A journey of a thousand miles begins with a single step. Keep calm and carry on.
These sayings are very true, and wise. However, for my family, a journey of a thousand miles (and even one of 20 miles) has some different preparation and packing requirements, and our Carry On list looks like this:
You see, my family includes a loved one who is medically complex, and that changes some things!
Gone are my days of throwing a couple things in a backpack and heading off for the weekend or a week with friends. Our packing list for overnight travel now includes a 14-page checklist, an almost Herculean organizational effort, a sense of humor, a sense of adventure, and a great love of life. Our adventurous travel feats are made even more impressive because my much-adored daughter requires significant medical technology, full mobility support, and complex care to thrive.
An Alphabet of Experience
A Alcohol gel is your friend for health. Hand washing and sanitizing supports health, especially in high traffic unfamiliar germ zones. Bring your own, bring lots!
B Breathe. Take big calming breaths. Breathe in the adventure. Breathe!
C Customs and Security Screening can be stretching experiences. Be kind, but don’t be afraid to stick up for your loved one and take names if needed.
D Documents are important! We carry a binder of documents just in case we need them, travel documents, legal papers, medical reports, doctors notes, confirmation of accessibility arrangements, medication lists, and copies of passports.
E Extra time for all transitions. Most recommendations are set for ambulatory people with one or two suitcases, not people like us. Plan for extra time for transitions.
F First Aid Kits are handy things. Even people who are medically complex sometimes need the contents of a common first aid kit.
G Go-Bag–don’t leave home without it. We ALWAYS have our go-bag in arm’s reach. The contents of a go-bag will vary depending on needs, but ours contains the entrails of life and all supplies short of needing emergency transport to a hospital. Keep in mind that different hospitals in different places may have very different stock items than we are accustomed to having.
H Hello adventure! Hello amazing and kind strangers. Hello crisis of today that will become the joke of tomorrow. Hello!
I Invest in a comfortable backpack. If your hands are full of wheelchair handles or doing cares, a comfortable backpack can be a blessing.
J Just ask. If you need help with something, just ask! Sometimes people don’t know how or if to try to help.
K Keep your essentials with you. If you need it, and it cannot be easily located or replaced en route or at destination, keep it with you.
L Label things clearly with name and purpose. Just because enteral feeding equipment, suction machines, oxygen concentrators, mechanical ventilation, AMBU bags, and med bags are ordinary parts of our lives does not mean others are familiar with them.
M Make many memories, and take lots of pictures! Some of our favorite travel memories are precious moments captured and have nothing to do with big venues at all.
N No, you do not have to do EVERYTHING on your holiday. Do what works for you!
O Organized packing and lists are helpful. I make mine with columns for packed, bag #, and repacked. Some of the entrails of life with a loved one who is medically complex are worth keeping close track of when packing.
P Pictures are worth a thousand words. I bring a small photo album of my daughter’s medical supplies, what they are, and what they are used for. It is often easier to understand why I cannot check or stow a large battery (or several of them in our case) if it is obvious that it is needed to help someone breathe, eat, clear his or her airway or monitor cardiac function.
Q Quiet moments are essential. Plan quiet moments so you and your loved ones do not get overwhelmed. Recharge yourself as often as you recharge the batteries on the equipment.
R Recognize that disability and medical complexity are viewed differently in different cultures and places. Depending where you are traveling, people may never have seen equipment like your loved one’s ever, not even in a hospital. They may not have the words to ask the questions that you bring up for them. Staring and smiling are both universal.
S Sometimes stuff happens. You may spell “stuff” differently and with four letters instead of five. Your travel may have some glitches. Deal with it, and keep going as best you can.
T Treat others nicely. We take special “treats” for people who are seated near us on a plane or who have to wait behind us in lines, just to say thank you to them for being nice to us. These little treat bags are one of our favorite parts of travel planning. It is amazing what a little note, a Band-Aid, and a candy can do.
U Use EVERYTHING when going through Customs and Security. I hook my daughter up to all her essential equipment when going through Customs and Security so that there are fewer questions as to what her equipment does, and why I am insisting it stays with us through the travel process.
V Variety is the spice of life. Have a Plan A, Plan B, Plan C, and Plan Z.
W Water, lots of it. Drink enough safe fluids since dehydration is overrated.
X X-rays with a person who is medically complex can be puzzling to security attendants–they may never have seen some of the extraordinary features our loves ones have. Try not to take it personally if they do a very thorough job of screening you.
Y Yes, traveling with a loved one who is medically complex can be a lot of work, but in our experience it is so totally and completely worth it!
Z Zzzzzzzzzz. Sleep enough when you can. It is a vacation, not an Iron Man Marathon.
This ABC list has been brought to you by the amazing adventures of Lana and Zhade. We have traveled together for the past decades, through seven countries, by plane, train, automobile, boat, canoe, foot, piggyback, zip line and wheelchair. Our travels have been accomplished with the medical supplies and equipment needed to support the life of my child, who is both incredible and medically complex.
However, and perhaps most importantly, remembering always our sense of adventure and our commitment to fully live every precious moment life shares with us enriches our travels and our lives.
Traveling mercies to you!