From a Flop Summer to a Fantastic One

The official summer season is coming to an end soon, and I hate to see it go.

Our summer was pretty great this year. We made so many good memories. Some summers are just a flop for us because of medical issues with my daughter but not this year. Here's a sample of what we did.

Since my husband was working in Oklahoma part of the summer, the kids and I met him in Branson for a long weekend. We had fun swimming, watching Dolly's Stampede, playing miniature golf, and doing the normal touristy things. Here we are on a Ferris wheel.

Over summer break, Jaycee competed in our state's Special Olympics for the softball throw. It was a miserably hot time with head indexes in the triple digits. Still, it was great seeing her compete. Last year, she qualified for the state games, but she came down with a respiratory infection a few days before the games. We weren't able to go, and it was disappointing. I'm so glad she was able to compete this year. I love seeing her get to do something that showcases her abilities. Gold medal!

We made the long trip out west to see my husband in Oklahoma a few weeks later. We swam at the campground, went bowling, and explored the area. We were really happy when daddy came home later in the summer. We captured this moment near some buffalo in Oklahoma.

We went camping at a local recreational hot spot for a weekend. We played on a beach, sat outside briefly (really hot summer), and walked trails.

We had lots of easy going days at home too.

I'm sorry to bore you with a list of things we did and vacation photos, but the fact that all of it happened is really nice and really rare.

Last year, the summer was completely different. Jaycee had a respiratory infection that didn't hospitalize her, but it did take some time out of our summer and canceled our Special Olympics plans. She had a surgery at the end of June and recovered from it all the way until August. Most of the kids' summer break revolved around hospitals, medicines, and precautions last year. We felt like we did nothing fun even though we did work a few fun things in during our trips to the hospital for follow up appointments.

There have been other summers that weren't so great either. In 2015, Jaycee got sick in June. She ended up on a ventilator in ICU. That illness was severe and took some recovery time at home for several weeks as she regained her strength. Our vacation plans were canceled. We settled for simple outings at home when she was fully recovered.

We have had other summers that have revolved around surgeries or illnesses or a slew of appointments. They dictate what we do and when we do it. I try to maintain positive attitudes because my daughter being alive is the most important thing, but it's a bummer when plans have to be adjusted or we're locked away in our house in isolation while she recovers. That's why it is so nice when everything works out like it did this year.

So as I reflect back on our summer, I'm thankful. I appreciate the simple things, like making plans and keeping them because she was well. I appreciate the fact that we had freedom to do things we wanted to do and not things we settled on doing because of health issues. The hard times make you appreciate the good ones. I just hope next summer can be this good!

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.

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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. 

What Special Olympics Did For This Mom

I can make you a list of special achievements that many children receive but Jaycee won't.

-School honor roll award: Nope
-Perfect attendance award: Not even close!
-Our school's Accelerated Reading Points Club: No-not sure if she even got 1 single point last year.
-Making a team that requires a try-out: I'm going to say no.

As proud parents post pictures on Facebook and rightfully receive accolades, I sit with my medically involved, developmental delayed, minimally verbal, foot brace wearing daughter. It's ok. She does what she can do. And we still find things to celebrate like going six months with no hospital admissions or when a letter in her name is written sort of legibly.

But then came Special Olympics and we had a new reason to celebrate.

Jaycee competed in Special Olympics for the first time last year. I enjoyed seeing her on a team, making the lap around the track for opening ceremonies, and seeing her compete. Jaycee's reaction of fear and crying when the gun shot at the start of her first race is something I'll never forget.

Even if she didn't win, it was a really neat for our family! Jaycee was an athlete. It was still nice to see her compete, get a ribbon, and have a new experience. Special Olympics gave her something she couldn't get anywhere else, especially in our rural area.

This year, Jaycee did well throwing the softball at the regional meet qualifying her for the state meet. We jumped at the opportunity to take her to the state competition.

I thought we would just go, watch Jaycee throw a softball for a few minutes, and make the long drive home. But, the state competition made me feel closer to Jaycee in a way I didn't expect.

I don't look like it now, but I was a runner in high school. I wasn't the best and greatest but I was average. I won a few races and qualified for the state track competition more than one time individually and on a relay team. When I went to the state competition, I knew I was going to lose. I wasn't running any times close to those extremely fast mile times. I knew and my parents knew we were pretty much going to the meet just for the experience of it all. Now, I was going to a state meet again this time as a parent.

Arriving at the state competition with Jaycee, one of the first things we did was get in the souvenir line. Jaycee picked out a pink shirt which we had her name and "track and field" printed on the back. Watching that shirt being printed, I was touched knowing my parents did that with me years ago. Here I was having a similar experience I thought I would never have with my child when I heard the words "Down syndrome" years ago.

The next day, we all put on our t-shirts supporting Jaycee and the Purple Miracles. I was a proud mom of an athlete. Anticipation grew as Jaycee was under the tent checked in and waiting for her turn. Jaycee waved at us and smiled. I found myself nervous for her. We positioned ourselves for the best viewing as she took the field. Jaycee threw as hard as she could. She did her best. And I was proud as she received her fourth place ribbon. She was proud too.

I was surprised at the emotions I felt seeing Jaycee compete and receive an award. I wanted to scream, "That's my daughter! She's awesome!" But I didn't. That would have been really weird. But, I did shed a few happy tears watching Jaycee succeed.

I felt a special connection to Jaycee that weekend. She was a state competitor just like her momma.

Special Author's Note:  I want to give credit where credit is due. Jaycee's teacher, Jennifer Tolley, initiated the Special Olympics program to our school just a couple of years ago. She took on added responsibilities when she volunteered to do this. Without Mrs. Tolley and her helpers, none of this would be possible for Jaycee and the other children on her team.



Jaycee with Mrs. Tolley and helper Amy Anselment