My husband and I were at a dinner for parents of children who have disabilities. While sitting with several younger couples, we were asked for ideas and suggestions on how to make things easier. We are not experts, but we do know what it is like to be a young parent and not to know which issue to be the most concerned about—or even where to turn.
We enjoyed talking to these parents, and they seemed relieved to meet people who’d experienced a similar journey.
We traded suggestions and had many laughs at how these precious children take us on an unforgettable journey—an adventure that we might never had chosen for ourselves.
I revealed that I no longer worry about walking into a doctor's office with my son wearing a Harry Potter robe, a Viking hat, and sunglasses. He thinks he's a rock star. I try very hard not to make eye contact with anyone for fear of laughing, or crying or trying to explain that this is our life.
Another parent confessed to trying to get her child out of their wardrobe of a fireman jacket and cowboy hat. We had to laugh about our well-dressed children and how this battle wasn't so big in the grand scheme of everything.
I think the best part of having this experience is being able to hear the words repeated to you, "My child does that, too!"
Finding connection and support is one of the best things parents can do for each other.
This article discusses the emotions and coping mechanisms that go along with having a child with a life-threatening disease that is very complex and confusing.
My young son had multiple psychological diagnoses and his behaviors were out of control.