yesterday, Wil and I went for a ride to the vet with the kitties. He sat in the car with their carrier perched on his lap, talking to the kittens through the vents, their purr boxes motoring strong.

When we arrived at the vet’s office and got out of the car, Wil was insistent on holding the carrier, though it was too heavy for him. So, I walked, slightly bent over, my hand on the handle with his, the carrier softly bumping back and forth between us as we made our way to the door.

“I’m carrying the kitties!”

“Yes you are, big boy!”

We were not moving fast, and soon a man, his son and two dogs were behind us, and followed us through the door. One of the dogs barked.

Wil immediately dropped his grip on the carrier, covered his ears, and went to a corner of the room and plopped down on the floor.

Dang, I don’t have Wil’s ear protectors. Mental note: order an extra pair to always keep in the car for unanticipated times like these.

When Wil gets upset like this, it can be difficult to talk him back from it. This plop down on the floor way of his is a hot topic amongst those of us in our Down syndrome support group. As individual and unique in personality each of our kids is, many of our kids share this floor dropping commonality.

The world moves really fast for our kids. They are always trying to keep up, and sometimes, well, they just get upset and need everything to stop. I’ve learned lots of techniques from other moms in the group that help. Like anything, some things work sometimes, but not all things work all of the time.

Last Friday, we were at Elizabeth’s final day of basketball camp for a brief ceremony. It was very loud, and Wil was having none of it. It was a struggle to keep him in the room for the ceremony, but Elizabeth wanted me there to watch her, and I wanted to be there for her. Sitting on the floor of the basketball court, I held Wil in my lap tight, rocking him, trying to comfort him, but all he wanted was to be out of there. Shortly after the ceremony, Katherine offered to watch Wil in the lobby. Other kids had moved in there to play. Those two walked off together, and I started to relax and enjoyed chatting with the other moms while watching Elizabeth and their girls run around from place to place in the gym, getting their new t-shirts and basketballs autographed by the coaches and players of the camp.

Then, Katherine ran into the room and said she thinks Wil had followed some people outside.

I shot through the door and looked around, no one. My friends, just seeing my face, knew what was up and started their own search. My mind went in a thousand places in those few seconds, where he might have run to, how fast he could get to the street, maybe he ran straight to our car and climbed in, he’s done that before, how are we going to survive the rest of the summer activities if this hypervigilance with Wil is required each time. His running off tendencies had dramatically decreased as he has gotten older, because I can reason with him more so he understands the dangers, but when he gets upset, sometimes, there is just no reasoning with him.

My friend Tracey called out to me she had spotted Wil. He did not go outside, in fact, he was on a basketball court happily dribbling a ball with another boy. Huge sigh of relief from all of us.

I watched him bounce, and laugh, and enjoy this time, where only seconds ago he was so very upset. The room was quieter, now, and he felt free.

The very next day after this basketball camp, we would have a full day at Katherine’s outdoor taekwondo testing, and I knew the length of it would be difficult for Wil. It would be loud, it would be long, so I brought along his ear protectors and snacks and knew there would be a small playground for him to enjoy.

Katherine’s day of testing went much better than Elizabeth’s ceremony. Wil happily played on the slides and swings adjacent to the testing area, all sounds muted by his ear protectors, and when it came time for Katherine to test, my friends quickly offered to keep an eye on him on the playground while I watched and videoed Katherine. Later, when it was time for the potluck lunch, one of Katherine’s instructors came over and offered to take Wil through the food line and help fill his plate, did he want a hamburger or hot dog?

Back at the vet, they sent us into a room right away. I assured Wil it would be quiet in there, so we walked in, his hands still over his ears. Once inside, he visibly relaxed, we let the kitties out of their carrier, they started exploring, Wil followed them around, and everything was A-ok.

After the kitties 2 shots and a clean bill of health, Wil and I left that quiet, friendly little room and went back out to the lobby to the check-out counter. I only needed to make a follow-up appointment for a second set of shots and for the kitties to be spayed. Wil’s hands quickly went back over his ears, and he plopped down on the floor by the wall. I’ll make this quick, I thought, and we’ll be out of here.

It was not to be.

The woman at the check-out was not un-friendly, but just a bit on the terse side. I smiled at her, and explained what we needed appointments for.

“Oh, you need to have those shots within 4 weeks, and the cats also need blood tests before they can get spayed,” she informed me.

The tech came up and told her we didn’t need one of the shots, the vet had waived it, and for some reason, that made her somewhat upset. Maybe those 2 just don’t like each other, I don’t know. All I knew was I needed to get this done and move on.

We got back to coordinating appointments, and another tech who was walking by came over and crouched down next to the carrier and was talking sweetly to the kitties. She saw Wil was upset and was trying to engage him, but he wasn’t feeling much like talking.

I could see he was about to make a run for the door, so I said to the woman at the desk, “My son is having a difficult time right now. Please mail me today’s bill, and I will call you about setting up these appointments.”

“No,” she said, “I cannot mail you the bill, it’s against policy.”

“I’ve been mailed the bill before, it hasn’t been a problem. I’m sorry, see my son over there. He is very uncomfortable and I need to settle this quickly.”

Wil jumped up and headed for the door. I ran over and caught his arm just as he was going out.

I heard the woman who had been crouched by the kitties, kindly say, “It’s ok, you can mail her the bill.”

“Thank you,” I said, and I ran back, grabbed the carrier, then caught up to Wil and took his hand, as I heard the woman at the check-out call out behind me, “I’m sorry, they’ve just changed all of the policies.”

Driving home, I looked over at Wil in his seat, carrier again perched on his lap, and he was happily singing to the cats and they purred back.

I guess I could be mad at that woman behind the desk, but I’m not. I think she genuinely felt bad at the end, and I believe life taught her a lesson more than any words I could have said to her. I understand the need for the office’s rules and policies, but we can surely be more sensitive to people’s needs at the same time. They do not have to be mutually exclusive. There is always room for adaptation, but people can easily overlook that fact.

When you have a child with special needs, you learn a heckuva lot about adaptation. You live and breathe adaptation. Your child simply does not fit within the boundaries of all of those rules and policies.

I can almost guarantee you are going to have battles with bigger institutions that rely heavily on rules, that somewhere along the way, forgot the people factor. You will butt heads with educators and program directors, and have multiple tiny instances like we did at the vet today, and learn that you now must always carry a set of ear protectors.

As you walk your way through all of the rules and the policies and the unpredictabilities, there are always angels. They appear just at the right time to help guide you through the maze of those big institutions, when you feel you can bang your head against their heavy walls no more. Or angels may appear as the friend, who can read the look on your face without needing say a word, and runs off to find your child like he was her own, and you breath a sigh of relief right next to her when he is found. Angels show up in the potluck line when you are juggling 3 kids, and gently take a plate and ask, hamburgers or hot dogs? They also appear as a crouching vet tech, who’s example opened the eyes of a policy-blind worker.

When the weight seems too heavy, the angels are always there to place their hand right next to yours, the weight softly bumping back and forth between you, as you make your way forward.Wil cats carrier

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.

Oh, Did You Say Something About An Apostrophe? Sorry, I Was Too Busy Washing Underwear.

Wil & Ivy

Sometimes I get really frustrated with the special needs community, including myself.

Let me preface that statement with the fact that I LOVE and COMPLETELY ADORE the people of DSST. They are my tribe, my people. They are overflowing with awesomeness and will stop whatever they are doing to laugh with me, cry with me, and walk me through any situation, and I am fully present to do the same for every single one of them.

Ok, that said, let’s get down to business.

I just saw an article with the subject about whether or not Downs(as in, Downs syndrome) needs or does not need an apostrophe, and I’m over here, like, my kid has been pooping his pants for the last month, we have no idea why. Is it constipation, is it nervousness, is it nutrition, and so tell me why the heck am I supposed to care where someone places their apostrophe in the word Down syndrome again? ….http://christieleightaylor.com/oh-did-you-say-something-about-an-apostrophe-sorry-i-was-too-busy-washing-underwear/

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/

Wil Calendar 2008 004

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