Traveling with Elise & the "Family Car Ride"

We started traveling with Elise when she was only 7-weeks-old. That is when she took her first of over 25 airplane rides. My entire family was ready to get started with the many therapies that we found for Elise’s brain injury even before she was born. Becoming aware of her impending problems while pregnant proved to be a blessing, as we were able to research different options for intensive therapies geared at babies and children with brain injuries. These therapies just happened to be scattered all throughout North America!

Elise has journeyed in cars and vans. She’s taken numerous rides in ambulances being led by screaming fire engines and police cars. She has traveled countless miles on airplanes and even ferry boats. She boards a bus each morning and afternoon to go to and from school. With all of these modes of transportation under her belt, the most memorable travels that I can think of with Elise are the simple family car trips.

We have always had the tendency to pack the car to the gills when going away for even just a few days. I have always been an over-packer. Even before Elise, we would roll up to our destination busting at the seams. So, adding her and all that comes with her to this mix sometimes felt overwhelming. Through our years of traveling, though, Chris and I have come up with ways to cut down on the chaos and over-cluttering of the car. He can pack up our minivan like a big puzzle, with every piece fitting together, although precariously, to ensure we have everything that we will need. Even with his meticulous planning, there will always be the horror of having to unpack the ENTIRE back of the van just to get to her wheelchair!

We just returned from a car trip to see family for Christmas. Bound for Houston (4 ½-5 hours depending on stops), the ride there was very nice. Elise was happy, quiet, and slept for several hours. Everything was beautiful as we looked at the passing landscapes. There was no tension. All we had before us was a wonderful family celebration. We felt lighthearted and cheerful. This wasn’t going to be so bad after all!

Skip to the ride home… Elise hit herself in the chin, face, and head, screamed, cried, pulled her hair, and spit her much needed paci out no less than 53 times. It’s amazing how being in the car with “this” Elise can cause us to completely ignore any beauty outside, show rising levels of anxiety, and just pray that this trip would come to an end!

I have no problem admitting that our family car trips can very closely resemble those in the National Lampoons movies. Many times it seems that the Griswolds have nothing on us! There can be one mishap after another. Ty repeating the same phrase enough times to make my head fall off. Lane sitting in the back, buried up to his eyeballs in suitcases and bags. Elise needing food, liquid, medicine, her paci, or just some attention. Spilled drinks, lost toys, and more trash than I care to know about.

When Elise was little, car trips were a piece of cake. For several years, she didn’t even have a wheelchair. She was easy to put in and out of her car seat, and she had not begun all of her self-injurious behaviors. She was generally better behaved. As the years have passed, however, Elise has stepped it up a notch! She used to sit quietly in her car seat and only cry for hunger or b/c she was sleepy. She now cries for unknown reasons, and hits herself in the face and jaw until she actually injures herself (busts her lip open, knocks out a tooth,…). We sometimes have to brace her arm to keep her safe.

Changing a diaper on the road when she was little was no big deal. We would simply stop at a fast-food place and use their baby changing table. Now, she is way too big for that table. Those days are definitely past! We now either change her IN her car seat (don’t ask), or if there is room, we put her on the floor board or in the back of the van and change her. I will open an umbrella or drape a sheet over us to shield the people walking by from seeing a “big girl” having her diaper changed!

Traveling with Elise includes:

• Packing enough diapers and wipes
• Making sure to have recent refills of all medication so as not to run out unexpectedly
• Bringing lots of blankets to create pallets on the floors of wherever we are visiting
• Packing a bag full of her favorite toys (all of which will vibrate and sing tunes in the back of the car each time we hit a bump in the road!)
• Gathering up everything it takes to make her food, including bibs, special spoons, Thick-It to thicken her food, special ad-ins that entice her to eat, baby food -- and if I’m feeling extra ambitious, I will bring her food processor to puree whatever we eat.
• PLENTY OF PACIS
• Remembering all of the tubes, syringes, medicine cups, gauze pads, and other supplies that we couldn’t do without.
• Packing up feeding tubes and plenty of Pediasure. (It is not fun to have to buy expensive Pediasure at a grocery store b/c it was forgotten, when there is a ton of it at home!)
• BENADRYL!
• Packing the emergency g-tube (feeding tube) replacement kit in case her Mic-key button comes out!
• Bringing her arm brace to keep her from hurting herself and busting her lip open from hitting in the back seat.
• Remembering her leg braces to be worn each night (although I rarely actually put them on her when out of town, so as to spare our hosts her crying b/c she doesn’t like them. Having them in the car is the same as wearing them, right?)

Though traveling with Elise has definitely become physically and emotionally more difficult, it’s not all a sob story! The boys, my husband and I still love to play the ABC game and stop for snacks and treats. We still tell funny stories and play 20 questions. She does has times of laughter and happiness while playing with her squishy toys attached to her seat belts, or enjoying the air blowing on her from the air conditioner. It may get a little hairy here and there for a few hours, but I think all of our brains have adapted. No matter how demanding or strenuous it may seem to bring Elise along on these family car rides, I know we all agree it is worth it. After all, it can only be called a “family” car ride if the entire family is in the car!

Elise on a plane traveling in style!

Elise on one of many airplane rides. We were always trying to give her visual stimulation!

Oh, how I miss the days of the Pack and Play and putting her on a bed with a few pillows around her. Now that she is bigger and can roll around just enough to catapult herself off of a bed, we fix up thick pallets on the floor for her or use every pillow in the house to cage her in on a bed!

It seems unbelievable to me that this is the same girl! Growing has never been a problem for Elise!!!

Elise in her arm brace. We use this when she is exhibiting her self-injurious behavior. It’s a life saver.

Elise’s car seat, a Britax Traveller Plus. It is huge, which is great for her. She is about to outgrow it, though. We may be moving toward a handicap accessible van where she can travel in her wheelchair itself.

I put her wheelchair in and out of the back of the van myself everywhere we go. It weighs 70 lbs. That is officially my limit!

All of the kids asleep in their seats several years ago. Ty is hidden, but you can see his toy on the seat in front of him...

Deja vu...

Big brother, Lane, holding Elise’s hand on a car trip (2005)

Little brother, Ty, holding Elise’s hand on a car trip (2011)

(Always sucking on that paci!)