“If you have ever seen fishmongers throwing fish to each other,” said a friend who has a child with disabilities. “Picture yourself as the fish catcher. You have to deal with a bunch of fishmongers pitching the fish to you all at the same time. Would you like to catch all the fish? Sure you would. But you can't. So you have to catch the biggest, most expensive fish out of the bunch. Farm-raised catfish -- you can get that pretty much anywhere. But mahi mahi on the floor...that's just wrong!”
This is what it is to be the parent of a child with multiple disabilities or medical problems. Where do you put your attention? On what area do you focus? You can’t possibly address everything simultaneously. There are not enough hours in a day to make every doctor visit or do every therapy program available. That is, if you have anything else in your life, like a spouse, a home, other children, work, your own needs…
Another parent I know was struggling with horrendous Mommy Guilt. If you’re a mom of any child, with or without disabilities, you know Mommy Guilt. Her little girl was nearing 2 years old and had no form of communication yet. This mom knew that communication is critical for a child’s development. She was beating herself up for not learning sign language and teaching it to her hearing-impaired daughter.
But, in reality, she simply couldn’t yet. Her daughter had been hospitalized most of her short life. Her parents had faced one difficult medical decision after another; the latest being to do a procedure which severed her esophagus from her stomach to prevent aspiration of stomach contents into her lungs. This was life-threatening and life-changing stuff. For two years, the focus had been on keeping her little girl alive. When the “survival” fish is thrown at you, you let the “communication” fish flop.
Even with less critical concerns, we’ve learned to prioritize my daughter’s needs and let go of the guilt around the things we have to let slide. For example, when we were focusing on hearing and speech development, we could not manage to start the journey of investigating growth issues with a new endocrinologist. But when the hearing issues were somewhat settled, we could take on the new task.
It’s like managing a stovetop with multiple boiling pots. We move the one most near to boiling over to the front burner so we can stir and monitor it closely. On the back burners, we leave the pots that seem to be maintaining a gentle rolling boil or a simmer.
To an outsider, it can appear that we are ignoring some important needs. What an outsider often misses is the view of the boiling pots or the mahi mahi that keep our attention away from the catfish or the simmering pots. All parents face too few hours in a day, difficult prioritization decisions, and guilt. For parents of children with disabilities, the hours seem fewer, the decisions more difficult, and the guilt heavier.