A Winning Spirit

Last Friday, I took Wil to his swim lesson, and another mom from our Down syndrome support group was there with her son. We started chatting it up as our boys swam, and she was telling me how her son also plays soccer. She explained how it is a “typical” soccer team, and the other parents and kids on the team, and on the competitors teams, are very supportive and encouraging of her son, even though he is quite a bit slower.
Then, during a particular game, there was this one parent who cheered on his child to cut past my friend’s son, and score a goal, which he did….http://christieleightaylor.com/a-winning-spirit/


World Down Syndrome Day or World Celebration Day?

Every day, we have our ways of celebrating our kids, our friends, our extended family members. We laugh with them at those funny, little things that they do, or we give them a hug just for being them, or we pull our hair out in frustration over certain idiosyncrasies, but deep inside, we love them for being them.
Today, March 21, is World Down Syndrome Day (signifying the 3rd copy of the 21chromosome, cool date idea, huh?), but in a way I wish it was Let’s Celebrate the World Day! Because, really, what it comes right down to, is celebrating people with Ds just like we do others every single day……read on at: http://christieleightaylor.com/world-down-syndrome-day-or-world-celebration-day/
Wil 8th bday

Beautiful Girl

Katherine is so different from me, sometimes I just need to sit down on the floor with her quietly for awhile, and then she will start to open up and tell me things. Last night, we were sitting on the floor of her room, our backs against the bed, and she was telling me some things that have been hard for her. It breaks my heart to hear those things, no one wants to see their child feel hurt, so we both shared some tears, as listened and then we talked it out. After we worked through her story, she said, “Do you want to look at a book I’m reading? It’s really good!” She stood up to get her book, then brought it back and sat next to me. The first thing she did was expand the book jacket so I could see the full front and back cover together, and it formed a picture of a large landscape. She said, a bright smile coming back to her face, “Isn’t that beautiful?”
Yes, you are Katherine, you are so very beautiful, my dear girl.


View on my Website: http://christieleightaylor.com/beautiful-girl/

The Stare

Crystal Mountain pool

We were up skiing at Crystal Mountain, and Wil decided he wanted to go for a swim, so we went down to the pool leaving his dad and his sisters out on the slopes.

In the pool another couple was playing with their four children. The wife and her daughter went to the hot tub, while the dad stayed in the pool playing with his boys. There was an older woman swimming laps, doing the kind of “head up out of the water frog kick” thing. She kept trying to discreetly look over, and the look was always at Wil, not at the dad with his boys. I could read that look on her face, I’ve seen it many times over these last 8 years.

Does he? Does that boy have Down syndrome?

When Wil was a baby, I wavered over and over, when in public, do I tell people? They’d stare just a little bit longer at Wil, and some people would come right out and say it. “Oh, he has Down syndrome doesn’t he?”

On Down syndrome support pages I read the question all the time from new parents, “When we are at the grocery store, and people say something about our baby, do we tell them he has Down syndrome?”

The answer is so simple to me now, but back then, I asked that same question. My answer now is, take it one experience at a time.

If I told myself that answer 8 years ago, I would have freaked out! No, I can’t do that, I need answers!

When our kids are babies, we have so many uncertainties, so many unanswered questions, but being in that place is exactly where we are forced to grow.

Through trial and error, and lots of bumps and bruises, we learn how to trust our intuition. We learn that bumps and bruises aren’t a bad thing, they just teach us to change direction, and try a different tactic. We learn who we are, and how to trust ourselves.

So, now, when I see those people who stare, I don’t immediately jump to conclusions, or take an automated response. I evaluate the moment. That evaluation is based on past experiences, and what I cannot define better than a vibe or feeling I get.

Because, you know, I could have really missed out if I listened to only what others said and ignored my inner feelings. When people stare, I just feel a certain vibe. With the lady at the pool, I felt a vibe where she just wanted to satisfy her curiosity, so she never met my eyes, or glanced my way, so we went on with our business, she with hers, like many strangers occupying the same space. Yet, there have been many occasions in public places where I’ve seen the stare, and I just feel some connection in it, so I look up and smile, and my smile seems to unleash the friendliness in these people, and we make a great connection. Just strangers, who have never met, and I find out that a niece, a nephew, an aunt, or even their child has Down syndrome. One woman told me her son is a young adult now, but Wil looks just like he did, blond hair, and how it is not an easy life, oh, but how very wonderful it is. Just you wait!

I would have missed many of those connections if I had some automated response, or already had my mind set on what staring means.

Sometimes, I think, we don’t have to explain anything, or have it all figured out to an exact science. Sometimes, simply exhibiting a little friendliness can tell us exactly what we need to know.

*You can also view on my website at: http://christieleightaylor.com/the-stare/

Why I Gave Up the R-Word Fight

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I have given up the R-word fight. I will do it no longer.
I am done, fini, the end.
Fights take so much darn energy, they are not sustainable over the long term, and at the end, there is always a winner and a loser. I don’t want any losers in this fight, it’s too important. I want to find a way for us all to win in this. The only way I know how to do that is to share.
So, I’ve put away my R word boxing gloves, and replaced them with a keyboard, and share my heart out to you.
You see, I once used the R word, because I didn’t understand the power that word held. I didn’t need someone coming up and telling me how very wrong, awful and hurtful I was for saying it. And, if we are trying to avoid those wrong hurtful feelings, why fire back with them? To change, I needed someone to help me change my thinking. I needed someone to help me understand why it was wrong.

Now that I have the privilege of raising my sweet Wil, who has Down syndrome, I know, first hand, how very hurtful that word is. A word is not just a word. I know better. I know better, because I know my son.
So, to help you understand the hurt of that word, I want you to know my son, too. You may never get to know him like I do, and that’s ok. I just want you to know him enough through my words, that you can feel a compassion for him. A compassion for the work he has to do, and all of the support and emotions that surround that. It is not an easy life, but it is such a beautiful life, and it is very hurtful to have my son hear a carelessly used word to degrade that.

So, I will not whap you in the nose for using the R word. Instead, I will invite you into my son’s world, so you may get to know him. And, when that word is about to escape your lips out of habit, you will pause first. Not because you remember “you aren’t supposed to say it.” You will pause, because, now, there is something within you that feels it’s wrong. You know deep inside that it just isn’t right, and so choose to express your feelings in a different way. 

So, come join me, no boxing gloves needed. Sit, get comfy, let’s have a chat, and get to know each other. We are all winners here.

YOU CAN ALSO READ THESE POSTS ON MY WEBSITE: http://christieleightaylor.com/why-i-gave-up-the-r-word-fight/

Who Am I To Share?

christie 3When Wil was about 2 years old, I found out we could have a social worker come to our house as part of the Early On program, that helps families “adjust” to having a child with special needs. Wil aged out of Early On at age 3, but that one year I had with the social worker was so beneficial, that she became my therapist, and I’m working with her to this day.

And “working” is the correct term. She is very compassionate, but she also really pushes me. She is always helping me to grow a little more, push a little further, and though it is not easy, I know, from all of our past experiences, how very freeing and gratifying that growth is.

I’ve shared many of those growth experiences with you, but sometimes, I’ll go back to that old insecure place in my mind and wonder, who am I? Who am I to share when I still have so much to work on? I’m not a skilled therapist.
And, I do the same thing in my mind sometimes with sharing my experiences with running. I do well and work hard, but I don’t win the races. I’m not as skilled as many out there. So, who am I to share?

But, I’ve learned to answer that question, instead of letting it stop me in my tracks.

I am not a therapist, I am not an elite runner, I am a work in progress, and always will be. I love growing, and learning, and doing the best with who I am, even though on occasion my old “perfectionist” self still likes to voice it’s opinion. I’m a person that has learned the difference between selfishness and self-preservation. I’m a person that has earned who she is now, and to be both proud of my accomplishments that have gotten me to this place and also to know that everyone earns things in their own way.

We each have value and a great story that we have learned in the process. Just because my story isn’t perfect, or elite, or highly educated, does not mean my story does not have value. I don’t need to win a race or be perfect to know how to get through this life, but I sure can learn a lot from those that have a higher education or more experiences than me. My experiences are true and they are real, and because of that, even if they aren’t perfect, they may just be the right words for someone going through something similar.

I know others who have helped me so very much by sharing their stories, and so, the question really is, who am I not to share mine?

Why You Need A Village

311986_287884221221921_100000010370940_1298934_1621644385_nThis Down syndrome thing, it’s not an easy life, but it is a really good life. My favorite part (well, there are lots of them), but this is one; laughing about the challenges.

Last night, I met a woman whose son has Ds, and is 21. Even though she is way ahead of me in this adventure, we have an instant connection. There is just this knowing between one another. And, she says, “You know that stubbornness our kids have? Well, it doesn’t get easier, they just get more stubborn!” And, we just laughed and laughed, and shared some of our stories. And, we fully agreed, it’s a challenging life, but wow, it sure is a good one. We both get that, together, because we live it, together.

The world moves fast for our kids, and sometimes it’s difficult for them to communicate when they get frustrated. So they just shut down. When Wil was in kindergarten, he used to crawl under the table and refuse to come out. He also was, and still is, really good at plopping down on the floor and refusing to budge. It is no joke trying to lift up an almost 70 pound kid with low muscle tone off of the floor when they don’t want to be lifted. Like a slippery, wet noodle that just slips through your hands.

When I talk to my friend, Elaine, who’s son has Ds and is just about 2 years older than Wil, looking for advice as to what to do about the latest and greatest challenge, we mostly end up laughing to tears about it. We aren’t being flippant, or not taking it seriously, it’s just that she’s been there done that, and it’s ok. The laugher is like a hug that says, I get it, I’ve been there, and we will get through this, and though it is tough, hey, isn’t this life with our kids great?! And, that my friends is one powerful feeling. We can all move mountains when someone has our back.

I did not choose to have a child with Ds, but I do get to choose how I want to embrace the Ds community, and what people I surround myself with.

People are not made to be loners. So, to fully enjoy this journey, it’s important to realize we must do our part to surround ourselves with a supportive and like-minded community.

I don’t want to go this alone, and I don’t want to do it surrounded by an unmotivated, reactive, pity party. Believe me, they are out there, I send them my best, but I want no part of it. I want to laugh, I want to enjoy this journey, and open up as many doors for Wil as possible. I know it’s not easy, and I am fully ok with that. Life doesn’t have to be easy to be really, really good. In fact, as much as the challenges bring me to my knees sometimes, they are what have brought the best people into my life and shown me what my strength really is. And, that is one empowering feeling!

But, I can’t just hang back and hope all of this happens by some magic twist of fate.

So, I put myself out there and share. I share openly, freely, and happily. Some people don’t share back, but mostly I find the more I share, the more people open up to me in a like-minded fashion, and this bond grows tight. This community I’m in is a beautiful and powerful place, and we are all moving our own mountains, together.

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