It Ain’t Easy

Over the river, through the woods, in the air and over land, traveling with TWO kids with JA…. it ain’t easy, but we did it.

easybutton[1]

We finally made it to California, but due to all the weather issues across the country, what should have been a 5 hour ordeal turned into a 20 hour day.

But that’s ok, we are grateful being here at all.  Like I pointed out in the post yesterday, not everyone is so lucky to have access to a pediatric rheumatologist, or one that is a leader in their child’s particular form of JA. No, I’m not complaining, but I can tell you, the trip is always hard.

The weather was just another glitch in the many we always face when we have to travel. Why?  Because my kids have JA.

Things the “normal” family takes for granted, are things that are big challenges with us, since we also deal with Juvenile Arthritis.

First, we have to plan meds and food around the travel schedule. Like having a baby or a toddler who always needs a snack, I have to make sure that when we fly long distance that I have packed enough snacks (that will clear security) to suffice for the “take with food” meds if we are in the air with no meal service. I also have to plan for snacks that will help settle their stomachs if the meds combined with turbulence, cause issues. Right away we ask for one can of ginger ale, just in case, and I always have (slightly crunched up) oyster crackers or saltines in my purse. Most of the time we don’t need them, but Murphy’s law, the once or twice that I didn’t…

family-guy

 

Yeah,  I’m not going there again.

I also have to plan extra time to go through security, since we have to travel with so many medically necessary liquids, a few of which cannot go through the x-ray scanner. Since we also have a number of filled syringes (my son takes 3 shots EVERY day) we always get pulled out for the super duper pat down.  One time, our medication tested positive for explosives. That was fun (not.) It was because the pharmacist who labeled our meds had traces of the heart medication nitroglycerine (also an explosive) on his hands. It all worked out after the composition and concentration came back, but thank goodness we arrived two hours early, it took us the whole time in the criminal waiting area to clear that one up.  We barely made our flight!  Again, not complaining- I’m happy that TSA is doing their job, it just means a lot of extra time we need to plan for contingencies. (PS- I have learned to wipe down ALL our medications with alcohol wipes prior to leaving our house now- that wont ever happen again!)

 

I have to plan our carry-ons in such a way that it wont be too taxing on the kids. We have switched to small roll aboards versus backpacks since the strain on their backs can be too much (both have arthritis affecting their backs) but that also means that I need to make sure that we are in the early boarding groups when booking, since we can’t afford to have medications checked, and those type bags need to be placed in the overhead. Arriving late, or boarding in a late group, won’t ensure a place for our luggage. Even though we keep it to a bare minimum, a weeks worth of meds (with a spare couple of days, just in cases)  for both kids usually takes up one of the cases entirely.

On a really long flight, like the first 4 hour leg we had yesterday, I have to make sure the kids get up and move around a few times during the flight. If not, they end up sore, swollen, and in worse pain the next day. What works for a “normal”  traveler doesn’t necessarily work for them. Being bumped and jostled in the airport or jetway can be painful. Walking too far between gates or from the terminal to the parking lot can also be problematic. Sometimes, we don’t know what type of day it will be until we leave, so at the last minute we may decide to take even more time to walk and allow for rests, or to just break down and use a courtesy wheelchair or tram and deal with the angry stares from people who assume we are having “fun” by giving him a ride.

We always plan a full day of rest the day after, because usually at least one of the kids is too spent to be able to do anything else.

So that is where we are today. One kid made the trip ok, but the other is hurting, and worn out from the whole travel ordeal, needing to increase meds and nap the day away.

It ain’t easy, but we do it, and feel lucky too. We have been doing it a while now, so we have our routines and tricks to make travel easier, but long gone are the carefree days we used to have, just packing a bag and getting on the road!

How do you deal with the travel challenges of taking a trip with a chronically ill child?

 

Related posts:

Comments:

  1. Good article! We are linking to this great post on our site.
    Keep up the good writing.
    domain recently posted…domainMy Profile

  2. I just hate that your kids have RA, but I am thrilled that they have such super parents! It sounds to me like you are doing everything right. I don’t have any kids with RA, but I’ve had Lupus and the RA that goes along with it for over 30 years. I have had to basically give up travel because of most of the reasons you stated. Do they let you get up and walk a little in the plane? That is one of my biggest problems with RA when traveling. I just cannot sit for any length of time without hurting and aching. Keep the faith and I send prayers your way!

    I would love for you to drop by if you have a minute later.
    Robin Wilson recently posted…Domestic Violence Brings a Tragic Ending to a Blogger’s LifeMy Profile

    • Thanks for stopping by! As long as the seatbelt sign is off, they can walk around a bit. We usually just go up and back once or twice to the furthest restroom (they cant say much about that) but still, long flights cause them both to be hurting more than normal and wiped out the next day. We prefer to drive if we can, and have found that can be a great adventure if we have the right mindset!

      I’ll come by and visit you too!

  3. i can relate and i know how it feels traveling with kids and being on the road for long hours. You have interesting story to tell when you kids is of enough to understand. the good thing is you arrived safely
    Sheila recently posted…Filipino PartiesMy Profile

  4. Geez, I can’t believe the medication tested positive for explosives! I’m sorry you all had to deal with these challenges while traveling. I can’t even imagine!
    Trisha recently posted…Wonder Forge Games #GiveawayMy Profile

  5. Anddddd that’s why we drive when we travel.. just the thought of our kids on a plane.. I wouldn’t want to deal with that. None of them are ill, but they don’t do sitting still for long periods of time.. ear popping.. it’s a pain in the buns..
    Natalie recently posted…Avon’s Ultimate Mega Palette GiveawayMy Profile

    • Admittedly, we drive whenever we can, as opposed to flying, but in the middle of winter, and from IL to CA… just not an option this time (or some of the others) The drives still have their own challenges, but are much less stressful overall!

  6. I don’t think that I could do that. I can barely get myself on a plane. I’m glad y’all made it there though!
    Cara @ Craftdictator recently posted…Coffee SleevesMy Profile

    • I’m sure you could, if that’s what you needed to do! It takes a lot of extra effort, and I’m usually as exhausted as they are after its over. I never would have thought I could juggle so much before, but its amazing what you can accomplish when you don’t have a choice!

  7. it ain’t easy travelling with kids, what more if they have JA.. kudos to you for your preparations 🙂
    Mommy Pehpot recently posted…The Best Of TagaytayMy Profile

    • Thankfully, my kids are older, so they can help, or at least communicate with me! My hat is off to any parent traveling with very young special needs kids. So much more goes into it than others (especially non-parents) might think!

  8. Savannah miller says:

    Sending a big hug your way I won’t lie I couldn’t do everything you just said. My little guys are 3 and 6 and even though they don’t have chronic issues its still a huge headache when ever we go anywhere. In 2012 we went to the beach and I told me hubby I need a few year break before we try that again. Even though it took a bit longer I’m glad you made it Cal. and I’m sorry one of the kiddos isn’t feeling well.

    • Thanks Savannah- its kind of our “new normal” with chronic illness, but I remember when everyone was well,and my kids were little… it travel at those ages was a challenge too! Everyone has their own “stuff” to cope with, and I hope that by posting things like this, it might help to make everyone a little more tolerant, since they realize they may not know the whole story. Its amazing how we can do stuff when we don’t have a choice. 4 years ago I NEVER would have thought I could take out an IV or give shots every day… or even confidently travel the way we do, but we adapt! (just like we do when we have kids! lol)

  9. I have motion sickness too, this is terrible feelings.
    thesellerfrank recently posted…Add Image ALT Tags Automatically in Blogger Blogs for Image SEOMy Profile

    • It definitely makes things harder! We have also found that those seasickness bands can help. I found out about those when I was preggers and had a hard time riding in the car. Never thought I would use all the same tricks for morning sickness on my male children!

  10. My niece had some health issues including motion sickness. She doesn’t go on a big trip that much cause she thinks going out is a big ordeal.. It’s really amazing how you deal with both the kids 🙂

  11. My daughter’s motion sickness combined with the meds makes travel difficult. I give myself double the time to get to my daughter’s appointments. I am amazed how you handle having two with JA with such practicality and strength.
    Herchel S recently posted…20 Minute Workouts for Busy MomsMy Profile

    • Herchel, I am lucky in that both of them are not equally as hard- my younger son is a much milder case, so I just have to keep track of his meds, or be sensitive to him if its a bad day, my older son has many more considerations, and is the one that we have to do so much more to keep him comfortable. I guess I would be able to handle two like him if that’s what I had to deal with! I think they say kids are resilient, but we parents learn to adapt and bounce back too. My biggest tip is like yours… allow PLENTY of extra time (and make sure that all the electronics are charged if you don’t end up using all the time you allotted!)

Leave a Comment: