Rambling thoughts on Why versus What?, a family motto and three quotes

 

Rambling thoughts on Why? versus What?, a family motto and three quotes.

So I saw this post the other day on the LGS Facebook page.  It was from a woman named Julie who was celebrating her daughters 16^th birthday.  She was not complaining at all.  She was venting and frustrated as she sees all these other sweet sixteen posts with kids getting their first car and holding up car keys.  She acknowledged her daughter would never own a car or drive.  I don’t think she was mad at others for celebrating their lives.  I think she was saddened and discouraged with her daughter’s inability to live the “normal” life.  I wrote to her and let her know my thoughts.  I hoped she understood the sacrifices she made in the past and present were gifts.  Her daughter was and is appreciative for those gifts.  Julie is the true gift to her daughter.  Her daughter can see, hear and sense the love of her mom.  You don’t need a car, new dress, or a new toy to celebrate that.  This exchange made me think of our struggles with this same issue.  Hopefully, this entry to the blog will help you walk through my thought process to and explain the struggle Julie and most parents of handicapped kids go through.

Why her?

The question Why?  It can be a tough one to tackle.  I look at it two ways.  First, there is the scientific side.  Why did this happen to my child?  Why epilepsy?  Why LGS?  It is a question we have to ask to get help.  It helps us find a diagnosis, the proper meds to control the disorder, develop a treatment plan, etc.  The “why” inherently leads to the what, where, when and how.

Second, there is the question we ask of God.  Why my daughter?  Why us?  Why me?  I struggled with this early on in our journey with Maggie.  It lead me down a path of anger, hatred, despair, and frustration.  I was angry with God.  I told Him to look at what He had done to my beautiful family.  Look at the pain He caused?  She is so little and innocent, where is Your mercy?  Why did You load this weight onto her…onto us?  It was a maddening process with lots of tears.  Through my experience I have come to realize they were fruitless questions.  I gained no solace from them.  

The A-ha Moment

I almost missed the beauty of it all and the path God had chosen for me.  I quit church, I quit God.  I felt like He turned His back on my daughter and me.  I saw her sickness, her seizures, and her put into a medical coma.  I saw regression, sadness and frustration in her eyes.  How dare He do this Mags?  How wrong I was.  There was no lightning bolt moment for me but God spoke to me.  I can’t recall a specific moment or event that happened but I did received my answer from Him.  His answer to all my “why” questions was so simple.  It was a game changer.  It significantly impacted my life.  God said, “Yes, He made her, she is beautiful as she is and He picked me to care for her.  He wanted me to be part of her beautiful life.  A brief life but one full of love, caring, hope and joy.  He picked me.

It is what it is…

There is a sign that hangs in our house that says, “It is what it is.”  It is a creed our family started to live by after several years with Maggie.  Maggie was made the way she was and there was no changing that.  There is true beauty in it.  It says in the book of Genesis 1:27 “God created mankind in His own image, in the image of God He created them; male and female He created them.”  God made Maggie the way she was in His image.  He knew what she would endure and the life she would live.  God also knew the two parents to whom He would lend her.  He picked OG and me.  Out of all the people on God’s green Earth (about 7.5 billion), he picked us.  That’s not a curse.  My friends that is a blessing.  Two in 7.5 billion!  You are almost 43 times more likely to hit the Mega Millions lottery (1 in 175 million chance) than be blessed with a child who needs more help than others.  Looking back on her life, I would easily give up 43 lotteries to live those 16 years again.  I wouldn’t blink once.  So I stopped asking “Why?”

Start quickly with What not Why?

I came to realize asking the “why” questions was silly and selfish.  It lead to a path of despair.  It was better to ask “what” questions.  Not like Little John the rapper who apparently can’t hear well, but much more proactive.  The best one…what can I do?  This took me from being passive and just getting by to active and living life with her.  What can I do to make her life better?  Get active. 

What did Maggie like?  I know Maggie liked to dance with her daddy and spin around.  She loved to do the pretzel.  I know she loved when I came home, immediately hugged and tickled her while singing out loud silly welcome home songs.  I know she loved to hear me play guitar and sing JJ Heller songs when she went to bed.  Your Hands and The Boat Song were favorites.  I know she loved to jump on the trampoline.  I know she loved to play in the dirt.  I know she loved the sun.  I know she loved to swing.  I know she loved to pace on our deck regardless of the weather.  We figured all this out by asking “what” rather than “why” and got busying living life rather than watching it go by.

What can I do to help her live life to her fullest?

Fight.  We fought every day and included her in everything possible.  We didn’t limit her and what she was involved in.  Maggie didn’t have great skill at staying on her feet for a long time and needed assistance but she went snow skiing, tubing, parasailing, rode a jet ski, rode on a scooter, enjoyed sledding, walked the beach, dug in the sand, swam in the ocean, rode roller coasters, jumped in pools, ran in a marathon, won the state Special Olympics in the softball throw for her age group, went down big water slides, went canoeing, and drank a lot of water she shouldn’t have along the way.  Maggie lived life and taught me the joy of taking pleasure in the little things, the small achievements. 

All for one.

If a place/event didn’t adapt to Mags, we left as a family.  No one stayed behind.  We were a unit.  We took the Musketeer’s slogan to heart…all for one and one for all.  As a parent of a handicapped kid you don’t expect special treatment.  You just want the “same” treatment.  You would be amazed at the stares, glaring, and under the breath comments of others which become normal.  I ignored those most of the time but I had a bad day now and then.  There was no need to feel guilty because we couldn’t hurry or rush to put others at ease.  It simply took us more time to check in/out, get in/out of the car/store, eat, dress, shop, etc.  We were a little sloppier at the dinner table or a little louder when quiet was preferred.  We were never ashamed of who we were.  As a parent to a handicapped kid I took rest in the fact my family was strong.  I took pride in my family and how we stood together.  We gave more, bled more, struggled more, but most importantly we loved more.  We gave grace when it was undeserved and provided an example of true love when caring for Maggie in public.  I know there are many other families going through the same issues we went through and God bless them all.  They know what true love is.

Suck It!

The occasional bad day does get you down.  I would be kidding everyone if I said we were always positive and the world around us was great and loving.  We had another motto we followed when faced with a crummy situation with glares, stares, unfair policies and handicap alienation.  The motto was they can “Suck It.”  Yeah, not the most couth saying but it gets to the heart of the matter.  If you don’t accept us, you can “Suck It.”  We will go on without you.  It stinks but it happens, even in church.  Of all places I figured we would find acceptance, the least likely place I thought I would get push back would be in a church.  Mags could get loud.  She liked to verbalize and sing her own songs.  She was nonverbal (couldn’t put words together) but her voice was beautiful.  Her laugh was contagious.  She just didn’t have the tact most of us take for granted.  Mags like to sing when others sung in church.  She was moved by Jesus and loved to lift up her voice to God as much as anyone else.  Her timing was just off a little.  I can remember being asked several times to take her into the baby cry room because she was being loud.  I was shocked, demoralized and horrified my church would have the tenacity to alienate her.  I really couldn’t picture Jesus standing on a mount, stopping his sermon and saying, “Hey, you there.  The one with the unruly child.  You are disturbing those around you.  Please remove yourself to a place more appropriate so others can hear me clearly.”  I picture Jesus saying, “Rejoice in her, accept her celebration, those of you who want to hear more clearly come closer but know her presence is just as important as yours.”  Needless to say, we voiced our dismay but were told that is why they designed and had those rooms.   We left the church after several years of faithful devotion and found another.  One that embraced us fully, asked what we needed, adapted to our needs, changed its way of thinking, and embraced us all.  A big shout out, church clap and Amen to Grace Fellowship and its pursuit of God’s love for all!!!

Moral of this post

If I need to summarize my rambling thoughts above, I guess the following three quotes summarize it best. 

1 - Redd from The Shawshank Redemption said it best, “Get busy living.”  Stop asking why me and start asking what can I do.   

2 – Yoda from Star Wars said, “Try not.  DO or do not.  There is no try.”  You asked the question and got the answer now put your plan in motion and live your life as fully as you can with your kid involved in anything they can do.  Love what they can do and try not to focus on what they can’t do.  Take joy in their small accomplishments.

3 – Teddy Roosevelt said, “Do what you can, with what you have, where you are.”  It can be frustrating with the limitations of what your kid can and can’t do.  But you have the ability to let them experience new things regardless of their abilities. 

Most kiddos have five full senses.  They can see, hear, feel, smell, and taste.  But I think there is a sixth sense.  The sense of love.  Feed that sense the most.  Feed it with experiences with you.  They know when you are near.  They know your voice.  They know your touch.  They know your smell.  Let them experience the world through you and let the world know them.  Then the world may catch up and love others the way you do.