Traveling is always harder than it needs to be, with more thought than should be required needing to go in to what to bring, how she’ll be comfortable, what will entertain her on the plane, how will we keep her entertained when we’re there, what kind of sleeping arrangements will there be, and how will she sleep. Everyone has to go through those same concerns, but with a special needs kid, it’s amplified. Her discomfort isn’t easily explained to her or others around her, and it’s not easy to calm. When she’s uncomfortable, she’s uncomfortable and until her discomfort is ameliorated, she’ll get more and more frustrated. Beyond that, there are medical concerns – what if she has some stomach problems or sleep problems or heat aversions as she’s been having lately, or even respiratory problems and we end up not being able to travel back, and get her to her therapies or back to school. Not the worst thing since we almost exclusively travel to be with family, but the longer we’re away, the less we’re prepared for.
So, here’s the list of things we always have to make sure we absolutely can not forget: Blue Therapy Wedge, Black Bamboo Arm Brace, Purple Benik Hand Splint, Spio Compression Glove and sleeves, Shoes with AFOs, Meow Meow, Bracelets, Cups, Ipad loaded with Signing Time, Cares Harness, snacks, drink, Miralax, LCarnitine, Fish Oil, Vitamins, Pull ups, Swim pull ups, Night Time Pull Ups, Potty Seat, Tooth brush, Toothpaste, Therapy Brush, swimsuit, sunglasses, wipes, Fork, sippy, bib, glasses, dysruption glasses, Go Pro, Plane toys, Stroller, Clothes for 3 days, Pajamas, Swimmies, Melatonin, Measuring spoons, Books, Night Light, Weighted Blanket, Monitor, Headphones, Pillow A smattering of touchstones and therapies and just things that will keep her safe.
I bring it up because it was on our mind as we decided about Boston. It’s a minor thing in the grand scheme of how we came to our decision, but if all of this is a minor thing – all of the major things that led to the decision are a little easier to comprehend. Traveling did not even come into play when we were thinking about going. To have all of the headaches that travel would cause not even factor into the conversation, we knew this was a weighty decision.
Ultimately we decided we just couldn’t do it right now. Maggie is just settling into her routine and she’s making some great progress with the interventions we’re currently implementing. Disrupting that just seemed too much. As much as we wanted to be a part of it – help all of the girls with Rett learn something new about potential new treatments, and give Maggie a medication that has the potential to help her, we just felt like it was too much for her, for us, at this time.
It was a very hard decision to come by and it took us a while to arrive at the decision. But it’s the right decision for us right now. Hopefully the trial works, the medicine is made available soon and Maggie can access it then. Until then, we won’t wonder if we made the right decision or not, we’ll just make sure to keep Maggie progressing as best we can.