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.

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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. 

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!