This Is How She Rolls...

I can remember holding my tiny baby girl in my arms, able to do just about anything while keeping her cradled. I enjoyed easily getting her in and out of the car, carrying her into places, and the ability to stand for long periods while holding her. After growing into a tall 7-year-old girl, I now find it very hard to just sit with her in my arms!

Elise didn’t go through the usual developmental stages that most moms and dads revel in. There were no Saturday afternoons spent propping her up against a Boppy to see how long she could hold a sitting position before toppling over. My boys each had distinctive ways that they would crawl across the floor to me as I called to them in a silly voice. Elise was never able to even begin this activity. We didn’t walk in with surprise to see her pulling up in her crib. Her arms, legs, neck, and body just couldn’t work together to achieve sitting, crawling, standing up, cruising, and so on.

During Elise’s first several years, she was easy enough to carry around. We bought a special needs stroller off of Ebay once she became too big for a baby stroller seat. She needed something to sit in like a stroller, but the regular ones that are sold at Babies R Us or Walmart didn’t even begin to offer enough support for her. So, the special stroller was the way to go. Having this as an option as opposed to having to carry her everywhere revolutionized our life. It wasn’t fancy, but it did the job!

Lane taking his sister on a walk in her umbrella stroller. It was Lane’s when he was younger, but never did support her enough. We only used it a few times.

This is The Cruiser from Convaid Inc. It worked very well for a stage in her life. We even used it periodically through the next year or so on and off depending on where we were going. It was just so easy to travel with and maneuver.

When Elise was 2-years-old, we ordered a more supportive “wheelchair-like” chair for her called a Kid Kart. This new purchase ushered us quickly into the “your kid is definitely disabled” category for the world to see. No matter. It is what it is, we couldn’t cover it up or disguise it. We were mainly just thankful for being able to own a chair that could comfortably seat Elise and get her around town with her family.

Kid Kart

The Kid Kart was great while it lasted -- which wasn’t long! By the time Elise was nearing 4, the headrest had completely snapped off due to the way Elise throws her head back and slams it into anything that she is resting on (such as the floor, a mat, my chest, and any headrest). This is normal behavior for Elise, and cannot be stopped, but only pacified at times. She was also growing like a weed, so a new chair was ordered.

In 2008, Elise received what we call the “Rolls Royce” of wheelchairs. It is called a Kids Rock. It has a shock system that allows her legs and torso to move as she moves. She isn’t stuck in one position, fighting against her straps. For a kid like Elise, who has spasticity, and major extensor patterning issues (she extends her back, neck, arms and legs in a way that could literally fracture a bone if kept too tightly in place). This chair has been our favorite, and has lasted the longest.

This is the Kids Rock. This is what we still have and will miss. It has worked pretty well for Elise. I have loved the shade, "tilt in space" mechanism, and adjustable handlebars.

Elise is, though, outgrowing this chair, and I am worried in anticipation of the switch that is to come with a brand new one. I know I will be sad to see her current chair go, almost as if a part of her will go with it. Yes, it is just metal, rubber, springs and screws, but it’s actually much more than that to me. Elise’s wheelchair becomes an extension of her. It almost shares her personhood. It is a must-have for us to take her to even the shortest of distances. That is why it is always a nerve-wracking process for me when it is time to move on to something new. Her chair has a personality of its own. I know it’s quirks; its ins and outs. It takes a while to get to know a new chair, and how to work all of the intricate details of each part and function. It will use her new headrest (which I’m not used to yet), a new hip stabilizing feature, and different supports. I do rest in the knowledge that her next one will be fabulous, and I will learn to love it.

Any time I get irritated at the fact that I have to wrangle a wheelchair in and out of the back of my van, squeeze it through door openings not meant for big, bulky chairs, and maneuver it through too-narrow aisles at the store, I have to stop myself and remember to have only thoughts of gratitude. I am grateful for the fact that my daughter even has the pleasure of sitting in something that totally supports her, gets her out and about in the world, and offers her everything her little body needs -- the comfort of padded seats, supportive belts, and a place to put stickers collected at the doctor’s office. Without this chair, Elise would not be the only one to suffer. Her whole family would be affected by being stuck at home without the ability to physically carry her around.

When I think about how much her wheelchairs have meant to her happiness as well as ours, I stop to thank God for where we live, our resources, and our accessibility to this life changing equipment.

Now, if only I had a wheelchair accesible van to put her wonderful wheelchair in…

One day, Ashley. One day!

Family picture in Kilgore, Tx at my 10 year high school reunion. She was chubby and bald for a lonnnng time. The Cruiser was perfect at that time. Lots of room to grow.

Elise in the Chicago airport on our way to ABR physical therapy. This was our easiest wheelchair for air travel.

The Cruiser was easy to decorate for Halloween!

Elise with her GiGi along at a doctor’s appointment. Her chunky little legs didn’t reach the foot plates, but that was ok for her development at the time. Now, footplates are a MUST!

When Elise had leg surgery, and was in full leg casts for 7 weeks, we sometimes used this stroller even though we had moved on to a different one at the time. It was easy to prop her legs up on a platform that Chris wedged into the chair’s seat. We had to be creative!!!

Just a close up of the chair and it’s straps for anyone who may be interested (special needs parents). It also collapsed VERY easily and fit anywhere an umbrella stroller would fit.

Kind of a funny picture of Miss Elise... She was still in her chubby with no hair stage... Anyway, this is the Kid Kart. It was much harder to get in and out of the car and travel with. I had to take it apart into 2 pieces. I didn’t have a van at the time, so I spent many frustrating outings trying to stuff it into my car’s trunk!

With all of her wheelchairs, I have attached her favorite texture toys to the vest or other straps. She definitely knows that they are there, and will pick them up to play with them. When she drops them, they don’t fall away, and she always knows where they are. (I really DIDN'T like the shade on this chair. It covered NOTHING!)

With the Kid Kart, I could take the seat off of the wheelchair base and put it on another lightweight base to be taken around more easily. We used this feature to save room while in the house.

You can see how she really grew into this chair. We also liked to used the tray for using switches.

Of course, my able-bodied child had to take his turn in Sissy’s cool chair. This is when Lane was about 4. He is 9 now, and I have to tell him to get out of her chair at least once a week!

This is her in the Kids Rock chair. We propped up Elise’s casted legs in her chair right after getting it. Looks pretty comfortable to me!

Accompanying Paw-Paw and Lane to school for Lane to go to Kindergarten.

This is Elise and Jackie working with a switch hooked up to her fan. We now do most switch work in Elise’s Rifton Chair. We find it much easier for her to work in.

Wheelchair Fashion Show!!!

I use the wheelchair to my advantage in order to get pics of her pretty outfits. Most pictures I get aren’t perfect, but it takes many tries to get one with her hands off of her face, her eyes open (unless she’s asleep), and with her not hitting herself!

We just got a new I2I headrest for her chair. We were having a very difficult time keeping her head on her headrest. She loved to bend it to the side and off of the headrest, getting her head stuck behind it. It was a major issue and very irritating to keep fixing her, so this one keeps her head in place. It kind of messes up my pics of her outfits, though.

Without her wonderful wheelchair, she couldn’t have joined her brothers and me on our 2 mile walk to Sonic for lunch during Spring Break. I love doing things with all 3 of my kids together when possible.

I love the stage that Ty is in right now. He is just tall enough to reach over and give his sister a kiss at his height. He is also the one who loves to take rides on her lap. Sadly, he will soon be too big to do this, but I hope he will always have memories of sharing the chair with Elise!

UPDATE:  This is Elise's "new" wheelchair.  We have had it for over a year now, and are finally adjusted to it!  Changing wheelchairs is always difficult for me.  It's like losing a part of your body and starting over with something new and unknown.   

In this chair, even more than in the last, she keeps her head and chin down more (due to her changing tone and personal behavior). 

We usually recline her to a point where she is more comfortable keeping her head back.  Her PT mentioned that it is usually better to keep her more upright whenever possible, so we sometimes use this chin rest pictured below for her, which works very well. 

Elise's wheelchair means a lot to her as well as to me.  I consider it her legs, and unconsciously become attached to it.  This is probably why I actually took pictures and shed a tear or two when we changed out this last time!

Lullaby and Goodnight...

(This post is dedicated to Anna Wilson, my grandma. She died March 2nd, leaving a large hole in our family.)

Elise had a great-grandmother with whom she shared many things. The most obvious was their birthday. September 8. One born in 1919, and the other in 2004. As I watched my grandma progress through the last 10 years of her life, I was continually intrigued to see the many similarities emerge between these two females who have held permanent places in my heart.

In her last few years, great-grandma and great-granddaughter...

Both used wheelchairs to get around, and both needed to be pushed. Grandma never did get used to wheeling herself around.

Both found it hard to communicate. Grandma had her better days, but even on the bad ones, she could definitely get her point across, right up until her death.

Both spent lots of time in a bed. Although Grandma enjoyed getting up in her wheelchair for BINGO and eating in the dining room, she eventually became bed ridden, unable to summon the energy to get up. Over the last few years, the bed has increasingly become where Elise is most comfortable, as opposed to her chair, a beanbag, or a mat on the floor.

Both were stuck in bodies that didn’t work well. Neither could walk, and

they both brought out the creativity in their caretakers for good and comfortable positioning (pillows, blankets, padding, adjustable hospital beds…).

Most importantly -- Both depended on the love and care of others to make it through each day.

I know that Grandma prayed for each of my children, but she always spent extra time on Elise. As she lay in a body that was failing her more each day, she would think of Elise and inquire about her well being. Sometimes Grandma would get confused and offer to watch Elise for me while I went to an appointment or ran errands. In her aging mind, she was still able to care for her great-granddaughter, even though in reality, she was stuck in a bed in the nursing home. I would always thank her graciously and try to steer the conversation in another direction. My grandma adored Elise, and I know that Elise will love her just the same as soon as they meet again in heaven.

Watching my grandma die forced me into thoughts of Elise’s future. It is certain that she will not enjoy a long life. The probability of her living past childhood is small, although not unheard of. I have been told by several of Elise’s doctors to expect her to live around 7-10 years. That’s typical for a kid like Elise. With good medical care and a supportive family, her life span can definitely be stretched out. With the types of seizures Elise has, and with her extent of brain injury and all that comes with it, we just can’t deny the fact that we will most likely outlive our daughter.

In the first years of Elise’s life, I thought about this subject constantly. It was hard to get those cryptic words spoken by her doctors out of my mind. I became obsessed with pinning each doctor down. No matter what their specialty, I wanted their opinion. For some reason, the unknown really bothered me.

“I know you can’t see the future, but tell me -- how long do you think Elise will live?”

Some doctors gave me straight answers, others pled the 5th. One would predict a longer life span, another saw it as shorter. After several years of this maddening guessing game, I decided that it just didn’t matter. It’s a precarious spot to be in--knowing that she could die today or live many more years. We are fully aware that any morning of the week, we can walk in to Elise having passed away in her sleep. Seizures are curious things. They can steal a life silently, like a thief in the night, or wildly, like a roaring lion. Elise is also at high risk for developing pneumonia, which is deadly for kids with her issues. The flip side of all of this morbid talk, however, is the fact that she could also surprise us, and live for many years past what is anticipated, even into her teenage years.

I am well aware that I cannot choose the way that Elise will go. I don’t know when, where, or how it will happen. My husband and I can say that we are as prepared as we can be, but what does that really mean? Obviously, no parent on earth is emotionally equipped to see their child go before them. Unlike my grandma, Elise won’t leave behind a life full of the typical memories and life experiences. She won’t be surrounded by her children and grandchildren. This is a sadness that only I will bear. She knows no difference. She will pass on into eternity in the exact same way as everyone else who dies.

Whether the life is old and gray, or young and innocent, death comes for us just the same. Our methods of passing on vary widely. A prolonged process, or a tragic jolt out of nowhere--lying in bed waiting, or taken by surprise. The one thing that all deaths have in common is that whoever you are, wherever you live, and whatever you believe, you will be held accountable by God. You will take your last breath here on earth, and start new again. Where you start new is entirely up to you, but start you will. Hearing my grandma take her last breath after spending several days staring at her chest rising and falling at an increasingly slower rate, I found myself picturing that very meeting. Not between the Lord and myself, but between the Lord and my daughter.

I’ve written about the subject of eternity for children like Elise here before, but that first meeting between her and God is what I picture most. Hopefully, alongside the Lord, Elise will also be greeted by those who knew and loved her here on earth.

That last visit I had with my grandma wasn’t about catching her up on what my kids are up to. I wasn’t there to ask if she went to BINGO that day, or share with her our typical treat of Sprite and chocolate. I was there to say goodbye. More importantly, I was there to hold her hand and paint memories from our past together, mainly from when I was a child. I talked to her about my recollections of her rocking me. I remember the squeak of the old rocking chair as she would sing lullabies until I succumbed to sleep. I decided that afternoon, that the best way for me to comfort my grandma in her last lucid moments on earth was to give her lullabies back to her. I sang “Hush Little Baby”, “Amazing Grace”, and “You Are My Sunshine”. Although she couldn’t respond vocally, she showed her understanding by nodding and squeezing my hand.

Most every time Ty and I visited my grandma in the nursing home over the last few years, we enjoyed singing lullabies to her. It started several years earlier, when Ty was just an infant. To break the silence that would sometimes fill the air during our visits, I started singing to Ty. It ended up being enjoyable for Grandma as well. She would sometimes sing with us in a small voice, clapping along when feeling energized. Other times, she would lay with her eyes closed, still listening, but too tired to join in.

Chances are, Elise will reunite with my grandma many years before I will. As I held her hand for one of the last times, I asked my Grandma Wilson to do me an important favor. I asked her to be there for Elise when she is introduced into heaven, whenever that may be. Could she watch over her until I got there? I wanted her to feel an importance in Elise’s life well beyond gazing at her from behind the bed rails, and touching hands from wheelchair to wheelchair. I wanted her to feel secure in the knowledge that her job wasn’t over with this little girl once her life ended.

Whether the end of an old life, or the passing of the young, death forces us to look back at life. For me, as Elise’s mom, her life means way more than just being cared for day by day, and dealing with the challenges that come along. That is why I find great importance in being eternally minded.

1 Peter 1:13 says...

“Therefore, with minds that are alert and fully sober, set your hope on the grace to be brought to you when Jesus Christ is revealed at his coming.”

I don’t put my hope in having another girl...

I don’t put my hope in Elise’s progress or cure….

I don’t put my hope in an easy, comfortable life here on earth...

I put my hope in the knowledge that Elise will meet her maker face to face, just

as my grandma did only days ago.

In order for Elise’s life here on earth to be useful to the Glory of God, I look to

1 Thessalonians 5:16-18:

“Rejoice always, pray continually, give thanks in all circumstances; for this is

God’s will for you in Christ Jesus.”

Too often, we put way more importance on the goodbye to life than we do on the hello to eternity with our one true God. My grandma, Anna Wilson, had her turn to say hello, and I am sure that she is waiting patiently for when it is her great-granddaughter’s time to join her in a place where they will both be made whole once again.

1938

1945

1942

Having my hair dried by Grandma as a little girl.

Showing off my new bike with Grandma Wilson.

My wedding

Easter Sunday with Grandma

Great-Grandma (Mimaw) and Lane

Lane made himself at home walking the halls of the nursing home in just a diaper!

Great-Grandma (Mimaw) and Elise

Dueling wheelchairs!

Both Lane and Ty called the nursing home “Mimaw’s house”. In this pic, Grandma feeds Elise as Lane takes a nap in her bed.

Sharing a birthday party!

Grandma loves Elise

Great-Grandma (Mimaw) and Ty

When Ty was little, I would take him to Grandma’s to share breakfast from McDonald’s. She really enjoyed that.

I’m so glad that I have this picture of me holding my grandma’s hand. She held my hand as a child for comfort and to keep me safe. I wonder who will hold my hand when I’m 92?