Traveling with a toddler is always a challenge. Add “special-needs” to that mix and you’ve got yourself a real barrel of monkeys. Welcome to my world. It’s a world where packing includes clothes, diapers, snacks and dialysis equipment. It’s a world where it’s usually easier to just stay home.
But, where’s the fun in that? Believe me, when our son was first diagnosed with an “ultra-rare” disorder that requires 10-12 hours of dialysis daily, we were not interested in planning a family trip. We didn’t care if the local travel agency was giving trips away – family travel was, quite simply, not on our radar.
As this new foreign life of medications, medical equipment and specialists became our “normal, everyday life” we began to relax and feel more, well…normal. This is our life and we are going to LIVE it -in every sense of the word. This disease will not define our family. We will define this disease. We began to venture out: day trips, overnight stays and then this summer (9 months post-diagnosis) we went on a REAL family vacation! As with all family vacations-it was fun-and tiring-and at times, even stressful. But, most of all it was liberating. We stood eye to eye with our oppressor and said, “You will not run our lives.” It was one of the best things we ever did for our son and for ourselves.
If you find yourself suddenly wearing a label that says “special needs”, do not give up on your dreams of the everyday joys of life. Special needs families truly need breaks, vacations, fun and a sense of normalcy. Sure, it’s going to be more difficult, take more planning and be just a little bit more stressful than the average family vacation. But, it will always be worth it.