Attempting a Vacation with a kid with Special Needs?!

Why do we even attempt to take our special needs daughter on vacation?

So. Many. Reasons.

First, because our special needs daughter is just that, our daughter. She has the dignity, worth and value of a daughter. We love her and if possible, we drag her little booty wherever we go.

There will be times and places we do not bring Rynnie. Usually it’s for her comfort – the girl doesn’t love hot, nor bright. She can’t quite sit up yet but you better believe I put her on a kayak and a paddle board with me (when it’s safe). She likes boat rides and loves family. So she vacations.

I remember when doctors pointed out that Ryn would have no quality of life. Well, look at the photos below and tell me she’s got no quality. Girl is a Queen, in all her own ways.

Second, my “love language” is Quality Time. What’s yours?

My Rynnie graduated Hospice in 2024, and is followed by Palliative Care. And while I don’t let my head or heart get too bogged down in the statistics of life-length with a child with Trisomy 18, I know that her life will likely be shorter than my other children. Palliative to me though means, aim for High Quality! Enjoy each moment, make memories and love well. Make her have the fullest little life she can… and that includes vacations.

Third, Rynnie is a sister. Wouldn’t it be weird if you went on vacation and your sister wasn’t there? Of course. Rynnie is a verrrry loved sister. Her siblings love her so much and even though it’s an incredible amount of work, I really believe they are happy to have her along for the ride.

There are so many more reasons, but one easy way to say it is that my family and my vacation is incomplete without all 3 of my kids. Rynnie requires a lot of medical equipment, a lot of work and some contingency plans. She requires me to lift, transfer and diaper change. I can’t do a laundry list of things I love to do as easily or maybe even at all. But, my family feels full with Rynnie here.

Notes to remember:

I am a FIRM believer in respite care and have a MIGHTY team of nurses and aide. They aren’t always available and don’t do overnights but I do one day wanna go on a hiking, biking, kayaking kinda vacation without Rynnie. I would only leave her in the competent and loving hands of our amazing team or family.

Rynnie hasn’t always been this stable. One time, we even AMTRAKED from South Carolina to Philadelphia when she needed too much equipment to easily get through TSA.

There are inherent risks in taking your Special Needs kid. Like, haha, joke too soon? You may wind up going directly from the airport to the hospital for an urgent procedure. Your child with Special Needs might have an immune system that’s less strong. Your sanity might be at risks packing, repacking, triple checking… You have to weigh the risks and benefits. You have to decide if the risks are worth it.