To the Loved One Who Doesn't Get Why We Decline His Holiday Invites

I often hear this phrase from a family member: “The road only goes one way.” What he means is that the visits we have are one way on his part — we never make a special trip to see him and his family. We have missed out on seeing his new home, the Fourth of July, Halloween and now Thanksgiving and Christmas. I think he feels hurt and neglected by my family, and we feel hurt because he doesn’t fully understand our situation.

When you have a child with special needs, the holidays are hard. Many invites are turned down, because honestly, we really don’t want to put ourselves through the misery of a long trip.

Some things I’ve heard are:

“Can’t you drive at night?”

“Doesn’t she have an iPad she can watch?”

“It’s a shame you don’t want to come and see my house, and where I live!”

Yes, we could drive at night. It wouldn’t make a difference; she wouldn’t sleep like a “typical” child.

Yes, she has an iPad. For our sanity, we don’t want to hear the same one minute song from “Imagination Movers” for 12 hours. No, she won’t wear headphones.

Of course we would love to see where you live and celebrate the holidays with you and all the family. I love road trips! Or, I used to. We would love to hang out and watch the kids play with their cousins. Heck, we would love to have adult conversations. A regular conversation not including medical issues, insurance and therapies.

The fact is, my child will not sit in a car for 12 hours; one hour is enough time to make me crave a stiff drink. She also has a very ridged schedule. If she is off by even a little bit, we all experience it. We have decided not to put her through unnecessary meltdowns. She has it hard enough as it is. I have tried explaining this year after year, and I’m frustrated that he just doesn’t get it. I am tempted to reply with her “Ongoing Problem List” from the hospital. To take an extended trip, we have to plan for every possible scenario. What happens if she gets sick? What if medical supplies are needed and something breaks? What happens if we ruin your holiday? Oh, the anxiety rises just thinking about it.

We love you, and it stinks we aren’t able to be together. Please remember during this time of year that we would love to be a part of all of the celebrations. It’s just simply not an option, so yes, now “the road only goes one way.” Hopefully that will change one day. Please have patience with us. Please keep inviting us. But please understand we will probably say no. Don’t take it as an insult. We wish we could be with you.

Instead, I can let you know that our doors are always open, and let me tell you, my house is bursting with excitement and joy! The magic of the holidays will never leave our home. No one is ever turned away at Christmas. Please come and join us anytime! Santa will always be a part of our lives, and we are so lucky to experience that. It’s a special treat we were given along with our precious daughter.

This year, if a friend or family member with a child with special needs turns down a trip to see you, please understand we’re not rejecting you. It’s just our current reality. Hopefully, it won’t always be this way.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or illness during the holiday season. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.