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!

Uniquely Theirs...

I’m always thrilled when one of my boys shows an interest in his sister.  It takes an effort to form a bond, create a relationship, or even share a moment with Elise.  Lane was almost 2-years-old when his sister was born, and Ty came along when she was 4.  Both of the boys hold memories that have always included her.  

It was vital to me early on to make sure to “humanize” Elise for her brothers.  Her specific disabilities create a perfect environment for Elise to be completely ignored as a human being.  From a baby or young child’s perspective, she can easily be regarded as more of an object, and therefore treated as one.  Elise isn’t in on our games of Candy Land, or helping to make cupcakes for dessert.  She doesn’t share in their joy of Christmas Eve, or delight in Easter egg hunts.  As a matter of fact, her brothers won’t share one memory of Elise’s direct involvement in most family traditions and fun times.  Sounds sad, but it’s the truth.  Realizing that this would be the case for our boys, I set out to do my best to make sure that Lane and Ty would have some sort of personal relationship with their sister.  It would be different, but it would be uniquely theirs.   

The best thing about Lane, Elise, and Ty, is that they are not just brothers and a sister by nature, but they are also infinitely tied to one another as brothers and a sister in Christ.  We talk often about how Elise was given a soul by God, and they have a firm understanding of His place for her in this world.  It touches them where they live.  We pray for her, care for her, and learn from her together as a family.  

Elise is Lane’s little sister by less than 2 years.  They grew up together, and he does not remember life without her.  He knew her as a baby, toddler, and little girl.  They are close in size, and look alike at times.  Lane was there through the hardest of days, and has watched her grow through each of her challenging stages.  

He is less hands-on with Elise, but more emotional and empathetic.  Wishbones, birthday candles, and personal prayers always hold a place for his sister’s well-being.  I don’t think he has ever used a wish on himself, thinking it wasteful not to consider his sister first.  

When Lane was about 3-years-old, he became Elise’s spokesperson, an expert in everything “brain injury”.  We would be in line at the grocery store, and Lane would seize the opportunity to tell the cashier all about his sister.  Nevermind the mispronunciations of “epilepsy”, “cerebral palsy”, and “Cytomegalovirus”, I was just impressed with his eagerness to share his sister with the world.  

Elise is a big sister to Ty.  For years, he would call her baby sister, confused by the title of “big” and how it was mismatched with her state of being.  She was clearly bigger than him in size, but even the smallest of kids notice that Elise is very “baby-like” in her behavior.  I never corrected him, and slowly he picked up on the fact that it was he, not she, that was the younger sibling.  I have come into Elise’s room early in the morning to find Ty with her, dragging blankets from the hall closet to create a sort of fort around her in bed.    Chris and I will often look in the rear-view mirror of the van, and see Ty holding Elise’s hand between his car seat and hers.  This gesture is the sweetest of all, because it shows that he cares for her and genuinely desires a closeness with her.  It’s hard to form a bond with someone who isn’t involved on the other end.  Elise will not reach out for his hand, she will never climb in his bed.  He knows this, and takes on the responsibility himself to forge this connection between them all on his own.  

Unlike a typical sister, Elise won’t need protection from school bullies or neighborhood taunting.  She has no idea what people say or do around her.  Instead of protecting her feelings or physical body, her brothers will defend her dignity and identity as their sister.  Their protection will have more to do with them then it will to do with her.  

Last year, as Lane walked home from school with a group of friends, he was introduced to something that he will inevitably have to face for many years to come.  He was talking with a close friend and Elise’s name came up.  Most of the kids on our block know her, love her, and are used to her.  They are all stared-out, and the mystery that surrounds her no longer holds their attention.  She is just Elise.  

One of the kids in the group was new to our street, and when he heard Elise’s name, he told Lane, “Your sister is retarded.”  Our family finds no fault in that word, it is a true medical term.  This kid said it, though, in a derogatory way, emphasizing the word as if it was something to be made fun of.  Lane quickly and calmly told this new boy that his proclamation was unnecessary.  Everyone was aware that Elise was “mentally retarded” and there was no reason to say it that way.  The boy heartlessly replied, “Hey, it’s not MY fault your mom had her that way!”  

Lane is very much a peacemaker, and recognizing where this kid was taking the conversation, he decided to end it.  God has certainly equipped him to manage himself in these situations by giving him a thick skin when it comes to Elise.  Now, Ty is another story.  I’m pretty sure there will be a bit more of a commotion when this happens with him.  Maybe I need to start working with Ty now on his management of the cruel words from others (Thankfully, they are VERY few and far between)!  

We have found that it’s easier to include our boys in all that we know.  Even if we had wanted to shield them from the harsh realities of their sister’s life, it would have been a daunting task at best. Her brothers are there as the doctor talks to me about getting a DNR (Do Not Resuscitate) on Elise as a precaution.  They hear their dad and I talk with each other and doctors in hushed tones about surgeries, serious concerns, and subjects usually reserved for adults.   Not only is it true life, but it’s a constant lesson in the realities of the life of someone who is struggling and needing constant care and love from her family.  

I certainly wish that my boys could experience life with a typical sister.  One who is in on the backyard play, kicks them out of her room, and forms secret alliances against mom and dad.  I had that growing up with my big brother, Brent.  We are almost exactly as close in age as Elise and Lane.  My entire childhood is littered with remembrances including my brother in good ways and bad.  We shared our entire youth, and fought just enough to stay true to the brother/sister rivalry so many of us had in our families.  

When it comes to having a brother/sister relationship, Lane and Ty do the best with what they have.  Whether they are retrieving a dropped paci, brushing her hair in the car to keep her happy, or hitting her on the head in a restaurant for much needed sensory stimuli, these brothers -- big and little -- are learning.  The lessons they receive from living with Elise are priceless. 

These two boys have shared a house with a very special young lady who they call “Sissy”.  When Lane and Ty are old and grey, I pray that they can get together and share their memories of life in our house during these wonderful years of their youth.   I am overjoyed that they will remember Elise as a person, and celebrate her as their one and only sister who will always be uniquely theirs.

Lane and Elise: Then and Now...

Lane seeing Elise for the first time in the hospital.  

Lane and Elise were so close in age, that they did a lot of sleeping and laying together in bed.  This is something that Ty hasn't done with Elise, because she is too big and active for that now!

Ty found his own way to show love for his sister by holding her hand in the car ALL OF THE TIME!  Ty is not a cuddly, sweet little lovey-dovey kid, so this is kind of a big deal to us...

Lane and Elise have "grown up" together, side by side.

  

Lane has pushed his sister around for her whole life!

  

Elise is 4-years-older than Ty, so he has had different experiences with her than Lane.  

 She was the one holding him (and trying to eat his head)... 

 He has always been the one more interested in her toys and equipment.

 Ty pushing Elise in from the bus (with a little help from our friend/caregiver, Jackie)!

 He likes to rearrange her bed to make sure she has everything she needs... 

 It is worth the effort to create memories for these boys with their sister.  Even if she can't be directly involved, she can be there, as part of the family.  

She dresses up with them on Halloween...

She is with them on Christmas Eve dressed in their pajamas...

She is with them as they walk to school...

She is there at her brothers' Meet the Teacher nights...

She comes along to explore the neighborhood Christmas lights...

She is with them at the church Easter party...

She's with them when the latest kid movie comes out, and  scores the roomy seats in the handicap section (we actually make the boys sit in regular seats)...

She's on the sidelines at soccer practices and games year after year...

To show Elise their love, her brothers have:

Held her...

Spent time with her...

 Traveled to the park with her...

Helped feed her...

Played doctor with her...

 Taken rides in her lap...

Gone with her to doctor appointments...

Walked to Sonic with her...

And even when Elise can't be involved in their play, she is still nearby...

In our backyard with neighborhood friends

Last summer at a local spray ground

 Lane's baseball game

  Grandparents' swimming pool 

   Yeah, I think Lane and Ty are going to be fine. They may not have a typical brother/sister relationship with Elise, but you sure couldn't tell them that!

With all of this talk about brothers and sisters, I started thinking about my years growing up with my big brother, Brent. My boys will have different kinds of memories of their sibling relationship with Elise, but I have pictures to capture all the great moments. 

(Just like my dad did!)    

Warning:  These pictures are extremely 70s/80s looking.

This last picture is the closest representation of 90% of my memories with my brother!

If you would like to read an earlier post on the subject of Elise and her brothers, you can go here...