This month’s edition is all about travel, which is undeniably hard for any family who has a child with complex medical needs. But there are some children—including mine—who simply cannot travel at all. After being on an oscillator/ventilator for several months while in an induced coma, she has some major fatigue issues. Five months after discharge, we are only up to an hour out of bed a day. A few months back we tried to push her a bit with two half days worth of appointments at the hospital and she literally went unresponsive for almost 20 hours, complete with body temps dipping into the 80s, heart rates in the 40s, and apnea spells that lasted for hours. We’ve made the decision that at this point, travel is just not something she can do.
So what can you do if your child can’t travel? If she can’t see the world, you bring the world to her! There are many ways this can be done. Travel videos, documentaries from other lands, and books about places and things. You would be surprised what you can have done at home if you just ask (and have a little bit of money). Want to take your child to the zoo? Hire an exotic pet party company to bring animals to your home for your child to pet. Want your child to see the stars? Get a big paper box and recreate the constellations. Want your child to hear live jazz? Call up a high school or college and ask if they would consider playing for your child. If you have a good palliative care or hospice organization, you may be able to arrange all kinds of neat things, including music, art, pet therapy, play therapy, and even massage.
My daughter also can no longer attend school. While not an option for her, many children who lack the energy to attend school can participate electronically using a computer and webcam. They can sing during story time, tell a story, listen to the teacher, and follow along with lessons, all from home. Online school programs can also provide similar benefits.
One of the most difficult travel-related problems we deal with is how to handle trips with her siblings. Obviously we don’t want her to feel left out, but we also don’t want her siblings to be deprived of trips to the zoo or a museum because of their sister’s health needs. It’s OK to take a day trip with your other kids. Just make sure to take a lot of pictures and videos to share when you get home. These days, with smart phones, tablets, and easily available wireless connections, you may even be able to “bring along” your child from home using a service like Skype.
It can be incredibly isolating to have a child who cannot leave home, not only for the child, but for the entire family. But there are ways to make it better for everyone. It takes a little bit of creativity, but it can be done. You can travel without ever leaving home.