The Big Red Marshmallow

“Hey!  How are you?”

“Great!  How are you?”

“Good…good…”

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 inspiring...energy 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...  

My Privilege

I passed him and his wife every Sunday for years.  Each week, the elderly couple would enter the sanctuary, the wife obviously being helped along by her mate.  I watched over time as she regressed from walking, to shuffling, to sitting in a wheelchair, pushed by her husband.  Each Sunday, they sat in the back of the church near my family.  He tended to her every need, and spoke to her in hushed tones.  She was clean and well kept, obviously the object of his love.  We didn’t speak, but instead shared smiling glances and cheerful nods of the head.  I never would have guessed, at the time, that this older stranger and I would have so much in common.  

Pulling up to our church several weeks ago, Chris and I determined that Elise needed a diaper change before going in.  With a growing girl still in diapers, this creates a challenge with not many options.  Chris laid her in the back of the van, and I used a blanket as a shield between her and the rest of the world.  My favorite gospel CD, (Angel Band: The Hymn Sessions by Andrew Greer), was playing as we worked.  Our concentration was broken by the sound of a new voice joining in on the old hymn, obviously familiar with the words.  As I turned around, there stood the man in a state I had never seen him before -- alone.  

We introduced ourselves, and gave each other a hug.  When I questioned him on his wife’s whereabouts, he tearfully gave me the bad news.  In his words, “She went home to be with the Lord on Tuesday.”  

After giving him my condolences, I told him that I was sorry for his loss, but also happy for her to be with the Lord now.  I wasn’t sure if I should have said it that way, but my fears were assuaged when he looked me in the eyes, tears filling his, and replied, “I know you understand that.”  

It was then that I knew that we felt the same, something only few could comprehend.  We could relate.  He knew exactly what it’s like to love someone so much that you want them here with you forever, yet at the same time, you want them to be restored to health and pain free with their Creator.  

I slowly realized that this old gentleman and I had some unexpected similarities in our lives.  Not only did we share in our feelings of life and death for our loved ones, but we also both knew what it was like to spend years with someone who was completely dependent on you and others around them.  

Dependence:

1.  Relying on or needing someone or something for aid, support, or the like. 

2. reliance; confidence; trust: 

I’ve never been the dependable type.  Not only did I leave a friend’s child at preschool several years ago, (sorry again about that, Cason), but just this year I completely forgot to pick my own 4-year-old up on his second week of preschool.  I miss doctors’ appointments, show up at wrong times for meetings, dentist visits, and even Bible study.   Just an hour ago, I plucked my 11-year-old out of the backyard of a neighbor, threw him in a friend’s minivan, and yelled, “I forgot about your piano workshop!”, as his panicked and confused face drove away.  I’ll make it up to him tonight with a later bedtime or extra dessert.  I never claimed to be Carol Brady.  The way I see it, I fall right between the mom from Malcolm in the Middle and Roseanne.   (Maybe that’s an exaggeration!)

I depend on family members and understanding friends to alert me to upcoming events, or double check that I remember where I’m supposed to be (Keep it up, ladies!).  When it comes down to it, I have had to learn to be more dependable.  When taking complete care of another human being year after year, there is not much room for error.  Thankfully, I have my act together when it comes to caring for Miss Elise.  

I thank God for my daughter’s complete dependence on me.  OK, I admit that is a strange thing for a mom to say. I have tried to make it a habit over the years to thank God for Elise and everything about her.  This does not mean that, if given a chance, I would not rather her be restored to perfect health, resulting in her complete independence.  I would give my life for that.  But, if she must be who she is on this earth right now, this is my attitude.  It is something that is extremely helpful to me, constantly tugging me away from prayers filled with sorrow.  She is who she is.  She can’t do what she can’t do.  Let’s find the good in all that she is.   

I take complete advantage of Elise’s dependence on me.  I use it to form an unbreakable bond that most mothers of typical children don’t know, and I will never have with my boys, either.  Year after year, her dependence on me means we spend a large amount of time together, one-on-one.  She relies on me and others for her every need.   The obvious ones are for food, water, diaper changes, and her healthcare.  Beyond that, though, Elise’s dependence on others runs much deeper.  If her arm or leg becomes twisted or stuck in a bad position, she can’t free herself.  She depends on us to decipher each cry and know what it means.  If she chokes on her own saliva while lying down, she can’t turn over to clear her airway.  When an eyelash finds its way into her eye, there is nothing she can do to help herself.  She is at the bottom rung of independence, leaving her to rely on the people around her to care and react for her. These personal-care needs that look like a huge burden on paper, are actually the catalyst that bring us closer together.  

I see Elise’s total dependence on me as a gift.  Yes, it can be daunting.  There’s no talking, joking, shopping, or school projects.  There’s no need for punishing, questioning, teaching, or training.  Ours is a very basic relationship, made more dynamic through care.  

My favorite night of the week is Wednesday.  Chris takes the boys to Lane’s soccer practice.  This leaves me with only Elise to fill my time.  I feed her, bathe her, and wash her baby face.  Then, I massage her tight muscles with lotion, put mousse in her hair, and brush it for a half hour (She would sit for days if having her hair brushed.)  I put her pajamas on and brush her teeth.  Next I stretch her arms, legs, spine and neck.  Putting on her leg braces, I settle into a chair in her room for some rocking.  

Those are the best times I have with my daughter!   I’ve got all I need from her, right there in her little room.  I have her, pure and simple.  This is how I get to know Elise.  This bond we have formed is a relationship unique to us.  I will not dwell on the fact that she is completely dependent on me, but instead I will delight in what that vulnerability brings.  

This type of need mirrors our dependence on Jesus Christ.  I have found that, just as Elise would suffer if she didn’t have us to rely on for every area of her life, we too greatly suffer when we turn from our dependence on Christ, foolishly declaring our independence instead.  Forgetting to lift up our problems and worries to him, we choose to needlessly carry them around on ourselves.  Going on with our lives, we make decisions based on what feels right to us, when He holds a much better plan, just waiting to be called on.  Nobody can do for me what the Lord can.  God has provided for me an illogical peace when it comes to Elise's life.  

Elise’s life has also taught me that reliance on others can be a beautiful thing.  I admit to a strong dependence on my husband, my friends, my church, my family, and most importantly, the Lord.  Don’t fool yourself into thinking you need no one.  In our constant struggle to prove ourselves independent, we lose the very necessary dependence that our eternity relies on.  

I’ve always been slow to ask for help from anyone outside of family.  Thankfully, we have been surrounded by people who have no problem forcing it!  Over the years, our Sunday school class has propped us up by bringing meals, babysitting the boys, helping with fundraisers, praying for our family, and even helping out with therapy in the earlier days.  Neighbors watch her while I run to pick something up, or sit with the boys in case of an emergency requiring a run to the hospital.  The thousands of unspoken prayers lifted up for Elise by friends and strangers alike carry much weight when it comes to getting through each day with a smile on my face and joy in my heart!   As much as I am depended upon by my daughter, I have found my own personal sanity hinging on each and every one of these people, eager to help any way they know how.  

I now know the elderly man’s name.  Mr. Hurst and I speak every time we pass at church, and each meeting leaves me a little wiser.  Small talk is not welcome between the two of us.  His words to me not only lift my spirits, but they solidify the fact that I have much to learn in my own personal journey with dependence.  In a past conversation, I once mentioned that caring for his wife/my daughter was and is our job.  He improved on my wording by correcting, “It is not our job, it is our privilege.”  What a wonderful way to look at something that the world may see as demanding, exhausting, and a potential life-impeding situation.  Instead, the word “privilege”, paints a truer picture of our realities.  It is my honor, my pleasure, and and my desire as Elise’s mom to be the one she relies on throughout her life.  

Other than just getting to know my new friend at church, I have delighted in the ideas that he has planted in my consciousness, always leaving me with more understanding of God’s role in my situation than before we talked.  I am eager to share what I learn from him with my kids.  Certain words shared from the older to the younger, will find a permanent home in the wisdom passed down from each generation to the next.  

When speaking with him several Sundays ago, a friend walked up and complimented him on his unending dedication and caring of his late wife.  He responded that it’s not “who” we are, but, more importantly, “whose” we are.  I know “whose” I am, and so does he.  Even with this knowledge, it is important that we are never to forget it.  This proves to be a strong truth to lean on in our hardest of days.

What played out in their lives was not what they planned on, and I surely didn’t see this as my future (Who out there hasn’t been surprised with how something in your future turned out?).  How wonderful that my future has included a child who is blessed to bless others!  She is my testimony, as his wife was his.  

What an unlikely pair we are!  He is a senior citizen, and I am still raising little ones.  He cared for his aging spouse, while I’m attending to my little girl.   It’s true that most of us usually surround ourselves with people who are like us in age, lifestyle, or beliefs.  I find myself walking into circles of friends, only to gravitate to the outer edges of the group, not able to find connections that satisfy all the areas of my life -- mainly being the mom of a severely brain-injured child.  Essentially, there’s not really anyone around me that's like me, experiencing the same things with their family.  Other than a couple of FB friends who have kids like Elise, I am alone in this land of extreme special needs.  It’s a magnificent thing that the two of us, Mr. Hurst and I, with such opposite looking lives, can find themselves sharing not only an experience, but also a trust and love of God.  This is where our commonality lies.  Isn’t that all that matters in the end?

Whether it’s a man attending to his wife in their golden years, young parents caring for their growing baby, a weary mother and father supporting their teen through tumultuous years, or a family like ours, looking after a special-needs child, we are all the same when it comes down to it.   We all depend on others, and others depend on us.  Even if you aren’t aware of that fact, it is true.  If you allow it, it can come full circle.  I have decided to start trusting God more for what I need, just as Elise relies on me to provide for her physical needs, affection, comfort, and companionship.  

In an odd way, I will miss caring for someone as fully as I have for Elise when she is no longer here.  No matter how many more years I have of changing her diaper, tube feeding her, dressing her, undressing her, bathing her, brushing her teeth, transferring her, taking her to doctors’ appointments, consoling her, medicating her, stretching her, worrying about her, and above all else, loving her, I will do it with happiness in my heart.  This is a happiness that comes only from knowing who gave her to me, trusted her to me, and will one day take over for me.  Thank you, Lord, for showing me my dependence on you, through my daughter’s dependence on me.  

Elise with her new friend, Mr. Hurst.  

Elise depends on me for comfort when she is sick...

She depends on caring friends to connect with her...

She depends on the kindness of anyone willing to brush her hair!  (an absolute favorite activity)  

Elise depends on others for some much needed TLC and companionship...

She depends on us to medicate her...

And feed her...

Elise's dependence on us for eating will never end.  I thoroughly enjoy feeding her by mouth (puree), as it is an uninterrupted time of closeness for us.  Tube feeding her is second nature to us by now.  I thank God for Elise's feeding tube.  Without it, life would be much more difficult (she needs it for all liquids and medications). 

Like any other child, she depends on her Mama for some snuggle time...

She depends on those who shower her with love and celebrate her life...

She depends on us to include her in our lives...

What do I need in return from Elise?  Not much.  I do, though, depend on her to give me one of these every once in a while... I couldn't ask for anything better!