By Dawn Graczyk, Sunshine Mom
Orlando is a dream for my girls. They love the rides and the excitement. They are pulled in by the smell of hot popcorn and overpriced theme park ice cream. Anneliese is enamored with the adrenaline of roller coasters. It has always been Marissa’s ultimate happy place.
For me, not so much.
Sometimes Love Looks Like Going
As an individual with dysautonomia, I find some things absolutely painful, though I would like to enjoy them. These include heat, crowds, smells, and bright light. Heat and time spent on my feet quite often leads to fainting. So it stands to reason that I am not an Orlando theme park kind of girl.
But when we love someone, we find ourselves doing things and going places we wouldn’t normally do.
A Reunion that Healed the Heart
So we went. A friend loaned us her timeshare for 10 days. Neither I nor my friends remembered Memorial Day was the last weekend of the month (oops). We had not planned for a lift of mask mandates and a return to “normal” (oops again). We had anticipated heat, but not the greatest heat wave to hit Orlando in 10 years (oh for the love of Pete!).
In the first moments at Disney, it was apparent that this trip would not be like previous trips. The heat was more difficult for Marissa to tolerate. She was unable to stand to see exhibits or pose for pictures. The majority of rides required me to lift her in and out and it was embarrassing for her. It showed all of us how much has been lost so quickly.
After a rest day, we were reunited with old friends who took us to SeaWorld. It was absolutely uncanny how well our kids got along. When we met I told her, “My kids are a little wild and have very little impulse control.”
She smiled and told me, “Don’t worry about it. My kids are the same way.” AND THEY WERE!
This was one of the best days of the trip. On this day, we fit in. I didn’t worry about what others thought. I wasn’t alone when the wheelchair needed pushing. I wasn’t the only mom whose child was making poop jokes far too loudly at the restaurant table.
This day was a gift and reminder that God cares. The connections the girls and I made and the kindness this family showed us gave us a sense of home.
Belly Laughs and Twinkling Eyes
Near the end of our Orlando visit, Marissa asked, “So, can Heather come back with her kids? I’d like to see them, again.”
I too was eager to see our friends one more time. Our joint crew laughed at silly TV shows; told poop jokes; and splashed in the pond. Marissa’s face was alight with pure joy and contentment. This was the way I wanted to remember her always: twinkling eyes, ; belly laughs, and happy dimples. It has been so long since we have been surrounded by friends. Saying goodbye was terribly hard.
After they left, exhaustion and emotion flooded Marissa’s face. Her eyes began to droop. I encouraged her to get ready for bed early.
“Mom, I don’t want to go back to Missouri! Why can’t we live here?” she said.
For the first time in years Marissa and Anneliese were fully and immediately accepted as they are, with no judgement or strings attached. They were free to laugh when they felt like laughing and sit quietly in one another’s company as well. No one looked at Marissa as less than. No one raised eyebrows when Anneliese’s humor was somewhat inappropriate or crazy.
Love is Felt Through Relationships
We all need this. We get busy and wrapped up in “doing for” but forget about “being with.” It is wonderful to take someone a meal or send a gift card. Love is most deeply felt when someone slows enough to sit with, speak with and be with another person. Love is felt through relationships.
Many of us are missing relationships with others, but I believe this is most crucially missed among families with medically complex children. We are necessarily enmeshed in our own world, not out of selfishness, but because our life demands it.
At the end of the day, we do not have the energy to do much more than put on pajamas and make an attempt to feed the kids. We want friends. We want someone to sit with us without trying to fix anything. Just sit. Drink coffee. Laugh with us and treat us like a friend. Be a friend.
People often tell me, “Anytime you need anything, give me a call.” Perhaps this is a genuine offer, but more often than not, it falls short. When the call is placed, when I need childcare so I can take another child to the doctor, often no one will help.
When I say, “You can come over and have coffee. I’d love to have coffee.” I am most often met with a response like, “We are so busy. But maybe I can drop by with a meal on our way to our activity.”
We Can Do Great Things with the Help of Others
I wish I could have captured the joy on my children’s faces fully to appeal to the world that relationships are the greatest need for us all. We can survive so much if we just know we are loved.
We can do great and impossible things with the help of others. I appeal to you, allow people into your life. Be authentic. Be you. Enter into the lives of others without judgement or expectation. This is love. Love can change a life. Maybe it can change the world.
Click to learn more about Riding on Sunshine.