Three years ago, our son, Sutton, received a Family Hope Foundation scholarship to help offset the cost of occupational therapy. At that time, I explained to Family Hope Foundation that we were “Expecting an Extraordinary Life!” Sutton was born with Down syndrome and because of that, had multiple medical issues including severe hypotonia (muscle weakness). When we applied for the scholarship, Sutton was four. Though he had just started walking very short distances, he mainly crawled. He had been working hard on crawling for over two years. We had been working with an amazing occupational therapist since he was three months old who recognized Sutton’s profound hypotonia and was working a slow and special program with Sutton to help him learn to walk when his body and brain were ready…in Sutton’s time.
Sutton finally got the hang of walking. When he turned six and started kindergarten, he used walking as his main form of getting around. He wanted to keep up with his kindergarten friends! Sutton is now eight years old and in 2nd grade. As you might have guessed, we can’t keep up with him! In fact, we are constantly chasing after him. Sutton walked and ran and jumped and rode a bike…all in Sutton’s time.
Sutton is also an incredible reader and communicator. He is an animal fanatic and can tell you amazing facts about many animals. He just graduated from speech therapy at school. Sutton’s one-liners are the best. But nothing beats Sutton’s infectious smile and hilarious sense of humor.
When I think back to our first World Down Syndrome Day, it makes me smile. I was SO PROUD of my 6-month-old little boy and all he was accomplishing, reaching milestones in his time. He was the best snuggler and was so sweet and content. He would look deep into my eyes and give me the most amazing smiles. His communication was profound and deep. He filled our hearts with so much joy! To celebrate our little boy and World Down Syndrome Day, we threw a huge party. We invited way more people than our house could hold and loaded it up with food and drinks and laughter. We wanted to spread awareness and let every single person know how proud we were. It was a fun and special time.
When I think about how World Down Syndrome Day will be this year, I know it will be different. We are still so proud, but we have slowed down—partially due to the pandemic but mostly because of Sutton. He will want a quiet day with plenty of time to play. “I NEED to play, Mom!” is one of Sutton’s favorite lines. He would love to go to a zoo or see a movie about animals and then get a cheeseburger. We will read books, snuggle, and probably watch some Wild Kratts. We take things much more slowly and quietly these days because that is how Sutton likes it. Oh, and there will be chocolate doughnuts with sprinkles.
I love to be busy. I love to experience the world and everything it has to offer. To me, that means being on the go. I want to do all THE things and miss nothing. Last summer, Sutton was diagnosed with Autism. We have known since Sutton was a baby that he simply has to do things in his time. He cannot be rushed. He likes to stay home. He has an extremely hard time with transitions, so we avoid many transitions because, frankly, they are hard on all of us. Avoiding transitions means staying home a lot and moving slowly. We may play in the yard under a tree with stuffed animals instead of hiking or biking or exploring new cities or attractions. This is challenging for me. And it’s also something I probably needed in my life. Sutton has taught me to slow down. He teaches me this every…single…day. If we are walking to the car and we see a bunny, we don’t move until the bunny moves. If we see a bug or a flower, we watch or inspect for a few minutes, or more, instead of looking ahead and walking by. Sutton has taught me to look at every detail of the pictures in a book and enjoy. He has shown me a way to slow down and drink it all in. He has shown me how to get the most out of life, without constantly rushing and being busy.
Soon we will start the journey of ABA (Applied Behavior Analysis) to help Sutton (and our family) handle some of the things that make life tricky due to autism. Besides Sutton’s dual diagnosis of Down syndrome and autism, Sutton also has medical issues that require lots of doctor appointments and sometimes frequent and tedious hospital stays. He deals with therapies, blood draws, x-rays, doctor’s offices, breathing treatments, and so much more mostly with a joyful outlook. Sometimes I feel sad. The truth is, this is often not an easy journey. But what I have learned from Sutton makes it possible for me to do my best for him. Sutton works harder than anyone I know. He is joyful and loving and tries so hard. He is strong. He is a fighter. He is a true warrior. He makes people smile. He makes us all laugh. He knows how to live life and is teaching us how. On this World Down Syndrome Day, I am more proud and grateful than ever to be his momma. I feel lucky and blessed. I want the world to know that even with its challenges, our family motto still holds true: “We are still Expecting an Extraordinary Life!”