The Little Emily that COULD! – by Beth Dively

Receiving the News…
We had waited almost 10 years before deciding to have another child. I had two other healthy children with little complications, so I never gave much thought about possible issues. I didn’t consider myself to be an “older” mother at age 34. When my doctor first asked if we wanted an amnio because of my age, we said  no. We waited this long and didn’t want to run the risk of a complication from an amnio as the results wouldn’t have made a difference. However, our triple screen came back as a high probability that our baby would have Down syndrome. So, again, he recommended an amnio to confirm and either put it to rest or help prepare. We agreed even though the outcome would not make a difference.

One evening during church, something happened to both my husband and I that we felt was God’s way of letting us know we were about to receive a special gift. Our church gives a blessing to each expectant mother, along with a rose to put in a vase at the feet of the Blessed Mother.  Something made both of us look at that vase at the same time and we realized our rose was the only one different from the rest.  It was white, pure and beautiful!  I think we knew then what our results would be.

Our official results came sooner than we expected which in fact only meant one thing. It was a long quiet drive to the appointment, and it was far from typical. The tech was somber asking if we needed anything, and I wasn’t in the same waiting room as other moms. When the doctor came in and gave us the news, and I immediately burst in to tears. I wasn’t sure if I  was crying because my baby was not going to be like my other children or just relief I had an answer. My husband asked “What is it?”, meaning Down syndrome, and the doctor misunderstood and said, “It’s a girl!”  From that moment I was suddenly filled with an immense feeling of joy!  Not that I wouldn’t have been if he said it was a boy, but for some reason I felt a bit more peaceful and excited.  The choice had already been made for us, God has made the choice.

The joy I had felt earlier left me for a while.  For many days I was afraid, I felt guilty – asking what I had done wrong, and mostly thinking our lives were going to change forever. I went through all of the emotional stages of grief and loss.  So many people told us they were so sorry when they heard the news.  Then I would get angry with them for saying they were sorry.  Sorry for what?  What’s that supposed to mean? Are people going to feel sorry for us and Emily for the rest of our lives?  I never showed my anger but it was certainly there. I had never had anyone feel sorry for me in my life, I didn’t want to start now. 

I tried to read up on Down syndrome and become “educated and prepared,” but  I found myself being overwhelmed and would throw the books down, never wanting to read anything in the pages. Then, I spoke to someone at the DSAGSL and they told me to stop reading and focus on having a baby.  It was the best advice I ever received.  I began to enjoy my pregnancy as much as I could.  I knew Emily was going to be special from the time I saw that white rose. I was right, our lives have never been the same since, and we love it! I’ve often been asked if I would have preferred not knowing her diagnosis until after she was born. I think  it’s different for different people.  Personally, I was happy knowing ahead of time. I could focus on my tiny, new, baby girl and not the shock of a diagnosis. I learned how strong I could really be.

Why Down Syndrome Awareness is Important…
The biggest thing I can think of in promoting Down Syndrome Awareness is the fact that Down syndrome is a diagnosis, it doesn’t define who the person is.  I’ve heard people refer to Emily and people like her as a “Downs Kid.”  What’s that supposed to mean? You wouldn’t go around saying “cancer kid” or “Cystic Fibrosis kid”.  It’s not who they are! Emily has the same sense of humor as my husband and daughter, and she looks just like her big sister, Ellen. She’s part of our family like anyone else is a part of our family.  Several years ago, a co-worker said to me, “You know, I’ve never known anyone with Down syndrome before. The more I get to know Emily the more I realize she’s just a Diveley, she’s just like you guys! But she happens to have Down syndrome!” That’s the way I want other people to see her and others like her.   I want people to become more aware, so they see the person FIRST as a person and the Down syndrome LAST.

How We Make a Difference…
We have never sheltered Emily.  When we go somewhere, she goes along.  We let her experience as much in life that she’s physically able to as we did her older sister and brother.  We do this for two reasons.  First, we want to make sure she has the socialization skills to interact with people in the real world even after we’re gone.  Coddling her, treating her like glass will do her no good.  She knows how to act when we go to a restaurant because we have taught her from early on, just like we did our other children. We want her to enjoy the same things in life like everyone else to the best of her ability, especially now since she’s in high school.  Second, when we take her out, the world gets to see what people with Down syndrome are really like, which is pretty much like you and me.  I push for integration in her school (fortunately I don’t have to push hard) so she can have the same experiences the other kids have.

I’ll never forget letting her go to the Homecoming Dance this year at school.  I was nervous because the supervision would be a bit different than a normal day at school.  But I knew she could hold her own and she was going to be with the kids she walks the halls with at school every day.  And because of the interaction she has with the other kids in school on a daily basis, I knew they would look out for her and make sure she had a great time.  She is their friend, their peer. They think she is funny. They know she loves to dance. She’s just another one of them, but she happens to have Down syndrome. Bringing kids together from very early on makes a big difference in how they will interact with each other and how our kids will get along in the real world.  Because we’ve always included her and the kids at school include her, when we go out in our community, we are referred to as “Emily’s Mom and Dad,” we no longer have names, and she knows everyone!

About my Emily…
Emily’s personality is my favorite thing about her as a whole person.  There are so many wonderful aspects of her personality that it’s hard to name just one.  But if I had to, it would be her quick and very witty sense of humor! She always has us in stitches. She is the knock-knock joke queen and laughs just as hard at herself as we do at her!  She has the ability to change the entire atmosphere in a room when she walks in. When Emily is around, you know she’s there! She lights up the room with her smile and will pull you up when you didn’t think you had anything left in you to smile about!

If I Had One Thing to Share…
I would want people to know that having Emily in our lives has brought us more joy than we could have imagined.  As afraid as we were when we received the news one October day in 1998, we would have never thought we would be where we are today.  She has taught us more about life, compassion, love, thoughtfulness and patience. We have learned to slow down and enjoy the smallest of things.  There is no reason for anyone to be sorry for her or for us.  We have been fortunate that she has not had near the health problems that some kids with Down syndrome can have.

We should never assume that anyone with Down syndrome can’t do what other people can do. We all have our strengths and weaknesses, but that doesn’t make us any more or less of a person than anyone else.  For all the new parents reading this, slow down! Love your baby because they are after all a baby first, and never put limitations on them.

I learned this valuable lesson at one of Emily’s genetics appointments when she was a baby.  The doctor told me to not expect her to roll over any time soon and I accepted that.  That very night, she rolled over. That was the last time I let anyone tell me what Emily “COULDN’T” do!

World Down Syndrome Day – by Paige and Lindsey

Lindsey and Paige, two self-advocates who volunteer at the DSAGSL office weighed in on all things World Down Syndrome Day for our blog.

1. How do you celebrate World Down Syndrome Day?

Lindsey: I plan to hangout with my friends at a bowling event.

Paige: I donated my art work to St. Louis Children’s Hospital as a random act of kindness, and I plan to hang out with friends.

2. What does the day mean to you?

Lindsey: It means helping others like I do at the Down Syndrome Association office to celebrate the day.

Paige: I feel it is a day to create awareness for people with Down syndrome.

3. Why should everyone celebrate World Down Syndrome Day?

Lindsey: It shows kindness and helping each other to our community.

Paige: To me, it is really fun to help others.

4. What are your plans to celebrate for this year?

Lindsey: Encourage others by sharing stories and events. I hope to inspire others to do activities, too!

Paige: My plan is to gain more information on how to help others!

How to Sign Up for 2016 Calendar Photo Shoots

It’s that time of year again…photo sign-ups for our 2016 Friends for All Seasons Calendar will begin Monday, March 23 at 9 am!  In order to enter your loved one with Down syndrome to appear in the calendar, you must take the survey. Sorry, no phone call or email submissions will be honored.  The survey link will be provided in the following formats, on Monday, March 23 at 9am:

  1. On Facebook – come back to our page and follow the link to the survey
  2. E-Blast – a special email will go out with the link embedded
  3. On the World Down Syndrome Page of our website

DSAGSL Receives SEVEN National Awards!

Last week at the Down Syndrome Affiliates in Action Conference in Las Vegas, Nevada, the DSAGSL was awarded the following:

Affiliate of the Year
Best Website
Best Social Media
Best Promotional Items
Best Broadcast Media
Best Printed Items
2nd Place Best Outdoor Advertising

THANK YOU to all our members who assist to keep the DSAGSL great!

ABLE Act Update

The Senate floor substitute for Senate Bill 174 (the Missouri ABLE Act) was perfected yesterday, and passed out of the Senate today. The vote was 32-0. The Senate floor substitute includes language that makes sure that the bill follows the federal ABLE Act in important areas, while also making it similar in some respects to Missouri’s MOST 529 college savings plans. A recap of the key features of the ABLE program is included at the end of this email. The bill now moves to the House of Representatives. It will then be assigned to a committee and have a hearing in the House, if it passes out of committee in the House then it will go to the floor of the House for votes. If it passes out of the House without changes it would go to the Governor’s desk. If the House makes changes to the version of the bill that it passes a group of senators and representatives will agree on a conference committee substitute. Then, both houses have to pass the conference substitute, then the conference substitute goes to the Governor’s desk, and if the Governor does not veto it, it will become law.

If you would like to contact your senator to thank them for passing the Missouri Able Act (SB 174), click here to find their contact information.

DSAGSL has a NEW Intern – Heather!

I am St. Louis native currently finishing up my degree in Communications and Public Relations at the University of Missouri-St. Louis. I was drawn to the opportunity to intern at DSAGSL because of my Aunt Carolyn who had Down syndrome. It is the perfect place to learn and spread awareness at the same time.

In my free time, I enjoy spending time with my husband and our six nieces and nephews. I also love cuddling with my new puppy and working out. I am of course a Cardinals fan but an even bigger Blues fan.