You Don't Want to Miss This Life

I remember many things about my daughter when she was a baby.

There were dozens of frilly dresses and cute outfits hanging in her closet. She looked adorable in all of them. I enjoyed dressing Jaycee up and fixing her brown strands of hair.

She made the sweetest little noises and had a weak cry that I never strained to hear.

There were early milestones to celebrate. Sitting up, walking, and climbing steps were each documented with videos and pictures. The milestones all came later than expected but were exciting nevertheless.

My husband and I held Jaycee often and showered her with love like any other baby. Perhaps, we did so a bit more as she underwent two different open heart surgeries before her third birthday. The uncertainty of her future was never far from our minds.

My daughter loved Barney as a preschooler. I got to know many of Barney's hit songs. I also became intimately aware of Mickey's need for Toodles every episode.

Though the years have passed, Mickey and Barney can still be heard occasionally on Jaycee's iPad. Hearing Barney sing about ice cream and cats takes me back. I miss the days when my daughter was little. Those times when she was light enough for me to pick up and spin around while she giggled with glee.

Jaycee is a teenager now. Her clothes are still plentiful and cute, but the frilly dresses are no more. After she chooses her clothes, she rummages around her hair basket and hands me a ponytail or hair barrette indicating her preference for the day. I obey her wishes like a good stylist.

She finds ways to communicate when verbally she can't. There are many gestures, grunts, and signs that I usually decode easily. There are some things through repetition she has learned to say. "Momma's mad like a hippo," for some reason is one such thing. Of course, she knows the lyrics to 'Baby Shark,' much to her brother's dismay. Her speech isn't clear enough to say everything she wants, but she tries hard and keeps making progress. Her cry, which occurs mainly during necessary medical procedures and tests, is now loud and breaks my heart a bit.

We have had different milestones in the past few years: the first time using a razor, first school dance, and first time cooking green beans independently.

Even though she's growing up, Jaycee still loves to be hugged and kissed. She sometimes gestures for us all to have a family hug. When she spots me sitting on my husband's lap, she yells for her brother, "Bubba, pile on dad!" My husband then finds himself holding all of us within seconds of her announcement.

Thirteen years ago, a doctor pointed out everything on Jaycee's newborn body that indicated Down syndrome. I cried about those differences. The doctor gave predictions about her life, and I worried what it would mean for she and I. When I researched Down syndrome, discouragement came with every word read.

In all the information I received, I never heard: "You don't want to miss this life." I would have benefited from someone telling me just that. My life with Jaycee would be great, and I wouldn't want to miss the chance to be her mom. I wouldn't want to miss all the love and awesomeness that lived inside my daughter.

I wasted too much time having negative emotions early on. Eventually, Jaycee's diagnosis faded into the background. She alone was what I saw and thought of, not the Down syndrome. She's more than her diagnosis after all.

If there's one thing I could tell a worried mom of a child with a Down syndrome diagnosis, it would be this: You don't want to miss this life.

It will be different and sometimes challenging. But, it is good. Our family is missing nothing.

October is Down syndrome awareness month. Down syndrome is a genetic condition when there are three copies of the 21st chromosome instead of only 2. 

Down syndrome Awareness: The Finale!

For 31 days, I have shared stories, thoughts, guests posts, and information.

For 31 days, readers have visited this site.

And, I hope that somewhere in that 31 days I have reached a parent with a newly diagnosed baby and assured them that they can do this. I hope I've given a perspective on topics related to Down syndrome that can help families, therapists, and the general public. I also hope that my stories of my daughter's life have helped people see that life with Down syndrome isn't disastrous. In fact, it can be very, very good.

Thank you for stopping by here throughout the month and taking the time to read.
The top ten countries that represented the readers this month were:
-USA (Thanks, fellow Americans!)
-Canada
-Russia
-Ireland
-United Kingdom
-Ukraine
-Australia
-South Korea
-France
-Germany

The 5 most popular posts during this month were:
1. Help That Hurts (Guest Post by Dana)
2. Siblings, Down syndrome, & A Hole in the Ceiling (Guest Post by Ger)
3. Are Kids with DS Stubborn?
4. My Worst Day with my Daughter with Down syndrome
5. Awkward Moments: Special Needs Edition

If you missed one of these, take time to read them. They are all great!

Check us out on Facebook too!!! I put a few extra things on FB this month.

Hope you come back next week!

Siblings Who Like Each Other

Happy day 29 of Down syndrome awareness month!

I have almost made it through the whole month- sharing a post each day on some topic of Down syndrome. Today, I'll show a candid video I took of my kids. 

My kids (ages 11 and 8) really like each other. Truly... They may have some small squabbles, but they get along really well. My son (who is actually younger) jumps in and helps Jaycee without being asked sometimes. He is aware she may need help, and he just does it. He's a great brother! 

A few weeks ago, the kids were bouncing on a jump pillow at a campground when I took this video. My son noticed Jaycee's balance was a bit off since there were other children jumping on this inflatable at the same time, and he did this: 

People wonder all the time what the dynamics are in a family like mine. They wonder if their children will form good relationships. I hope this video is the proof some people are looking for!

I Never Thought...Day 7

This week for Down syndrome awareness month, I've been sharing some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.

***

This post is different today. This post is about a moment that is a blessing and a curse all at the same time. A few years ago, Jaycee was blessed with something I never thought would happen to one of my children. She qualified to receive a wish from Make-A-Wish.

Years of medications, hospital admissions, surgeries, and daily medical interventions led to Jaycee's health being serious enough to qualify for a wish. It wasn't necessarily her Down syndrome that put her in the situation. Her AV canal heart defect, Wolff-Parkinson White syndrome (another heart condition of the electrical system), asthma, sleep apnea, recurrent pneumonia, and severe reflux all together make simple colds anything but simple. No one could predict all of Jaycee's health issues when she was a baby, and no one can tell me today what her future holds.

I never thought I'd be the mother of a child with a complex medical history. I never thought I'd sleep in an ICU room watching my child's monitors. I never thought I'd see my child on a ventilator for an illness, but I have more than once.

And in all the craziness of Jaycee's medical history, something good happened. It was Make-A-Wish.

For her wish, Jaycee wanted to meet Barney the Dinosaur at Universal Studios, which meant we stayed at Give Kids the World Village and visit other Orlando area parks. Here's a few highlights:

An amazing picture with the Toy Story characters

Jaycee meeting her favorite! Barney!

Getting some time with Elsa and Anna & the rest of the Frozen gang at Disney was probably the second most magical moment. 

I never thought my child would battle multiple health problems. But, I also never thought this would lead to Jaycee becoming a wish kid. The wish was a bright spot in Jaycee's life before, during, and afterward. We looked forward to her trip, enjoyed every minute of it, and still talk about it today.

Sometimes life doesn't turn out how you think it will, but sometimes good comes out of bad situations.

You can read more of Jaycee's Wish Story HERE.

Here's a story of her meeting BARNEY.

I Never Thought...Day 5

This week for Down syndrome awareness month, I'm sharing some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.

***

When Jaycee was born, I never thought I'd see her standing on the baseball field at Busch Stadium meeting a Cardinals' player. Nope-not in my wildest imaginations did I picture that! If you read Sunday's post, you'll know that in 2016, Jaycee's name was picked from a pool of fundraisers from the Down syndrome Association of Greater St. Louis to meet Yadier Molina at home plate.

This year, her name was picked again!

I was riding in an ambulance this summer with two paramedics and Jaycee when I checked my email in an attempt to stay awake. My husband and I had been up half the night with Jaycee as she had two hemorrhages related ton an oral-pharyngeal surgery. It had been a loooooong and scary night! She was being transported from an emergency room to the hospital that performed the surgery to get checked out. I was feeling very defeated, exhausted, emotional....you name it.

Then, I read the email stating Jaycee's name was picked again to be part of the Down syndrome Association's starting line up with the St. Louis Cardinals. I was excited. I called my husband who was following the ambulance. We both needed to hear some good news after having 2 weeks of problems following this surgery (that would later be 4 weeks!).

The day of the big game came. Jaycee was excited to be at a game with all her friends and family. She stood in the warning track during the national anthem. Then her name was announced, and she ran to the outfield with one of the Fred Bird girls. I was too far away to get a good picture, but there's Jaycee with the green shirt to the left running to the outfield.

 She waited for #55 Stephen Piscotty to join her on the field. Then he signed a ball for her (and another friend with Down syndrome). Again...too far away for a good picture, but you can see him (sort of) on the jumbo screen. You can see his red hat anyways.

Afterwards, Jaycee was eager to show off her signed ball!

Did I picture an amazing experience like this when I heard Down syndrome? No, I didn't. I had no clue just how full, amazing, and wonderful Jaycee's life would be! Down syndrome has not been what I thought it would be, and that's a good thing!


Special thanks to the Cardinals baseball team and the Down syndrome Association of Greater St. Louis for giving your time and loving families like mine!

I Never Thought...Day 3

This week for Down syndrome awareness month, I have been sharing some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life.

***

When a Down syndrome diagnosis was given, I never thought I'd see my daughter become an athlete. I was warned early on that Jaycee would meet her developmental milestones late. Her low muscle tone and extra flexibility meant that Jaycee rolled, crawled, walked, ran, and jumped much later than other children. Over her 11 years of life, Jaycee has spent hours and hours and hours in therapy trying to achieve these motor skills. Her successes were exciting, but she still has low muscle tone that affects her today. 

There are some children with Down syndrome that can join sports teams with peers, but my daughter is not one of them. She's not at peer level in sports, and she never has been. We live in a rural area, so there's never been any "special programs" for Jaycee either. Sports really aren't that important in life, so I was fine with her never playing them. 

But that all changed. My daughter's grade school teacher (and classroom aides) decided to bring Special Olympics to their school. This meant twice a year, Jaycee would be participating in events for Special Olympics. She would be on her very first team! 

I didn't know seeing my child in a team uniform would be so emotional for me. My daughter was an athlete! Years ago, I never thought I'd see this child, who took almost 2 years to learn to walk, run in a short 50 m race. Back then, I never thought I'd see this child, who didn't hold her bottle until almost a year old, throw a softball and qualify for the state games. I never thought I'd see my husband give Jaycee pointers on how to best throw the softball because he threw shot put in high school.

Special Olympics Athlete 

Jaycee receiving a medal at the state games. 

Jaycee and her biggest fan (me!)

Yep-it's true. I never thought I'd see my child compete and be an athlete. I also never thought it would mean so much to me! There are many things I never thought I'd see my child do, but Jaycee has showed me how much she can do given an opportunity!

Special Olympics really is a gift to families like mine. Consider volunteering or donating to help those with disabilities continue to have chances like my daughter has received. Special thanks to Jaycee's coaches and helpers who give their time and resources to keep Special Olympics going at our school. 

I Never Thought....

This week for Down syndrome awareness month, I'm going to share some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.

Most of the things I'll share this week have been possible in part by different organizations or charities that support and enhance the lives of people with disabilities. For that, I'm grateful.

****

When I found out my newborn baby had Down syndrome and a heart defect, I never pictured her standing at home plate meeting a well known baseball player. Yet, it happened. Here's Jaycee meeting Yadier Molina from the St. Louis Cardinals last year.

Our local Down syndrome association has a walk and awareness event with the St. Louis Cardinals every year during one of their home games. A few of the older children-adults with Down syndrome get to take part in the starting lineup with the Cardinals. The people in the starting lineup are either the top fundraisers for the association's yearly funds drive or (like Jaycee) win a raffle from the pool of other fundraisers. We were so thrilled that Jaycee's name was drawn so that she could have this experience. She was so exited to meet a player, get a signed ball, and meet Fred Bird the mascot. 

So yes, this is something I never thought my child with Down syndrome would have an opportunity to do. A diagnosis does not determine an individual's life course! Jaycee has proven that to me time and time again.

PS-Joining a Down syndrome group has its perks!

A special thank you needs to be given to the St. Louis Cardinals and the Down syndrome Association of Greater St. Louis for helping people like my daughter have these experiences of a lifetime. 

John 9: Hope For the Special Needs Family

There are some scriptures in the Bible that have resonated well with me since giving birth to my daughter with Down syndrome. This passage is one of them: 

As Jesus was walking along, he saw a man who had been blind from birth. ² “Rabbi,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”

³ “It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him. ⁴ We must quickly carry out the tasks assigned us by the one who sent us.^[a] The night is coming, and then no one can work. ⁵ But while I am here in the world, I am the light of the world.”

⁶ Then he spit on the ground, made mud with the saliva, and spread the mud over the blind man’s eyes. ⁷ He told him, “Go wash yourself in the pool of Siloam” (Siloam means “sent”). So the man went and washed and came back seeing!

John 9:1-7 NLT

Now, some people might read this passage and conclude that all people with disabilities need healed. I believe this is why many people in the church have felt comfortable and "right" about approaching Jaycee and I over the years to pray for her to be healed of Down syndrome. I'm not going to discuss this point today, but I'm going to try to show you something else that speaks to me in this passage. 

When I read this passage 11 years ago after giving birth to Jaycee, the question the disciples asked Jesus hit me hard. They saw a man born blind, and they wanted Jesus to explain which person's sin caused the blindness. They wanted to know why it happened. They wanted to know whose fault it was that a baby would be born blind. 

I wondered how many people in that village had the same question and opinion. I wondered how many times the parents looked at their blind child over the years and wondered what they did wrong. I wondered if they felt guilt or ashamed from the looks, assumptions, and questions. I never thought about the parents in this story until I had Jaycee. I always understood the curiosity of the disciples. But, after having Jaycee, I felt for those parents. 

You see after Jaycee was born, there were many, many people searching for the "answer" of why my baby was born with Down syndrome and a heart defect. A few did suggest my own or my husband's sin may have been to blame. I was encouraged to pray and repent and see if my daughter could be healed. When she wasn't, I was told to dig deeper and pray harder to help my child. They looked at my daughter and believed her diagnoses must have been sin related. This caused me to feel like a second class citizen in the Christian world. My family felt marked.

Me with newborn Jaycee

Still others saw my newborn daughter's diagnoses as something from God. They said I was strong enough or special enough to catch God's attention to receive a gift of a child like this. They wanted me to embrace the diagnoses.

You know what I was after all these opinions. Confused!

Opinions are many when a diagnosis comes. That's a fact now and appears to be a part of the culture way back in Bible times too.  

Jesus responded to the disciples that no one sinned to cause the blindness. It was no one's "fault," and it was merely for people to see God's power. In other words, the disciples were way off! They were viewing the man and his parents with some judgment (deciding sin caused the physical disability). 

This showed me that you can be very close to God and develop wrong conclusions. The disciples walked with Jesus and heard his teachings. They were close to him, yet they came to some very wrong conclusions about the parents and the man. Had they not talked to Jesus first about the situation, they may have talked to the blind man or his parents about their sins trying to "help" them. They may have driven the family farther from God instead of bringing them closer.

That was something good the disciples did. Before they talked to the man who was blind, they talked to Jesus about it! The information they got from Jesus was revelation to them!

Over the years of raising a child with developmental and medical problems in the Christian faith, I have had to keep this passage in mind. The first point being that many people are searching for answers in my situation, not just me. Secondly, very faithful Christians may get some things wrong because not one of us have God's perspective. People will say wrong things to me, and I need to be able to respond to them with grace and forgiveness. I can also teach people about their wrong assumptions and help them see beyond a disability. Finally, we all need to set our opinions aside and ask God for information on a situation before opening our mouths. We could really do permanent damage to a person's spiritual life if we speak without God's wisdom.

This is why John 9 is one of my favorite Bible passages. God has heard every accusation against my family. God has seen people who have tried to minister to us when we didn't ask to be ministered to. God has heard my questions and seen my tears. He has the answers we are all seeking. He has all the wisdom. He is the hope even when others make me feel like there's no place for Down syndrome in the church. God is the one who embraces my daughter's soul and can help others do the same.


Thanks for stopping by today! I'm taking part in the 31 for 21 challenge-where bloggers write for all 31 days in October for Trisomy 21 awareness. Happy Down syndrome Awareness Month!

My Worst Day with my Daughter with Down syndrome

I have had some hard days with my daughter with Down syndrome over 11 years.

You may think the worst day with her was the day she was born when I was told she had Down syndrome and an AV canal heart defect. That was a chaotic and scary day, but it had some joyous times too. No, that day wasn't my worst day with her at all. I was happy to be a mother for the first time!

You may think the worst day was the one that I handed my 3 month old baby off to a surgical team for her first open heart surgery. That was a hard day. The day she was 2 years old and it happened again was another rough day filled with anxiety. But still, it wasn't the worst.

Perhaps, you think it was the day I walked Jaycee into school for the first time. Alright, none of you probably thought that. Letting go of my tiny 3 year old's hand did require a new courage from me though, but no- that wasn't my worst day.

You may think that our worst day together was the day Jaycee hemorrhaged at home after a surgery when she was 3 years old. Yep, that was a really terrifying moment that caused panic, but not the worst.

You may think the worst day was when I saw a group of girls roll their eyes and "play" run from Jaycee. That day sucked, but I made it through it. Jaycee never caught on to their games, which made it better in some way.

I'll spare you of any more possibilities. Let's get to it.

The worst day was the day that my daughter was on the verge of death. It was a little over 4 years ago when my daughter was sleeping in an Intensive Care Unit's hospital bed sick with pneumonia. Without warning, her blood pressure dropped and a herd of doctors scurried in the room. Multiple IVs were started to push fluids. I left the room in a puddle of tears as Jaycee was being placed on a ventilator (something she needed for 3 weeks). Hours later, Jaycee was somewhat stable so I could finally see her again. As my husband and I neared her room, two doctors met us at her doorway. We were told Jaycee was in septic shock, in cardiac failure and pulmonary failure, and not doing well on maximal support of the ventilator. We were told she may not make it. We were asked if we wanted to see a clergy, and we were encouraged to call close family in to see her.

I walked into her room, which was filled with IV pumps and machines. I held her hand. I prayed with her. I told her to fight. I stared at her monitor and willed the numbers to improve. I jumped with every alarm and held my breath until it stopped. My husband did the same thing.

This was by far the worst day with my daughter. It had little to do with her Down syndrome and more to do with crummy lungs and a perfect storm of complications. For three weeks, Jaycee's life was in limbo. I prayed and pleaded for her to live. That might surprise some people. Some people may think I'd be better off not having a child to care for the rest of my life. But, they don't know the love I have for my child. I wanted her to live more than ever. Her life was worth it all, and I wanted nothing more than to see what her life could become.

Four weeks later when Jaycee arrived home in a wheelchair, it felt like the best day in the world. It felt like a miracle. It was a miracle!

Life is sometimes hard and unpredictable. It's not easy having your child endure multiple surgeries, complications, and rough spots in life. But, my worst day with Jaycee taught me to appreciate all the other days with her more. Her life is precious. I've never forgotten that since that "worst" day when I almost lost my sweet little girl. Glimpsing into death really did teach me not to take her life for granted. I hope I never do...

This post is written for Down syndrome awareness month, which is an opportunity for bloggers to write all 31 days in October for Trisomy 21 awareness. 

Guest Posts Wanted for DS Awareness Month

It's almost here!!! Hooray!!

What is almost here?

Down syndrome Awareness Month-coming in October!

The National Down syndrome Society (NDSS) calls for October to be a month of celebration of abilities and accomplishments of those with Down syndrome.

During the month of October, I participate in the 31 for 21 challenge--blogging 31 days in October for Trisomy 21 awareness. Keeping the NDSS's position in mind, last year I had several guest posts for a series I called "I Can." The posts featured a story about someone with Down syndrome that was meaningful to the family or highlighted the person's abilities. I had a few parents share about their child, one child with Down syndrome share something, and even a sibling. These posts were quite popular last year!

This year, I would like to feature more stories of people with Down syndrome during October celebrating their lives, interests, achievements, abilities, and personalities. Want to join me? Write a post about your loved one, email it to me, and then it may appear here during October. I will also share it on my social media accounts.

Here's what I'd like:

Theme: The post should share accomplishments, abilities, interests, or personalities of someone with DS. You can send me something outside of this if you have a different idea, but I may choose not to run with it.

Content: New or old content is welcomed. If you are a blogger and have a post you have published on your own site, you may send it my way for a reposting.

Word Count: No set number for this. Most of the posts were pretty short last year, but length is up to you.

Deadline to join in: I need all writings by September 25th. Only one post will be shared each day, so there are only 31 spots for posts available. I will let you know the date your post will be featured by September 30th at the latest.

Ready, write, and send:
-Please send your written post via email to evanasandy@gmail.com. You can type your post in the body of the email or send it as a Word attachment.
-Please, please, please send a picture with it that can be attached to your post.
-If you are a blogger, feel free to link back to your blog and/or write up a bio of you/your family.
-I may edit your piece for length or clarity. Curse words will be omitted.

Here are some examples from last year:

Meet Nate: I Can...

Meet Benjamin: I Can...

Meet My Brother

Meet Sophie: I Can...


Click HERE for the NDSS statement on Down syndrome Awareness month.

I can't wait to see the guest posts!!!

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!

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. ² 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. ³ Indeed,^[a] we put bits in horses’ mouths that they may obey us, and we turn their whole body. ⁴ 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. ⁵ 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!

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!

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!

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!

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!

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!

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!

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!

Meet Sophie: I Can...

Today, let's celebrate another person with Down syndrome and their abilities.  

Meet Sophie:

Photo provided by Sophie's Mom

My name is Sophie. I'm 13 years old, I was born with Down syndrome, and I can perform! I've been on stage since I was five years old. I started with ballet dancing. When I was about nine, I started acting in this program called Detour Theatre Company. I've been in the musicals, Shrek, South Pacific and Happy Days - like the famous TV show. Every Christmas season, I do this dance performance called "The Snow Queen." I'm a good performer because I'm very social, I don't get nervous on stage (but I did when I was very, very little) and I have a good memory.  Now I'm in 8th grade and I'm in choir and cheerleading. Performing is my life! 




Thanks Sophie for sharing with us today!

To learn more about Sophie's family, check out: http://girlinapartyhat.com/.


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!