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!)

Does Santa Visit Elise?

Even though Elise won’t write out a Christmas list for Santa, search the house each morning for our “Elf on the Shelf”, or scour through magazines for what toy she can’t live without this year, Santa won’t forget her. With a kid like Elise, your options for birthday and Christmas gifts are exceptionally limited. It is always interesting for me each year to see what caring family members and friends have picked out for her. For years, she received books, toys, and some pretty typical gifts given to little girls. Some of these presents were used in creative ways by us. Could we hang the toy from a toy bar for her to swat at? Did the book have any textures that we could run her fingers along?

As she has grown older, and everyone has become more familiar with her abilities and disabilities, I have started seeing gifts that have more meaning. Toys with definite texture, sure to keep her attention. Things that vibrate. Or even better, things that have a button to push in order to make them vibrate (she loves cause and effect). Devices that light up and will keep her gaze in her “light room”. Practical presents such as wipes, pacifiers, and socks are always welcome as well.

Each Christmas, I try to put myself in her place (as much as that is possible!). What does she enjoy? What does she need more of? I usually end up asking for batteries for the many toys that she “plays” with. Most of her toys light up and vibrate. Without the vibration, a toy becomes pretty boring to Miss Elise. I always dread the moment that I go to find more AA batteries to quickly replace the old ones in a favorite toy, and realize we are totally out. Later, Chris becomes frustrated with me when none of the TV remotes in the house work because I have stolen their precious batteries!

This year, I have told my family that the best gift for Elise would be money. There are several things that I have had my eye on for the past year that I would love to get her. Of course, anything deemed “special needs” has to cost an obnoxious amount of money. Her favorite toy, a wooden butterfly in a plastic base about the size of my hand that lights up and vibrates cost $90 when we bought it many years ago. Our Sunday school took up money and bought that toy for Elise when she was about 2-years-old. At the time, we were spending all of the money we had on traveling and trying out various expensive therapies. We just didn’t have $90 to blow on 1 little toy. That particular Christmas, our friends from church collected money from the couples in our class without our knowledge. They presented it to us as a gift to spend on anything that would benefit Elise. We still have the handful of toys that we used that money on, and I am always reminded of their generosity toward us when I watch Elise enjoy them.

Her big brother, Lane, always makes sure that Santa brings Elise gifts, too. This has probably helped make his belief in Santa even stronger throughout the years. After all, if St. Nick remembers his sister, when it looks like she is forgotten in so many other ways, he has to be real. This is also true with the Tooth Fairy. After every lost tooth, Lane was eager to see if Elise was visited in the same way that he was. As silly as it felt, Chris and I always remembered to put a little something under her pillow or on her nightstand to solidify the Tooth Fairies’ existence for Lane. Tricky stuff!

So, this year, I hope to purchase several needed items -- some that she has already had in the past. Nothing too much fun, but I know for sure that whatever Santa brings her, she won’t complain.

This is a vibrating tube that I can wrap around Elise in her wheelchair to give her some input. Or even to the bottom of her standing frame to encourage better blood flow to her feet, which often turn blue. They use one at school with her stander and think that it really helps. We used to have one of these several years ago, but we just used it until it wore out! I like this one because you can attach a switch to it and let her control turning it on and off.

This is a Snoogle. We have already gone through 2 of these with Elise. It is a wonderful pillow that keeps her in a very comfortable position. At night, she wears leg braces on both legs and sleeps on her back. At other times of rest, she likes to lay in her Snoogle on her side and curl up.

This is a Mathmos Space Projector. Since Elise’s blindness is cortical, (her brain injury causes her blindness, not her eyes themselves), it is always good to stimulate her visually. Since we know that she sees light in some capacity, we wanted to try this out and see if it would catch her attention. If not, Ty would like it in his room, I’m sure!

These are called “Hatchbacks”. They are special shoes made for kids who wear AFOs (braces on the feet and lower leg to keep the foot in a correct position). I LOVE them and she has pretty much outgrown hers. They work so much better for her than regular shoes.

Elise in her Christmas dress (3-years-old)

She was a happy girl!

All of the kids before going to bed to wait for Santa to drop by… (4-years-old)

Elise sleeping in PawPaw’s lap several years ago.

Elise with Mama and GiGi on Christmas Eve. (5-years-old)

Elise opening her first Christmas gift of the year from one of her favorite people., Jackie. She has cared for Elise for 6½ years in our home. I stayed home with Lane and now with Ty, but have always needed Jackie here to help provide the special care needed for Elise. Elise definitely knows who Jackie is and loves her very much!

It was a huge box of little candy canes. Elise can chew on pieces of the candy canes under close supervision and a little help.

Open the Eyes of My Heart, Lord!

Ever since Elise was born, I have learned quite a bit about blindness. Although Elise is 7-years-old now, I am still left with a certain amount of wonder about what exactly she sees. We know she sees light. She is what you would call a “light gazer”. When she’s in a dark room and you turn on a light, she immediately turns her head toward it, like a plant growing toward the sun’s rays. We have affixed twinkle lights up above her bed, and give her many opportunities to look at anything that is illuminating and sparkling throughout the day. We don’t have the slightest idea if she necessarily enjoys looking at them or if it is just a physical reaction for someone who lives otherwise in a blank world -- not seeing faces, toys, or other objects. Light is the only “visual” element that evokes any reaction from Elise.

In the Bible, there are several references to Jesus healing the blind. When you have a blind child, I think these stories always hit home more than with others. You can truly imagine what it would be like for your child to be one of the blessed few who were healed by Jesus and given the gift of seeing their loved ones and the world around them.

The other day, I saw a video on YouTube of a 10-year-old boy who is blind and autistic singing the praise song “Open the Eyes Of My Heart Lord” in front of a large crowd of worshipers. Before having Elise, I would have watched this video with a sense of happiness for the boy and his parents. After living in the world of “special needs” now for so long and having a child who, among many other things, is also blind and exhibits autistic tendencies, I saw this video on a much more personal level. This little boy, with all of his challenges, has an emotional investment in this song. He isn’t just singing the words. He is feeling them.

Only after hearing this song, did I realize that in those Bible stories I heard as a child, Jesus wasn’t only healing someone’s physical blindness, but he was using their faith in Him to open the eyes of all those around Him who saw these miracles. To open the eyes of those who could see physically, but whose hearts were blind to God’s glorious truths. Those who were misinformed, bitter, stubborn, or just thought they knew better.

In our darkest time immediately following Elise’s birth, I called to Jesus and He answered. Not in the form of healing Elise, but in the form of giving me the gift of being nearer to Him, and knowing Him better. That’s how he answered. That’s what I want others to see. That when you open the eyes of your heart to the Lord, things start to change. All of a sudden, having a kid like Elise isn’t a curse or a drag on your life. It’s a blessing. Your circumstances, however terrible they are by the world’s standard, take on a new meaning.

I do feel as though Jesus has given me a new awareness of the world around me through living the last 7 years with a child like Elise. I also know that I have only taken a peek. I want to ask the Lord to open the eyes of my heart this Christmas season and beyond. Open them wide. Open them indefinitely.

It’s like walking through a dark room. You don’t see what is there. Just because you don’t see it, doesn’t mean it isn’t there. Sometimes you can feel your way around the room, touching various pieces of furniture and other belongings. You know they are there because you can feel them. I feel God all of the time. But that’s just not good enough. I want to turn the light on and see Him. Just as you have a more clear and complete view of the items in your room once you turn the light on, you can also have a more clear and complete view of Jesus Chirst, simply by opening your eyes!

This is something that I am challenging myself with this Christmas season. Seeing the birth of Christ for what it is. THE BIRTH OF CHRIST! No, I won’t stop shopping, enjoying Christmas parties, or watching Rudolph with my kids. I merely want to make more room this year for Jesus. It’s simple. I’m going to ask God to open the eyes of my heart, but I still have to be the one to turn on the light!

Here is the video I wrote about. It's pretty cool...

(His dad tells his story at the beginning, and then he begins singing around 3:25)