One of the Good Guys – #BobbyBandwagon

For some reason the media loves to share all the “bad boy” sports stories. It must sell or I guess they wouldn’t put it out there. Funny that pretty much everyone I know wants to see more of the good guys. I believe there are more positives than negatives and today I want to share a personal one.

A while back my husband Jonathan was in the local Olathe Quik Trip and saw a gentleman with a Hog on his cap. Growing up die-hard Hog fans, wherever we go we find other Hogs. Quite naturally, Jonathan said “Go Hogs” and engaged in conversation. The gentleman told him that his son was on the UA baseball team. Upon learning that I can only imagine the twinkle in Jonathan’s eyes. As a boy from Arkansas who loves his Hogs and baseball, he must have been in heaven. Jonathan, social media guru that he is, looked up the son.

The son is Bobby Wernes. Jonathan started following him on twitter. Bobby followed back and responded. Soon they started texting. Jonathan wanted Rachel to meet Bobby, so on one of Bobby’s trips home they met up for ice cream. Jonathan came home and shared with me how impressed he was with this young man. Not his baseball ability either. He was talking about his manners and how he engaged Rachel. Later in the year I too had the opportunity to meet him and his significant other. I was equally impressed.

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Last weekend we were able to go down to Arkansas for a couple of games. Rachel was able to sit in the family section at the games. We were able to connect with Bobby’s significant other and she introduced Rachel to the RBI girls.

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These are the cheerleaders dressed in baseball attire (sort of) who dance on the dugouts. Rachel has never seen a cheerleader she didn’t love. She was on cloud nine. She met the baseball mascot Ribby.

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Previously, she has met the other live and inflatable mascots Big Red, Sue E., Pork Chop and Boss Hogs. More heaven for Rachel. We also had the opportunity to meet Bobby’s family and some of the other players families.

Bobby’s twitter profile says “God gives his toughest battles to his strongest soldiers.” We liked that and we loved how he and his team mate Tyler Spoon draw a cross in the on deck circle before batting.

The Hogs played perennial powerhouse and number two ranked LSU. After winning the first game of the series, the Hogs lost game two and were beaten pretty badly. There is an area where fans and family gather after the games to speak to the players and to get autographs. Bobby came over and immediately found Rachel. Told her he was sorry for the loss but happy to see her. Engaged in conversation.  Signed her poster that she had made. Major smile. Then, Bobby talked to bright-eyed little boys and signed baseballs. It was late. They had lost. He, and all the other players, were not just polite – they were engaging.

The next afternoon the Hogs lost again. Bobby had played well both games. This was a close game though and sometimes those are harder to stomach. Bobby came over and immediately found his parents. He gave them both a hug. You could see that this loss was harder. Still, he found Rachel and chatted with her and then he went about the business of chatting with the other fans.

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Bobby’s Coach Dave Van Horn, has coached a ton of good baseball players. Friday he was quoted as saying that “Bobby Wernes is the best defensive players I have ever coached.” Wow! The scouts are talking about where he will land in the draft. Earlier in the week he had a play that was Sports Center’s number 1 in their “Top Ten Plays of the Day.” He dazzled us with some of his plays while we were there, too.

So here we are, the Hog Crazy Mast family.

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Parents are alums of the University of AR. We are hoping that Rachel will be a Hog too. Time will tell on that one.  Bobby Wernes is a college kid who is a great baseball player. Apart from us being Hog Crazed alums, he didn’t know us. He didn’t know Rachel.  But best I can tell Bobby Wernes represents one of the good guys. He is what’s right with sports.

All the Masts are now on the #BobbyBandwagon. Hope you will be too. Here’s to the good guys.

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Celebrating the Rachel’s #WDSD15

This Saturday, March 21 the world will celebrate Rachel and all the other earthlings who have an extra 21st chromosome. World Down Syndrome Day (WDSD) is a day recognized by the UN, countries and organizations around the world where we celebrate the lives of individuals with Down syndrome. It is March 21 every year. March, the third month, symbolizes the three copies of the 21st chromosome and the 21st day represents that 21st chromosome. This is scientifically what causes Down syndrome. A person or their parents do nothing to cause them to have Down syndrome. The creation of the triple copy of the 21st chromosome happens at conception. Individuals with Down syndrome are not defective, afflicted or suffering. They are people just like you and me and created perfectly the way they are supposed to be. It’s who they are!

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For #WDSD15 organizations have come together to do some different activities to shine a bright light on the abilities and worth of those with Down syndrome. I mentioned some of these in my blog about Random Acts of Kinds for WDSD15 last week.  Each year, I try to give friends, readers and others some ideas for ways to bring awareness to the abilities of those with Down syndrome. There are many ways you can support Rachel and others with Down syndrome.

If you are interested in donating money as a support mechanism, you have choices. Today, I’m promoting two. The past few years on March 21st I’ve told you about Down syndrome research. This year is no exception. You can click here and learn about the cutting edge research through the LuMind Foundation. Want to stretch your money? The deserving LuMind Foundation has a match going on through Saturday. Any donation you give will be matched 3:1. So if you give $21, it becomes $63.  If you give $100, it becomes $300. You get the idea. LuMind is world-class research and always needs more money. Improved cognition and links between Alzheimer’s and Down syndrome are just two of the exciting areas they are impacting.

Another option for those who want to support Rachel and others with Down syndrome financially is to support Rachel’s NDSS Your Way “I Love My Life” campaign. We are a part of the National Down Syndrome Society’s (NDSS) ambassador program. Most of our advocacy efforts are in conjunction with NDSS. Advocacy is so important. Think about the difference the ABLE Act will make for Rachel.  NDSS was one of the lead organizations on the ABLE Act and instrumental in its passage. So we would love for you to support their mission to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

If you are not able or interested in financial support but want to do something, these are just a couple of other ideas:

  • Take the pledge to end the use of the R-word
  • Share the Just Like You – Down Syndrome video or another awareness education video on social media or email it to friends and educators! Of course, this is my favorite video!
  • Participate in a Random Act of Kindness
  • Commit to volunteering for a Down syndrome support organization or another organization supporting those with intellectual disabilities.
  • Become friends with someone with Down syndrome. If you are a teenager or college student, invite them to a movie or lunch or to do something fun.

The sky is the limit in ways you can help us spread positive public awareness about Down syndrome. Be imaginative. Be creative. Be respectful. Be involved.

I posed this Facebook question, “What is one thing you want people to know about Down syndrome?” Rachel’s response, “We are amazing and I love my life!”

shelby farms swinging

Celebrate Rachel! Celebrate life! Celebrate Down syndrome!

Happy World Down Syndrome Day 2015!

 

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Sharing Down Syndrome with Books and …

October is National Down Syndrome Awareness month. During that month we do a lot of promotional activities and fundraisers. Many Buddy Walks and Step-up Walks are held around the country and globe to raise money, but just as importantly and maybe more so to raise awareness of the abilities of those with Down syndrome.  A few years ago March 21 was designated as World Down Syndrome Day (WDSD). Makes sense and it would really make more sense for Down Syndrome Awareness Month to be in March, too. Why? Well, WDSD is 3-21 every year because Down syndrome is caused by the addition of that third copy of the 21st chromosome. Most of us only get two chromosomes but our friends with Down syndrome get a third 21st chromosome. That’s as far as my science lesson is up for this am.

In recent years, people and groups around the world have launched awareness activities for World Down Syndrome Day. Some are a little controversial but all are well-intentioned. Whether it’s rock my socks by wearing mismatched socks or programs in schools or a fundraiser, we are promoting awareness of the abilities of people with Down syndrome. This year I am excited that most of our national organizations (National Down Syndrome Society, LuMind FoundationInternational Down Syndrome Coalition- IDSC, National Down Syndrome Congress, Down Syndrome Affiliates in Action and International Mosaic Down Syndrome Association) have joined forces and the Empire State Building will be shining blue and yellow in honor of ‪#‎WDSD2015‬!

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These same groups have united for an additional awareness and celebration event to promote Random Acts of Kindness for #WDSD2015. It’s easy to do. You just choose something to help spread love and kindness in honor of everyone with Down syndrome. Rachel and I decided we wanted to donate a book to her former elementary school. Since our school is on spring break the week before #WDSD2015 and Rachel is having ear surgery next week, we decided to go this week and do our Random Act of Kindness!

We’ve donated books to the school, Down syndrome organizations, the public library, the district special education library, hospitals, other healthcare providers and the high school. Some are to educate children while others are more technical and are geared toward professionals. We’ve also donated copies of Just Like You – Down Syndrome. In fact, Rachel and Savanna will be speaking at a local middle school later this afternoon. They are doing an abbreviated version of their Social Inclusion presentation and then showing JLY for a school wellness program. More Down syndrome awareness we say. Back to the books though. When Rachel and Savanna did this original presentation in Maryland back in October, we met some great people. One person we met was Christina Grimes. She shared with us a book that she authored about her daughter. We read it and loved the beautiful pictures.

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The book, “Together We Can Do Anything” tells the story of Christina’s daughter who was born with Down syndrome.

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The real pictures are a definite benefit for this book. Often people are looking for pictures of real people. This is true when someone gets a diagnosis and when children are learning.

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And I hate to say it, but sometimes the internet does not pull up the most flattering pictures. These pictures show kids doing life and loving life. The explanations are simple but complete. Something I really liked, especially for those with siblings, is the section at the back that features testimonials from siblings of individuals with Down syndrome.  I think it is another good book to add to any library! Rachel was very excited to be able to present a copy to Mrs. Veatch who was her elementary principal.

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The hard copy book is available from Amazon and if you click on the book title above it will take you there. Thanks Christina and Madison for sharing this book with us.

Whether you have a child with Down syndrome, love someone with Down syndrome or want to learn more about Down syndrome, you too can be a part. Check out any of the links to the national organizations above to learn how you can be a part. Maybe you just want to donate to one of these organizations or you’d like to find a local group. They can direct you. It’s just a great opportunity for us to celebrate the lives of all the Rachel’s out there!

Happy World Down Syndrome Day 2015!

*Savanna is Rachel’s friend who is also featured in the Just Like You – Down Syndrome video. Sometimes both girls are invited to give presentations.

 

 

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“I am Me,” R-Word, High Schoolers Impress

A year ago last week I noticed all of the posts from schools about their campaigns to End the Use of the R-word. The campaign has taken off these past few years. It’s easy. It’s needed. Education is a game changer. So I inquired of a friend and she said that it was a district-wide deal so I contacted our District Special Education Director. Shouldn’t we be doing something? She said that she would reach out and see if our district might participate.  I don’t know if that was the catalyst or if my timing was just good, but the result is impressive.

Back in October Rachel was invited to a lunch meeting. The meeting was a gathering of students from the district’s four high schools. It was an inclusive group and the students brainstormed about what they could do with this campaign and ultimately support those with intellectual and physical disabilities. Each school did their own thing and I don’t know what went on at the other schools, but our kids knocked it out of the ball park! Last Wednesday, March 4 was the annual “Spread the Word to End the Word” Awareness Day. The teacher who coordinated at Rachel’s school sent me an email the week before and told me she wanted me to know what the students had decided to do. When I say students, I mean students with and without disabilities. They did a week-long campaign. They made signs and put up around the school. They made a big banner and during lunch staffed a table and had anyone and everyone sign it. If you signed you got a bracelet. I got one when I went up to take picture of Rachel at the booth.

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Student Council Vice President, President and Rachel!

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Rachel and friends taking signatures.

They also made a video and posted on YouTube. The students idea. They did their version of one of the national campaign videos. Many made their own signs. Rachel is the last student and her sign says “I am Enthusiastic.”  The video is “I am Me.”

For us this journey is definitely a marathon and not a sprint.  So many lessons to be learned from the events described in this blog. One is to never give up. Keep giving ideas to people. Like the book “A Fish Out of Water” says, “something might happen you never know what!” Along this marathon there are days when our muscles hurt and we are discouraged. One of my friends said last week that she was discouraged. She told her husband she needed someone to impress her. Then she said, “This impressed me.” Me too.

If you still aren’t sure why the R-word thing is such a big deal, read this blog, “Let’s Talk About It: Retard.” I think it does a great job of putting it all into perspective. And then for those of you who know Rachel, whenever you want to use that word put her name in the place of it.  It’s never too late to take the pledge!  Have you?

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Life Lesson: Social Inclusion, Friends & Siblings

When talking inclusion Rachel’s two most legendary peers are George and Savanna. I share the story of George to end almost every presentation and if you’ve missed it, here’s a link to Power of Inclusion: My Friend George! Of course Savanna is Rachel’s friend and famous because of her role in Just Like You – Down Syndrome. Oksana, Alli, Gabby and Andrew are a few others who have been touted for their example. And then there is Andrea. She’s been mentioned before but today we are focused on her and her significant other who is also a friend of Rachel’s.

We met Andrea through Christian Youth Theater. Andrea has huge talent. It would be easy for her to think she is better than others because she is remarkable. But Andrea is the kid with the remarkable heart too. She is the CYT kid who is sitting in the middle of the eight and nine-year old’s in the green room and playing silly games or braiding hair. God made Andrea with a great, big heart and her mom and dad deserve some credit for raising her right! Some of that heart is because she has a sibling with Down syndrome. She sees her sister’s abilities first. Like many if not most siblings of individuals with Down syndrome, I think she would tell you that she is a better person because of her sister. Andrea has seen the way her own sibling was left out, too. She knows that kids with Down syndrome and other intellectual disabilities need a little more help to be included sometimes.

Andrea’s significant other is Justin. We met Justin at church. We’ve gotten to know him and his wonderful family. We have watched him grow into a fine young man of integrity. He is loving, kind, fun and inclusive. He also does CYT and I watch the way he treats Rachel and others who are younger than he is. He treats them with dignity and doesn’t see himself as the older kid who doesn’t have time for the underlings! I have often said that Andrea is a saint and I would say the same about Justin.

I blogged last week about Rachel being chosen as the Freshmen Girl Rep on the Winter Court at her high school. It was a crazy week with school assemblies, basketball game coronations and it all culminated with the WPA (Women Pay All) dance. For Rachel the dance was the highlight. She had invited her friend Ryan. They’ve been friends for about six years and they “kind of like each other.” The romanticist Rachel is in love with the idea of happily ever after you know. Rachel says it was her first date. Often students with disabilities are left out of the group invitations for prom, homecoming and other such school events. It’s a little harder to engineer it all. This is the text Andrea sent to me a few weeks before WPA:

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Of course Rachel was thrilled and both Justin and Andrea were wonderful friends to them helping them as needed for the evening. They would say differently but they were willing to sacrifice some of their own special time to include Rachel and Ryan. Rachel and Ryan report that it was the best evening ever.

A few pictures from the evening:

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Rachel loved showing everyone her wrist and saying, “My date gave me this corsage.”

I think there are a lot of young people who are inspiring and amazing. Yes, they can be frustrating, stubborn, unthinking, rude, mean and like adults, they are all a work in progress. I’ve spent most of my adult life working with teenagers in some capacity be it for pay or volunteer. My masters degree is in Human Development and Family Studies with an emphasis in adolescent development. I think it is interesting that we as adults comment on “kids” not being inclusive and being “clique.” I think about church and wonder is there a cliquier group of people than adults at church. That includes me, myself and I. My faith in our future has gone up a few notches this past few weeks. Thank you Andrea, Justin, Oksana, George, Allie, Andrew, Jordan, Ashley Hanna and so many others for being a part of that. Andrea and Justin, thank you for setting a good example. I hope others will follow your lead.

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High School: Inclusion in Action

Last week was quite a week for Rachel and our family. Sunday night she finished her 16th show Christian Youth Theater’s Cinderella. She took her Romeo and Juliet test over Acts IV and V. She scored 19/19. She was very excited about her bones worksheet from owl pellets in biology. As a little aside, her biology teacher extended an invitation for her to go on a science trip to Costa Rica. I almost cried and nearly hugged the teacher. The teacher’s response was “Why wouldn’t I invite her?” This is definitely a teacher who gets it and should be teaching others how to include those with different abilities. Some of you understand my elation more than others. Back to Rachel’s week.

Rachel has become involved with an organization called Inclusion Connections. Her involvement is mostly in the summer but the program is unique in it’s peer mentoring approach to activities, building friendships and raising awareness with a vision of turning all that into employment, housing and life opportunities. Thursday night she had the opportunity to be in their first ever fashion show fundraiser, Fashionability. It was awesome and one of the best non-profit fundraisers we’ve attended. It was simple and truly showcased a variety of differently-abled teens on the runway.  Differently-abled included those with and without a disability label. The kids all seemed to love it and Rachel was truly in her element blowing kisses and working the crowd. Great fun for a great cause.

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We learned the week before that Rachel had been selected as the Freshman girl representative for her high school’s Winter Court festivities. This entailed quite a few things. From being honored at the school pep rally to crowning the Senior King (who also has Down syndrome) at the boys basketball game, Rachel floated through the week.

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It culminated with the WPA (Women Pay All) dance on Sat. night. She invited her friend Ryan, so I guess it was officially her first date. She has been boy crazy since she was a toddler so for Rachel this was the source of great nervousness. Her precious friend Andrea, who we met through CYT and is now her peer mentor at the high school, and her date Justin invited Rachel and Ryan to join them. I have more to say about that but I’ll blog about that another day. It was a magical night for Rachel. We were PTO chaperons so it was fun for us to be able to see her in her element at the dance just being one of the kids. It was fun to watch her dance and interact. It was inspiring to watch the other students interact, too.

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The Friday night ceremony included the announcement and crowning of the King and Queen. As part of this, parents were invited and introduced with the Winter Royalty Court. The kind and queen were chosen by the students from the three senior female reps and three senior male reps. Matthew Horn, who happens to have Down syndrome too, was elected as the King and a fellow STUCO rep, Lauren, was elected queen. Again it was a happy time to watch how much fun the students all had and how they embraced each other.

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For us, the highlight of that night and maybe the whole process came after the game ended and as the students stood singing their Alma Mater. Rachel was a few steps away from the group but the young man on the end turned and looked at her, motioned and with a big smile stuck out his arm for her to join the line.  Here’s a picture.

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The team won that night. We think we all won that night.

 

 

 

 

 

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Happy 50th Baby Brother

This week I’ve listened to a lot of Bon Jovi’s “Never Say Goodbye.” Now, I am a Bon Jovi fan but it’s more about the the memories associated with the song for me. Today, my baby brother would have turned 50 years old. I’ve thought about that a lot the past few weeks. It is life milestone that I didn’t expect to create such a degree of reflection. It’s kind of hard to explain.  You see, Kenny would have been 50 today but he died in a tragic car accident 28 years ago tomorrow. “Never Say Good-Bye” debuted that same year and I heard it a lot on the radio. When I hear it I not only think of my little brother, I play out the memories of his life in my head.

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I don’t remember the day he was born. I have been told that my parents played Monopoly to the wee hours of the morning. Then, they woke us and took us to my grandparents and that my grandpa, who wasn’t a man with many words, told us that we had a baby brother. My mom said that I told her I wanted a brother because we had enough “gwurls.”

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I do remember the day he died though. I got the call at 5:17 am from my dad saying my baby brother was dead. I thought I was having a nightmare and stumbled back to bed but before I could get back in bed, the phone rang again. The second ring was the one that shook me into reality. My brother, who had celebrated his 22nd birthday the day before, had died in tragic, senseless car accident in the early hours of the morning on Joy Mountain.  I remember it as well as I remember what happened yesterday. In some ways it seems like an eternity and in other ways, it seems like just yesterday.

When I think of Kenny, I don’t’ think of the grown-up 22 year old man he was. He was engaged to be married. He had a job. Instead I remember the ornery little cotton-headed boy with skin as brown as dirt during the summer. Of course, that might have been dirt and not a tan because he played outside from sun up to sun down. I see his dark brown eyes full of mischief as he and my cousin Jeffrey took off through the woods on one of their adventures. I see him laying in the yard with his dogs. I see Kenny and Jeffrey trying to explain the big hole in Kenny’s face that is gushing blood. They are attempting to convince my grandmother that he ran into a tree. In reality, Jeff had accidentally shot him with the BB gun. They were afraid if they told they wouldn’t let them play together anymore. Though I missed eye witnessing it myself, I can envision my grandmother stripping them naked after they had been in the mud in the creek where she had told them not to go. I can see her getting tickled as she used her switch to get them in action and out of those clothes. One of my most vivid memories is of Kenny running around at my dad’s fast pitch softball games. We grew up on a softball field and always there was an abundance of little boys playing their own version of “ball.” I remember his tiny little self when he started playing baseball at about age four. He was too young but they didn’t have enough players so he got the nod. That was before T-ball and pitching machines.

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I see him as a little boy with his friend Cendie, and I do see him at his high school graduation holding my niece Timi. She doesn’t remember him either. While I have many wonderful memories, the lasting memory is that on February 21 every year when we should celebrate his birth, my parents and my sister visit his grave instead. Since I don’t live in White County anymore, I call them and we reminisce a little. It feels odd that he never knew Jonathan and he never met Rachel. He would have had fun with her. I sit and wonder how different our family or the world might have been had he not been in that car that fateful night. I try to see him as a man who might by now be a grandpa. But I can’t. I can only see that pretty little boy with a switch in his hand backing my sister, my cousin Paula and me in to the corner of the room and laughing as he tortured us. I hear my mom yelling for him to stop and then telling us it is our fault for teaching him how to do that.  And I will continue to hold on to those memories.

“Never say goodbye, never say goodbye
You and me and my old friends

Hoping it would never end
Say goodbye, never say goodbye
Holdin’ on – we got to try
Holdin’ on to never say goodbye”

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Auditions: Paralyzed by Fear Updated

I originally wrote this blog a few years ago. I have updated it a bit. The life lesson is still applicable!

Last week Rachel was in her 16th stage production, Rodgers and Hammerstein’s Cinderella.  This was her 8th Christian Youth Theater Kansas City’s production. She loves the stage and the stage loves her. Part of the reason is because she thinks her role as the Villager is as big as the role of Cinderella and sets out to share that joy on the stage. People I have never seen and will never see again tell me how much they love watching her in a show. That is very humbling and such a blessing.

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I remember her first audition like it was yesterday. She was 5 ½ years old and in kindergarten.  We lived in the Memphis suburb of Bartlett, Tennessee, and the Bartlett Performing Arts Center  (BPACC) would be hosting auditions for Pinocchio. Missoula Children’s Theatre was the company that would be running the audition and shows.  She was in the correct age range so we decided to try it. I knew nothing about Missoula Children’s Theatre, and only knew that BPACC was a beautiful facility.  People frequently want to know what made us decide to try plays and acting with Rachel. Like any child, you are always trying to decide what is the natural fit for their interests. My former Bible study leader has always described Rachel as a “dame.”  We had noticed but more importantly others had noticed that she seemed to have a comfort on stage. Even when she is in the grouchiest of moods, she gets on the stage and comes to life. People had encouraged us to look for some acting outlets.  It seemed that BPACC and Missoula were about to give us that outlet.

Before we jump into some events and activities, I sometimes call ahead and say, “My daughter has Down syndrome.” Sometimes that helps my controlling nature feel like I’m a little more in control. On this day I had not. That morning, Mr. Fear and Mrs. Doubt started to work on my psyche. “Maybe you should wait, “ came from Mr. Fear.  She can try next time.  What if he other kids laugh?  What if they can’t understand what she says?  What if she has to memorize something on the spot and she can’t?  What if people are mean and rude to her? Then, there was the great fear:  What if she didn’t get a part? Indeed every parent of a child who has auditioned or tried out for anything has experienced the angst of this thought.  At that moment in time, I wasn’t thinking about “normal fears”. Nothing seemed normal and I felt almost paralyzed by my own fears. I had no experience with BPACC or Missoula and our community wasn’t always the “most inclusive” of people with disabilities.  Still, I kept pushing Mr. Fear and Mrs. Doubt away.

We showed up at the theater with the other 130 children hoping to get parts.  My heart was beating so fast that I almost took her home. Instead, I took her little hand and told her to do what she was told to do, to follow directions and just smile. We went in and signed the registration.  No one seemed to be staring. The nicest man came over to us and with a gigantic smile he said, “I’m Ron Jewel and I’m the director of BPACC. We are glad you are here.” He showed us what to do and what to expect and then pointed Rachel to the front rows with the other kids.  She was not the youngest but she was the smallest one there.  She strutted up and found her seat.  I looked at Mr. Jewel and said, “I didn’t call ahead. I hope….” He interrupted me and said, “We are thrilled to have her!”  Rachel and Ron became fast and fabulous friends and for so many reasons I believe he is a gift to the Bartlett Community!

This was Rachel's 2nd play  at BPACC, The Junle Book with Missoula Children's Theatre.

This was Rachel’s 2nd play at BPACC, The Junle Book with Missoula Children’s Theatre.

Missoula has a distinct way of doing their auditions. They went through the audition routine, which took about 90 minutes. After 90 minutes, Rachel was starting to get a bit restless. She was not alone but of course, I thought all eyes were on her.  She certainly wasn’t the only younger one who needed a bathroom break, but I conjured up visions of them turning her away because she needed to go to the bathroom.  At the end of the time, the children were divided into sub-groups. Those who were cast were given a piece of paper. They were told to take it to their parents and when to come back. Rachel had a piece of paper!  Rachel had been cast as a magical baby doll.   We invited everyone we knew and Rachel even had a line. She said, “Mama Mama.”  When we saw her on the day of the show, we understood why she was cast as a magical baby doll. This picture, taken by our friend Elizabeth Duncan, is my all-time favorite of  “Magical Baby Doll” Rachel.

I learned a life lesson that day. I learned that I would never let my own fears paralyze me to the point that they would interfere with allowing Rachel to be who she was created to be. I knew that day that my own fears would never be the reason others would not give Rachel every chance to live her dreams. That January day in the little town of Bartlett, “Mama, Mama” learned a much bigger lesson than Rachel.

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ABLE + Theater = PR for Down Syndrome

Rachel has been involved in theater since she was little. Her first true show was Pinocchio under the direction of Missoula Children’s Theater at the Bartlett Performing Arts & Conference Center.

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I wrote a blog about that experience that I’ll reprint another day. Currently, Rachel is a Villager in CYT Kansas City’s production of Rodgers and Hammerstein’s Cinderella.

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This is her 16th show.  Theater is about so many obvious things like discipline, team work and building self-confidence. CYT stands for “Christian Youth Theater” and the mission statement says, “CYT is dedicated to developing character in children and adults through training the arts and by producing wholesome family entertainment, all of which reflect Judeo-Christian values.”  One of our good friends says it is an eternal investment.

In addition to all of these benefits, we have developed some deep and eternal friendships. We love our CYT family. One of the roles Jonathan and I play at CYT is to work in and chair the Green Room where the actors stay when they are not on stage. Wednesday night’s final dress rehearsal produced an unanticipated result for us.

One of our CYT friends has a highly successful financial planning business. He came in Wednesday night and stopped and looked at me and said, “Did you have anything to do with this ABLE 529 thing?” I thought he was joking at first and I joked back and said that I might have heard of it. We laughed and then I briefly told him how I had been involved. He said, “We want to help.” This man and his family are as generous as anyone I have ever known.  They are truly the hands and feet of Jesus in very real ways. He said that several folks who work for him are becoming Special Needs Financial Planners and then he said, “We have enough money. We want to help families. This is the right thing to do.” You can’t buy this kind of positive public awareness.

Our other friend is right. CYT is an eternal investment.

mckenna joy & rachel cinderella

fun times at cinderella

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I’m So Glad I’m Your Mommy, Rachel!

I can tell you exactly what I was doing 16 years ago right now. I was headed to pick up Jonathan. His 34-year-old, healthy, no family history of cancer self had a colorectal tumor removed.  Bring him home. Get him comfy. Go to office. I was the Volunteer Manager for Youth Villages. It was Soup Sunday Weekend. We had over 200 volunteers to manage. Progressed through my checklist and came home exhausted. I was about 18 weeks pregnant with our first child. It had been quite a week, quite a few weeks. We were flooded with phone calls from caring friends and family. Lots of excitement that Jonathan seemed to be on the road to complete recovery.* Then, came the phone call that forever changed our life. I often say the phone call that changed a lot of lives. The phone call from my doctor who said your unborn daughter has Down syndrome.  While “A Glimpse of God’s Grace” tells how our story began, today as I always do on this day I reflect on these 16 years and what is yet to come.

snow bunny baby

I do not apologize for the devastation I felt in those moments, days and weeks after I learned Rachel had Down syndrome. While I had a positive medical experience, 16 years ago we didn’t have many positive role models and support organizations were not as abundant or effective. I hope and think it is better for people today because they have more role models and more supports. Overall, I think social media has been a great help and families do not feel as isolated or alone as they once did.

I think the myriad of thoughts you have in those moments after the news are odd. Some that make total sense and others that now seem laughable. I remember Jonathan thinking “will people stare at us at McDonald’s?” Of course now my response to people who stare is “We know she’s the most beautiful girl you have ever seen.  We think so too.”  This past Sunday people were staring. They were staring at a young lady with Down syndrome enjoying a moment at McDonald’s in a Super Bowl commercial seen by millions.

wicker chair popies favorite

I’ve often told the story that one of my first thoughts was she’ll never be a Razorback cheerleader. Neither was I so why would that even be logical? In my pretend life as a little girl I was though. The almost simultaneous thought was a deep sadness that she would not go to the University of Arkansas. Jonathan and I love the University of Arkansas and it made my heart so sad that she would not have that experience. Today I have the benefit of looking back and thinking “Oh Baby the Places We’ve Been” and “Oh Baby the Places You’ll Go.” I didn’t have that luxury 16 years ago.

Jonathan and I are both avid readers and I remember wondering if she would read? She will read and read and read. In fact Rachel is quite the good little reader.  She’s won a number of awards for her reading. She’s impressed a number of people with her reading. Though comprehension is a challenge, she has high scores on her tests over “Of Mice and Men”, “The Odyssey”, and “Romeo and Juliet” and she can converse about the books with her friends.

Now as we get a little closer to adulthood I have to be honest and say that some of those fears that seemed far, far away seem very, very close now. Sometime today I will pull out her baby book and my journal. I will replay the words of my diagnosis a few times, and I will be reminded of all the beauty her life has brought to so many but mostly to mine. In reading the entries, I will physically feel how her life has been celebrated by so many.

And I will hear her sweet little voice whisper, “Mommy, don’t be afraid. Be strong and courageous. God is with you wherever you go.”

And I will whisper to her, “I’m so glad God let me be your mommy.”

Baby Rachel, the world is a better place because you are part of it.

rachel & mom dora hat

*Jonathan is now 15 years cancer free. He did have to have radiation and chemo but his doctor has declared he is healthier than most 30-year old men. Early detection saves lives and quality of life. Get your screenings people!

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