How Our Special Needs Family Travels More Efficiently
The first step is admitting you have a problem, right?
My name is Jackie, and I’m fanatical when it comes to preparing for a vacation.
It’s unclear whether this compulsion would have presented if we’d had a “typical” family, or if it only manifested because of my daughter Cammy’s Rett syndrome. As a betting woman, I’d say that I would probably be like this, special needs or not.
Going anywhere outside our daily accessible bubble is daunting, let alone driving or flying away for an extended amount of time with an immunocompromised loved one and tons of medical equipment. Every time our special needs family takes another road trip, we travel more efficiently. We constantly reevaluate and ask, “Did we really need that?”
Packing is a two-week mental and visual process for me. I have lists and bags. Then, I have lists for the lists and bags for the bags. I have Ikea bags, Dollar Tree storage bags, gallon-sized bags, quart-sized bags, and sandwich bags — each with its own purpose. I have clothing lists, toiletry lists, swim bag lists, Cammy’s feed list, her changing supply list, a list of items for each bin in the car roof carrier, and a shopping list for when we arrive. Finally, each bag and bin is labeled.
Traveling for two weeks with a 12-year-old who has a feeding tube requires 56 cans of PediaSure, 28 cartons of coconut water, 14 feed bags, two extra extenders, two syringes, a nebulizer, and her wheelchair. This requires a large amount of dedicated space in our vehicle.
The convenience of Amazon has transformed my world of traveling. Whether you are staying at a hotel or renting a house, ordering diapers, swim diapers, and wipes for delivery at our destination is a huge space saver. If you let the hotel concierge or property manager know ahead of time, they will usually set your packages aside for you.
To maximize car space, each child has a bin with her name on it. Cammy’s bin has feeding and changing supplies and cords for her iPads. My daughter Ryan’s bin has snacks, art supplies, and crossword puzzle books as well as headphones and electronic devices. Carabiners attached to headrests hold Cammy’s feeds, making it possible to start and stop her meals on the road. The back of the car is always kept pretty clear for Cammy’s wheelchair or for use as a changing table. This really cuts down on time at rest stops.
All this preparation and a 20-hour drive is absolutely worth it to see my girls smile in the pool. Every. Single. Time. When we travel as a family, we focus on the same things any other family does while on vacation — relaxing and making memories.
Ryan and Cammy Babiarz enjoy the pool while on vacation in August. (Photo by Kim Cernek)
Read more about Cammy’s story at our blog, “Cammy Can Reverse Rett.”
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Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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