Tatertot Takes the World!

Writen by Katie Burwell

We received Tatum’s diagnosis of Down syndrome at birth. To say it was a shock would be an understatement, however we kept it together. I often said, “Don’t worry Michael (my husband) it will all work out, we got this!” She is our sweet third baby and we were over the moon that she was here- yet felt a looming gray cloud over our heads.

Tatum was taken away to the NICU pretty quickly after birth and the suspected diagnosis triggered a variety of tests: first was an echo with cardiology to ensure her heart was functioning as intended. We were told before the echo that if something did show, she would be careflighted to Cooks Children’s in Fort Worth. That was the first time we both broke down. What is supposed to be the happiest time in our lives had now turned into one of the scariest. Fortunately, Tatum’s heart was perfect aside from a small PFO and PDA.

Then came genetic testing via FISH. Did she have Down syndrome? There were soft markers that we and the nurses and doctors could see, but we weren’t certain. She had low muscle tone, a palmar crease, a sandal gap in between her toes, almond-shaped eyes with a flattened bridge across her nose. All features that we LOVE. If she did in fact have Down syndrome: was it Mosaic, was it Trisomy 21 or was it Translocation? Michael and I sat and waited. A few days later, that genetic testing came back with a confirmed Trisomy 21 diagnosis. Next was the LONGEST 21 days of our lives: our stay in the NICU was due to pulmonary hypertension. This time allowed us to process the diagnosis, lean into our community (family, friends, neighbors) and begin our outreach/research. The amount of amazing messages, big congratulations, food to feed an army, as well as gifts and gift cards let us know how much we are loved and so very supported!

I’d be lying if I told you those days were filled with pure joy and excitement as we brought another beautiful baby into this world. It was filled with grief (from the life we thought we would have), tears for what our future would hold, anxiety over her health and what the road might look like for us, as well as fear for what others may say or think. However, the more research we did- the more connected we became and found amazing resources thanks to the internet and social media!

We were picked to be Tatum’s parents/Tatum’s family and we are forever grateful for that gift.  What else was there to do; other than grabbing our boots by the straps, wiping our tears and it was decided right there, WE would write our own journey. We wanted to share our story early on and created a space where we could provide our friends and family with updates on Tatum as well as her milestones, challenges, and all things really! Our hope is to continue to create awareness and advocacy for all people with Down syndrome. There is/was a stigma around a Down syndrome Diagnosis and we are here to CHANGE that. When we tell people about our beautiful girl and her diagnosis, they often say "Oh", or "Awe, how is she doing?" If we can show others just how amazing and worthy she is, then we have moved the needle.

Please follow along as we continue to move mountains: @tatertottakestheworld!

Today- Tatum is 21 months and is the joy of our lives. She LIGHTS up the room and people are drawn to her. She has taught us patience, resiliency, to live in the present, and most of all not to take things for granted! Her smile, her giggle, her remarkable way of accomplishing things on her own timeline are what we love the most. She continues to amaze us, and we love her BIG.

We do have some work to do, to help Tatum build strength in several areas. She participates in Early Childhood Intervention (ECI) Physical Therapy- 3 times a month, Occupational Therapy- 3 times a month, Speech Therapy- once a week and Feeding Therapy- once a week as well as Private PT and OT. We also have routine follow-ups with cardiology, ophthalmology, genetics as well as our pediatrician!

If you got this far, thank you so very much for reading our story and for following along!

Katie Burwell is a busy working mom of 3 and an avid Down syndrome Advocate! Receiving an at birth diagnosis she hopes to share her experience and welcome others into the Lucky Few community! She is passionate about building relationships and creating brand awareness personally and professionally. Katie understands the importance of sharing content and being a thought leader, which helps build trust in the communities she serves. She created an Instagram page dedicated to her daughter Tatum and their Down syndrome journey. She is passionate about giving back and serves as the Community Service Outreach Coordinator with FIT4MOM Denton County and participates in giving back initiatives with her local business unit at Perficient. To add to the list above Katie also volunteers her time as part of the Grant Writing team with DSDN, partakes in peer-to-peer fundraising for DSDN, and volunteers with Jack’s Basket as a Basket Delivery Parent.

You can follow Tatum's journey on Instagram here.