I have to focus on being present while on vacation because part of my heart is back at home. I have to remind myself that the guilt I feel at leaving Nani behind is not warranted. It’s false, and it distracts me from seeing what is true.
Truth is I’ll be a better mom when I get back. Truth is Frank and I want and need to spend time with our other daughters without constant interruptions. We need time with each other. We need a physical and emotional break from care taking. The truth is Nani will be happy at home, she would prefer home.
But I feel her absence. I miss the other sister.
Reality is I’m privileged to get a reprieve from the care. Privileged to vacation in a beautiful spot. Privileged to have good round the clock care for Nani. Privileged to have a marriage that made it through raising a child with disabilities. Privileged to have grown daughters want to spend time with us. Please don’t think for a moment I feel I have earned it or deserve it. I have not and do not. If it worked that way-this beach would be overrun by families whose situation is SO MUCH MORE difficult than mine.
Nani loved vacations as a child. Some days Frank and I secretly voted her best kiddo to take along because she LOVED riding in the car. Happy as a lark as long as that car was moving. Never asked “are we there yet?”. However, when the car wasn’t moving we had a much different scenario.
To say it was not easy is a crazy understatement. It can be grueling to provide that level of care in an environment with a lot of unpredictable variables, especially when the person you’re caring for may have very unpredictable responses to those variables. In hindsight, I don’t know how we did it. But we did, and I’m so glad, so very grateful. There were so many things we couldn’t give her, but God gave us the grace to give her some great vacations.
She camped all over Texas and beyond. She saw the Grand Canyon, the Grand Tetons, Yellowstone, marvelous aquariums, the beautiful beaches of Destin, the mountains of New Mexico and Colorado, the Blue Ridge mountains in North Carolina, enjoyed beignets in New Orleans. She swam in the crystal clear waters of Balmorrhea, tubed on the Frio, bobbed in the ocean for hours on end, rode roller coasters at Six Flags, signed “more” and rode it again. But as Nani went through adolescence she made it clear that being away from home was stressful for her, and she needed us to hear her on that.
Part of my memory from each trip is a mosaic of seeing Nani’s reaction to all the new experiences, and people’s reaction to Nani, good, bad and funny. Trust me when I say we did not travel unnoticed.
One particularly sweet memory happened on our first trip to New Orléans enroute to Destin. We spent the morning exploring Jackson Square. One of the street performers was a mime making balloon animals. Ashley and Meghan each took a dollar and stood in the big crowd of children around the mime, while Frank and I waited with Nani on a bench nearby. As their turn came, the mime made each of them a balloon, then his eyes began slowly searching the square. After a moment he extracted himself from the crowd of children, and made his way over to Nani. With a little bow he presented her with a balloon animal, and breaking his silence said, “no charge, my honor” and walked away to continue filling balloon requests.
Twenty plus years later it is still a memory I treasure. The day a stranger saw past Nani’s disabilities to the child beyond, just another sister who would love a balloon animal.
It was also a lesson in objectifying I try not to forget. You see we made the (dumb) decision to not get Nani a balloon animal because she would be unhappy when it popped. We objectified Nani when we based our decision on the fallout for us, rather than what was important to her. We looked at the disability, not the child.
That balloon animal was a priceless gift to us all.
Nani was delighted with her balloon. Her sisters were overjoyed at the special attention Nani received.
Frank and I were delighted to have someone really see all of our little girls, and help us see all of them, too.
For a short while on a hot August day we were just another family on vacation in Jackson Square.