Lori Tepastte, Grand Rapids

On February 9, 2016, I sat in the waiting room with my husband and our immediate family at a local hospital waiting for the arrival of my third grandchild. My daughter and son-in-law hadn’t found out the gender of the baby, so we were anxiously awaiting to hear the big news. Then it came. They were blessed with another little girl who they would name Natalie. My oldest granddaughter, Grace, was so excited! She had told all of us that she only wanted a sister. When I heard that I had another granddaughter, Grace and I held hands and danced around in circles. I was so happy for Grace. I was happy for our entire family. It is truly one of life’s greatest joys to welcome a new baby into the family.

The mood in the room quickly changed, though. My son-in-law said the doctor thought my newest granddaughter was born with Down syndrome. My heart stopped beating. I knew in an instant that I had to stay composed because Grace was right there. I had promised her that we would go to the hospital gift shop as soon as we knew the gender of the baby, so she could buy presents for her new baby sister. I was holding back tears and trying to keep it together. I wanted Grace to remember this day with joy.

I was terrified and numb. It’s the only way I can describe how I was feeling on that day. I knew almost nothing about Down syndrome, except for the cognitive impairment. Natalie was quickly taken to the NICU, as babies with Down syndrome usually are. She was placed on oxygen. Grace kept asking to see her new baby sister and we kept coming up with reasons why she couldn’t. The next five days moved so slowly. I was worried about my daughter and son-in-law and my two granddaughters. What would this Down syndrome diagnosis mean for all of them? How difficult would their lives be? I had so many questions swirling through my head and so much fear!

Three days later, my husband and I finally got to meet Natalie and hold her. We had to scrub our hands and arms up to our elbows and put on hospital gowns. My heart was pounding as I entered the NICU. What a scary place. It was quiet and still, and all you heard was the humming of machines keeping precious little preemies alive. Natalie was the biggest baby in the dark room and was hooked up to many wires. I held her in my arms and gently rocked her. Questions started swirling in my head again, but I told her we were going to love her and I was going to be the best grandma to her that I could be.

Natalie came home on oxygen. I had never seen such a little baby on oxygen before. I would stand at her crib and watch her sleep. I was drowning in fear. I wasn’t sleeping or eating. I was trying my best to process the fact that my newest granddaughter had Down syndrome. I had a lot of guilt because I was so fearful. I did a lot of praying. I kept asking God to give me faith and move forward. Several months went by. Natalie had so many doctor appointments and testing. I went to appointments and helped all I could. We had been told the day she was born that her heart was fine, but that would not prove to be true. Natalie had three holes in her heart. She had a great pediatric heart specialist. He kept a watchful eye on her heart.

My first answer from God came in the form of a sweet smile from Natalie. She looked me directly in the eyes and smiled at me as I was talking to her. I can’t explain it, but it felt as though we had made a special connection in that moment.

In the spring, my husband had to travel to North Carolina on business. My birthday was coming up and my husband thought it would be good for us to get away for a little trip to the beach. I still wasn’t sleeping very well and I had lost weight. I kept praying for God to show me everything was going to be okay.

We flew into Greensboro, North Carolina. We got our luggage and headed toward the rental car. As we started down the road I turned my phone back on. I had a new email from my daughter. Early that morning, my daughter’s roommate from college had watched a segment on a local North Carolina news channel about a coffee shop in Wilmington that hired people with cognitive impairments. Melissa had emailed my daughter to give her some encouragement. My daughter didn’t know where we were staying in North Carolina, but she thought it would be a meaningful experience for my husband and I to check it out. I googled the location of the coffee shop and, what do you know, it was only about 25 minutes from our condo! I called my daughter and she couldn’t believe it.

My husband and I drove to the coffee shop. There was a line out of the door. As we waited our turn, I began to feel apprehensive about what we were walking into. We approached the front counter and ordered two coffees. I explained to the manager that we had just flown in from Michigan and had a new granddaughter born with Down syndrome. I showed them pictures of Natalie and they congratulated me and said she was beautiful. Tears started running down my cheeks. No one had said those words to me when Natalie was born. Most people didn’t know what to say, so they said nothing. I asked about the owner. I wanted to meet her. She had two biological children born with Down syndrome and that was the reason why she opened the coffee shop. She wanted to provide a place where people with cognitive impairments could work. The manger said that unfortunately she didn’t work on that particular day, so we got our coffees and sat down and just observed how happy everyone was there.

As we sat, the owner pulled up in her car. I heard the manager say, “That’s strange. Amy never comes here on this day.”  The owner got out of her car with her arms full of white sleeves of coffee cups. She came in the front door and walked to the back of the shop. I could feel tears run down my cheeks again. I wanted to thank her for giving hope to people with cognitive impairments. I wanted to thank her for giving hope to families who loved someone with special needs. One of the ladies I had shown a picture of Natalie to when we ordered our coffees followed the owner to the backroom. I could hear her talking. She said there was a customer wanting to meet her. I heard her say, “She has a new granddaughter born with Down syndrome.” Amy Wright, the owner of Bitty and Beau’s Coffee Shop, walked out of the backroom and over to us. The first thing she said was, “Everything is going to be okay, I promise.” She asked to see a picture of Natalie and said she was beautiful. She showed me pictures of her children with Down syndrome, too. We talked for a while, we both had tears in our eyes, and as we parted we shared a warm hug. So many things fell into place on that day for me to end up in that little coffee shop in Wilmington, North Carolina. I had been asking God to calm my fear and he did in such a clear way.

That September, Natalie required open heart surgery. Our family traveled to Mott Children’s Hospital in Ann Arbor. The surgeon and staff were amazing and Natalie’s surgery went well. Today, Natalie is a loving little girl who is determined and empathetic. She always has hugs and kisses for me and loves you to read her books. She loves her big sister immensely and often sneaks into Grace’s room to play with her toys. She is starting to walk unattended and is so proud of herself.

As I have reflected on the birth of my granddaughter, I have come to believe that God gave me a new pair of glasses the day Natalie was born. Those new glasses have allowed me to see the world differently. I never would have seen the world in this new way without Natalie. I like to think that I am a better person because I am Natalie’s grandmother.

Chloe Peters, Forest Hills

I was always considered the princess of the family. Surrounded by two big brothers, habitually I was spoiled and always obtained what I wanted. Photographs of me splashed the walls of our house. The world revolved around my needs. I only realized I received the most attention from my parents when it was suddenly stolen from me in November of 2009. My family transitioned from a family of five to a family of six. The newest addition was yet another boy, so the princess label remained with me, but the label did not bring the attentive spotlight it always held.

My newest brother, Cale, was considered “different” to most people. At my age, I was unaware that most babies did not spend the first month of their life in the hospital. Lake me, Cale was given a label. However, his label was something I had never heard before: Down syndrome. I feared the word “different.” It was always attached to a negative connotation, but I quickly learned that I did not have to treat Cale any differently. Over time, the picture frames on the walls contained pictures of my little brother instead of me. I respected the change because in exchange I changed myself for the better. I learned to love others no matter if they are “different” or not.

Sometimes, even a princess needs to experience change. Change pushed me to experience and learn new things. Cale taught me to respect everyone. I learned life is not all about me. Cale opened my eyes to see that you get more out of life if you encourage and love others for who they are. Little did I know the affectionate eight-year old I know now would have the greatest impact on my life. I am thankful for losing my spotlight, for I learned far more watching the light sine upon my little brother.

 

Now in its 22nd year, the Step Up for Down Syndrome fundraiser and celebration has grown from only a handful of participants to the largest Down syndrome awareness event in Michigan. On Saturday, September 22nd, 1,255 walkers gathered at Fifth Third Ballpark to celebrate their loved ones with Down syndrome and support DSAWM. Together, our walkers, donors, and sponsors helped us hit a home run and raise $138,000 to fund the many programs and services that DSAWM offers our members.

Teamwork is an important part of Step Up and while we certainly all work towards the same goal, walkers are encouraged to create their own teams for some friendly fundraising competition. Leading up to the big day, incentives are offered to keep teams working towards the coveted title of Top Fundraising Team. This team receives special recognition on event day, will have their loved one with Down syndrome featured on a billboard, and takes home the Step Up trophy. DSAWM has seen some close races to the number one spot over the past few years and 2018 was no exception. After weeks bouncing between third and fourth place, Kynsee’s Krew submitted one last donation minutes before the competition closed, propelling themselves to the top of the leader board. Those familiar with Kynsee’s Krew know that this win was a big deal. Over the past few years, Kynsee’s parents Kevin and Kristi Wadkins have kicked their fundraising efforts into over-drive. We sat down to talk with Kevin about his team’s grassroots approach to fundraising and what Step Up means to his family.

When did you first participate in Step Up and why?

My family was registered to walk in 2012, but that year it was cancelled because of weather, so our first official walk was 2013. As new parents, my wife and I wanted to get involved with the DSAWM and learn how special our kiddos are. We had no idea what to expect as neither one of us had any family members with Down syndrome.

What did your first year of fundraising look like and how does that compare to this year of fundraising?

Our first couple years of fundraising were nothing compared to the past three years. The first few were basically just team registrants and a few donations from family and friends. The past three years, though, have been pretty busy. We finished in second place for fundraising in both 2016 and 2017. After that, I said I was after the number one spot. We started fundraising for this year’s event the evening of the 2017 walk. We always have a celebration after the walk and last year sold 50/50 tickets to kick-off our fundraising. I have been collecting returnables all year. We had a canvas painting party and Euchre party. We made planter boxes and birdhouses from old barnwood that was donated by friends of ours. Some of our other friends had a bake sale. We had a golf outing. The Ionia Farm Power Club donated money to us from their annual pie auction. We sold t-shirts. Friends had a family garage sale and donated a percentage of their sales to us. 2018 was very busy!

When and how did you start getting your community involved?

Over the past three years our community has been really supportive. We have had two local restaurants have Kynsee Krew fundraiser days where a percentage of their sales supports our team. Mostly it is just by word of mouth. We also have a lot of support from friends and family. Our friends get their friends involved and it turns into one big family.

Do you see a lot of familiar faces returning every year to support Kynsee’s Krew? What do you think keeps them coming back?

We do see a lot of returning supporters every year. They see how much their support means to our family and I think they see how hard we work to help support the DSAWM.

You finally won the Step Up trophy this year! What does that mean to your family?

It means so much to us. We have been so close the previous two years and we finally did it. All the hard work and dedication has finally paid off.

Most important question: Where will you display the trophy?
It is proudly displayed on a shelf at our house so everyone can see it.

What would you like new families joining the DSA to know about Step Up and the DSAWM community?

Step Up is a great way to help raise awareness and funding for the DSAWM community. To be involved and see how many people come out to support the DSAWM is amazing. There are so many different resources for new families through the DSAWM. It’s a great community to be involved and a great way to meet other families raising kids with Down syndrome. There is so much help and support from the organization and that is why we are so grateful to be a part of this great community.

Next year’s Step Up for Down Syndrome will be Saturday, September 21, 2019. We will be returning to Fifth Third Ballpark and look forward to turning it up to 11 with our theme “Rockin’ an Extra Chromosome!” We can’t wait to see you there.

Photos courtesy of Alyssa Eckel-Martin.