Little's Life

Little's Life

Wednesday, June 25, 2014

Since When Does God Only Give Special Kids to Special People?

As the mother of a child with a failing body, I am often the recipient of phrases like these:

 I get tagged in them on Facebook, I get them sent to me as pins on Pinterest, and I have them said to my face in reaction to learning about my son.  These things are said to me as compliments and encouragements.  I am well aware that people are dumbfounded when hearing about Duchenne and learning what horrific things this disease is going to do to my son and sentiments like the ones above are the only things they can manage to squeak out in reply.  And let's be honest - those phrases are INFINITELY BETTER than most of the crap people blurt out. One day I will do a "You Won't Believe What People Have Said to Me" about my son post.  I am definitely thankful for the responses that are positive and loving like these three seem to be.  I get the intentions behind the words.  I do.  But these phrases are so very FALSE.

~God only gives special children to special people~
Since when does God only give children with special needs to "special" people?  Children with mental and physical issues show up in families who can't handle them ALL THE TIME.  How often do we hear about children with disabilities who are abused and neglected by their families?  What about Tracy Latimore, who was killed by her own father because of her cerebral palsy?  What about Joshua and Carlina Pinkerton, who kept their disabled brother locked in a cage with a litter box?  Are the Latimores and Pinkertons considered "special"?  If so, then PLEASE stop putting me in that box!  This one is such a backhanded compliment.  It's like saying I deserve a handicapped child.  No one deserves to have a son with Duchenne.  Sure there are terrible adults in the world who deserve to suffer in the ways that Duchenne will cause Andrew to suffer (child molesters, etc), but revenge is for the Lord and no child deserves to be born with it.

~God gives his hardest battles to his strongest soldiers~
No.  Nooooooooonononono.  If this was true, no one would ever give up and walk away from their families because of their inability to come to terms with a loved one's diagnosis. No one would ever become an addict or alcoholic to numb the pain of watching their children suffer.  Did you know that in marriages where a child is born with special needs, the likelihood of divorce is double?  There are plenty of "soldiers" who are not strong enough for the battles these children bring.  I know too many families where one parent has run away or is actively denying there is anything "wrong" with their child because they are too weak to pull on their big kid chonies and face the life that comes with a diagnosis to believe this one.  In fact, I have to make a conscious effort not to laugh/scoff whenever this one gets thrown my direction.  

~God will never give you more than you can handle~
WRONG AGAIN.  God will absolutely give you more than you can handle.  What this sentiment should actually say is this:

God gives us PLENTY more than we can juggle on our own.  Our plates get more and more filled as life goes on and often, we spill those plates all over the ground.  It is up to us to turn to the Lord so that He can get us through.  We are not omniscient.  We are not more powerful than our demons on our own.  God is. 

 Philippians 4:13 does not say "I can do all things."  Nowhere in the Bible does God say "Go on, you got this one all on your own.  Jump in there, bro."  Instead, He says that He will go with you.  God will fight our battles and handle our lots for us.  

Psalm 55:22, "Cast your burdens upon the Lord and He will sustain you."
Matthew 11:28, "Come to me, all you who are weary and heavy laden, and I will give you rest."
Isaiah 46:4, "I am He.  I am He who will sustain you.  I have made you and I will carry you.  I will sustain you and I will rescue you."

It's up to you to turn to Him and cast your burdens upon Him.  It is not me, but God through me that I am able to keep going while knowing all too clearly what Duchenne is going to do to my son.  It is not because I'm "special" or stronger than or in any other way more deserving of a child like Little than any of the rest of you; I just got one.  What I choose to do with him and his disease is on me.  I can flounder around and live in distress over things to come or I can call upon the Lord to quiet my soul.  I choose to lay my son's disease at His feet and rely on Him to take care of us.  I sleep soundly at night, knowing that when the DMD robs Little of his life, God will make him whole again for eternity.  This life - this battle- is temporary.  What is waiting for us on the other side - THAT is eternal.  

So instead of tagging me in every facebook or pinterest pin that calls me out as special or deserving of a child with special needs, think of me when you see ones like these, please!

Oopsie!  How did that one get in there?  *smirk*

Sunday, April 27, 2014

Took me 32 Years to Have the Guts...

to sing in front of people.  I'm 33, btw, but last year was my first, so that's where the 32 comes in.  I've sang in large groups, like in my high school's musicals and I've sang tiny snippets solo for auditions in closed rooms with only like 6 people in them, and once in the 8th or 9th grade I took the lead on an old country song in choir, but the whole choir was backing me up - but to this scale - 32 years.

Last year, my preacher's wife, Beth, asked me to sing in a trio for our church's ladies' day.  She asked me in front of 10 or so others at a planning meeting, so I felt like I had to say yes.  My head started spinning and I believe I threatened to punch the girl next to me (under my breath) for volunteering my name, and I immediately regretted my decision.  A few days later, I learned that we were to take turns leading singing for the day, also.  AS IN UP ON STAGE, BEHIND THE PULPIT, INTO THE MICROPHONE WITH EVERYONE STARING AT/HEARING/FOLLOWING MY LEAD.  I was terrified.

Through our weeks of practice, I got pretty comfortable with the trio idea, but leading singing was the thing that made my knees shake.  In fact, the two nights before, we took turns at the podium, singing the songs we had picked to lead while the other ladies worked on decorations, was scary.  Just standing up there was daunting.  It definitely took a bit of the edge off, though, to have faced the rows of chairs a few times before the actual day.

We all got through it just fine, thanks to prayer, deep breathing, and a few minor freak outs in the ladies' room, and I ended up being SO GLAD that Beth asked me to help.  In fact, I enthusiastically said "yes" when she asked me to head the music for this year's event.  Last year, I wouldn't allow anyone to record us performing, this year - I did it myself and I'm sharing it here.  That's proof of how much the three of us grew in our confidence and comfort.  I almost got Desiree to lead a few songs, which is pretty far forward for her, in terms of stage fright.  Next year......right, Desi?

I had so much fun with it this year.  I was anxious beforehand, but I knew from last year that I would be just fine about halfway through the first song.  I started off with "Awesome God" (you know, "Our God is an awesome God, He reigns from Heaven above...) because it was super familiar and easy to sing.  The one I was a little afraid of was "It is Well".  Our theme was Be Still and Know, so I picked this one because of what it means to me.  Any of you who have ever been under the song leadership of Tom Chapin know what I'm getting to; it was the song that the congregation started to sing as I (and so many others through the years) came up out of the water when I was baptized.  This song represents the very first moment that I was still and knew God.  I got through the introductory words and the whole song without flinching, so that was a load off.  The most powerful part of that song for me is the line that goes:
 "my sin, not in part but the whole -
 is nailed to the cross,
and I bear it no more.
Praise the Lord, praise the Lord!
O!  My soul!"
I usually get that 'here it comes' tickle in the ball of my nose and my voice starts to crack.

Turns out that praise through song is where I feel the most connected to God - the most right within my heart.  You would think it would be through traditional prayer, but I am easily distracted.  My mind never stops running, so I don't always get to keep that proper state of mind during a prayer.  In song, though, I can focus. I know that He doesn't care what I sound like or if I trip over the lyrics.  He is wholly receiving my joy, gratitude, and prayer through the outpouring of my soul through the melody.  I feel every word I sing, and I know I am conveying that to God.  Sometimes when I pray at night, a relevant hymn will come to my mind and I usually just go with it.  I sing.  It doesn't matter that I didn't write the words that I am giving to His ear, it only matters that I mean them.

Here are two of the songs we did.  I'm the one in the pink pants, singing alto, Whitney White is the one in khakis singing a ridiculously high soprano1, and Desiree Foster is in jeans, singing the melodies.

Here is our arrangement (by me!) of "Sanctuary" mixed with "We Exalt Thee".
 ** This one's my favorite.**

 And here is our version of "Still".

I leave you with the verse that our Ladies' Day was built around:
He says "Be still and know that I am God;
I will be exalted among the nations,
I will be exalted in the Earth"

I hope you all exalt Him today, whether in song, prayer, or action.  Have a blessed Sunday!

Sunday, April 13, 2014

We Flexed One HECK of a Muscle!

Yes, this is my annual Muscle Walk post.  

This year was incredible.  Ya'll absolutely blew me away.  Our biggest group, our highest total raised, and our most donors ever.  48 of us showed up to Bridgestone Arena in Nashville,  ready to walk in support of Andrew.  

This whole group of caring, loving hearts showed up for my son.  No one drove less than 45 minutes and some of them drove as many as 7 (and no, they aren't relatives) - all for Little.  I can't articulate to you all how much that meant to me.  We were the second or third largest group there.  Our group was so large, that we couldn't fit in the photo area!  We just squished together at our meeting point and handed my camera to a total stranger.  :)

 I am so touched that all of you came.

Over 100 people donated to our team this year!  Our goal was $2630.01 (a penny more than we raised last year) and we took exactly $4,000 to Muscle Walk.  That's not all, though!  The donations kept coming in even after the walk and our grand total raised was:
That's more than double my original goal!!!!!!!!!!!!!!!!!!!!!!!!  I still cannot believe how much ya'll gave!  Do you know how many hours of research that money will fund?  How many wheelchairs that money can repair?  That money WILL play a part in finding a treatment for Duchenne.  THANK YOU, THANK YOU, THANK YOU!  Out of 15 (or more) teams, we raised the 4th highest amount of money.

 Little Boy was a crankpot for the whole thing.

This itty one is Ian.  Ian is wearing Andrew's original Little's League onesie from our very first Muscle Walk. BTW - I need that back, Desi.

 Linda Decker, our fearless leader!

And finally, he's excited (we were waiting for the elevator so we could we leave).

This will surely be my "year to beat" in both participants and funds.  I know every year can't be like this one, and it will hold a special place in my heart for the rest of my journey with Duchenne.

With so many people on our side and in our corner, I have no doubts about how Little and I will be able to walk this path.  Every night, when I pray with him before bed, I thank God for all of the people who love us and support us and I ask Him to let all of you know how much you are appreciated through my actions.  I fail, miserably and often, but I hope that even when I'm being a snot, you all know just how much I genuinely appreciate you.  I wrote a note of thanks to my congregation that my preacher read from the pulpit.  Since all of Little's League doesn't attend my church, I want to share an amended version of it here.  It's for all of you, not just my family at Barker's Mill.

I want to thank you all from the bottom of my heart.  You're outpouring of love and support for me and my son was never more evident to me than at this year's Muscle Walk.  To the 48 of you who showed up to walk for Andrew, I am humbled and blessed to call you our League.  When the cure for my son is finally discovered, it will be because of you.  Thank you.