Step Up for Down Syndrome

Prior to getting the genetic test results regarding Baker and his Down syndrome diagnosis, Justin and I had met with the director of the Down Syndrome Guild of Kansas City. Amy was kind enough to give us a "welcome basket" full of literature and pamphlets related to Down syndrome along with a few new outfits for our boy. She was calm and reassuring and knowledgeable and answered all of our silly questions. Questions like, what is the correct terminology to use when talking about Down syndrome? How do I reference the diagnosis without sounding derogatory towards Baker or insensitive to others? What is the best way to educate others about Down syndrome, especially while we're still learning ourselves?

Most importantly, how do I make sure this diagnosis doesn't define Baker and show people it's merely something he was born with, not something that he IS?

Amy and DSG had those answers (I'll try to compile them into a separate blog post some day soon!) and pointed to some of the books she included in the welcome basket as a reference point. She also made an effort to reiterate that the most important items in that basket were the diapers and the wipes because in the end, we were welcoming a new baby into our family. He's a baby who happens to have Down syndrome but still, a baby like any other baby. He'll need us to feed him and love him and change his diapers.

The day we heard about Baker's 90% chance of being born with Down syndrome was a hard one. I'll never forget listening to the genetic counselor go over the test results and kind of going numb as I tried to process what I was hearing. After a few good cries, I dug out the basket and started reading some of the material. Justin and I both joined local support groups on Facebook and started learning all we could about Down syndrome and ways we could get involved in the community since it was now going to be such an important part of our lives.

Processing the news and going through those emotions left a huge impact on me and diagnosis or not, I knew I wanted to give back to the Down Syndrome Guild of Kansas City to thank them for their support those first few weeks. Now that Baker is here, the families in the Ds community continue to be a huge point of reference for us and knowing that we have them as resources has made a huge difference in the way we've "dealt" with Baker's diagnosis.

We're so excited to participate in the Step Up for Down Syndrome walk & festival on September 24th as a way to celebrate Baker's life and give back to this wonderful organization that helps hundreds of families just like ours. We want to invite family and friends (local to KC or not!) to join our team and/or donate to support DSG. The family-friendly event includes food, games and activities and a 1-mile walk around Arrowhead Stadium.

Click here if you want to join Baker's team (#TeamHeartBaker)! Registration fee includes a team t-shirt, food and access to all of the activities happening during the event. If you're unable to attend the walk but feel inclined to donate to the cause, click here to donate to Baker's team.

Lastly, thank you to our own family and friends (and blog readers!!) for supporting our family during this time and loving on our sweet boy. While we were surprised and initially feeling defeated when we heard about his heart defect and the potential challenges he'll face because of his Down syndrome diagnosis, we're quickly realizing that hard is not the same thing as bad.

This boy was meant to change lives and at three weeks old, he's proving to do just that. We're so excited to watch him grow and tear down stereotypes along the way. He's strong and brave and I am so, so proud to be his mother.