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The Road Less Travelled

The Road Less Travelled

I’m not going to lie, as a parent to a child with disabilities, it is sometimes easier to just stay home. A lot of logistics go into travelling with a medically complex person. Keeping feeding and medicine schedules, packing all the equipment, and just the physical strain that comes with it. Who has ever driven 3 hours on vacation to discover you left your child’s feeding pump at home? This family!

For the past 18 months we have not ventured out a lot, with the exception of therapy and doctor’s appointments. Our daughter is incredibly vulnerable to the threat of Covid, so we have taken social distancing very serious,  but we were all becoming a little stir crazy. I desperately needed a change of scenery. 

We made the decision to go on a little vacation with safety in mind. We found a lodge that was off the beaten path, but had everything we needed to have a good time. As long as there is a pool, our daughter is pretty happy!

There is a lot of preparation that comes with even a weekend trip.

Also, a lot of anxiety. What if I forget something? How will I keep her medicine the right temperature? Will she be comfortable on the drive? I try to keep myself organized with a checklist, but I still always manage to forget something. 

The drive went pretty smoothly, with the help of Cocomelon, but her patience was definitely wearing thin by the end of it. With Cerebral Palsy, muscle discomfort is very common especially when constrained to a car seat. A good stretch was long overdue. 

The location we chose was more on the secluded end of things, which for our needs was perfect. It was so nice to have a little getaway while maintaining the social distancing practices we had become accustomed to in an attempt to keep our daughter as safe as possible. We essentially had the place to ourselves. It was one layer of anxiety we desperately needed lifted.

The trip did not come without challenges.

The trip did not come without challenges. The lodge was not exactly wheelchair friendly. We also attempted a cave tour, but it turns out our toddler is not quite the spelunker we had hoped she would be. That particular activity did not work out, but one thing I have learned is not everything is going to. I used to feel really defeated by things like this, but I’m trying to learn to go with the flow more. We tried something new, and then moved on to a more successful activity.

I don’t expect her to engage with every experience, but I have to give her the opportunity to try. Sometimes you have to put in a little extra effort. Everything will not always work out as anticipated, but that’s okay. You never know unless you try. 

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sarah Kirkpatrick

Meet Our Blogger

My name is Sarah Kirkpatrick. I am a hair stylist from Alabama. I have one amazing daughter who has quad cerebral, dystonia, and HIE. I love all things art, music and cats.

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