Always Worth It

If you follow me on Instagram then you know I spent last week in Maine for a little fall family getaway! We had this trip planned for months, and almost cancelled it countless times because so many things have been popping up, but ultimately decided we deserved some time away together. While we were away I decided I wanted to share a blog post about the importance of making memories when you have a medically complex child, but as our trip ended with a tough day and then a TON of traffic leading to a huge seizure filled meltdown in the car, John and I started wondering if it was indeed worth it. So was it?

Life with Madison is extremely difficult and there is no way around that. We will never live a “normal” day. Nothing will ever be “easy” for us. So traveling with her is no different. Traveling with kids in general is hard, so imagine adding all medical necessities on top of that. To go away for a week with Madison we need her bath chair (because she can’t sit in a tub on her own), medications, syringes, needles, alcohol pads, rescue meds, a cooler for refrigerated meds, puréed food, her portable high chair seat (since she doesn’t have the upper body strength to sit in a restaurant high chair without support), plus everything any child would need for a trip; like clothes, jackets, toys, bedding, bowls, bottles, diapers, wipes, etc.. It definitely adds up. But, now that we’ve traveled with her a few times we’ve got packing down pretty well.

Because Madison has been somewhat stable health wise (I mean she’s still having seizures every day, but they’re pretty predictable for the most part), we’ve felt a little more comfortable traveling with her this year. We went to New Hampshire for a weekend for a wedding, OBX for a week vacation, Rhode Island for a long weekend with friends, and now Maine for a fall getaway before we bunker down at home to avoid cold and flu season and allllll the germs. Overall, I’d say these trips were successful and I’m glad we did them, but that’s not to say they were without hiccups.

Maine was absolutely beautiful. It’s peak foliage season over there, and the fall views at every turn were gorgeous. The most vibrant trees I’ve ever seen. Plus, we stayed in Kennebunkport which is a very quaint coastal town, providing us with an overwhelming calm of the ocean waves each day. It was such a peaceful town and perfect for the type of getaway we wanted: a “do-nothing-and-relax” type of trip.

Overall it went quite smoothly, but the last day of the trip Madison had a pretty off day. She woke up for lunch in a fussy mood and really never came back from it. We had gotten a walk around town and some shopping in that morning, but spent the rest of the day at the hotel trying to calm her down. It was rough, but not super unusual for Maddie and being it was the last day anyway, not such a big deal. The ride home however really gave the trip a bit of a sour punch. What should have been 6 hours turned into 9! NINE hours. And what’s tough about a long drive with Madison is stopping for meds and feedings and keeping her content in the car for so long. Because she can’t feed herself, we don’t have the luxury of passing her back a snack to eat on her own as we continue driving.

On a 6 hour drive, we leave right after breakfast, and typically stop once for lunch and a diaper change, and are usually at our destination by the time she needs her next meds and then dinner. Getting stuck in rush hour traffic and adding 3 more hours to our journey doesn’t allow for such ease. She woke up for dinner and when we weren’t in the position to pullover and feed her, she lost it. And when Madison has a meltdown in the car it’s bad. She freaks out and completely overheats herself, which a lot of times causes a cluster of seizures. If we take her out of the car seat it could potentially be hours until she fully calms down and let’s us put her back, so typically it’s better to just keep driving. Once we get home, she does eventually calm down, but again I’m talking over an hour here. When she gets in these fits it’s as if her brain is spazzing out, and she just can’t stop moving around. She might have seizures, or just twitches and body jerks, she overheats and cries. It’s awful to watch. And so to end our trip like this was brutal. All of the peace we felt was quickly replaced with anxiety and made us question whether traveling with her was worth it.

Once the dust settled however the pictures we took quickly reminded us of the positive memories of the trip. Traveling is hard with Madison because there’s no way to predict what kind of mood she’ll be in. There’s no way to predict if her health might take a sudden twist. But unfortunately there’s also no way for us to know how long we’ll have with Madison. And this is true of most medically complex kiddos. We truly need to cherish each day with her more than most people, and being able to make memories with her is SO important. These last few months I’ve seen more than 5 children lose their lives because of epilepsy and rare disease. KIDS, gone, just like that. It’s terrifying and when you’re a part of this world you feel each of these deaths as if it’s happening to you, because in some ways it is. It’s all of us special needs mamas worst fear. And it happens every single day.

I have no idea how Madison’s life will play out. She’s doing so much better than she was a year ago, and I hope I can keep saying that year after year. But the reality is I don’t know. Things could get harder. Things could get worse. And there might be a time that we can’t travel with her at all. So while these trips are sometimes more exhausting than they are relaxing, they are worth it. Spending quality time as a family is always worth it. If you’re looking to make some memories with your medically complex child, DO IT. It’s not going to be easy, but nothing is in this medical world. Don’t let the anxiety of a trip prevent you from living. Each day is a gift with these children and if they are healthy and stable enough to explore, go for it! And here’s a few tips to help you make the leap!

Where to stay:

When John and I used to travel pre-Madison, we never cared so much for the size of the room we stayed in because we were typically out and about every day of our trips. Now, the room is key for us because we know there’s a good chance we might never leave it. If Madison has an off day, or the weather is too hot or cold, it’s much easier for us to just stay in, so now we opt for rooms or houses with a view and outdoor space. Keep this in mind when booking a hotel or renting a house. If you know your kiddo might not be up for excursions, stay somewhere with a great view so that you can enjoy yourselves, even if you stay in!

Packing medical supplies & food:

Like I mentioned above, we’ve got packing pretty much down for Madison. To keep things more organized I have a specific bag I use for all of Madison’s medications, syringes, alcohol pads, pretty much all things med related. She also has two medications that need to be refrigerated so we have a travel bag with ice packs that those go in. For the actual day of travel I typically draw up all of her meds and keep them in the diaper bag for easy access. Her rescue meds are also kept in the diaper bag just in case. Since she really only eats puréed foods, I bring these for her when we travel. Again, I’ll keep a meal or two and bottles in the diaper bag or cooler for easy access on the road, and pack everything else together with any bowls, spoons, etc.. we might need. I also bring a travel bottle brush and dish soap with me to clean everything!

*One important thing to note before traveling when it comes to medications- make sure you have enough for the whole trip! If your trip falls during a week you were due for a refill, make sure you know that and talk to your pharmacy about refilling early or asking for a little extra to travel with (in case insurance really won’t let you refill it!)

Expectations:

Don’t have any lol. Traveling with kids in general leaves little room for a set plan, but traveling with a special needs child leaves even less so. Don’t book anything you can’t commit to. Do some research on where you’re going and have a general idea of what you want to do, but don’t worry if things don’t go according to plan. While Maine was super relaxing, nothing about our day to day really changed except for the fact that was John was off and I had help (my absolute fave thing about vacationing nowadays lol), we had no doctor or therapy appointments, and we got to enjoy a view that’s not our home!

We went on lots of walks and hikes when Madison was up for it. And pretty much always made our way back to the hotel for feedings since it’s easier to feed Madison from the comfort of our own space. If she was in a good mood, we ventured out for dinner (early). And when she wasn’t, we ordered food in to our room. This was our first time staying at a hotel for more than a weekend with her, so we made sure we stayed somewhere in which breakfast was included so we didn’t have to worry about hustling out in the morning to find something for us or being forced to live on granola bars in the room. Instead, when Madison was up for it, we enjoyed the free breakfast buffet with the gorgeous view of the ocean. And when she wasn’t, we brought breakfast back up to our room and enjoyed it from there, still with a gorgeous ocean view!

Be prepared:

It’s important to relax and enjoy yourself, but when traveling with a medically complex child you do have to be prepared for the worst. Make sure you have your rescue meds. Let your care team know you’re traveling. And research the closest hospital to where you’re staying just in case you need it! Wash your hands a lot and keep your child away from others to prevent germs. If you’re flying, bring face masks for your babe, and yourselves if you want, to help prevent breathing in the germs of an airport. When we venture out to dinners we try and go early so it’s less crowded and easier to step out if needed due to a seizure or outburst. We also like to travel in the off season so that our destination is less congested overall. This has made it much easier to get around or out to eat without having to wait for a table or in a crowd.

Traveling won’t be the easiest thing you can do with a medically complex child, and it can definitely be hard to commit. Like I said, we almost cancelled this last trip more than once because we kept feeling overwhelmed, but when it comes down to it, everyone deserves some time away with their loved ones to regroup and relax without the normal hustle and bustle of life. Special needs life will never be relaxing or anxiety free, but in many ways it’s this life that makes it even more important to try and get out there and make some memories. It might be harder for us to do it, but the reward is also greater.

The medical community knows more than anyone that nothing in life is guaranteed, so it’s important to celebrate each day with our miracle children while we can. I’ve unfortunately been reminded of that too much lately. And while we have been financially fortunate to be able to travel, I know many are not. But that doesn’t have to stop you from making special memories. Take a week off of therapy and go on local trips or walks. Anything to break up the norm. Our trip ended on a tough note, but it was still nice to have the time away together as a family. Now that cold and flu season is upon us, we won’t be taking Madison much of anywhere, but I’m glad we got some fun in while we could. If you have a trip coming up, good luck! And if you have any tips to share, please do! And lastly if you’re looking to travel to Maine, Kennebunkport is beautiful and I definitely recommend for a peaceful getaway! Enjoy some pics of our trip below!

Xo,

Kelly