What A Friend She Has...

When I was a little girl,  just a few years older than Elise, I spent the 3 weeks before summer camp with two of my best friends practicing for the camp’s talent show.  Three girls, wearing 80’s leotards, doing a routine to the song “Friends” by Whodini playing on my record player.  Now, if you’ve never heard of Whodini, take a moment to look them up on You Tube… 

(Yes, that music was cool at the time…)

That’s the kind of thing I remember doing with my friends as a young girl.  Lots of dancing in the living room, twirling batons, and playing records and tapes.  Hours spent running through my “Willy Water Bug” in the front yard with Alecia.  Climbing trees with Wendy in the woods across the street from my house.  Swimming at Laurie's lake house, and sharing a week at camp with Ali.  Jumping on my trampoline, each of us outdoing the other in backflip contests.  As we grew up,  old friends moved away, while new friends were made.  Our pastimes turned to talk of boys, popularity contests, and hours of curling and teasing our bangs in the bathroom mirror.  

Like many other things that life has to offer, Elise will miss out on this joy of friendship.  This void in her life had never really crossed my mind until just recently.  My first vision of Elise as “friendless”, was at my son’s baseball game.  I was sitting in the bleachers with her by my side.  I heard giggling, and when I turned around, I saw two little girls sitting by her, examining the stickers on the side of her wheelchair.  They asked me numerous questions about her, as most curious kids do, and then touched her hands and tried to talk to her.  Elise had no idea that they were there, much less that they were interested in interacting with her.  Nevertheless, I quickly took pictures of the girls with Elise.  It made me feel good to see her with other children, even if she wasn’t aware.  So, that got me to thinking about an interesting question that I have wondered about during these times of awkward but sweet exchanges between kids and Elise.  

Can friendship be one-sided?  

Can a little girl declare that she is Elise’s “friend”, when Elise doesn’t know that the girl even exists?  I think I will answer my own question by saying that, yes, friendship can definitely exist in this unbalanced way.  At least for kids like mine. 

Every time a little girl shows interest in Elise, comments on her dress, or places their hand upon hers, it takes away a little of the sting that I feel when I see other groups of girls playing together and sharing in friendship.  One such sweet child is Hailey, a little girl who goes to our church.  Hailey was always very enthralled with Elise.  Each Sunday, she would stop in the hallways of the church and comment on her dress, her shoes, and her earrings.  One of the most endearing moments with Hailey, was at a party where all of the children were running around, climbing playground equipment, swinging in swings, and playing chase.  I caught Hailey talking to Elise.  As I inched closer to hear what she was saying, I realized that she was asking her if she wanted to play.  It broke my heart.  I explained to Hailey about Elise and why she couldn’t play.  Personally satisfied with my quick response, I was surprised to see Hailey walk up several more times, and ask, “Can she play now?”  It was just too hard for her innocent mind to understand that Elise coudn’t play...ever.

Hailey eventually understood, and from then on, focused on saying hello, and patting Elise on the arm.  I still have a picture that she colored for Elise.  It shows Jesus in a boat with his disciples as he calmed the storm.  There is a little girl in a wheelchair at the bottom of the picture with the words -- “He is Powerful”.  Coloring that picture of the girl in the wheelchair reminded Hailey of my daughter, her friend.  

At Elise’s school this past year, there was a kindergartener named Elizabeth whose class was just down the hall.  I know her parents from church, and they told me one day that their daughter had taken an interest in Elise.  Elizabeth would see her in the halls during dismissal.  She was upset because it was against the rules to leave her class in line, but she so desperately wanted to walk the few feet over to Elise to give her a friendly hello.  She wanted to acknowlege her and give her some love.  

These small acts of compassion and interest toward Elise mean something significant to me as her mother.  The truth is, most kids are either scared of Elise, upset by her, or see her as too bizarre to approach.  I get that.  That is normal.  It does, though, remind me of how God has placed certain little ones in her path that find a place in their hearts for a child like mine.  

Just as I trust Jesus to fill the many voids in Elise’s life, I also know that He can step into this role of “friend” for her.  She may not have someone to do cartwheels with in the grass, laugh over childhood silliness, or play Barbies with, but Jesus can definitely take the place of the many friends that she is otherwise missing.  

He is the only friend that won’t ever hurt her.  

He is the only friend who will always support her.  

He is a friend without jealousy.  

He is a friend with never-ending patience and understanding.  

He is a friend that is always faithful, and will never leave her side.  

This is the kind of friend that I am most thankful for her to have.  

John 15:13 says,

“Greater love has no one than this: to lay down one’s life for one’s friends.”

What else does Elise, a child of God, need in a friend?  Jesus already laid down His life for her, and the way I see it, that’s the equivalent to a lifetime of slumber parties, playing dress up, swooning over boys, going to the mall, and all of the other joys of having earthly friends.  As a matter of fact, I think He is all she needs…

Two curious girls at Lane’s baseball game.  They started out looking at the stickers on her chair, then moved on to talking to her and finding out all about her.  I sure wish she could play with them…

 

This is a birthday card that Hailey gave Elise a few years back.  I will keep it forever.

The picture that Hailey colored for Elise.  It hung by her bed for a couple of years, and I now keep it in Elise’s keepsake box.  

This is Elise’s class a couple of years ago at school.  Her teachers call the other kids her “friends”.  They do activities, receive therapy, and spend their days together in the same room.  It is probably about as close to another child as she will ever get.  

Even though Elise doesn't have friends in the traditional sense, I have enjoyed watching my boys make friends and memories through the years.

  

Lane (on the right) has made many great memories with his good friend, Andrew.

Lane (squished on the bottom) with all of his friends at his 9th birthday party.  This is one thing I definitely miss each year with Elise.  I would LOVE to plan a little girl birthday party and invite lots of friends.  

Ty is just beginning to make close friends.  I hope he keeps them for many years to come!  

Ty (on the right) and Creed.  I have loved watching this friendship grow from when these boys were babies.  

Ty (on the left) and Ryan, his friend from church.  They are both super anxious to see each other at Sunday school each week.

When I look at pictures of myself as a child, I can't help but wonder what it would have been like for Elise to have made friends and had the same kinds of experiences that I did.  

Me (on the right) and Alecia, a great friend growing up, getting ready to play in a piano recital.  (I am Elise’s age in this picture.) 

If Elise were a typical little girl, I would have signed her up for a group like Blue Birds or Girl Scouts.  This is me with all of my Blue Bird friends when I was Elise’s age.  It’s crazy that I am Facebook friends with 6 of the 8 girls in this picture!

My two closest friends, Laurie and Ali, and me (in the middle) getting ready for a dance performance.  Very, very 80s!

First day at summer camp with my friend, Ali (on the left).  These were some of the most memorable days for me with my friends.  I know Elise would have loved camp as much as I did...

I will always remember the words from one of my favorite gospel songs, What  a Friend We Have In Jesus.  

“In His arms He’ll take and shield thee, Thou wilt find a solace there.”

What a friend she has!

Our Story (Quick Version)...

Remember when you were 20 and would think about your future?  What would you do with your life?  Who would you marry?  How many kids would you have?  Where would you live?  Although most of us don’t fully match our hopes to reality, I can honestly say that my personal outlook at that age was not too far off from what I have now.  Of course, I had no idea of what we would face with the birth of my second child, Elise, in 2004.  Fortunately, all these years later, our present is just as good as any future I could have dreamed up.  As crazy as that sounds, the story of our family, and our daughter’s incredible journey through a life with severe brain injury, is amazing proof to me that wherever you land in life, whatever cards you are dealt, the Lord is in control.  He is our key to happiness, and our daily joy lies with Him.  

My name is Ashley Haden, and I am married to my college sweetheart, Chris.  We have 3 children: Lane (Lane-Brain), 10; Elise (Sissy), 9; and Ty (Ty-Bo), 4.  

This is our story (in a nutshell)…

When I was 4-months-pregnant with my middle child, Elise, my doctor discovered by ultrasound that Elise was infected with Congenital Cytomegalovirus (cCMV). Almost everyone gets this virus by the time they are an adult, but it is usually only a serious matter if a mom gets it in her first trimester. Although I suffered no symptoms of CMV, Elise was profoundly affected. This insidious virus attacked her brain. Beginning at her birth, and continuing through the first few months, we gained the broader picture of how our sweet baby girl was affected.  

Elise has a severe brain injury.  She is deaf and blind.  She also has Cerebral Palsy, which resulted in her not being able to sit up, crawl, or walk.  Elise also suffers from epilepsy and extreme cognitive delay.  She is my “forever baby” in the body of a 9-year-old.  Elise is “full care”, which means that she will be fed, medicated, bathed, dressed, provided therapy, and most importantly, LOVED on by us, her family, for the rest of her life.  Although devastating, this fact has solidified the meaning of unconditional love for me as her mom! 

Bottom line:  Elise was given to us by God and it is our responsibility and duty as her parents to provide her with the best life she can possibly have here on earth. He has also used our baby girl to touch so many people in our community, church, and family.

If we ever prayed for patience and strength, this is NOT what we had in mind.  But that’s just it!  Life doesn’t always turn out like what we have in mind.  By no means has Elise’s life torn my family apart.  It has saturated our lives with the need for God and all of His mercy. This is wonderful!  We have been given an incredible task. A blessing disguised as a obstacle in our race of life.  

With God leading us, we are ready for the challenge!

Daddy's (not so typical) Little Girl...

"As a father has compassion on his children, so the LORD has compassion on those who fear him…"

Psalm 103:13 

My heart is never as full as when I walk in to see my husband interacting with Elise.  Sometimes he is just caring for her needs by feeding her through her g-tube, dressing her for church, or giving her the various daily medications that she requires.  They also share times spent together in a closer nature.  Rubbing his nose against hers, brushing his facial hair with her hand to let her know who is there, tickling her to make her squeal, or merely kissing and hugging on her, all become special moments between the two.  Elise’s absolute favorite thing to do with her daddy is to have her hair brushed.  Starting at just a few years old, she would lean back in Chris’ lap and relax while having her hair combed through.  This proved to be a wonderful activity for them both, and has continued on all of these years.  

When I think about it, moments like this that can be special between a daddy and a daughter don’t come often between Chris and Elise.  As far as the daddy/daughter relationship goes, you definitely won’t find theirs on a Father’s day card or in a sappy commercial.  What they have may be different and challenging, but it’s all he, as her father, knows. 

I, personally, have a deep, aching pain associated with losing Elise as that typical daughter I so longed to have.  Over time, I found myself assuming that Chris didn’t share the same feelings of loss as I did.  After all, he has two healthy boys.  Men want boys, right?  After taking the time to truly think about what it means to him, though, I saw a level of disappointment and hurt that is definitely experienced by Chris, the daddy.  He has managed to dodge the everyday pains that I still suffer-- like watching other girls her age playing at the playground, or dwelling on what it would sound like to hear her talk, sing, and fight with her brothers!  However, behind that rough exterior, I know for a fact that Chris has an immense soft spot for his baby girl.  We have been asked to speak to our church as well as to different Sunday school classes over the years, sharing our testimony and our life with Elise.  I am always the one who speaks, but in the few times that Chris wanted to say a few words, tears always found their way into his eyes, welling up with just the mention of his daughter.   Where I have become hardened and tough with my outward emotions regarding Elise, Chris still harbors raw feelings of sensitivity and heartache.  Not for what he is missing as her dad, but for what she is missing as his daughter.  

The fact that Chris can’t relate to other dads with daughters as they talk about the ins and outs of raising a little girl doesn’t make him any less of a daddy.  Instead of helping her put on ballet shoes, he straps on her foot braces.  When other dads sit down with their daughters to play a game or spend some quality time together, Chris carries Elise to her therapy chair and sets her up in her light room to explore hanging toys and textures on her tray.  While most dads say prayers with their children at night, Chris can pray for her just the same.  

The ways that he can show his love are limited, but they are there.  He loves her by giving her medications.  He loves her by creating therapy equipment out of PVC pipe, twinkle lights, and duct tape.  He loves her by drawing out hidden giggles by vigorously scratching her head.  He loves her by rushing to her side in the middle of the night when he is awakened by her cries.  

I have to admit, Chris’ daddy duties were questionable after we had our first child, Lane.  There were many nights that I wondered how I would make it through one more day and night of newborn crying while watching my husband snore in our bed, oblivious to the deep pit into which I was falling.  It took him a little while to fully and completely step into the role of “father/supportive husband”, but once he did, he never looked back.  He cringes now as he remembers some of his actions and comments from those early days of fatherhood.  

By the time Elise came along, though, he was already a pro.  He was up with her at night, helping with therapy, traveling all over North America for treatments, rocking her, loving her, and giving me the rest I so desperately needed.  Elise’s birth forced us both into “Super” mode.  No rest for the weary!  Still now, Chris is there for the never-ending diaper changes, nights of getting up to calm her screams, putting her in and out of the bathtub, in and out of the van, in and out of her wheelchair.  It only gets harder…  For a man who, himself, didn’t grow up with a father, Chris is an incredible example to any man facing everyday fatherhood, or the trials of raising a child with disabilities.

When Elise was an infant, we would travel out of town to receive Hyperbaric Treatments.  I remember a mother of another special needs child complimenting Chris on staying with our family after Elise was born.  She gave me the statistics of the rate of divorce among families with special needs children.  It is astronomically high.  I thought it was interesting that this mother was almost patting Chris on the back for not leaving us.  It was a funny moment for me, because the thought had never crossed my mind.  I knew who I married when I said, “I do”.  I knew Chris inside and out.  I think that the better compliment to him, as Elise’s daddy and as my husband, was that this was never something that I had to fear.  There’s truly no better gift that Elise could have received as a daughter or that I could have been given as a wife, than to have Chris lead our family.  

Chris’ relationship with Elise will always be bound by her inability to interact in a normal way, and that makes me sad.  But, when I think of the ways he has found to stay connected with her, it makes me smile instead...

• He won’t walk her down the aisle, but he will push her wheelchair everywhere we go.  

• He won’t enjoy her children as a grandpa, but he will enjoy her for as long as God allows.  

• He won’t take her to a Daddy/Daughter dance, but he will rock her when she is hurting, tired, or just plain sad.

• He won’t warn her about boys, but he will protect her the best he can from the hardships of growing up with a brain injury. 

• He won’t read her fairy tales at bedtime, but he will treat her like a Princess.  

From fathers to daughters, love runs deep.  This is no exception with Elise and her daddy.   With never a word spoken between them, they still share that primal connection of -- I love you because you are a part of me.  I can imagine Elise, if given the chance to be a healthy little girl, would look up at Chris, grab his big, rugged hand and announce to the world -- 

“This is my Daddy!”

"The man of integrity walks securely, but he who takes crooked paths will be found out."

Proverbs 10:9

This is the last picture of Chris and me B.E. (that’s Before Elise).  He was by my side through the scariest days of my pregnancy, and he was excited to become a daddy to a little girl!

This is the first picture of Chris and me after Elise was born.  We knew what we were facing, but were confident we could face it together…

Big Daddy...Tiny Girl

Nose to Nose

Out to eat with Daddy

Like father, like daughter!

Chris and Elise on a train ride at the Argyle Pumpkin Patch.  We go every year, and were sad when Elise became too tall to fit on our lap in the train car. 

Daddy and newborn Elise.  Try and put her in bed with you now, and it feels as if you are sleeping with a monkey with all the kicking, screaming, and arm flailing!  I can’t even remember back on the time when she was this peaceful to sleep with!

I have tons of pics of Chris sleeping with the kids.  He doesn’t think as quick on his feet when I fall asleep with them.  Oh, well.  I probably wouldn’t like the way I looked asleep, anyway!

Chris has taken Elise swimming many times over the years.  In hotel pools, my mom’s backyard pool, and our neighborhood pool.  The bigger she gets, the harder it is, but her special life jacket makes it easier.  I don’t have any pics of her in it.  I’m slacking...

Hospital Stays - Daddy's Always There!

Chris rocking Elise at our first visit/stay at Children’s a few days after her birth.  (Big brother, Lane, at the first of many, many, many doctor visits!)

Elise’s first of many EEGs after seizures started.  Chris was there to support her and me!

Daddy loving on Elise after a surgery.  

Chris and my mom with Elise before a surgery.  He worries just as much as I do when she goes under for a procedure…

Chris visiting Elise in the hospital with her little brother, Ty.

Chris and Elise at mealtime

Chris taking a break from work to visit Elise at an end of school celebration for her PPCD class.

Proud Daddy and pretty baby girl!

Chris holding Elise before her “dip”.  Lane, Elise's big brother, and Chris were baptized together last year at our church.  I am forever grateful to our church leaders for also including Elise in a private ceremony.  Because she cannot profess her acceptance of Christ, we did not consider it a traditional Baptist baptism.  Instead, we saw it as a dedication or promise to God that we will trust Him with her soul.  Chris went in with her, and the experience was uplifting and very satisfying for me as her mama.  

Chris put in countless hours doing ABR, an intense form of therapy targeting Elise’s physical issues related to CP.  He took off work to travel all over with Elise and me, willing to give up hours and days of his life to put toward helping Elise.  

Resting with Daddy

Dr. Daddy, ready to treat Sissy himself while waiting on those pesky doctors!!!

There will always be room on Daddy’s lap for at least 2 of his 3 kiddos at a time!

Hair Brushing Through The Years...

Elise’s favorite time with Chris.  She will sit for as long as he will comb.

Thank You, Jesus,

 for giving us a “Special” Father for a 

“Special” little girl...