travel

  • Have JB, will travel: On the road this holiday weekend

    “Twenty bazillion travelers are expected to hit the roads this Thanksgiving weekend, according to the latest report from ZZZ…”

    Back in the day, (the “day” being my 20s), a big part of my job was writing/editing/distributing press releases that started just like this!

    While I no longer work for “ZZZ” (clever pseudonym, I know), I still feel a sense of nostalgia for pre-kid road trips. Back then, our biggest concern was giving the dog his anti-nausea meds before he got in the car.

    Today’s packing list looks a bit different:

    • IV pole for the feeding tube pump? Check.
    • Enough cans of formula for the entire length of the trip, plus extra? Check.
    • Medicines, syringes, bottled water and feeding bags? Check, check, check and check.
    • The actual kid? Check.

    I’m fortunate that most of our family live close by. When we do travel, though, there are several items that are CRUCIAL for making the trip with JB easier. Here are several indispensable products we swear by for traveling with our special needs toddler. Even if you don’t have a child with a feeding tube or wheelchair, I bet they’d be helpful for your little ones, too.

    • Skip Hop insulated bottle bags: I have an unspoken rule that if I see one of these bags on sale, I buy it. No matter what. I LOVE these mini coolers. While meant to keep bottles chilled (with the enclosed ice pack), we use them to store JB’s feeding pump and bag during the day. These bags have a great buckle handle, making it easy to attach to a stroller, car seat, high chair, etc.
    • Skip Hop stroller organizer (no longer available, but see similar model here) : Most strollers come with at least one cupholder for the grownups. Unfortunately, those cupholders are usually plastic and appropriately have giant “No hot beverages!” warnings. Enter this bag. It works with any stroller – including JB’s wheelchair stroller – and includes an insulated cupholder just screaming for me to finally put my latte safely down and free up my hand. Fact: I’m a much better mommy when I have my coffee with me.
    • Columbia diaper bag backpack: This backpack has been with us since we went to the hospital to have Baby JB. Since then, it’s withstood almost three years of JB, including daycare, playgroup, road trips, amusement parks, nature walks, playgrounds, the beach, and more. It’s fantastic: Super durable, tons of storage, and ultra comfortable. The only downside? Several of our friends have the same one because we all keep recommending it to one another!
    • Bright Starts Beaming Buggie: Behold, the little firefly that has made every overnight trip and hospital stay a whole light brighter. This toy seems simple: a cute little plastic bug that plays music and lights up. But it also has a waves/white noise option, which we use to help JB feel more at home wherever we are. It clips on to the pack-and-play or crib with ease, and is much easier to pack than a traditional white noise or music machine.
    • Wildkin nap mat: Consider this a “starter sleeping bag”. JB loves this all-in-one mat, blanket and pillow. It’s easy to roll up and bring when visiting family and friends, and it gives JB a familiar setting for his nap. Apparently it’s pretty comfy, too, considering we have photos of my dad napping next to it at a family function!
    • Blender Bottles: This one goes out to my fellow formula-feeding moms out there. These are the perfect way to mix a day’s worth of formula with minimal dishes to wash! Great for travel or everyday.
    • Car headrest hooks: Someone in a “tubie parent” Facebook group recommended these simple hooks. They are so simple, but so useful! We hang JB’s feeding tube pump bag (see: Skip Hop Bottle Bag above!) from these during car rides. You can also use them to hang car trash bags, headphones, purses, shopping bags, and probably 100 other things I can’t think of right now.

    So far, we’ve only traveled domestically by car on our trips with JB. Air travel and international travel are completely different ball games, from what I’ve read and seen. We’re not that brave yet, but I am hopeful that over the next few years travel will become more accessible to disabled travelers and their caregivers.

    What are your road trip must-haves? I’d love to hear!

    Note: This photo is of our dog, not JB. It obviously was taken while the car was safely parked. We would never allow our dog to stick his head out the window while the car was moving. We also would never leave our dog in a parked car unattended. 

    These opinions are all entirely my own, and I have not been compensated to review any of these products. That being said, there are Amazon affiliate links in the above post. As an Amazon Associate I earn from qualifying purchases.

    Recent posts

  • Give me a break

    I needed a break.

    The last time I had spent more than a day away from JB was in October 2017, when I went on a 72-hour business trip to Maryland.

    Since then, I’ve been in constant “mom mode”: Troubleshooting middle-of-the-night feeding pump error messages, working with JB on his never-ending list of therapy exercises, shuttling JB from one doctor appointment to another, and walking around with a patent-pending mix of dry shampoo and baby food in my hair. (Sephora, call me if you want to start selling this!)

    Kendra Adachi of The Lazy Genius Collective, one of my favorite bloggers/podcasters, says, “Self-care is anything that makes you feel more like yourself.”

    The truth is, since my shift to staying at home full time with JB, I really haven’t felt much like myself. Don’t get me wrong: I know how important it is for his health and his therapy that I am home with him, and I love spending time with him. But it is exhausting at times.

    I know other people are going through far harder things, and that my husband and I are fortunate to have a fantastically involved family to help us in countless ways. But I also knew that, for me, in my situation at this exact moment, I needed to step away for a few days before I lost myself even more.

    That’s where A Mother’s Rest came in.

    Back in February, someone in a special needs parenting Facebook group I belong to shared a link to A Mother’s Rest. The organization’s mission is “to improve the emotional and physical health of caregivers through proactive, affordable, restorative respite opportunities.” The group works with bed and breakfasts throughout the country to provide low-cost getaways for parents and families who care for loved ones with disabilities or special needs.

    I came across the link at the perfect time. I was upset because we had to leave early from a rare date night out because JB pulled out his feeding tube. I felt like I wasn’t meant to ever have a moment to myself again. I knew I better start planning this trip now. I signed up the next morning, before I could talk myself out of it. I selected a May weekend at a picturesque little inn in Maine. It was far enough away I wouldn’t be tempted to drive back and bail out if feeling guilty about being away, but it wasn’t too far that I couldn’t drive the handful of hours home in case of an emergency.

    Over the next few months, I had this weekend to look forward to. Whenever I was at my wits’ end, I reminded myself “weekend in Maine, weekend in Maine”.

    Honestly, the weekend couldn’t have come at a better time.

    We’ve been eyeballs deep in house hunting, along with working with the school systems and JB’s various therapists to start the preschool enrollment process. We also added several new medical specialists to JB’s team, resulting in additional appointments. Basically, it has been chaos.

    And I was able to step away from it all (okay, most of it) during my weekend away in early May.

    I read. I doodled. I slept. I shopped. I met up with friends. I ate my weight in fried clams. I watched Law & Order: SVU marathons. (If that doesn’t sound relaxing or entertaining to you, I’d argue you aren’t watching the right episodes. May I suggest the greatest SVU episode of ALL TIME?)

    Since it was a B&B, I had someone making me breakfast each morning, and asking me if there was anything I needed. The innkeepers – some of the kindest people I’ve ever met – had even set up complimentary massages for us! (Another special-needs mom was also at the inn that weekend.)

    I’d love to say my weekend away magically solved everything. That I came back refreshed and revived and never worried about anything else again. That would be a lie, though. Remember, this is real life.

    The following week was possibly the most stressed I’ve been in years, thanks to house-related drama. (I’m beginning to wonder if the people on House Hunters aren’t all actually horrible people as I originally thought, but it’s just the process that makes them seem insufferable.) But I genuinely believe the relief from my weekend away made it possible to even attempt putting one foot in front of the other during those emotional few days. I knew there was still a tiny piece of me that was “me” inside, and I needed to remind myself of that as often as necessary.

    Simply put: My time away helped me power through when I felt as trapped as a gibbon in a basketball. And if you had watched that SVU episode I mentioned earlier, you would be laughing right now, nodding in agreement with that profound reference. You are welcome.

    Recent posts