Trading Tolerance For Hope

January 1, 2015.  On the first day of this brand new year, I called 911.  Chris handed me the phone after several minutes of our usual debating on whether or not to make the call.  

He had walked into her room 10 minutes before and was greeted by her convulsing body and lungs gasping for air while she lay in bed.  In the kitchen, I heard his voice carry throughout the house, “Where’s the medicine?!”  I instantly knew what was happening, merely by the alarm in his usually low-key voice.  When it comes to breaking up a perfectly peaceful day in the Haden household, grand-mal seizures never disappoint.

Without fail, they rise up in me the feelings of a calm sort of terror and finality.  This is it.  She’s going.  No matter how many times we witness one, no matter how many times Chris hands me the phone, no matter how many times I go over her medical history with the EMTs, I am innately aware that it could be the last time.  

This one was different than others.  We have pretty much had this grand-mal seizure deal figured out.  Sometimes she breathes through them, sometimes her lips turn blue as her lungs refuse to fill with oxygen. For some reason, this time proved tricky as her seizing body laughed in the face of our magic medicine, forcing us to call for backup (aka: 911).

Holding Elise in my arms, I watched as 6 EMTs flooded into her pink and green bedroom, equipment in hand.  After assessing the situation, they further medicated her with a shot in the thigh, monitored her vitals, and left us to return to life as usual 40 or so minutes later.  (I sign off on them not transporting her to a hospital once she returns to her baseline in these situations.  I’m sure other parents of kiddos with severe epilepsy can understand why I do this...) 

The very next day would find Elise and me in the Emergency Room seeking help for a bladder that has started a cruel game of “I don’t know what I’m supposed to do anymore”.  Not a fun game, by the way.  

While examining her, one of her doctors and I began talking about how pretty much everything in these kids’ lives gets worse with each passing year.  This doctor, who knows Elise very well, looked at me and said something that has found a permanent home in the part of my brain reserved for “things that make me go hmmmm”.  (fellow 90’s teens: try getting that tune out of your head!)

He looked me in the eye and said, “You do well with what most wouldn’t tolerate.”

Hmmmmm….

Knowing this doctor’s vast experience for the past 50 years with kids like Elise, kids better than her, and kids worse than her, I am aware that he has the authority and understanding to find great truth in this statement.  Although I can name numerous moms, dads, grandparents, and other family members who care for their brain injured children with love and devotion, I totally understand where he was coming from.  It was a compliment.  Unfortunately, it is a true statement that scores of parents and caregivers of kids like Elise drop the ball, check out, or just plain give up on life and their child.  It’s the human condition.  Tragic and demanding circumstances such as these can drive parents to divorce, cause loneliness, depression, and a lingering feeling of discontent in those affected.  People are overwhelmed, angry, depressed, despondent, stressed out, deeply disappointed, and, well… human.  

When I replay his choice of words in my head, it kind of makes me sad for Elise.  To others, her life probably does look like something to be tolerated.  Especially to a physician, who sees the absolute worst sides of the life of a brain-injured child, neatly glossed over and hidden from the general public. 

Why did I feel uncomfortable with his compliment?  It wasn’t just the thought of my daughter being something to be tolerated, but it went deeper than that.  The doctor was praising me for something that I owe completely to someone else.  

So much of life is ugly.  What I have discovered in this most trying season of my life is that what at first looks ugly, heartbreaking, and terribly unfair, can actually hold great beauty from other viewpoints.  

My favorite point of view is from high on top of a mountain called HOPE.  I don’t have to climb this mountain weighed down by expensive gear.  I don’t have to buy a ticket to ride up on a gondola.  I don’t have to hire a professional to guide me to the top.  I simply have to decide to be there and there I stand.  From this mountain looking down, I can see it all.  The ugliness, the fear, the disappointment and anger.  I stand high above it all, knowing I am safe from their effects.  Christ has provided me this mountain named HOPE as a safe haven, something to trust in and hold on to as a promise of what’s ultimately to come.  

Just using the word “hope” can sometimes be hard for me because I believe it to be greatly overused.  It’s one of those words that is easy to say while you are happy and thriving in life.  When things get dicey, the mere utterance of this word can elicit an apathetic eye roll.

The Bible says in Romans 8:24-25:  

For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees?  But if we hope for what we do not see, we wait for it with patience.

Bible.org states, “… hope is the confident expectation, the sure certainty that what God has promised in the Word is true, has occurred, and or will in accordance with God’s sure Word.”

When you get down to the actual Biblical definition of hope, you can realize just how powerful it is, and how desperately we all need it.  Should we reserve our talk of God’s beauty, His hope, and gift of grace for only when our feelings reflect them?  Or, should we pull from these truths with even more vigor when what we are going through is the antithesis of earthly beauty, hope, and grace? 

It is so extremely important to hold onto God’s promises ALL of the time… during the Good, the Bad, and the Ugly.  For Elise’s life, and mine as her mother, these following short clips represent what I’m talking about…  Be sure to maximize the view...

(Since I never like to end anything on a negative note, I have changed the order around in this video.  I start with the BAD, move on to the UGLY, and end with the GOOD!)

Warning: Within this video, there is a short clip of Elise having a seizure.  It's not her biggest/worst, but not her smallest/easiest, either.  

From where I'm standing on the top of this mountain of hope, the bad and the ugly will always be there lurking in the valleys.  Like beasts they are clawing at the hillside, growling and snarling in hunger.  My eyes, instead, are drawn to the beauty of the land around them and the safe ground on which my feet stand.  

Where does my smile come from?  Hope in Jesus!

How do I “do well” with what others may not tolerate?  Hope in His promises!

How can I say with all confidence that I find pure joy in Elise as she is?  Hope in the Grace of Christ!

I love this verse...

Psalm 34:17 -  "When the righteous cry for help, the LORD hears and delivers them out of all their troubles."

I don’t love it because it promises an ending to what we are going through with Elise.  I love it because I have trusted what it says and have come out on the other side after crying out for help.  I am able to step over these troubles and relax with a feeling of true contentment and happiness in the place of fear and anger.

These Bible verses are not just words full of false hope or fancy language to me.  They are the Truth and they offer what nothing else in this world can… peace in suffering.  

So much of the time, we create hope out of a false sense of changing something.  For years, I put my hope in having another daughter one day.  I actually drew happiness from this human, earthly desire.  I did this against impossible odds.  Against the fact that we can’t afford another child.  Against the fact that we have literally NO room in our home for a new baby.  Against the fact that my husband wants no more children.  Against the fact that I have kidney disease and another pregnancy would be seriously detrimental to my health.  Despite these overbearing reasons, I still filled myself with this false hope of another girl, like trying desperately to fill a glass with no bottom.  After much prayer, I realized that all this was simply a case of false hope, never to be obtained.  Even if I had another daughter who was healthy, there would be something else to take the place of what I saw as a void in my life.  I decided to hand that false hope right on over to God.  I traded Him.  I traded up for a true hope found only in Him.  No matter what the circumstance, this divine expectation brings true joy and peace.  

Until you stand on this mountain that God directly provides us all, so much can seem only painful, confusing, and downright dismal.  When I was a young girl, my grandfather gave me an intriguing picture that I found fascinating!  I framed it and put it on my dresser to see each day…

               

source

At first glance the picture seems to be of a scary skull, but when you take a moment, refocus your eyes, and truly study the entire picture, it turns out to be a beautiful drawing of a woman sitting at a vanity looking in the mirror.  Finding beauty in this picture only took a simple change in point of view.  Beauty appears from the grace that God gives us in any problem or situation we are facing. 

Heartache and hope share the same path, one pushing the

other ahead.  This was designed for us on purpose, never

to leave us crushed under the weight of life’s trials.  

How else can you explain how I felt just this morning?   Threading Elise’s tight little arms through her sweater as I got her dressed for the day, I looked down at her eyes, staring out into the morning, unable to see me.  All I saw was pure beauty.  What a wonderful  design for me as her mother to see perfection in my child who is in no worldly way perfect.  Not even close. 

Nearly every day for the past 5 or so years, I have been in the habit of telling Elise she is “my beauty”.  She can’t hear my words, and doesn’t see the affection in my eyes, so I guess I tell her this more for my own benefit.  It helps to continuously remind myself day in and day out that Elise’s brain injury and all that come with it do not define my relationship with her.  That’s entirely up to me.

Anyone who has known me for more than 2 seconds is well aware of the fact that I love to put the best picture forward when it comes to Elise.  I find great joy in dressing her in pretty dresses and glittery shoes.  She is rarely seen in public without earrings and a bow to match. This is how I am creating a beautiful picture of my daughter in an earthly, outward fashion.  This type of beauty doesn't even begin to compare to the genuine beauty that I see in her life on a daily basis.  At home, she is not primped and dolled up.  As she lays helpless in bed, is fed through a tube, is medicated throughout the day, receives therapy, and is consoled when crying, she is stripped to her authentic self.  These are the times that I look at her through Christ's eyes and experience the true beauty that her life has to offer.  

I found a picture that I made back when we were fundraising for our wheelchair accessible van.  A friend of mine that was heavily involved in the effort to raise funds for this vehicle asked me to create the word “HOPE” in whatever way I could think up.  For their picture, she used herself, her children and her husband to form the letters with their bodies bending into positions on the floor.

When I thought of what the word meant to me, and ultimately to Elise, I came up with this...

(Medications, wheelchair wheel, feeding tube/syringe, arm/leg/hand/foot braces)

Creating a word such as this out of objects that would usually represent the exact opposite merely came down to viewpoint.  When put together in this way, items that are typically reminders of what is faulty with Elise’s body and brain became a beautiful word overshadowing any imperfection that these individual objects usually hold.  It’s an awesome thing when you can step back, take a moment, and refocus on finding the beauty in this world amid the beasts that exist all around us.

I wrote a few years ago in a post titled, Lullaby and Goodnight about hope...

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…

For as long as Elise blesses me with her presence as my daughter here on earth, there will be more 911 calls, more hospital stays and lengthy illnesses.  She will keep me up at night like a 10-year-old newborn and we will leave stores, restaurants, movies, and church because of her screams.  I am sure that I will cry a million more tears over her as I watch her contend each day with a brain and body that do not agree.  These are all guarantees.  The ultimate assurance given to us, though, is one that will always trump whatever life has to dish out.  

Isaiah 40:31:

But those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

My goal as Elise’s mom for the past 10 years has been to find the beauty, joy, deep love, fulfillment, purpose, and value in Elise's life.  No matter what is to come for the next 10 years, I will continue to pray for the ability to find God's Glory in the messiest of situations.  

I refuse to believe that our God, who gives us genuine hope, created ALL of this beauty within our pain merely to be tolerated.  

___________________________________________

OK, so these aren't examples of the heavenly hope that I wrote about in this post, but here are a few examples of my everyday "earthly" hopes that make me smile...

I “hope” I learn to decipher Elise’s cries better in the future.  Hope to never again rush the entire family away from a restaurant to an after-hours clinic because of Elise’s cries of pain unless 1st doing a thorough body check!  My “not-so-amused" family, (mainly daddy), waiting to find out if Elise is sick.

  Only AFTER the nurse took all vitals and swabbed her for strep and flu, I discovered that her pain and discomfort was coming from a belt on her wheelchair pinching the CRAP out of her back!  Major mom/daughter communication fail…

I “hope” Ty will FINALLY learn to ride his bicycle without training wheels before he goes to college...

I “hope” I can find a better set up at my brother’s house next Easter for Elise.  I’m not sure this is the best positioning system for a child with cerebral palsy to keep them on a couch!

I “hope” my boys learn to play well together one day without the aid of a technological device… (they play a lot together without technology... just not as well as I had hoped!)

I “hope” this person who parked next to our van and took up all of the handicapped ramp area ran out of gas on their way home! (I mean, come on people!)

I “hope” my 12-year-old son, Lane, doesn’t BLOW UP MY HOUSE with his homemade bunsen burner!

I “hope” that Ty always remembers our picnics in his treehouse... 

(and not my ridiculously huge sunglasses!)

I "hope" Elise never outgrows her Daddy's lap...

(she's working on it!)

I “hope” this was just an oversight by Ty in his kindergarten class this year!

(Orange, Orange, Orange, Green?)

I hope Lane continues to grow in empathy and compassion toward others as a result of being Elise's big brother...

I hope Ty outgrows his "toilet paper hanging out of a shower cap" routine... 

(It's time, son)

I “hope” my boys never forget how much fun it was to take a bubble bath in GiGi’s tub together!  

I “hope” Elise and I can always find a reason to laugh together! (Although unaware of the funny wig and glasses, she was enjoying the attention…) 

A picture I took at the old railroad tracks in Allen this summer.  How true this is!

This song has been played in my house hundreds of times by now.  It is called "Hope in Front of Me" by Danny Gokey (For those who watch, think: guy from American Idol Season 8).  Please take a moment to listen and read his lyrics... they are very beautiful!   

AstroTurf

My husband, Chris, has created a backyard oasis for our family.  Not so much with lots of money and state-of-the-art gadgets, but more with his personal time, energy, and love of the outdoors.  In our backyard you will find a growing garden- created and cared for by Chris and his boys.  A homemade fire pit gives our cold nights somewhere to make s’mores and sit to talk.  Lattice work around the porch is covered with vines of ivy, crawling their way to an overhead canopy providing shade on sunny days.  A fort and small treehouse were built by father and sons, using their imaginations and spirit of adventure.  Among all of the additions to our backyard that have made it a peaceful refuge from the real world, the flourishing green grass has to be my favorite part.  

We all know that smell from childhood of freshly cut grass.  My brother and I played Red Rover, Freeze Tag, and Red Light/Green Light with the neighborhood kids until being called in for the night.  I practiced gymnastics for hours in the grass of my backyard.  I used to pick the individual blades and turn them into vibrating kazoos.  Anyone else do that? There’s just nothing like walking through the yard barefoot and lying down on nature’s mattress. (Except now as an adult, I am more aware of what lies within the grass itself, forcing me into chairs instead…)

There were always backyards that were larger and more adorned than mine growing up, and this continues to be true today.  There’s no doubt that many houses all over my town have yards that trump ours in beauty and landscape design, money poured into them, sheer size, and the green hue of their grass.  Still, others have lawns that are sun-scorched, brown and dead.  Overgrown trees shade the grass from the needed sun, leaving it to turn to dirt and roots.  

This directly lines up with life in one major way.  No matter what your backyard looks like, it always seems like the grass is greener on the other side.  So it is with life as well!  For some, this may be true in only a few small ways, but for others, this view can tear into their own personal existence.  Whether you are wealthy, poor, successful, struggling, healthy, sick, beautiful, or average, you find yourself looking into other people’s lives, and seeing something you don’t possess.  

Life with Elise can exacerbate this belief.

As her mom for almost a decade, my eyes have been forced open to the raw reality of what it means to have a little girl that doesn’t fit in any traditional “daughter” mold.  Having Elise as a daughter, sister, granddaughter, and niece in this family of ours has changed the rules to this game called life.  It’s hard to play a game that you grew up playing, and thought you understood, only to realize that the rules have changed, the game board is now missing vital pieces, the cards are all mixed up, and the timer is broken!  Only through the grace of God have we learned how to go about daily life without quitting the game or calling “NO FAIR!” when others seem to move ahead or draw the prized card.  For me, that prized card is a whole, healthy family.  Simple.  

That’s me, on my tiptoes, peering into everyone else’s backyard with envy.  This is my honest truth, but what do I do about it?  Well, being on my tiptoes gets tiring pretty fast.  With prayer, I go to God and ask Him to take me by the hand and lead me away from that fence and further into my own yard.  It’s there that I can fully enjoy what He has given me.  Yes, I can still hear the sounds of life coming from every direction beyond my lawn, but the more I fix my eyes on Elise and my family, the quieter the distractions become.  It just takes a desire for change… a willingness to shift my focus.  

Comparing your life to the lives of those around you can roll through your world like a speeding train.  If you’re not careful, you can purchase a ticket, find your seat, and get mighty comfortable on that train all before you even realize it.  Before long, the life you do have is passing you by at 100 miles an hour like a blur through the window.

Take Facebook.  I personally love Facebook.  It has served as a never-ending reunion with people I would otherwise never see again after throwing my hat at graduation.  It has connected me with friends I see often, people I shared my toys with in Preschool,  college roommates,  my elementary school teachers, and next door neighbors from when I was 5-years-old.  You just can’t beat that!  With all good things come some bad, though, and it is our job to separate the two.  After a typical day of what can seem like nothing exciting really happening in my life, I will sit down at the computer to check up on FB for a minute before fixing dinner.   

Well, crap… It looks like everyone else was up at dawn, preparing for THE BEST DAY EVER!!!  Packed full of unforgettable family moments, visits to educational and entertaining venues, and finished up with getting TONS of chores and projects done at home to round out the perfect day in history!  

Here’s where the problem lies.  We forget that this is ONE day in the life of a friend.  Not every day.  We all have great and productive days, it just seems as if everyone is having them all of the time b/c of the posts we see on social media.  This is not to say that I don’t post fun family times on FB.  We have soccer games, go swimming at GiGi’s house, take road trips, play family games, and I even get a few projects done here and there.  But, for the most part, I rely on my husband’s level head, and lack of a FB account, to keep me from wondering, “Why aren’t we able to do all of that?!”  This is an area where I have learned to water the grass in my life.  I have purposely worked hard toward changing my train of thought, and instead I am able to see things from a perspective that doesn’t leave me thinking, “I wish I had…”, or “It sure would be nice to be like…”  

This sort of glazed-over view of life is not reserved for Facebook alone, but creeps into our homes as well.  Over the last year, I have worked on a “picture wall” that I desperately wanted to create in our front room.  Looking at that wall paints a picture that we are the coolest, happiest, most loving family in town.  Maybe in Texas. The family portraits that hang on our walls are as good as it gets.  They are a snapshot in time, not accurately reflecting our true lives.  That’s WHY we hang them on the wall.  Why would we want to look at reality?  We experience that all too often already!  

On the wall:

Reality: 

(I actually came home from Bible study one night to find her like this.  Nice job, daddy!  She was happily sleeping, but still...)

Sometimes, though, the peeling back of this facade can be jarring and disappointing, threatening what we think we know.  When I was growing up in the 80’s, The Brady Bunch was my absolute favorite TV show (just slightly above Punky Brewster, Knight Rider, Little House on the Prairie, Airwolf, and Diff’rent Strokes.)  I could dominate in a Brady Bunch trivia contest after all of my years of watching and re-watching every episode of that show.  I loved their family, their house, and even their backyard.  I was, and still am,  a fan of everything “Brady”.  As I grew older and learned about how television shows were made, I remember feeling so disenchanted by it all.  It only takes watching one behind the scenes documentary or entertainment show to dissect all of my prior thoughts and emotions toward that show into a pile of disappointing reality.  Not only was it all fake (obviously), but the kids didn’t all get along,  the mom was a bit of a naughty vixen type in real life, and the dad turns out to have fought mercilessly with the show's creator and producer.  The crushing of my childhood image of this show really began when I was still a young girl and was told that the grass in their backyard, which I assumed was a real backyard somewhere in America, was outfitted with AstroTurf!  You mean the potato sack races, games of football and even the teeter-totter contest were all done on FAKE grass in a FAKE backyard?  Good grief...

So much of what we see and desire from beyond our personal viewpoint isn’t real grass anyway.  It’s like the Brady’s backyard.  It’s AstroTurf.  It isn’t reality.  We see and believe mere snippets from the lives of our friends, extended family, others in our community, people on television, movie stars, and strangers we will never meet again.  Envy doesn’t begin and end at just possessions or lifestyle.  It can be about ideas, marriages, health, social status, kids, beauty, body image, work, and on and on. 

Chris bought me a chalkboard for Christmas that hangs in my kitchen with the words Verse of the Week on it.  The idea is to write a new verse to memorize on the board at the beginning of the week, see it every day, commit it to memory and start over the next week.  I should rename our board to say Verse of the Season, seeing how that’s how long our verses stay up in order to be put to memory!  My 11-year-old, Lane, finds no trouble in remembering the verses (show-off), and loves to pick the next one.  His latest pick showed up a few weeks ago.  It reads:

“A heart at peace gives life to the body, but envy rots the bones.”  

Proverbs 14:30

Not only is this an easy verse to memorize, it also offers up a great visual picture of a Biblical truth that should be taught to our children at a young age.  I love the thought of saving them some unnecessary grief in their lives as they grow up.  What is just as important as the verse itself is understanding that this is something that you can actively and frequently ask for from God.  A heart at peace is yours for the taking… no matter what your irritation, painful experience, disappointment, heath crisis, or overall upsetting situation. 

There is NOTHING peaceful about life with Elise.  Nothing.  That’s not what my goal is, though, when I think of peace in the sense that it is written about in God’s Word.  After asking God for a heart at peace regarding all that is going on with Elise, as well as with what I may see in other families that I don’t have, I can truly tell you that He provides it.  

Our thirst to seek out what belongs to others doesn’t just stop at possessions, physical beauty, and life circumstances, but it manages to sneak into our salvation as well.  During a conversation between some of my close friends and me, the subject of testimonials came up.  Several of these Christian, faithful women expressed a sort of disappointment in the fact that they had “boring” testimonies.  Their experiences of accepting Christ did not include a certain day and time that they can recall.  They didn’t have a conversion from being an active “unbeliever”, one that lived away from Christ, to a believer with a memorable story to tell their children and grandchildren one day.  These types of testimonies are among the most inspiring, because of the way they display such a transformation, often creating completely opposite bookends to the story of one’s life before and after Christ.  

In the shadows of the youth groups, women’s and men’s Bible studies, and sanctuaries all over the world, there are people who are in some way envious of these tales of conversion.  Although I am a member of this club in the fact that I do not have an inspirational account of asking Jesus into my heart, I have learned to step out of the shadow of this deceptive way of thinking and to appreciate my story as one that is just as genuine and important as those that would draw tears from most. 

I asked my friends what they would want their own children’s testimonies to be.  Do they wish their sons and daughters to live a life apart from God, not knowing Him, questioning His existence, or challenging His Word until an eventual coming to Christ, just for the sake of a good story… an inspiring testimony?  Or, like me, do they pray that their children look back at their life and proudly announce:

 “I have ALWAYS known Christ.  Since I was a child, I just can’t remember ever being apart from Him.”  

When looking at it this way, it is easy to see how foolish we can be in our attempts to devalue even what is most vital in our lives… our salvation.

Personally, I think of my testimony as being more about the places that I have seen God the most in my life.  The most significant of these would have to be Elise.  She is my testimony.  We all have or will have a personal testimony that has no room for comparison with anyone else’s.  This must be God’s way to show us our own uniqueness in this enormous world of ours.  He gives us what He desires, leaving us to hopefully find contentment without comparison.  

Several months ago, about an hour after putting the boys to bed, I went in to check on Elise.  I was surprised to find Lane in bed with her.  When I questioned him on why he wasn’t in his bed, he said that he had been reading a biography on Helen Keller in his room and he felt like he wanted to be with Elise.  I took the opportunity to snap a few pictures of them laying side by side.  This is a rare occurrence these days, but was reminiscent of the years when they were little and spent more time together.  While he enjoyed stroking Elise’s hair and holding her tight, little hand, he said, “I wish she was more like Helen Keller.”

Talk about a phrase NEVER muttered by ANYONE EVER… until now!

To Lane, though, this comparison made sense.  Being more like Helen Keller would be better for his sister.  He has a firm grip on what to dream for her.  It was interesting to me that he didn’t say he wished Elise could be like other typical little girls- that she could see, hear, walk, talk, and so on.  No, he sees those goals as beyond his sister’s yard.  

Lane was finding envy in something that the rest of the world would see as the complete opposite. Striving to be like Helen Keller seemed more appropriate to him… obviously impossible, but still something to be safely dreamed about.  

It was innocent enough of him to want more for his sister, even in a way that seemed closer to obtain for him.  But, this shows us how absolutely far the tentacles of covetousness can reach.  I don’t blame Lane for his feelings and desires for Elise.  He only wants a better life for his sister.  Coveting what Helen Keller could do and who she was, like all acts of envy, is a natural human thought process... a disappointment just waiting to happen.  This gave me a great opportunity to talk to Lane about how I have to keep a constant look out for times of wishing Elise were different.  We talked about contentment and joy in even the most painful and discouraging circumstances.  

Christ is always right there ready to smack me across the head when I start to feel myself melting into heartache over the life Elise has to live, as well as our life as a family with her.   I’m not talking about times that I want her pain to go away, or her seizures to stop.  Praying and desiring for her to find comfort and have a better quality of life are obviously expected.  I’m referring more to the times that comparisons to other families around us can threaten to steal my joy.  I whole-heartedly thank Christ for the “smack-downs” that he has provided me when I become trapped in this thought process.  I will witness a child in a waiting room that needs 3 adults to keep him from escaping or tearing the room apart.  I hear of a mother with a child much like Elise, but with the addition of major health problems on top of the brain injury, landing them in the hospital for weeks at a time.  I meet a family with a severely brain injured child, but no family or church behind them as support.  All of a sudden, my daughter sitting in her wheelchair next to me doesn’t seem so bad after all.  Of course, her situation is bad, but witnessing other people’s realities can quickly tint my view of our life with Elise a rosy shade of pink.  

There’s definitely something to be said for praying for contentment.  I wrote about that here.  But, you just can’t hand that off in a prayer and expect to not play a part in getting there.  At what point do you do something about it yourself?  It’s difficult, not fun, and downright opposite of how we have been taught by the world.   The truth of the matter is, though, that you have to actively work toward something better.  It is so easy these days to stand looking at everyone else's paths and how they seem so easy and smooth compared to what you may be walking through.  Boy, do I know something about that!  I am dedicated, though, to care for my path, with prayer, time in the Bible, and hard, personal work on myself, in order to travel easier on it.  I know this is what so many others are seeking as well.  Work on it…  water your flowers, pull your weeds.  Get help where needed, but don’t close your shutters, blocking your view of the mess in the back.  Eventually, we will all have to answer for it. 

1 Thessalonians 5:18 tells us---

“In every thing give thanks: for this is the will of God in Christ Jesus concerning you.”

The way I try to apply this verse to my life, in particular, is to stay aware of the difference between being happy/giving thanks for something, and being happy that it’s happening.  I will loudly proclaim that I am not at all ok, happy, or thankful that Elise isn’t the kind of little girl that I see in other families. That fact does not have anything to do with me being thankful to God for her, and being happy as her mother.  This isn’t a natural, human response.  I specifically ask for it, and then I receive it.   What are the things God has graciously given to you?

My husband took the time to carefully care for and nurture our lawn.  He put in the work to build the clubhouse, plant the garden, and patiently water the grass.  It’s the same with our lives.  We can take the lazy path, only looking over the fences into other’s lives, or we can take the time and effort to work on our own lives, making them pleasing to God and a testimony of His love.  

I am dedicated to watering my own yard, and to stop judging my life by the Astroturf down the road.  

This is our backyard that Chris has enjoyed nurturing...

Just kidding, this is a picture my brother took at Yellowstone National Park!

THIS is our actual backyard.  Not quite as grand, but our own personal sanctuary!

Fort Woodmoor

This is “Fort Woodmoor" (Woodmoor is our street).  It is a favorite hangout for kids of all ages in our neighborhood.  The boys have had a blast helping their dad build and add on to it!

Every time I look at our garden, it reminds me of what can come out of a pile of mud if you are willing to do the work. (The mud in your life can manifest itself in an endless number of ways.  We all have a mud pile somewhere).  Instead of being irritated that the previous owners didn’t grow a garden, or that some people I know had ones twice this size, we decided to improve ours ourselves.  It took a desire to change what we had to something we wanted.  I will admit that the boys, Chris, and PawPaw did all of the work, but I sure benefit from it.  It is now a beautiful garden that has produced all kinds of foods for us.  What started off as a bunch of nothing was turned into something gorgeous and useful!

Gross

 

Lane and his friend, Andrew, getting ready to work!

Beautiful, and well worth the effort!

In the yard (and life) that we have, we try to smash in as much fun as possible...

Giant Jenga

Racetrack made of PVC pipe... 

(cheap-o, Texas summer fun!)

Slip N' Slide made out of Elise's old therapy mat.  Just add water and soap!  

A warm and quiet place for Lane and Chris to have talks and the occasional Bible study (and eat S'mores).

A view from my yard.  

This is a picture of the sky God created for each of us, visible from every yard (life) in town...no matter how big, small, lush, dried up, mowed, or overgrown.  We ALL have the same view of God’s grace and power if we take our eyes off of others and look up!