World Down Syndrome Day (WDSD) is on the 21st day of the 3rd month every year. This date signifies the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down Syndrome. This year, WDSD, is putting a special emphasis on inclusion. Their hope is that “together we can empower people around the world to advocate for full inclusion in society for people with Down syndrome and for everyone.”
In honor of World Down Syndrome Day, we asked Cavender’s store manager Brian Crabb and his wife Leslie to share her story about their youngest son Tate.
Read more from our conversation with Tate’s Rockin’ Mom, Leslie Crabb:
Cavender’s: What was your initial reaction when you were given Tate’s diagnosis?
Leslie: We found out at 34 weeks that Tate had a possible condition known as duodenal atresia. Basically, he could have a blockage in his intestine that would require surgery. We were also told this condition was a soft marker for other genetic disorders. They scheduled an appointment for us to see a maternal fetal medicine specialist the following week. For the next seven days, Brian and I were a nervous wreck thinking about all the different possibilities, worried about medical conditions, and other potential disorders. Most of the week was spent praying that whatever news we received, God would bless our baby with good health. No matter what the diagnosis, we prayed for peace and understanding in God’s plan.
When we got to our appointment, we were beyond anxious. We had a 4D ultrasound scheduled, something we had not done with our three older children. During the ultrasound we got to see our precious baby boy’s face for the first time. Both of us were looking super hard to see if we could find any markers that might tell us of genetic disorders. The doctor continued to scan the ultrasound, taking measurements of arms and legs, and taking still shots of his precious little face. He finished up the ultrasound and had to leave the room for a minute. We both looked at each other, looking for comfort in each other’s faces. I remember Brian sitting next to me trying his best to keep my spirits up and encouraging me to trust in God’s plan.
We held each other’s hands as the doctor came back into the room, we distinctly remember him saying, “I want to start off by saying, your baby boy is beautiful and precious, but…”. For the next few minutes, time stood still. I was holding my breath and could feel my heart beating out of my chest. The doctor continued, “But he does have a blocked intestine, and he does have several markers for Down Syndrome.” Brian wrapped his arms around me as I felt myself falling apart. I was lost and had tears pouring down my face. Thoughts raced through my mind: “What kind of medical conditions will he face? What is he going to look like? How smart will he be? How will I handle all of this? Did I do something to cause it?
With the confirmation of the duodenal atresia, our hearts sank even further knowing our baby would have to undergo surgery soon after he was delivered. The news seemed unbearable. We spent another 20 minutes in the office trying to gather emotions and drying our tears. As an expecting parent, you have a dream of what your baby might look like, or what he might grow up to be. In that instance, all those visions and dreams changed. When we got into the car, we both agreed we weren’t ready to go home and face our families, much less share the news with our other kids. Brian looked over at me and said that our church was just 2 miles down the road. “If anybody could tell us where to go from here, it’s our pastor.” So, a few minutes later, we were in our pastor’s office, sharing our fresh news with him. Something was different about his reaction, one that I wasn’t expecting. With a big smile on his face, he started talking to us about his 3-year-old Goddaughter. He shared what a joy she was and how much she had blessed his life. He spoke God’s word and assured us that Tate was a part of God’s perfect plan and that Tate was being given to us for a very special perfect reason.
A few days later, we sat down with Haleigh, our oldest daughter and told her about Tate. She cried and was very confused but was also mostly concerned about the surgery and medical problems Tate might face. After we answered her questions, she went upstairs for about 30 minutes. She returned with a song she had written for Tate. Our hearts were so full over the love she already had for her little brother. The innocence of sibling love is precious.
Cavender’s: How has Tate changed you and your family?
Leslie: Growing up I didn’t know anyone with Down Syndrome, but I never knew what I was missing. Tate has allowed us to see incredible joy and happiness in everyday life. He has taught us to see the beauty in things that may not be mainstream “normal”. He has brought so many wonderful people in our lives within the Down Syndrome community – friends that we will have for life.
When Tate was born, we spent 6 weeks in the hospital. Tate’s first surgery was when he was 1 day old and his second emergency surgery was when he was 3 days old. There were moments we didn’t know if Tate was going to survive. I believe God uses those hard times to bring us closer to Him. We learned that we must trust in God and His timing. We think we know what’s best for our life until God shows us that He has a better way. Most of all it has brought us closer together as a family and strengthened our faith in our creator.
Cavender’s: What words would you use to describe Tate and what are some of his favorite things to do?
Leslie: Tate has a pure heart and is full of happiness. He can be the center of attention in every room he enters. He waves at everybody he sees and will keep waving until he gets a wave back! He has the most infectious smile I have ever seen. He is a determined little guy. Don’t doubt that he has spells when he throws fits, just like our other kids. But he can turn tears into laughter faster than anyone! Tate has that extra sparkle in his eye that just makes everything better. After a bad day, spending a few minutes with Tate can take your stress away. He loves other kids and thinks he can run and keep up with the big ones. He loves wrestling with his big brother and hugs his sisters with all his little might. He loves being outside, sliding, irritating the dog and basically getting into everything– all while wearing his brother’s old cowboy hat. Tate is never without a ball cap or cowboy hat. Like most kids, he loves a cell phone, but not for YouTube or videos. He loves turning the phone camera on and looking at everything through the phone. You can imagine the videos and selfies I have on my phone from him. He is a bright light in our world, and HE IS WORTHY-worthy of love and will do big things in life.
Cavender’s: Can you tell us about the Down Syndrome community and how it has become such a big part of your life?
Leslie: The Down Syndrome community is seriously a sisterhood I never knew I needed. I am so blessed to be a part of it. Our “Rockin’ Mom” group has mommas from all over the world who come together to provide support and love. When we were in the hospital, we received care baskets full of goodies and helpful literature. Being able to learn of other families’ stories was very helpful. They shared about their struggles, medical victories, uplifting personal successes, and reassured us that we were not alone on this journey. I have made strong friendships through this community. One beautiful family we have been blessed to know is Lindsey and Jason Law. Their 19-month-old daughter, Josie has Down Syndrome. We joke all the time that her and Tate will be dating one day, they have the cutest little bond. I recommend connecting with other families who have children with Down Syndrome. It eased a lot of my fears in Tate’s early days when I could see older down syndrome kids thriving. Now that Tate is getting a little bit older, we have provided that shoulder for new parents to lean on. Tate is now an example of what their newborns can grow up to be. The DSDN network and DSPNT provide such support by connecting families from the in early years of the journey all the way to teen dances and college scholarships.
Cavender’s: What would you tell other families who have been given the Trisomy 21 diagnosis?
Leslie: This question personally hits a soft spot for me. From one mom to another, I would say it’s ok to grieve, to blame yourself, and to feel sad. There is a poem by Emily Perl Kingsley called “Welcome to Holland” that I would encourage all new mommas to read. It helped me to be ok with the “process” of mourning the pregnancy and child you thought you were going to have. I wouldn’t be where I am today without my husband being my rock, without my family telling me “it’s just a little more Tate to love,” and without my friends that never once said “I am sorry,” when I told them about Tate’s diagnosis. I cannot say enough about the group of Rockin’ Moms, most of whom I’ve never met face-to-face, who supported me even with my random questions at 2am.
The best advice I can give is breathe through it, but don’t lose sight of the big picture. I had those fears, concerns, and tears when I was pregnant and even when Tate was very young, but I want all new parents to know those fears and tears are soon replaced with nothing but smiles and pride. Even though he is only two, I know that Tate is the perfect thing that could’ve happened to our family. I am beyond proud to be a mom of a Down Syndrome child. I truly feel a part of “The Lucky Few!”
Cavender’s: What do you hope for Tate’s future?
Leslie: Tate is no different than our other three kids when I answer this question. We want happiness; we want him to find something he is passionate about and will thrive doing it. Because of him, we are now more aware of the Down Syndrome community. This past year at the Ft Worth Stock Show and Rodeo there was a young lady with Down Syndrome who had her own booth at the exhibit hall. She was rocking it, she made and sold flip flops and ran her business on her own. Two years ago, at the San Antonio Livestock Show the champion market pig was exhibited by a young lady with Down Syndrome. There is a young man in our hometown who has a very successful snow cone business. These stories are endless and that is where we find our hope in Tate’s future – a future without limitations.
Cavender’s: What organizations do you recommend or suggest for support for families?
Leslie: Down Syndrome Diagnosis Network (DSDN) is by far the first and foremost I would recommend. They offer so many resources to families that are just beginning their journey through support and national and local connections. Down Syndrome Partnership of North Texas (DSPNT) provides educational activities, helps with inclusion in the community, awareness, advocacy and outreach. National Down Syndrome Society (NDSS) provides individual with Down Syndrome, their families and the public with information, resources and support. One huge supporter of NDSS is the Blake Pyron Entrepreneur Scholarship, which gives a scholarship to people with Down Syndrome wanting to open a business.
We at Cavender’s celebrate World Down Syndrome Day with the Crabb family and we thank Leslie, Tate’s Rockin’ Mom, for sharing their journey.
Cavender’s will be accepting donations in support of World Down Syndrome Day March 21 – March 27, 2022. 100% of in-store donations will benefit the Down Syndrome Diagnosis Network. If you would like to make a donation online, you can donate here.