Fellow parents: I hope you can all agree that traveling with your children is beautiful but complicated. Depending on the ages of the kids, there is a smorgasbord of equipment to take. Whether this includes baby things like a portable crib, toys and bottles, or teenager accessories, such as magazines and iPads, there is a lot of organization that takes place before you can walk out the door.
But what about when the kids don't come? What if mom wants a trip with her girlfriends, dad wants to golf or you want to leave at the (gasp) same time as your spouse and go someplace together? When your child has cystic fibrosis, not only do you have to arrange for all of the kid equipment to ensure that they are accounted for while you're away, but you also have to worry about the countless medications and medical devices. And again, you're going alone -- so you must entrust all the above to someone else.
That's the hard part.
My husband and I agreed early on that we wouldn't raise our son Major differently because he was diagnosed with CF. For us, part of that means having time away from him; not just two hours away for dinner, but also vacations for mom and dad.
We spent our first night away from Major when he was three months old, when we took a trip within our home state. Since then, I have taken two long weekends to Denver to see my best friend; Drew has traveled for work and for guys' weekend; and -- together -- we have tackled Kansas City, the District of Columbia and Florida. Major has had plenty of adventures with mom and dad, but leaving him home always proves to be more prep work than when we travel with him.
If you're gearing up for spring break or on the fence about leaving your child with a chronic illness at home, here are some tips to consider before you leave:
- Do the leg work before you leave. Refill any prescriptions that can be refilled. This includes mail-order and at your local retail pharmacy. If for some reason your flights are delayed and you come home later than expected, or the medication spilled while you're away, having enough to get through until you return will be imperative for the continuity of care for your child.
- It's time for boot camp. If you are leaving, odds are that you have a very trusted person to care for your child. However, just because you have shown that person how to do vest and nebulizer treatments before doesn't mean that they will be comfortable doing those treatments alone. Invite your caregiver over to help lead treatment routines enough times so that they are comfortable flying solo. Trust me, you will feel more comfortable, too. And, if you both have the availability, you can even have that person spend a whole day with you so that they can administer all of the medications to your child to get the hang of things.
- Write things down. Boot camp is done, and your caregiver is ready to go with no questions, right? Wrong! They WILL have questions. They will question themselves. Have a detailed list of care plans available for reference. Do yourself a favor and throw your notes into a binder for future trips to save yourself the time of writing things down every time you leave the house. You can always make edits to the notes in the binder based on treatment changes.
- Prepare for emergencies. Hopefully nothing emergent occurs in your absence, but of course, accidents and sicknesses can happen at any time. Leave a signed consent form for your caregiver to obtain treatment and to make decisions on your behalf if you cannot be reached. Even though you will be in the loop if something happens, what if you are on a plane hurrying back and a test needs to be run at the emergency room? Make sure your caregiver can proceed by having this consent document handy. This is a great conversation to have with your CF care team.
- Be available. Yes, the goal is to get away. However, as parents we rarely totally check out! Even though you've made your handbook of instructions, be prepared that you may still get a phone call or two from your caregiver asking for help. After all, the occasional cough that you don't worry about may be seen as a concern to someone who isn't with your child 24/7.
- Give them grace. You know your child like the back of your hand. You can measure medication with your eyes closed. No matter how involved in your child's life your caregiver is, they are not you. They will do things a bit differently. They will do many things the same. If they are doing something wrong, of course you should address it at an appropriate time. But, if they are doing something differently, try to let it go. Your caregiver loves your child and is giving up their time to allow you to take a break. If your child is cared for, let the differences slide off your back.
- GO ON YOUR VACATION. Leave. Get out of town! Enjoy yourself. Don't call every hour. Trust your caregiver! Having time away from your child gives you a good chance to recharge. Remember that you are still you, and you are defined by many words other than parent. The same way that you don't want your child to miss out on anything because of their illness, don't let yourself miss out on anything because of it, either. If you don't let CF define your child, don't let it define YOU.
Now really, get on that plane. Drive to a local hotel for a staycation. Go!
What tip would you add to this list?