World Down Syndrome Day (#WDSD21) is Thursday, March 21.  It is a day recognized by the UN, countries, and organizations around the world where we celebrate the lives of individuals with Down syndrome. We also try to raise awareness and educate others about individuals with Down syndrome. It is March 21 every year.  March, the third month, symbolizes the three copies of the 21st chromosome and the 21st day represents that 21st chromosome. This is scientifically what causes Down syndrome. A person or their parents do nothing to cause them to have Down syndrome. The creation of the triple copy of the 21st chromosome happens at conception.

Individuals with Down syndrome are not defective, afflicted, or suffering. They are people just like you and me and are created perfectly the way they are supposed to be. I thought I would share 21 of my favorite pictures and thoughts about this journey that illustrate the rich and full journey of Rachel’s life. I threw in a few blog and video links, too. I hope you enjoy.  These are not in order, but my all-time favorite is at the end of the blog.

If you are reading today and you have a prenatal diagnosis or a newborn or a little one with Down syndrome, I want to say congratulations. We had a prenatal diagnosis and it wasn’t what we were expecting, but what a journey it has been. Not long after we got our prenatal diagnosis, I was out for a walk. I was talking to unborn baby Rachel and I said, “I don’t mean to hurt your feelings. It’s just that you aren’t what we were expecting.” Then, I giggled and said, “You are probably thinking that makes two of us because you’re not what I was expecting either!”  Humor is a good thing.

#1. Many people say this is their favorite picture of Rachel.

#2. These two sweeties. No wonder she’s been boy crazy since forever!

#3. Sweet picture at Buddy Walk 2004 by our friend Greg Battistelli from Faith Baptist Church. Our Faith family was amazing – joining Rachel’s team, cooking hot dogs, cleaning up and loving us through so much!

#4. My favorite picture of my daddy (Rachel’s Popie) and Rachel. Auburn – Arkansas football game. Go Hogs!

#5. Beautiful dancer.

#6. Friends. Mentors. Duck Faces. The Sweet Sound of Inclusion 

#7. First day at Olive Garden as a hostess. What a great first job! America’s Workforce Includes Rachel. 

#8. He makes beautiful things. Rachel’s baptism. She is a self-proclaimed, unapologetic Jesus follower. Her faith is very important to her. Her favorite verse is Joshua 1:9 “Do not be afraid for God is with you wherever you go.”

#9. I love how Congressman Yoder is looking on as Rachel speaks to a Kansas Legislative committee. They have a mutual adoration society. Advocacy has been a major part of our lives. “On a day when Congressman Kevin Yoder testified before a Kansas House committee, it was a 15-year-old Olathe South High School freshman who stole the show.”

#10.  Backstage taping Just Like – You Down Syndrome with Savanna. If you haven’t seen, click on that link and watch because when you know better you do better.

#11. Counting this as one picture. Olathe South High School Class of 2018. Smiles all around. Rachel with her case manager, teacher, volleyball coach, and most importantly friend, Ms. Fitz.  She represents all of the people in education from paraprofessionals to administrators to teachers to related services professional who embraced Rachel, shared our high expectations, and helped us cross the finish line.

     

#12. Disney Cruise Best Week Ever.

#13. Inclusion Works. Mentors are Important. A mama’s heart.

This picture is from one of the weddings Rachel has been in as a greeter, scripture reader, flower girl, junior bridesmaid, or bridesmaid. Isn’t it funny the things we get in our heads? When she was little, I remember wondering if she would have deep friendships with strong girls/women and would they invite her to be in their weddings? She has always been a girly girl and wrapped up in romance. So this pictures represents the power of inclusion, mentors, and strong friendships. Rachel met Katelynn when they were both in Christian Youth Theatre’s (now First Act Theatre Arts) Peter Pan.  Rachel was 10. Katelynn a few years older. Katelyn, like many others, has invested in, loved, and included Rachel in her life.  What a blessing it has been to have so many rich, deep friendships.

#14. Inclusion works. Read why I love this picture – PowderPuff. Inclusion. Joy.

Rachel Mast, senior, running to score a touchdown for the seniors at the Powderpuff game.

#15. ABLE. This is Rachel opening the first Kansas ABLE Savings Account. Represents years of advocating for the passage of this bill. This also has #NoCuts! No Caps! #SAVEMEDICAID superimposed.  Why? Because advocacy never ends and this represents our small role in helping to save Medicaid back in 2017. Find at more about ABLE Accounts at ABLE National Resource Center. 

#16. Rachel, her friends and her daddy on the Hill in 2017.  These girls have been in church and have done life with Rachel since third grade. They are true friends, good friends, real friends. They joined us to advocate for people with Down syndrome at the Buddy Walk on Washington. With very little input or direction from me, they made their own very personal and compelling arguments to our Senators and Representatives regarding why policies need to be changed to help their friend Rachel and all individuals with intellectual disabilities.

#17. Rachel as Strato in her high school’s production of “Julius Caesar.” One of my most favorite blogs about inclusion, too – Shakespeare and that Inclusion Thing.

#18.  At college, out with the Missouri State ADPi’s

#19. Rachel on the Runway.  I just think this photo captures Rachel. The stage is definitely her happy place, and being on stage for her favorite local nonprofit, Inclusion Connections, makes her even happier.

#20. Rachel loves her job at the University of Kansas Hospital. She is part of a team: her team. That is important to her. Like most people, work is important to people with Down syndrome and other intellectual disabilities. The University of Kansas Hospital is doing an outstanding job of just making the inclusion of people with disabilities in their workforce common.  Their Vice President for Hospitality Services wrote a blog and recorded a video for National Disability Employment Awareness Month.  Check it out – The Big Six for Employing People with Disabilities and consider sharing it broadly with others who need a good model to follow.

#21. This is my all-time favorite picture of Rachel taken by our dear friend Elizabeth Duncan.

This was Rachel’s first stage production at the Bartlett Performing Arts Center. She was six and portrayed a magical baby doll. She even had a speaking part, “Mama mama.”  I think it is a beautiful picture but more importantly it represents so much of who she is and who I am. To find out more, you’ll have to check out Auditions: Paralyzed by Fear! Personally, I think it’s a must.

My hope is that you look at these pictures (and maybe read a few blogs) and see the rich, joyful, beautiful life Rachel has lived. I hope you see the people who have lived better lives and are better people because of their experiences with Rachel. I hope you will feel moved to become friends with someone with Down syndrome or hire someone with Down syndrome or send a letter to an elected official to change a policy for people with Down syndrome.  I hope you see there is truly joy in the journey.

On her 21st birthday I said, “Rachel, you have truly made my life more beautiful.” She has.

*Author’s Note: We might have a few pictures of Rachel. I didn’t say these were my 21 favorites. I said 21 of my favorites.