Friday, May 2, 2014

"Quit Hitting Yourself!"

I was 9-years-old and struggling to breathe, as my little body was being squeezed mercilessly by my older brother.  He had me in a classic scissor hold, trapped between his legs, gasping for air.  As if this wasn’t humiliating enough, my loving brother topped it off by grabbing my own hand and forcing me to hit myself in the face.  

“Quit hitting yourself!”, he would yell over and over, as I whimpered in defeat.  
Always defeat…

I never would have guessed that decades later, I would be saying this to my 9-year-old daughter… (just not for the same reason.) She can’t hear me or understand my words, but it doesn’t stop me from pleading with her, “Quit hitting yourself, Elise!”

Of all the issues that Elise deals with on a daily basis, the fact that she hurts herself in a variety of ways has to be her most devastating challenge.  We can deal with deaf.  We can handle blind.  We cope with her cerebral palsy, and muddle through her daily seizures.  What I can’t seem to wrap my head around, though, is her self-injurious behavior (SIB).   

This post is for any other parent or caregiver out there who helplessly watch as their child hurts themselves, while trying your best to protect them.  This will at least show you that you’re not alone, even though I definitely feel that way most of the time.  Trying to make any amount of sense out of your child’s SIB can be incredibly frustrating, as it seems like a puzzle never to be put together.  

Hopefully, in our story, you can find some solutions helpful hints.  I only ask that if you have ANYTHING to add that could be helpful to this struggle, please comment below.  I am always desperately seeking new ways to deal with this insidious condition.  This is the part of Elise that I understand the least about, which results in a string of failed attempts to control her everyday struggle.  

*** It is extremely difficult for me to post these kinds of pictures of Elise on my blog, but it is a very real and true depiction of life with a child with severe brain injury.  Not all suffer with this type of behavior, but countless children/adults do. I don’t post pictures of her in this way, because who needs to see my baby girl with blood on her face and hands, or a black eye on her innocent face?  But, since that is what this post is all about, I had to bite the bullet and reveal the “not so pretty” side to life with Elise. ***

This is Elise’s situation, what I know about SIB, and what we have tried...

Chin Hitting

Elise started hitting herself when she was about 3-years-old.  One day, out of the blue… BAM!  She aimed the heel of her right hand directly onto the right side of her chin.  

“That was odd,” I commented at the time.  

Fast forward many years later, and it ain’t so odd anymore!

You gotta love the action shot!  When it comes to hitting herself, the harder it is, the better.  

Another good action shot… You can see Elise doing this any day of her life.  Some times are worse than others.  

 It doesn’t look like a very strong or violent hit, but trust me, it is…

Head/Face Hitting

This is, by far, Elise’s SIB of choice!  Shortly after her first experiments with hitting herself on the chin, she quickly progressed  to hitting herself in the right temple.  This is a pretty safe target, as is the jaw.  These two areas, though, have sustained so much hitting over so many years that the tissues have changed in her facial structure, resulting in an unbalanced/non-symmetric face if observed closely.  Her chin remains larger on one side, and her temple protrudes on one side, as if a permanent knot has formed under her skin.  (She has been thoroughly checked out by doctors, and we have been assured that, other than the facial areas changing shape/contour, nothing is broken or fractured… at least not yet.)

Hitting her head/temple in bed...

Could she stop there?  Noooooo… she eventually moved on to banging on her sweet nose, pretty mouth, and baby blue eyes.   Putting these areas of her face under this amount of abuse has proven much more damaging. 

She has knocked out several of her baby teeth, given herself black eyes, split her lip countless times, and scratched her face in many places.  
 It started innocently enough with minor red marks and small bruises on her face.  

But, in time, she has honed her skills as a self-boxer, resulting in more obvious injuries! 

It doesn't take long at all for her to inflict this upon herself, and many times we aren't even aware.  She cries most of the time, so we can catch her and stop her.  She is beginning, though, to wake up at night and hit herself in silence, giving me a big surprise in the morning!

There’s nothing as jarring as going into Elise’s room in the morning to get her ready for the day, and discover that, during the night, she had silently beaten herself up.  The same actions that can result in her screaming in pain and irritation, can also serve as self-calming behaviors.  This fact creates many problems from our point of view as her parents.  It underlines, italicizes, and boldly screams, "I need something/feel something, but I can't tell you!"

No matter how many times she beats herself up like this, it is still shocking to see her go from the picture on the left to the picture on the right in a matter of minutes. 

Biting Herself

Did she stop at hitting herself on the head/face?   Heck no...on to BITING herself!

Many children with Elise’s level of brain injury keep their hands in and around their mouths most of the time.  This provides them comfort, serves as a stimulation, and satisfies a primal need, not unlike that of small babies.  As babies grow out of this behavior, lots of kiddos with brain injury just keep on at it, year after year.  I’m glad she has her hands to occupy her when she isn’t getting attention from others.  Unfortunately, it doesn’t stop at that.  When Elise is having a bad time with her SIB, she will bite her hands until they bleed.  For years she kept the biting shallow enough that it provided her with what she was going for without actually hurting herself.  One day she decided, “Hmmm, maybe I’ll put a bit more force into this!  If a little is good, why not a lot?”  The result is bloody hands covered with cuts and callouses.  

This is a good combo picture.  Face and hands...

Head Banging

One of Elise's more startling behaviors to the outside world is her head banging.  This started when she was very young, maybe around 2-years-old.  While on her back, she will pull up her head, (yay for the head control!), and slam it back down on the floor.  She doesn’t do this in a bed where the mattress underneath her is soft, but she saves it for the hard surfaces.  I remember thinking she was so clever when she was just a little thing, and when put on a changing table, she would recognize that the surface was hard.  She would rear her head up and bang it back down on the table as hard as she could.  I know with all of my heart that if you were to put Elise on a hard wood or tile floor and leave her there for any long period of time, she would beat her head until she passed out or died from trauma.  She doesn’t have that “OFF” switch that tells most people, “I should stop, this really hurts!”

Banging her head has also proved detrimental to her wheelchairs.  She hit the headrest of her first wheelchair so forcefully and so often that the metal just snapped!  Her wheelchairs now come with stronger headrests, though my husband has to tighten them often because they are no match for her little head!  

Hair Pulling

The last main form of SIB that Elise deals with happens to be the least damaging.  The girl loves to pull her hair.  This is mainly done when she is tired, and not in the way a baby or toddler twirls or tugs on their hair as a bedtime ritual kind of thing.  She puts all of her strength into it!  This is a behavior that we do not interfere with.  She has yet to actually pull her hair out, so if she needs to do this to calm down and sleep, go for it!  (Just crossing my fingers she keeps it at this level… I don’t need to add hair loss to what we’re dealing with here!)

What We Have Tried 

These are a few of the things we have tried over the years.  Some work, some don't.  You'll never know until you try!    

Homemade Boxing Glove 

Yes, that is a big, pink boxing glove (made out of foam and socks.)  It worked ok, but would quickly become soaked with her spit, making it a pretty gross option.  It was also cumbersome and hard to keep on her hand.  We moved on...

Arm braces/Elbow Immobilizers/No-Nos

When she was smaller, we had the most luck with this knee immobilizer.  Yes, these braces can be used in all kinds of ways!   It fit her arm perfectly, and kept her arm from bending up to hit her face.  She did figure out how to throw her braced arm in the air and against her head for a little fun, but no harm ever came of that. 

Arm and leg braces are used often to keep these kids from using their arms/hands to hurt themselves, so they can serve a double purpose.  We have always been given a pair here and there by our orthotics guy.  These are actually knee immobilizers, but they work as well as ones for the elbow.  

I mentioned these in my post about Cerebral Palsy (here).  This was an arm brace we tried years ago, specifically for keeping her arms outstretched to work on loosening up her spasticity.  We didn't really think this one through.  Turns out, it hurts pretty bad when you hit your face with your hand/arm and get a face full of metal.  Not the best design for a hitter!

Baseball gloves w/ fingers cut out

This was not her best look, let me tell you!  We got the bright idea to get her some baseball gloves and cut the fingers out.  We were trying to prevent her from chewing up her hands.  These worked well, except for the spit mentioned above with the boxing gloves.  They would become saturated, and then irritate her skin underneath. In a pinch, they are a good option, though...

To Medicate, or Not To Medicate...

I have seen the debates on internet blogs, forums, and FB.  I am aware that many parents/caregivers try to do everything possible before trying medication.  I get that. Elise is on so much medication just to function daily, that when I drive up to the pharmacy window, they just go get her prescription.  No conversing necessary!  We also give them a Christmas gift each year :)

The thing is, that "no medication" ship sailed a LONG time ago for Elise, and if there is something out there that gives her some relief, I'm gonna get it for her.  Our medication of choice for her SIB has been Risperidol (Risperidone.)  This cuts her hitting/biting in half.  She still does it a lot, but not nearly as much as when off of the medication.  I don't think any prescription will completely stop her behavior, but we are thankful for how much it does actually help.  It took us several medications, and even going back to ones that previously failed to help her, before getting the right drug + dosage to be helpful to Elise's SIB.  Frustrating, yes... but DEFINITELY worth it!

As Elise's parents, we have always worried about what the medications ultimately do to Elise as a person.  Over the last several years, as her medications and doses have increased due to escalating SIB as well as uncontrollable seizures, we have definitely noted the sad fact that Elise's personality has taken a hit.  The twinkle in her eyes has faded to a point.  This is a definite situation where you have to weigh the pros and cons.  Is it worth getting back some of that *twinkle* in her eyes, if she is determined to knock them black and blue?  Regaining some of that younger personality she had would be great, but could it really show through if she couldn't stop screaming, biting her hands, and splitting her lip open?  It's a trade-off... one of many heart-breaking, but necessary decisions that we have made for her with her best interest in mind.  

My LEAST favorite, but MOST used option... Personal Intervention

This is what we do most of the time to help Elise out with her SIB.  It is also the most exhausting and time-consuming option.  Oh, and it looks bad in public.  

Personal intervention, for us, means replacing the action that Elise is doing to herself with something with just enough power behind it to satisfy her without hurting her.  If she wants to start banging away on her temple, jaw, face, or head, we will just take the place of her hand with ours.  I know just how hard to "hit/tap/pat" her in the head/temple to appease her, but without harming her.  I promise... she likes it!  

For example, when I leave the table at Chilies to go to the bathroom, I tell my mom or husband, "Can you hit Elise for me?"  Chances are, I've been "hitting" her with my hand to her head throughout the entire meal just to keep her from doing it much harder to herself, crying, and causing a scene.   (Every time I write about us being in public somewhere, I have us sitting at Chili's.  I'm not sure why... we go other places :)

A few weeks ago, I asked a  friend at church to hit Elise on the head while I had to step out of the room.  I overestimated our friendship, I think, as he looked at me like I was nuts.  His wife, however, was more comfortable with my request.  She knows just how hard to "pat" Elise to keep her happy.  (Thanks for nothing, John Bregere!)

This is a fine line. 

I, as her mother, the rest of her family, close friends and teachers know just how much muscle to put into this action.  Elise does not enjoy being patted or touched in a light, easy way.  Kids like her often prefer touch to be heavy, forceful and even jarring.  

My point is, this may look like some sort of abuse or negative action when seen from the outside by people who know nothing about Elise.  I had to quit caring what people thought.  I figure, if they can see the result is a relaxed, happy little girl, hopefully they won't have the urge to call CPS!  

Other Forms of Stimulation

One last way that we try and curb Elise's SIB, is by giving her plenty to occupy herself.  This is a huge challenge when dealing with a deaf/blind child that can't use her body to play like typical kids do.  Most of what Elise enjoys includes vibration.  Her toys vibrate, she's had a vibrating toothbrush, and her bed even vibrates!  This makes sense for someone lacking so many senses.  She can "feel" her world better this way.  

The following has been a very useful product for us.  

(Ok, so, before I go any further, I want to let you know that I've heard all of the jokes there are about this product.  I've even told a few.  So, just take a moment to clear your mind of any silly thoughts and let's get on with it!)  

The Vibrating Snake 

The Vibrating Snake With a Switch

This is something that we can put in her chair with her, wrap around the bottom of her standing frame (to help with circulation), put on her mat with her, or just give her to provide some much needed input.  If your child knows how to work switches, or likes switches, you can buy the one that is switch activated.  This gives them the ability to control when the snake is on and when it is off.  
Pretty cool...

Boredom is Elise's biggest enemy.  It also brings out her SIB like crazy!  At home and at school, she is played with, worked with, given opportunities to be in different environments, and to play and work with a variety of toys and switches.  She has something to occupy her for many hours each day.  This is a sure-fire way to keep the SIB away.  She LOVES attention, and will hog any that comes her way!  

We also provide Elise with plenty of personal, hands-on, "in her face" time.  This is HER favorite solution to controlling her SIB!  Most times that she is given up-close and personal treatment, she stops the hitting, biting, and hurting of herself to just enjoy being the center of someone's attention.  

Why is she hurting herself?” 

Four months ago, she screamed and hit herself in the face, until we discovered she had esophagitis, resulting in years of unaware damage being done to her esophagus that she couldn’t communicate to us.  

Last month, she hit her head repeatedly because she had an undetected ear infection.  

Two weeks ago, she gave herself a black eye and a split lip on the bus just for the heck of it (probably just bored).

Yesterday, she bit her hands as she screamed in delight while I played with her. 

Today, she has hitten, bitten, screamed, and all together thrown fits for a reason I may not figure out.  

These behaviors go against all that we, as typical, non-brain injured people know and understand.  Although we are continuously perplexed by this question of why, I personally believe that there are 2 main reasons as this pertains to Elise:  

#1: She is sick/hurting/uncomfortable in some way.  This is extremely hard to figure out, and I have thousands of dollars of doctor bills to prove it!  The culprit can be as big as an unnoticed but painful infection, or as small as a stuffy nose.  I also believe she is in discomfort much of the time due to the spasticity of her body, as I wrote about in the post about Cerebral Palsy mentioned above.  She can also sense when she is about to have a seizure, and often hits herself extra hard in the seconds preceding it.  

This girl can feel the slightest change in her health, and this is how she deals with it.  Unfortunately, hitting herself only creates more pain and discomfort.  This is a cycle not to be understood by Elise, so if WE don't stop it, SHE would continue to hurt herself to no end. 

#2: Lack of outside stimulation.  In short, she can't see what we see, hear what we hear, or use her body in the ways we do to create our own stimulation.  Like twirling our hair, chewing gum, tapping our fingers on a desk, bouncing our leg/foot, and all of the other stuff we do daily to regulate ourselves.  

There's Always a Brighter Side...

OK, so maybe there's not really a "brighter side" to this aspect of Elise's life, but I have a hard time ending on a note that isn't at least a little uplifting.  How about this...  

To make things fair after posting all of these pictures of Elise not looking her best, I will now put up a picture where her family looks like weirdos and she gets to look like the only normal one of the bunch! (Except for Poppi in the front... spoil sport!)

Monday, February 24, 2014

The Big Red Marshmallow

“Hey!  How are you?”
“Great!  How are you?”

This exchange is repeated millions upon millions of times through the years by all of us as we casually pass others in church halls, throughout office spaces, at little league games, around our neighborhoods, and in grocery stores.  We give a smile and a wave, silently covering up the truth behind the original question – How are you?  

I’m not sure where we learned this polite reply that we give just to let the poor soul who asked the question off the hook from having to know the more accurate answer.  I’ve always been a huge fan of this exchange--smile on face, twinkle in the eye, tilt of the head, and PRESTO!  I fooled them again!  This is not to say that there aren’t times that this response is the truth for the moment.  Lots of my time is spent in a state of “good”.  As a matter of fact, I would dare to say that most of my life can be filed under “great”.  But, with a filing cabinet capable of holding folders from A-Z, there have to be real and true times of “not so good”.  

We’ve made it a kind of business to hide our times of weakness from others, when we should do just the opposite.  When we keep our problems, obstacles, or vulnerabilities to ourselves, too proud to admit them to the people around us who think we have it all together, what does that say for our trust in our fellow man?  

Each of us has something that is “not so good” going on at some point in our lives. This applies also to the times we are merely tired in our life and worn out by our circumstance and responsibilities.  Why should our husbands, wives, and families be the only ones to bear these times with us?  The Bible tells us to bring our troubles to the cross.  But who says we have to bring them alone?
I finally decided not to bare one of my larger burdens alone at the end of last summer.  Gathered in the living room of a friend from church, a group of ladies and I spent the evening in a Bible study.  I’ve been attending these types of studies for many years, each time mixing the familiar faces with the new.  At the end of our discussion on whatever topic we may be on at the moment, there is time left for prayer requests.  I don’t raise my hand often, but on this particular night, something grabbed me by the throat and choked a true confession out of me.  

“I’m overwhelmed.  There’s all sorts of stuff going on with Elise lately, and I am heavy with concern, anxiety, and fear.  I am tired.  She’s getting bigger and harder to handle, and my health is suffering.  We need a wheelchair accessible van, and I can’t see how it will ever happen.”

Or, as I saw myself saying that night, "BLAAAH"!

There it was, out in the open.  I didn’t have it all together.  I didn’t float around on a cloud of happiness all of the time, dealing with life’s challenges with a grin and a skip in my step.  I was broken and needed help.  

Talk about feeling awkward!  In the words of my 5-year-old son, “That’s embarrassing!”  What I have come to find out over the years, though, is that overcoming a little uneasiness to reach out is necessary.

From that seed I planted in my group of ladies at our Bible study, a shoot began to grow and roots took hold—a stem, and then leaves appeared.  My friend, Aubrey Knuckles, heard my cry and decided to answer it.  She and her husband worked with a local non-profit, Helping Hope Inc., to get started  making a wheelchair accessible van a reality.  My original seed was becoming a beautiful, thriving plant!

** Fast forward about 5 months, during which we raised an unbelievable $27,000 during a one-day fundraiser called National Giving Day, and other donations came in from friends, family, and even strangers. **

In the 10 years we have been at Cottonwood Creek Baptist Church, we have sat in the back of the sanctuary in the handicap seats.  We like to joke that they are the best seats in the house, especially for a family like mine.  Our position provides us a quick getaway, should Elise start crying, laughing, or humming over the preacher’s sermon.  Leaving for a bathroom break doesn’t interrupt those around us, and we definitely have more than enough leg room.  Another plus to sitting in the back, is that we are able to observe those in front of us who fill the sanctuary to praise the Lord and learn about Him.  I see people with their families, holding hands while they sing, whispering to their children to sit still, and leafing through their Bibles to look up passages.  Our seats may be far from the pulpit, but the message comes through loud and clear each week.  

Last Sunday, our little private oasis was abruptly disturbed when our names were heard over the microphone, being called down to the front.  It would take a whole other blog post to describe our feelings at that moment, but shock was at the top of the list.  Being kept in the dark, we thought we were going to have a meeting with our non-profit, Helping Hope, Inc., after church that day to discuss how we were going to raise the $10,000 that we were lacking toward buying our wheelchair accessible van.  I had no idea, however, that a charity, Therapy 2000, had picked up that large chunk of change many weeks before.  The van had been purchased, and was sitting behind a curtain on the stage of my church.  This information was all unknown to me, so when I began my walk to the stage, thoughts flooded my head with what could possibly be happening.

It is a long trek from the handicapped row in the back of the church all the way up to the front of the sanctuary.  That walk will stick in my head for the rest of my life.  It is then that I was able to look around that huge room into the sea of faces of people I know, people I laugh with, as well as people I have never met before.  In those faces, I saw compassion, excitement, and love. We may covet our sweet spot in the back, observing the whole of our church from afar, but the perspective that a view from the front gave us is worth more than the van itself.  

It’s an odd feeling to know everyone is looking at you, especially when one moment you were one of a very large group, and now you are just one.  After some talking, (and teasing), the van was revealed, much to the astonishment of my entire family.  

Who knew that all of these people cared enough to orchestrate such a surprise? 

What a humbling experience this was!  I have heard it said that humility is the realization that every good thing in my life is the result of either what God or other people have done for me.  Amen! 

"Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time.  Cast all your anxiety on him because he cares for you."  
(1 Peter 5:6-7)

** I later learned that everyone involved in the keeping of the van secret at our church called it the “Marshmallow”, making sure the surprise wasn’t accidentally leaked in conversation.  We have since appropriately named the van “Big Red Marshmallow”.  **

This van represents the care and resourcefulness of organizations like our non-profit and other charities.  It exemplifies the love of strangers, the compassion of our friends, and power which God holds to bring people together amidst a situation that, from the outside, would be considered a tragedy. 

This is the dichotomy of Elise’s life.   It has been heartbreaking and heartwarming...confusing and draining and life giving.  It definitely is tragic that Elise has a brain injury.  It’s devastating that she will not grow up to live a full, long life with a family of her own.  But, she isn’t lacking in friends and supporters from all over the world, and a community that smothers her with love.  

Although each of my friends shouldered my hurt that night at Bible study just months before, and committed to pray over me, it only took one person to walk out of that house and take action.  Her trust in the Lord, and His power to work through many, turned my simple prayer request into a wheelchair accessible van!  THAT is God in action.  

There may be some of you out there who will read this story, and think, “It just looks like a lot of caring and giving people got together and supported a fellow human being.”  

You can think that, but you will be dead wrong.  There are tons of well-meaning people who do great things on this earth, but this was done by many WITH the help of the Lord.  

This isn’t something to be proved by me, and it doesn’t have to be.  I know how this worked, and so do most who were involved.  I also know that there are most likely people who donated to this van, or were involved in its purchase and delivery in some way, that do not know Jesus Christ.  I consider this a bonus!  What a wonderful opportunity for them to see Him at work in a big way!  I will continue to pray for all involved, believer or not, because without each of you, I would still be lifting Elise into her inept car seat, as well as her wheelchair in and out of our broken down van.  Elise and I don’t have to do that for even one more day…. Hallelujah!!!

We all know that God wants us to call on Him in our time of need, but we often forget that he also wants us to call on other believers that He has set in our path, ready to lend their hand.  I get it.  It can seem daunting to see and help others’ struggles when you are in the midst your own.  That’s like trying to put out your neighbor’s house fire, while your own home is engulfed in flames.  It can be done, though.  Last week was an example of that for our family.  My friend, who started this whole process for us after that revealing Bible study prayer time, has a large family of her own, and personal, daily experience with a child with special needs.  When I look at her, I wonder how she does it all.  When she looks at me, she wonders the same thing!  

Oftentimes, people will start to tell me about something tough that they are going through, prefaced with, “It’s nothing compared to what y’all are dealing with.”  This simply isn’t true.  My problems are no bigger than yours. Our non-profit charged ahead for us in the same way that they do for the needy families in our area without enough clothing, coats, food, or jobs. Our church family rallied around us just as they do around a country full of people with no food or clean water.   No one person’s need is any greater than the person beside them in the eyes of the Lord.

What I am most guilty of, though, is sitting back in my comfortable place of merely having really good thoughts.  

I sure wish the family mentioned in class today didn’t have to go through such financial stress.”  

I feel horrible for the friend at Bible study who has breast cancer.”

But, is that enough?  Well, I pray for them each day.  Is that enough?  

Good thoughts = More good thoughts
Taking action = Results on those good thoughts

The Bible tells us:

"This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers. If anyone has material possessions and sees his brother in need but has no pity on him, how can the love of God be in him? Dear children, let us not love with words or tongue but with actions and in truth."  (1 John 3:16-18)

Each person involved in the purchase of our van was called to action.  Jesus, himself, didn’t just preach.  He healed the sick, raised the dead, and changed the world.  We can change someone else’s world, one action at a time.  I heard in a sermon once that in the Bible, love isn’t just an emotion, it’s an action.  

We each have our own “Big Red Marshmallow”.  Something that seems out of reach or so far gone if taken on alone.  

A child with special needs that are not under control
A spouse struggling with alcoholism or pornography
A sick or dying parent that is causing stress on your family
Financial troubles that are weighing you down
Depression that is crippling you to the point of desperation
Your own health that is impacting you as well as your family’s life

Of course, a wheelchair accessible van isn’t my only Big Red Marshmallow.  This van was something, though, that my fellow believers, friends, family, and strangers from all over the world could plainly see, understand, and provide help.

The next time I bare my soul, it may be for something much smaller in size or money, but just as large in importance.  If I keep nodding my head and smiling, without allowing any of the truth to seep through, how can I expect to be helped during my trials, however big or small, by others around me?  I have written before about how hard it is for me to ask for help, or show a weakness.  How selfish of me!  I like the way Nathan Brown, from Helping Hope, Inc., put it up on the stage at church that Sunday.  He said, “Their obstacle created opportunity for us.”  

My obstacle created an opportunity for God's love and power to be seen through so many.  That concept pretty much blindsided my entire family.

Don’t get me wrong, this doesn’t all land on other people.  Caring friends don’t take away Elise’s issues and our daily struggles with her.  Generous people can’t give my daughter a renewed life of health and strength.  Fundraising can in no way erase the tears cried over my baby girl.  

Christ can do all of these things.  He takes away pain.  He renews health and strength.  He erases tears.  The Lord uses his followers here on earth to shine a light and give just a glimpse of what He has in store for us.  What a wonderful plan!

I remember telling the audience that morning that I thank God every day for Elise exactly how she it.  What I mean by that isn’t that I’m happy with what happened to her.  It merely means that through the biggest sorrows in our lives, amongst the deepest valleys, can come a light that shines brighter then we have ever experienced.  I have been forever transformed by what the Lord has done through Elise’s life.

Each time I see Elise’s life work for the Lord, it brings me great joy and satisfaction.  Although the world is changing as far as the acceptance and support given to children with severe special needs like Elise, I am very aware of those who may struggle to find the value in these children beyond the love felt by their families and friends.  By the world’s judgement, kids like Elise will not ever contribute to society.  We hear stories in the news about children with special needs being abused, discarded, or aborted before even given a chance at life.  

If only everyone could see what wondrous works could come from one simple life of a child who has no idea of their own impact on the ones around them.  No, she won’t excel at a sport, go to college, start a business, become a teacher, or cure a disease.  These are examples of the traditional meaning of the word “contribute”.  What Elise has to give to society is something that won’t earn her a trophy, get her a job, or impress those around her.  Her value, other than bringing me great happiness, is in how Christ uses her life to affect those around her.  

Following the surprise of our van, countless friends and strangers have come to Chris and me to tell us how blessed they were to witness the reveal.  One lady’s words were golden to me.  She said, “This was for all of us.”  

I have been searching for most of Elise’s life to find a group of parents that I could identify with.  Families with kids just like her.  After meeting people with children with Down Syndrome, Autism, various types of brain injury, Cerebral Palsy, and more, I realized that the ideal family for me to connect with just doesn’t exist.  There isn’t another kid enough like Elise for me to find that true camaraderie.  It was such a frustrating search, that I eventually gave it up, resigned to go through this journey alone.  It turns out, this unity I was looking for has been under my nose the whole time.  I am united with every person who prays for my family and Elise, every individual who asks how she is doing, every fellow follower of Christ who has used their time and energy toward showing us love over the last 9 ½ years of her life.  THAT is my group.  THAT is unity.  THAT is enough.  

It didn’t have to end this way for me to see Christ at work.  This was an extremely large, obvious example of what people with a heart for others and a desire for Christ can do.  Receiving the van was a very public, obvious statement of the unity we can all create as fellow believers and human beings.  But, what everyone else doesn’t see are the innumerable blessings that God has bestowed on our family throughout the years.  This van is not where the evidence of God’s grace began for us, and it isn’t the end.  It’s smack-dab in the middle of what will be a lifetime of Christ’s image being seen in my daughter and those who care around her.  

How does a little girl who cannot hear, see, walk, or utter a single word fill a church sanctuary teeming with tears, happiness, joy, generosity, surprise, and the absolute love of the Lord Jesus Christ?  Easy… she just sits back and lets God do His thing!

"Rejoice in the Lord always. 
I will say it again: Rejoice!"  (Phil 4:4)

I am determined to find this somewhere as a wall decal to put over Elise’s bed...

This is how the van was positioned on our stage.  It was behind the black curtain.  Our pastor, John Mark Caton, uses props and large items on stage at times during his sermons.  I thought that was what was going on behind the curtain...

Elise posing for her first pictures with the van

I thought this was an interesting pic.  My step-dad, Jerry, is standing in dismay, while my mom is going to the floor in shock!  She knew, as only a mother could, how important this moment was for her daughter...

Still had not registered in my brain that this just happened, and we had a beautiful van just right for our needs!

First outing... Target, of course!  It was easy-peasy, and Elise was able to sleep through the entire process.  Beautiful...

When I showed up at a Sunday School party last week with Elise at my side, I told my friends, "I brought her because I could!"

Never in my wildest dreams would I have thought I would be so jazzed to have this sticker on my car!

Elise wore a pretty red dress to church this week to match her new ride!  

Our friends who helped start this whole journey, Brian and Bree Knuckles :)

The awesome team of Helping Hope, Inc.  Without these people, we would not have a wheelchair accessible van today.  

A friend of mine passed this school letter along that his daughter wrote as part of an assignment for school.  She and her class friend, the frog, were there when we received the van.  This is an example of how even the youngest among us are listening and watching!

I took a couple of week-old fortune cookies out of my purse to eat the other day.  This is what each of them said on the side that teaches you words.  I thought it was funny... and dead wrong!

My 11-year-old, Lane, was probably the most excited out of us all.  The night before, he opened the sliding door of our old van with a little too much exuberance.  It came straight off of its track.  Chris couldn't get the door to close all the way, so on the way home from our friend's house, I worried that Ty was going to be sucked straight out of his car seat and out of the van! 
 You're off the hook now, Bud...

I walk through the house at random times of the day and want to yell to my family, "Get in the car!  We're going for a ride!"  I find myself just wanting to take her out for no reason at all...