Monday, October 31, 2016

Good-bye Down syndrome Awareness Month

Down syndrome Awareness Month began on October 1st. Today, it ends. I have been blogging every day this month for the 31 for 21 blogging challenge.

Every year this comes along, I wonder what I can say or do to help someone understand Down syndrome a little better.
-I see the statistics of how many mothers choose abortion when their baby is prenatally diagnosed.
-I read the comments of those online who clearly do not understand the worth of those with developmental disabilities.
-I hear stories of other families who received a diagnosis of Down syndrome from a doctor that was given in such a way that made the family feeling heartbroken and devastated.

For those reasons and many more, I chose to write this month hoping to share a story or piece that would help someone realize there is support available through websites, books, products, and people. There are health challenges that can occur but can also be overcome. There are abilities present in those with Down syndrome that can be easily seen if someone will just look. Most importantly, there is love that is powerful enough to overcome any diagnosis.

I hope and pray that message got to the people it needed to get to this month.

I would like to thank everyone who has stopped by, shared my posts, or visited my blog's FB page. Many wonderful writers have contributed guest posts this month as well, and for those writers...I am grateful.

People from all over the world have stopped by this site this month. The top 10 countries that visited were:
-USA
-Ireland
-UK
-Canada
-Germany
-France
-Australia
-Spain
-Netherlands
-China


Truly, I appreciate you reading. I hope you come back in 2 weeks when I resume my typical content on Tuesdays and Thursdays.

If you are bored between now and then, read or reread the blog's top 5 posts from this month.
1. Meet Nate: I Can...-Guest Post
2. Meet My Brother-Guest Post
3. Meet Sophie: I Can...-Guest Post
4. Meet Clayton: I Can...-Guest Post
5. Pro-Life: Babies and Beyond



Happy last day of Down syndrome Awareness Month!



This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!
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Sunday, October 30, 2016

Why Jaycee is Perfect According to James 3

A year or two ago, I read this passage in my daily reading:


My brethren, let not many of you become teachers, knowing that we shall receive a stricter judgment. For we all stumble in many things. If anyone does not stumble in word, he is a perfect man, able also to bridle the whole body. Indeed,[a] we put bits in horses’ mouths that they may obey us, and we turn their whole body. Look also at ships: although they are so large and are driven by fierce winds, they are turned by a very small rudder wherever the pilot desires. Even so the tongue is a little member and boasts great things.
James 3:1-5 NKJV


I have read these words many, many times over the years. But, that day the words jumped out at me. I was inspired in a new way.

Many times, it seems that having a child who is classified as non-verbal/minimally verbal is a curse. I don't mean to say that Jaycee is a curse. But, her inability to produce spoken words is life limiting. Yes, she can use sign language and a communication device. But, her lack of verbal speech impacts her life in so many ways.

Here's just a few examples:
-She can't speak on a phone. She can grunt on it. We do use Face Time but this isn't always available all the time.
-She cannot tell me when she is sick, what hurts on her body, or when her breathing feels different. Instead, I have to watch for behavioral changes or numbers on a monitor to tell me.
-She cannot order her own food at most restaurants.
-She cannot ask questions to clarify or to engage with friends.
-Jaycee cannot read out loud using her voice. She can read aloud by "saying" the words on her communication device, but that takes 3-4x longer than just speaking and twice the memorization.
-She cannot join any group or club that requires verbal speech such as chorus.

These are just some examples. When I think about her future, her lack of verbal speech comes into play. What job can she have that requires little speech? Given her health problems would it be safe for her to live independently, if she cannot call for help?

Really, we deal with her lack of speech well. I am grateful she has other methods of communication she has success with and for the words that she can say, especially "mama."

When this verse suggested that a person who is able to control their tongue and not stumble in their words is perfect, I saw Jaycee's inability to speak in a new light. She is perfect in this aspect. She has not lied. She has not called anyone a name. She has not cursed. She has not given a sarcastic remark. She has not told anyone she hated them. She has not engaged in gossip. She has not made promises she couldn't keep. She has not told a secret she was suppose to keep. She has not screamed out some horrible words in anger. She has not made schemes. In short, no evil has come from her mouth.

I cannot say that.

I am still challenged by James 3 every time I read it. I have not been able to control my tongue in the ways that would reflect God's perfect spirit. Jaycee is much farther along in this area than me even if it is not by her choice.

When the challenges of having a child with little to no speech come up, I am encouraged by this scripture. Jaycee is perfect in speech in God's eyes.





This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!
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Saturday, October 29, 2016

Jaycee's First School Dance

Jaycee in her dancing shoes for her first dance



Decisions, decisions.

As parents, we make many decisions. Sometimes, the decisions are easy. Sometimes, they are not.

Recently, I had to make a decision for Jaycee. It is a relatively small decision, but one that had extra consideration since she has special needs.

A flyer from school came home announcing a school dance for 4th-6th grade. Jaycee was in 4th grade, which meant this could be her first school dance.

My first impulse was to throw the paper away. After all, she probably wouldn't know that she missed anything. But, I didn't.

Jaycee loves music. She loves to dance. Most importantly, she absolutely loves socializing with her friends (yes- even typically developing peers) from school.

So, I pondered the dance. I must admit that I was mainly concerned with two things. First, a dark gym meant there was a possibility Jaycee could get lost or wander off. However, there were going to be many chaperones including several teachers that know her. Secondly, children from the other school in our county were invited. Jaycee is loved and accepted by the children in her school. How would children from the other school treat her?

Despite my concerns, I had one question for myself.

 If this was my son who could talk and ask questions, I would give him a choice. I would not have any reservations about his decision. Why not Jaycee?

So, I did what any good mother with some reservations would do. I volunteered to work the concession stand at the dance, and peek in on Jaycee periodically. It worked well for both of us. She didn't mind I was there (really!).

Jaycee had a great time! She experienced her first dance along with the other children in her class. And, she even got in trouble for kissing a boy! Ha!

Sometimes, we make a decision, and we learn it was the right one. That's a good feeling!


This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!


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Friday, October 28, 2016

Taking the Message Out

During Down syndrome Awareness Month, I have an entry here everyday on some topic of Down syndrome. Today, I am going to direct you to some of my writings published this month on other sites in case you haven't seen them.


  • Devotional Diva Does God Direct Our Steps?   This is truly a testimony of God showing me that He cared about my family through a date on the calendar.






You can keep up with all my posts by following the blog's Facebook page!
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Thursday, October 27, 2016

My Favorite Books for Explaining Down syndrome or Disabiilty

Books are a great way to open conversations about differences in children. When my son came along, finding books that could normalize disability and differences was important to me. I also wanted him to learn about his sister's Down syndrome in a way that felt positive.

From an early age (probably 2), I started reading stories about children with Down syndrome or disabilities to my son, so we could create times to talk about these things. Living in a rural area where people with disabilities are few in numbers, I felt the books were an easy to expose Elijah to people like his sister.

So, here are a few of my favorite books geared toward children.


We'll Paint the Octopus Red

1998

This book specifically talks about a sister learning her brother has Down syndrome. I have read mixed reviews on this book, but I happen to love it. It specifically talks about Down syndrome, and opens up the line of conversation.



This book talks about disability and differences in general. It has a message of acceptance and shows pictures of children with a variety of disabilities. The pictures are my favorite part of the book.



Zippy's Big Difference

Jan 24, 2013
by Candida Sullivan and Jack Foster

Zippy is the main character in this book. Zippy is a zebra without stripes and struggles to find acceptance with this difference. There is a series of Zippy books each one with a message from a Christian perspective on disability and difference. This is one of my favorite books written on disability while including spiritual principles.


Have a favorite book not mentioned? Comment below (comments are moderated)


This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

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Wednesday, October 26, 2016

3 Great Products for Those with Down syndrome

There are many amazing products that are made specifically for individuals with Down syndrome. I thought I would feature 3 of these today in case someone somewhere is unaware of these great products and companies.


Specs 4 Us
These glasses are specifically made to fit the faces of individuals with Down syndrome. Speaking from personal experience, finding glasses that fit my daughter's face has been next to impossible. My daughter's nasal bridge is very flat, which is something these glasses account for. If you have a child with Down syndrome who is hard to fit, I strongly recommend this line of frames.
Jaycee in a pair of Specs 4 Us


Downs Designs Jeans
At a conference for Down syndrome, I discovered this company. I was intrigued by their design of jeans made for people with Down syndrome in mind. Individuals with Down syndrome are often short, so their jeans account for this. (Normally, I try to buy capri length pants for Jaycee to wear as her "normal" length.) These jeans also have no buttons or zippers. Elastic waists are our friends! The pair of jeans we received for Jaycee from this company is of very good quality. If your child with Down syndrome has difficulty finding jeans that fit, check this company out!



Board books featuring our kids
I love the board books published by Woodbine House! These books written for toddler and preschool children feature children with Down syndrome in pictures. I love these books for the vocabulary teaching in them and the pictures of the children. When my son came along, we used these books and pictures to normalize Down syndrome for our son. I would read these books to him and say things like, "She has Down syndrome too like your sissy."


There are many great companies and businesses that have products geared for those with Down syndrome. I have named just 3 today but if you do some digging, you will find many other wonderful products.


This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!
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Tuesday, October 25, 2016

Books Written by those with Down syndrome

Did you know that there are books written by people with Down syndrome?

There are!

For another day of Down syndrome Awareness Month, I'll share three books written by individuals with Down syndrome. 


  • Black Day: The Monster Rock Band Hardcover – June 20, 2015                     

by Sean Adams  
This is a lovely story filled with pictures and a description of Sean's life.  It is a short read which would be suitable for classrooms, awareness talks, or conversation starters with siblings. My husband picked this book up at a Down syndrome conference and even got it signed by the author.


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Monday, October 24, 2016

My Favorite Books about Down syndrome

I read all the time. I read novels, memoirs, and -of course- books on the topic of Down syndrome. When Jaycee was born, I craved information. I wanted to know how to help her and what to expect. I also loved reading personal stories from mothers. It helped to know some of things I was thinking and feeling was normal. Reading books from Christian authors helped me understand how other people balanced their faith when they saw their child struggling. Reading is a good way to learn and help yourself sort out some thoughts.

Without further ado, here's my top 10 books related to Down syndrome in no particular order. Most or all of these are available on Amazon.


On the subject of educational/developmental information:


Stars of Success: Understanding How Children With Down Syndrome Learn

Sep 1, 2003
by Susan J. Peoples and Bernell Fettig




On the topic of siblings:


On the subject of parenting, accepting a diagnosis, and personal stories:


Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

May 15, 2007
by Kathryn Lynard Soper and Martha Sears





My Emily
Mar 29, 2012


Room 47: Down Syndrome - a new father's diary

Dec 19, 2012
by S. R. Taddei


There are many great books on the topic of Down syndrome. I haven't read them all, so if your favorite isn't here, then feel free to comment below. Happy reading!


This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

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Sunday, October 23, 2016

Pro-life: Babies and beyond

I'm a firm believer that every baby has a right to life. I know there are many that share this belief too. There are also many who do not have this view. This post is not to persuade those who are pro-choice. This is a post to challenge people who are already pro-life. 

Let's imagine a scenario: A young mother learns her fetus has Down syndrome.



When you believe that abortion is always wrong, then you believe that every baby born with all sorts of medical and developmental challenges should be given a chance at life. So in our scenario, this mother does not choose abortion and wants to have her baby with Down syndrome regardless.

While I didn't know my daughter had Down syndrome when I was pregnant, it would not have mattered to me. I believe the world we live in is full of diseases and conditions that God never intended for anyone to have. Yet, the world is full of evil and bad things because the world is not heaven-it's not perfect. Perfect souls are born in bodies that are imperfect. Who am I to say whose life is or is not "worthy"?

Now, let's think more about that young mother after she delivers a baby with Down syndrome. Let's further pretend she is a Christian, church going person and has supportive friends and family.

Now, imagine the reactions to the mother, who was supported to choose life for her baby while pregnant, when she settles in to life back home in her community and church. You might think everyone is happy and positive. You might be a person who provides such encouragement.

But let me tell you what really happens when you give birth to a baby with a disability and medical complications.
-There are many more people who say "I'm sorry" or nothing at all than "Congratulations!" upon the birth. Why is that?

-There are looks of pity or sadness from people who hear the news or see your child for the first time. Where does this attitude come from?

-There are people in church who insist your child must be healed or delivered from this problem. These people may start prayer chains and put the baby's name on every known prayer list. What message is that sending?

-There are people in the church who will ask the parents if they sinned causing this child to be born like this. Think this doesn't happen? Think again! It happened to my husband and I more than once! And what underlying tone is sent with that message?


I find it very confusing that people who are pro-life for prenatally diagnosed babies before they are born don't seem to have good feelings and expectations after the baby is born. It seems there is an attitude where anything outside the realm of typical is considered undesirable, even among Christians.

Yes, I believe in prayer. Yes, I believe in healing. But, how can the church reach those with disabilities if we are viewing them as people who are only in need of something (prayer, healing) and not people who can give something (love, happiness)?


We need more people who are pro-life champions for those with disabilities throughout a life-span-not just in utero! If we really believed, every life is worth something and a soul that matters, then we would NOT say things like:

-I'm sorry your baby was born with ________.

-I don't care what gender our baby is as long as it's healthy.

-Maybe you miscarried your baby because something was wrong with the baby. You wouldn't want that would you?


Instead we would say things like:

-I know it's going to be hard because your baby was born with ____ but your baby is a life with worth. I'm here to help you.

-Congratulations on your baby.

-I'm blessed to be pregnant and blessed to have any child.

-I am sorry you had a miscarriage. How can I help?



So I challenge those of you who are pro-life. How can you do better? What attitudes to do you need to reexamine to support pro-life throughout a person's life?




This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

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Saturday, October 22, 2016

Can a Person with Down Syndrome win a Tony Award?  


I'm honored to have author, speaker, mother, and advocate-Mardra Sikora- as a guest writer here today!


“What is your goal?”



The keynote speaker, Dakota Johns, asked. Then he asked us to share this goal with those sitting around us. One person at our table said, “To write a book,” another said, “Take a family vacation.” My son, Marcus, said, “To win a Tony Award.”  






This is the first I’ve heard Marcus articulate this specific goal, although it didn’t surprise me. It may have surprised the others at the table. Then again maybe not, because Dakota Johns, the young man giving the keynote about how to achieve your dreams, has Down syndrome, as does Marcus.



Both of them have faced challenges and both of them have big dreams.  Dakota is giving speeches around the country and Marcus has already published his first storybook for children, Black Day: The Monster Rock Band. So why not?



Why not a Tony Award?



After all, Marcus has been working on writing for Broadway for, well, about as long as I can remember. Plus, this year’s Tony Awards seemed to speak directly to aspiring young people, by repeatedly spotlighting two things: possibility and support.



From the opening number, which focused on the idea of a young boy and his dreams, to the diversity of performers both featured and nominated. The awards were a welcome breath of reach. The theme that no matter who you are, in this realm, your dreams are possible, frankly brought me to tears. Tears of recognition for the possible.



The other common theme was support. This came from two very different places in our communal experience. The first because the Tony Awards were held on Sunday June 12th, the day our country reeled from the horrific massacre in Orlando. Frank Langella’s acceptance speech included, “Today in Orlando, we had a hideous dose of reality. I urge you, Orlando, to be strong, because I’m standing in a room full of the most generous human beings on Earth, and we will be with you every step of the way.”



Lin-Manuel Miranda, an icon worth emulating, accepted his award with a sonnet that included, “We live through times when hate and fear seem stronger. We rise and fall and light from dying embers remembrance that hope and love last longer. And love is love is love is love is love is love…”   



This support as a community, a palpable and essential social consciousness, encourages healing and growing and improving.



The other kind of support that was evident was the personal support that winners acknowledged. Daveed Diggs recounted that, “My mom gave me permission to do something that everyone else wasn’t doing and my dad supported me and made it possible, and I think a lot of us are here because people in our lives did that.”



Thomas Kail said, “I’m here because so many people said, ‘Why not this?’”  He also reminded us all to keep telling stories.  



SO WHY NOT THIS?



That is a way of thinking that Marcus embraces. He’s not afraid to try what he loves. He’s not afraid to visualize his dreams. He’s not afraid of failure and, more importantly, he’s not afraid of success. He says, “Alright, I’ll try.”



The thing is, there are very few winners without a team.



Acceptance speeches go on because there are so many people who are part of the “winner.” Olympic medalists do not get to the podium alone. Because Marcus has an intellectual disability, assumptions are more often made about his “cant’s” than his “cans” – which is a shame, because his talents are valid and beautiful and deserve to be celebrated. Everyone needs a team; everyone needs support, that does not discount what each person can and does with their own talents.  



So, back to Marcus’ goal to win a Tony. Can a Person with Down Syndrome win a Tony Award? 



If it’s his dream, then why not?



WHY THE HECK NOT?



This is a slightly revised post originally published by Mardra Sikora on GrownUpsAndDowns.com. Since this post originally “aired” I’d like to note that we have a few friends with Ds who have won Emmy’s, so…there ya go.


Thanks for sharing, Mardra! I hope he achieves his goal!- Evana
This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!
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Friday, October 21, 2016

Parenting, stress, and illness

Welcome to another day in Down syndrome Awareness Month!

I have had the pleasure of sharing some of my thoughts about my life raising a child with chronic illness (Jaycee's lung issues that are unrelated to her Down syndrome) on some other websites.


In case you missed them, I'm giving you a chance to read them today.


This is an honest look at the thoughts I have when my daughter is sick.



This post shows how I am trying to tackle the stress that comes on when caring for Jaycee during an illness.


Jaycee doing a vest treatment for her lungs


Remember- you can keep up with all of my writings by following my blog's Facebook page.
Thanks for stopping by today!
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Thursday, October 20, 2016

My Son Explains His Sister's Down syndrome

Last year, I interviewed my son on his vast knowledge of Down syndrome from his ripe ol' age of 6 during Down syndrome Awareness Month. He is now a year older, and I am intrigued to hear his responses again. 

So here goes another interview with my son, Elijah, now age 7.

What is Down syndrome?
It's something you have. Sometimes when you have Down syndrome, you can't talk.

Do you think Jaycee is any different?
No, I don't think Jaycee is any different.

What are some things you love about Jaycee?
I like that she likes school, but I don't like school. I love that she likes her pets.





Why does Jaycee wear the bi-pap mask and breathing machine at night?
It is because she has sleep apnea.

What is sleep apnea?
It makes you not breathe at night when you have Down syndrome.

What is something that Jaycee does really well?

She plays on her IPad well.

What do you like to do with your sister? 
We like to watch movies in her bedroom together. I like to ride rides with her too.

Is it easy or hard having a sister with Down syndrome?
It is very hard because I need to wrestle her. Sometimes she hits me, and I have to get her back.

Do you think Jaycee would make a good friend for someone? Why?
Yes. She's funny.



I love getting some insight into what my son understands about his sister and Down syndrome in general. He still has some things to figure out, but he does understand the most important thing...that Jaycee is his sister and friend (and apparently wrestling buddy)!

This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

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Wednesday, October 19, 2016

Jaycee's Baptism Anniversary

Today is a special day for our family.

Two years ago today, Jaycee was baptized in our church surrounded by friends and family. It was a beautiful Sunday afternoon.

October 19, 2014 Jaycee with Pastor Chad with me watching from the side


Before this happened, I can't tell you how many times I witnessed other children being baptized in church wondering if and when I would see this with Jaycee. I wanted to see her grow in our faith. I wanted her to understand this important step. I wanted her to live long enough (she's had some really close calls due to her respiratory issues) to have this chance.

I wanted these things but I knew she had large disabilities. I wasn't sure if it was reasonable to expect a minimally verbal child to be baptized. I wasn't sure if she would understand and if people would be open to the idea.

I had a stirring in my heart that it was time to prepare Jaycee for baptism. I tried to ignore it but the thought of Jaycee being baptized came again and again. She had been extremely sick in the ICU a few times before getting baptized. While this wasn't the reason I started the process of getting her baptized, it is what finally motivated me to speak up and get a date scheduled.

Part of writing and sharing our life with the public is to share information. The topic of Intellectual Disability, baptism, and church guidelines is a topic that is not widely discussed. There are some denominations like the Catholic church that have written guidelines on this topic but this may not be the case for your church or faith.

If you are a parent with a child with limited verbal skills and/or an Intellectual Disability, I urge you to pray and reflect on this topic. If this is a desire of your heart, do not ignore it.



Here's a great response to the topic of baptism and intellectual disability on another site:




If you want to know how I taught Jaycee about baptism read this: Teaching Baptism
To read the backstory of the baptism, read this: To the Pastor Who Baptized My Daughter


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Tuesday, October 18, 2016

When Jaycee Met Yadier Molina

It is important to give back even when you still need help.

That is the sort of philosophy that my husband and I try to live by. We have been blessed by the help of many organizations over the years since having our daughter with Down syndrome. Therefore, we try to give back when we can. For instance, we held a used book and movie drive a few years ago for our local Children's hospital. We have often financially donated to the Ronald McDonald Charities in St. Louis because we have benefited from their charity. But, the organization we support most frequently (besides our local church) is the Down syndrome Association of Greater St. Louis (DSAGSL), which is the Down syndrome organization that was first on the scene after our daughter's diagnosis.

The DSAGSL holds a team fundraising challenge each year to raise funds for the organization. In 2007, we formed a team, Jaycee's Gift, and raised money for them for the first time. She was 1 year old at the time.

First Down syndrome walk in 2007 -page from scrap book


Since then, we have fundraised for the DSAGSL in one capacity or another except for 2009 when Jaycee had a surgery scheduled, and we were preparing for the birth of our son. I'm not sharing this to brag on ourselves, but to stress that we support things we believe in. We are grateful for our friends, family, and community members who have given to our team or attended our different fundraisers. The last few years we have been especially grateful for our local Dairy Queen who agreed to a public one-night fundraiser, which has helped get the word out in our community.

Scrap book page from DSAGSL fundraising event in 2011

Which brings me to the story of Jaycee meeting Yadier....

For years, the DSAGSL has a "Walk in the Park" event at Busch Stadium, which is home to the St. Louis Cardinals. The fundraising teams can walk around the warning track of baseball field prior to a game. The top fundraisers for the DSAGSL are invited to participate in a starting line up with the Cardinal's baseball players at this game too.

This year, we were super excited when the Down syndrome Association of Greater St. Louis sent us an email alerting us that Jaycee had won a starting line up position.Yay! The top fundraisers are automatically given a position in the starting line up but there are a few positions raffled off among the other fundraisers. Jaycee was one of the children who won a drawing among those who raised funds to receive a starting position.


A few weeks ago, many of Jaycee's family and friends attended that game to support her.


After the walk around the warning track with our team, Jaycee and my husband were sent to the holding area for those who were participating in the starting line up. The rest of us took our seats with our cameras all ready for that magical moment.

Jaycee and the other children with Down syndrome participating had their names announced and were given a position on the field.

Jaycee meeting Fred Bird


Jaycee was at home plate, which meant she would be meeting Yadier briefly before the game started. But first, Derrick May the assistant batting coach for the Cardinals signed a ball for Jaycee. Then Jaycee smiled for pictures of her with May and all the umpires at the game.

Then Yadier ran out and asked Jaycee if he had a ball for him to sign. Jaycee handed her ball over.  Jaycee was all smiles and babbled as she looked his baseball uniform over.

The Magical Moment of the ball signing


Then Jaycee decided she needed to sign her name on the baseball too! I guess writing on a baseball looked fun!

As all of this took place, those of us in the stands watched the big screen and cheered for our Jaycee as she left the field with a baseball and a big smile.

Jaycee's signature on top and Yadier's on the side




It was an amazing day and experience!

There have been many moments like this over the years when I shake my head in disbelief thinking, "My life is too good to be true!" I never would have imagined this moment would happen 10 years ago when I sat in the NICU wondering if Jaycee would survive her open heart surgeries and what her future held.

Her life has been good and has been full despite any labels attached to her. These special experiences make her life even more amazing, and my husband, son, and I get to experience it with her!

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Monday, October 17, 2016

Down syndrome Awareness Day 17

Happy 17th day of Down syndrome Awareness Month!

This blogger website does not like videos I try to upload so...................


Click here to my blog's Facebook page in order to watch a short video where you can see Jaycee using her total communication approach (signs, gestures, communication device, and words) to "talk" with me.



Tomorrow, writings on here will resume!





This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!
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Sunday, October 16, 2016

Meet Dash: I Can...

I hope you have enjoyed the "I Can" series here on the blog for the celebration of those with Down syndrome for Down syndrome Awareness Month. If you have read all the posts in the past week, you will see that each person with Down syndrome has unique personalities, talents, and abilities. They also have people around them that love them dearly. It has been my hope that you could see that those with Down syndrome have lives that are worth celebrating.

To finish up this series, we have one more cute little guy named Dash. His mom, Samantha, has this to share:




Meet Dash






My name is Dash, and I'm almost 2.

I can sign or say about 20 words, climb up and down the stairs, get on and off the couch, walk short distances, stand, and clap. I can say "I did it" when I accomplish a goal. I love to sing "Wheels on the Bus."

I love to play the piano and help the praise team sing at church. I lift my hands to worship and take the preaching very seriously. I go to Sunday School where I sit and listen to stories, color, and have snack and play time. I love to eat all kinds of foods, and I can mostly feed myself -even with a spoon or fork. I like to brush my own teeth like a champ every night. I also like to pick out my clothes. I actually picked out my overalls in this picture all by myself.


Dash, you have great choice in clothing! Thanks Samantha for sharing about your cutie!-Evana

This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

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Saturday, October 15, 2016

Meet Kayla: I Can...

Today, I welcome guest blogger Michelle, who writes over at Big Blueberry Eyes. She will continue our celebration of individuals with Down syndrome as Michelle tells about a milestone for her daughter, Kayla.


Meet Kayla







Riding a bike has been something I've wished for Kayla to be able to do since she was born. It is one clear memory I have from those early days after her birth - asking Joe if he thought she would be able to ride a bike.

I've been chronicling this journey for the past few years. She was almost 10 before she even started riding a bike with training wheels. She just had no interest or motivation.

The next step was to take an I Can Shine bike camp, and then she won a Strider Balance Bike.

It was such a blessing when she won the Strider bike. She really liked this bike - she didn't have to worry about pedaling and she felt more comfortable on it. The best thing was she could once again be independent and ride her bike around with Lucas and the other kids.

She still enjoyed our bike rides using the tandem bike, too.

We put her other bike up and let her focus on the Strider bike. It's been about a year since she's been using that one. On Monday we went for a ride on the tandem and I asked her if she wanted to practice on her other bike when we got home and surprisingly she said yes.

True to her word, when we got home she got on the old bike from bike camp and I held on to the handle. We started going and it felt like she was pretty well balanced so I let go of the handle to see what would happen. She stayed balanced and she pedaled for longer than she had in the past. I was shocked! She probably went the length of about 3 houses by herself without me holding on.

She agreed she would show Joe when he got home from work. So after dinner we went out to show him what she was able to do.

I let go of the handle expecting her to go a few houses down again, but she didn't. Instead she didn't stop, she just kept going. She kept pedaling and pedaling. My slow jog turned into a run. She saw a group of kids down the street and rode her bike towards them yelling, "Guys! I'm riding my bike!"

Most of the kids have seen her 2 years ago trying to practice with this very bike and not getting very far, they've seen us ride around on the tandem, they've seen her on the Strider. I think it didn't register at first, what she was doing, but then one girl started clapping as she got closer and then a few other kids started joining in.

I was chasing after her, stunned that she was actually doing this, she was riding her bike totally independently! I had to hold back my tears.

When she stopped to turn around she said, "I want to go again!" She rode back through the group of kids. "Watch out guys!"

Someone's dad was out bouncing a ball. The ball bounced up and hit Kayla. She rode through and he yelled out, "Oops, sorry!"

Without missing a beat Kayla kept pedaling, it didn't even throw her off stride, and she yelled back, "That's ok!"

When we went out to show Joe, I was not expecting her to ride down the street stopping only to turn around. She hadn't been on this bike in a year. How was she doing this?!

But she was, she was doing it.

Words can't convey how excited and proud I am of her reaching this new milestone.

If the video doesn't work try clicking this link - it should go directly to the youtube video.


Thanks Michelle for sharing this milestone! I hope to see my child do this one day! -Evana
This post originally appeared here.



This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

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