Tuesday, July 10, 2012

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!