The term “empty nester” often doesn’t apply to parents of a child with disabilities. Most kids leave home sometime in their twenties, and it’s a safe bet that by their thirties, they’ll be outta there.
Unless they can’t fly. Unless they are totally dependent, like a nestling, on their parents for food and protection. That’s my child. And that’s Greg, Billy, Kim, Tim, Robbie, Brendan, Sarah, Tony, Lena, Jason, Ashley, Matt, Danny, Kyle, Luke, and perhaps your child too.
Not achieving empty nester status has its ups and downs.
Our nestling is always excited to see us, thinks we’re cool, and is easy to love. She’s generous with hugs, kisses, snuggles, and giggles. We have peace of mind knowing that she gets the best of care in our home. And Santa Claus still comes to our house every Christmas!
I’m wishing for Santa to drop a retirement plan down the chimney one of these years. I wonder what the crystal ball holds for us, and for her. For the moment, we sigh and keep the faith that everything will work out.
Day by day, our life is confining in ways most people never think about. And most parents whose kids are totally dependent never talk about.
When your children are small, you can’t go anywhere without them unless you get a babysitter. We’ve never gotten past this phase. For more than 30 years, we haven’t left our child without lining up a caregiver or sitter. It used to be easier when siblings lived at home, but they’ve flown on.
Wherever she goes, somebody, usually Daddy, chauffeurs her. She’s come to calling him “My Driver.” Sometimes we joke that it’s her turn to be our designated driver. “No, I can’t,” she snaps. “I don’t have my license yet. I’m still working on it!”
When friends call to invite us out, we say, “Sure, sounds like fun.” Then we look at each other and think, “Who can watch Noni?” Some friends have become accustomed to our bringing her along. Bless them.
Taking a long weekend or a short vacation, just the two of us, is an exhaustive undertaking. Arrangements for her caregiving are elaborate and expensive, with pages of detail for each day. Spur of the moment is out of the question for us.
We recently scored some cheap airline tickets to Florida and decided to take her with us, just to avoid the hassle and cost of leaving her home. She’s become a good traveling companion, and we enjoy exposing her to new experiences, but we won’t have a single night out by ourselves. Hey, after she goes to bed, maybe we’ll uncork a nice bottle of red wine.
In the morning, we’ll be back to our daily routine – making her breakfast, brushing her teeth, dressing her, fixing her hair, tying her shoes – but instead of going to work, we’ll be heading to the beach, feeling lucky.
Because this is our life.
Cynthia Vrsansky Schulz is a highly successful communications exec with 35 years of leading and practicing communications. She also is a parent of a child with disabilities. You can follow her special needs blog at BaloneyMacaroni.com.