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.