Vacationing with a special needs child can really be hit or miss. Madison’s stability varies and unfortunately when you book a trip there’s no way to know if she’ll be having a good week or a bad one by the time that trip rolls around. We traveled to Florida in November and while it was relaxing to soak up the warm weather, Madison wound up having awful nights almost everyday. She barely slept, had seizures, and seemed uncomfortable a lot during the trip, which made things hard for John and I.
We booked a beach house in OBX knowing we could drive instead of fly, and bring the dog with us too. We bought trip insurance of course and hoped for the best. Madison had been having a really rough few months with teething, constipation, and general irritability. It was MISERABLE. I had a gut feeling that the new seizure med we started her on in February was what made her constipation and irritability so much worse, so I asked to wean it about a month ago, after also seeing no improvement in her seizures from it. Her neuro okayed my request, and she has literally been a different child since. (Just another reminder to mamas to always go with your gut!) But seriously, since weaning she’s been in far better moods and sticking to an almost normal schedule during the day, which had us feeling good about going away for the week.
So last Sunday we packed up the car and headed down to North Carolina! Anyone who’s ever traveled anywhere with a child knows how stressful it is. You literally need to pack EVERYTHING for kids. Add special needs to the mix and the stress level increases tenfold. Do we have all her meds? Syringes? Alcohol swabs? Rescue meds? Is there a hospital close by? Are any of her meds due for a refill? Do we have enough to be away for the week? We also need to travel with a portable high chair for her or she won’t have anywhere to sit since she doesn’t have the head control to sit in a typical restaurant high chair yet. On the actual days of travel I also like to draw up all of her medications so that we have easy access on the road. 3 of her meds need to be refrigerated so we also need smaller cooler bags to keep those in. It’s A LOT to prep, but makes things a bit easier on the road.
The trip should have taken about 7.5 hours, but it wound up taking us a little over 10. We had to stop for meds a few times, and unfortunately since Madison can’t feed herself, we also need to stop to feed her meals or bottles throughout the trip. How I wish for the day to be able to pass her some lunch and have her eat in her car seat as we go, but sadly we are not there yet. Maybe by next year! So for now if we need to travel somewhere, we basically just know to add a few hours to our total trip time. Luckily for the most part Madison handles the car pretty well, and as long as she’s not hungry or needing a diaper change, she’s pretty content and usually naps.
This was also the first time we’ve ever traveled with the dog and thankfully he was an angel too! He didn’t know where the hell we were, or what was going on, & was a little anxious, but SO good. Didn’t do one bad thing to the beach house. (Meanwhile at home he eats every remote we have.) And the trip was amazing! Such a success and went much more smoothly than when we went away to Florida. Madison was in such a good mood, and alert and happy pretty much every day. She loved being outside and feeling the breeze of the ocean and it was so nice to just get away as a family for the week.
Our weeks our typically filled with constant therapy and appointments, and it’s honestly exhausting. We’ve had a lot going on recently in our family life and this trip couldn’t have come at a better time. Mama needed a break! And sitting out in the sun is my jam. The fact that Madison was actually content and enjoyed herself made the whole trip feel relaxed and fun. Like an actual vacation should feel. We still need to take out time for feeding her, and giving meds, but with John around too, the days seemed so much easier since we could pass her off and help each other prep and get her ready everyday.
We were even able to go out for dinner most nights! Since most restaurants offer outdoor seating we were able to bring the dog AND Madison’s stroller, which makes it so much easier to handle her. Because she doesn’t have the strength or head control to sit in a restaurant high chair yet, we have to bring our own portable seat with more support and a higher back to accommodate her needs. It’s not such a huge deal, but keeping her in the stroller is so much easier. She also tends to nap if we do that, which allows mom and dad to enjoy some adult conversation and an uninterrupted meal, which basically never happens during the week at home. Win-win for everyone!
That’s not to say there weren’t any hiccups along the way. We planned a day trip to a nearby island and while touring the Gardens there, Madison pooped ALL over the place. The stroller was covered. It was disgusting and so hard to clean given we were out and didn’t have plans to go back to the house at that time. We used every wipe in the diaper bag to clean the stroller the best we could, and had to put the changing mat inside the stroller seat for her to sit on so we could go get lunch. It was a mess! But I also couldn’t help but laugh at how much times have changed. Our last vacation as a couple was to Italy and now here we were cleaning shit off a stroller in a parking lot. Parent life lol.
It can also be hard to get around with Madison since she can’t walk and actually doesn’t even hold her own weight when we carry her. And let me tell you, carrying around 25 lbs of dead weight is HEAVY. The beach was luckily one block from our house, but of course we had 2 beach chairs, towels, a beach tent, cooler, baby, and dog to carry. We used our ErgoBaby carrier to strap Madison to John so that he could still have his hands free for carrying stuff, but even so, as he lifted the cooler bag, it completely ripped. (I guess that’s what we get for totally filling a free cooler bag from the liquor store lol). But because of that we had to make 2 trips. (And by we, I mean John). The beach tent also drew in a lot of beach flies, which was so gross. I couldn’t keep Madison in the tent with a bunch of flies swarming her, so that had to go, which meant no shade, which meant after loading up all that stuff and making two trips, we couldn’t stay as long as we had originally planned. Luckily the time we spent there was great! It was Lincoln’s first time at the ocean and he loved it. The weather was also perfect for Maddie, so she had a great time too.
Lucky for us Madison’s seizures were tolerable, and the CBD has made such improvements in her overall alertness, clarity and mood, that the trip was a wonderful time, and one we hope to start taking yearly. I just hope her new mood continues and that next year is even better! Maybe she’ll be sitting on her own, or able to play in the sand. Fingers crossed! If you’re looking for a kid and dog friendly vacation, I highly recommend OBX. We stayed in Nags Head specifically and it was just lovely. We also went a little out of season, so it wasn’t crowded, but the weather was still great. Like I mentioned, most restaurants have outdoor seating, and a lot have nice views of the water too. Roanoke Island is also a quick drive away where we visited the Elizabethan Gardens and a local brewery. The town is super cute and full of quaint little boutiques and cafes. There’s also an aquarium, although we didn’t have a chance to visit there since we brought the dog with us. While we spent most of our time at the beach, there’s definitely lots to do if that’s not your thing.
Traveling with kids is hard. And traveling with special needs kids is even harder. But we also don’t want to keep Madison, or ourselves, hidden away at home forever, never taking the chance to get out and relax as a family. She may not enjoy a trip the way an average child would, and we may have to work a little harder in order to feel comfortable going somewhere with her, but it’s definitely worth it in the end! Until next year Nags Head… 😎
May 22, 2019
That is fantastic you were able to get away and had a good time. I completely understand about vacation with a special needs child.
You guys are amazing 😍
May 22, 2019
Aw thank you!
May 22, 2019
Absolutely loved your story. So glad you guys were able to enjoy your vacation, even with the poop in the stroller.
May 25, 2019
I love reading your blog. I look forward to each post. I learn so much, thank you. Ya’ll are amazing parents. ♡
May 25, 2019
Aw thank you Lisa!