Scarlett’s Story

Site created on October 30, 2016

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Newest Update

Journal entry by Laura Yost

Scarlett is nearly 22 months old.  I am so overwhelmed.  I am not overwhelmed by her multiple therapies each week.  I am not overwhelmed with the fact that she is followed by 3 different doctors on a regular basis.  Some of her friends see even more specialists.  I am slightly overwhelmed at the thought of preschool.  But I have some amazing friends and educators that will help me navigate Scarlett’s schooling.  I am overwhelmed in the amount of love and support she and our family have received since her birth.  

When your child has a disability, a lot of relationships are put to a test.  I have to ask my friends and family for a lot.  Scarlett has an appointment, will you pick my child up from school?  Scarlett has an early appointment, can my child ride with you to school?  Will you ask your friend about public preschool?  Do you think our private preschool will let Scarlett go to school there? Will you pray for Scarlett because she has labored breathing and needs to go to the hospital?  We think if Scarlett gets ear tubes she will be able to hear better, will you pray for her? And the list goes on.  One thing I asked recently was for people to donate or attend the DSACK (Down Syndrome Association of Central Kentucky) gala.  

This year was DSACK’s second gala.  I attended the gala last year and this year I was also on the planning committee.  Along with the other committee members, I asked friends, family and strangers for donations to be auctioned.  I also invited many of them to attend the gala. Our village, Scarlett’s Village, pulled through.  We received many donations and had a big presence at the gala.  I just wonder how I ended up with so many wonderful people in my life!  These people that love Scarlett the way she was made.  They want to support her and our DSACK family.  My heart is so full and so warm. Thank you friends and family for your unconditional unwavering love and support.

Then at the gala are all these strangers.  People I have never met.  Some have a loved one with Down syndrome.  Others were there to support DSACK because of a more distant relationship with the organization.  Some work in our local schools, hospitals and therapy offices.  Others were invited by a friend.  Wow!  Thank you strangers.  Thank you for supporting my daughter!  Thank you strangers, family and friends for helping supply me with books in the hospital so I could learn about Down syndrome when Scarlett was born.  Thank you for helping provide a place for our kids to get together to play and learn sign language.  Thank you for providing the older kids with camps, programs, and job preparation programs.  Thank you for allowing DSACK to have the ability to reach out to our community so the world no longer has So Much Yellow.

So Much Yellow was talked about during the gala.  So Much Yellow is a video online that showed what it was like to have a sibling with Down syndrome in the past.  Spoiler alert, you dropped your sibling off at an institution.  Can you imagine?  The director of DSACK explained that the parents were not bad.  They simply did what society said they should do.  Thankfully we do not live at that time in history.  Our society has evolved.  But what if we continue to evolve?  What are the possibilities?  What if Scarlett is told she can do anything in life?  What if we give her the assistance she needs to accomplish her goals? What if society accepts her?  What if she is just another friend on the playground instead of “the girl with Down syndrome?”  What if her diversity is celebrated like we celebrate the students’ nationalities at our elementary school?  What if instead of saying what she can’t do, we find a way for her to do everything?  What if we replaced So Much Yellow with....a Rainbow?  All abilities are accepted.  Instead of looking at what everyone struggles with, we look at their strengths.  When others struggle, we help them.  Instead of the kids being segregated, the boy in a wheelchair shows off his wheelies to his able-body friends.  Instead of the wheelchair being scary or different, it is really cool because it helps their friend.  Instead of the hearing aids being weird they are something scientists made to help their friend.  The world would be so boring if we were all the same.  But how do we teach society that people with Down syndrome are as valuable to our society as people without Down syndrome?  How do we make Iceland realize that they are not eradicating Down syndrome, they are simply killing babies with and without the extra chromosome?

I do not know.  I was so uneducated about Down syndrome before Scarlett’s birth, I would have understood not wanting a child with that horrible anomaly.  What I did not know was that it is not horrible!   My daughter is not bad or scary.  She is beautiful, fun, smart, funny, happy and hardworking.  She is loved 100% by every member of our family.  She has made our lives better.  

I am so thankful for this journey.  I am thankful for the friends and family that are along for the ride.  I am thankful for the doctors, therapists, and future teachers that see Scarlett’s value and purpose.  I am thankful for those before us that have fought to make society change and accept my daughter.  I am thankful for the individuals with Down syndrome who work hard and have big goals.  I am thankful for associations like DSACK that celebrate, support and educate those with Down syndrome and their families.  I am thankful for everyone who supports DSACK with their time, energy, and money.  Because of your support we are not alone, we are not afraid, and we see rainbows instead of yellow!

I wrote this to update friends and family on our journey.  Also to thank those who have positive influences on our lives.  If you feel inclined to donate do not do it through caringbridge.  Please join or donate to Scarlett’s walk team.  All the money will go to DSACK if you use this link

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