Little's Life

Little's Life

Saturday, October 11, 2014

But I Thought You'd Already Been Baptized...

video


Last night, I repented and was baptized.  Again.  Second time now.  The first was when I was 14 years old.  20 years ago.  Feels like 4 lifetimes ago.  When I did it back then, I believed that I was doing the right thing - declaring that I do believe that Jesus is the Son of God and that he died for the remission of my sins.  The end.  In my 14 year old mind, that was the thing you do in the Church when you believe and you're about that age.  I didn't give much thought to the way I was supposed to live my life afterwards.  BECAUSE I WAS 14.

Ever since Little was born, my perspective on everything has changed.  Yes, I know all mothers say that, but not all mothers have a child with a rapidly degenerative and ultimately fatal muscle disease.  When I say my point of view has changed, I'm talking about a Mt. Vesuvius kind of obliteration of everything "pre-Little".  These past almost 5 years have put a nagging in my heart that I wasn't quite right with God.  These past 3 months in particular have brought it front and center in my mind.  I've been worrying more, allowing anger and resentment to take hold, and questioning whether or not I was all in when I went under the water as a teen.  Was I wholeheartedly baptized or did I just get wet?  No one should live with that doubt.  When you make the decision to be baptized and follow through on it, then your name is written in the Book of Life.  I haven't been able to say to myself, "Yes, absolutely" when wondering if I'll go to Heaven when I die.  I don't want to be hopeful for it anymore, I want to KNOW.  And now I know; my name IS there.  I'm not saying anyone has to go and be baptized after they've already done it.  I'm saying I needed to step back into that water.  I needed to rededicate myself to Him.  But if you are questioning yourself and your previous intentions, then maybe you do, too.

Over the summer, I learned that two of my dear friends who I invited to start attending church services with me made the decision and were baptized.  Then a few weeks later, one of their dads did the same.  I was lucky to be in town that time and got to witness it.  Then 2 weeks ago, their sister took the plunge.  They thanked me every time one of them repented and alhtough I was overjoyed at their decisions, I also felt a pang of guilt and shame.  It took me until yesterday to realize why.  Who was I to be thanked for leading anyone to God when I wasn't even sure I was there?  What kind of hypocrite am I to tell others they need to be baptized when I needed to be reborn myself?

 I get it now in a way my 14 year old self wasn't mature enough to comprehend.  I have a child now and I experience the love a parent (God) has for their children (us).  I think about the way Mary and God must have felt watching Jesus up on the cross and it breaks my heart in a way it never did before Little.  My son will suffer and die from his disease, but the research and studies and clinical trials he is and will be a part of will help these doctors cure future generations of boys with Duchenne.  Now I am NOT equating Duchenne with the cross or the treatments with salvation, please don't misunderstand me.  What I'm saying is that I have the tiniest glimpse of what it is like to watch your child suffer for a greater cause.  When he gets those injections one day, when he suffers side effects from a new medicine, when he is bruised from testing out leg braces, when he swells and screams in pain and cries from giving blood for a lab to study and use - those are physical sacrifices he is and will endure for the sake of DMDers to come.   AND IT KILLS ME.  This smallest of insights into what Mary and God must have felt to give their child to the cross for us is still brutal.  Now magnify that 100000 times.  That's what it must have been for them on that day to watch Jesus endure what he did.  I don't believe I could have handled it.   And to know that it was for us - sinners?  People who don't deserve dog scraps?  How can I keep living a life for me and not God when He gave his son for me??????

So I brought it up to two of my sweet friends last night and one of them blurted out "So let's do it tonight."  And she was right.  When you know, you go.  Don't waste another second.  So we didn't.

The second most precious part about it (bc obviously salvation is the most) was having my son at the foot at the baptistery.  He got to watch Mommy wash her sins away and now we have this moment together.



I sat there are bawled for a moment (who's surprised?) while Andrew's tiny hands clapped for me over in the corner of the photo.  The blonde head in the picture is my friend's son.  My preacher's grandson was there, too.  It was so awesome to get to show these three little souls what we do when we decide to follow Jesus.

In these last 20 years, I have made some pretty poor choices (some great ones, too).  I never stopped believing that Jesus was the way, but my life didn't always show it.  That's what we're supposed to do, though, be a light for Jesus.  No, my light never went out, but it sure flickered on and off.  You couldn't always look at me and think, "Oh, she must be a Christian".  But that's what I want.  That's what God wants.  To begin my life anew for Him, I knew I needed to rededicate and recommit myself to His will.  As my preacher said, the troubles I had before going in the water will still be there when I come out - so this is no blink of an eye change for me.  I will still make inappropriate jokes.  I will still cuss when I stub my toe.  I will still have feelings of anger, resentment, jealousy, pride, and impatience.  But I can give them to God.  I can ask for his help and forgiveness.  I can rest easy, safe in the knowledge that God's got this.

Acts 2:38     Peter replied, "Repent and be baptized, every one of you, in the name of Jesus Christ for the forgiveness of your sins. And you will receive the gift of the Holy Spirit.

Acts 3:19 19"Therefore repent and return, so that your sins may be wiped away, in order that times of refreshing may come from the presence of the Lord

So above you see that the Bibles does instruct us to be repentant and baptized for the remission of our sins.  And below, you will see that Jesus, himself, repented and was baptized.

Matthew 3:13-17 “Then cometh Jesus from Galilee to Jordan unto John, to be baptized of him. But John forbad him, saying, I have need to be baptized of thee, and comest thou to me? And Jesus answering said unto him, Suffer it to be so now: for thus it becometh us to fulfil all righteousness. Then he suffered him. And Jesus, when he was baptized, went up straightway out of the water: and, lo, the heavens were opened unto him, and he saw the Spirit of God descending like a dove, and lighting upon him: And lo a voice from heaven, saying, This is my beloved Son, in whom I am well pleased.”

And here, is how I felt last night.  This passage shows you the urgency in which we should stop what we are doing and take the plunge, so to speak.  We don't know what the next hour holds, so why wait?  Why take that chance?


Acts 8:35-38New AMERICAN STANDARD    Bible (NASB)


35 Then Philip opened his mouth, and beginning from this Scripture he preached Jesus to him. 36 As they went along the road they came to some water; and the eunuch *said, “Look! Water! What prevents me from being baptized?” 37 [[a]And Philip said, “If you believe with all your heart, you may.” And he answered and said, “I believe that Jesus Christ is the Son of God.”] 38 And he ordered the [b]chariot to stop; and they both went down into the water, Philip as well as the eunuch, and he baptized him.


So what are you waiting for?

Monday, September 8, 2014

How Ya Feelin', CCK?

We feel sooooooooooooooooo good.  
Ugh we feel so good 
ugh!
xxxxx xxxxx 
xxx xxx 
whoop 
ugh!


Any of you reading this who have been there just did the hand motions, didn't you? ;)  Here's Andrew's version:


Little and I just got back from one amahzing weekend at Camp Courageous Kids in Scottsville, KY. 


CCK is a not for profit medical camping facility on a 168 acre farm in Scottsville, KY.  It took Andrew and I about 2 hours to get there through some.....interesting....back roads.  It was downright terrifying, ya'll.  For about 12 miles, the road was only large enough for about 1.5 cars at a time.  That means that if someone is coming from the opposite direction, you both have to swerve off the road to avoid a head on collision.  Thank you, GPS, for that lovely route you chose for us.  Anyway, CCK is a fully functioning campground.  They don't water down the activities even though all of their campers (except for siblings on Family Weekends) are special needs/medically complex kiddos.

 Little got to do all of the things that your kids do at camp:

basketball

He chose to use that big purple ball instead of a regular basketball.



bowling

I think this was his favorite thing.  We went 3 different times.

arcade/fun zone games

It got wild at the skee ball table.  We were all ducking and dodging.

s'mores


archery


Real arrows here, guys.  I told you they don't water down the activities.



He actually hit the paper the target was on!

horseback riding





The horseback riding got to me.  I couldn't believe that I didn't have to say one word to the staff about how to handle Little, what not to do, that he would need someone to walk beside him in case his body wore out and he couldn't hold on - they just all knew.  They were so prepared and on it.  I mean these folks do their homework. I watched him riding around on Rocky and that's when it hit me:  

Little isn't "special" here.

THAT'S IT, guys.  THAT'S THE JEWEL.  I couldn't stop the tears from streaming down my face.  Yes, I know, you all already figured I would cry at some point.  But these were tears of relief and of joy in my heart.  Tears of gratitude to these people and this place for giving me and Andrew 2 days of NORMALCY.  We were in a world where he wasn't the one with the disease.  He was just Andrew.  We sepnd every day of our lives under the umbrella of Duchenne, but none of that mattered here.  Here was just another camper.  I can't possibly put into words the release my soul felt.  I made 2 of the staff members cry, too.  Go me. Ha!  I'm glad that they got to really see gratitude from one of the parents' they were helping.
Even the horses were in on it.  I watched one of the largest horses I've ever seen up close, slowly and cautiously walk over to a little girl who was laid out in a fully reclined power chair - I don't think she could move much more than her eyes - tubes, beeping machines, etc - and start to nuzzle her.  It was so sweet.  The horse sniffed and licked and nudged her the way a mama cat tends to her kittens.  Just generally fussed over her.  Bah.  I love horses now.

fishing

He was really more into just throwing the bait into the water and watching the smaller fish swim up and fight over it.

THESE GIRLS!  Ohhh, these girls.  They are who really made everything possible for us.  The blonde is Macey and the brunette is Chrystal.  They were our personal sponsors for the weekend, except we just referred to them as "Andrew's Girls".  Every family at camp was assigned one sponsor, or helper, for the entire weekend.  The sponsor did everything the family did, when the family did, however the family needed.  The only time they were away from the family was to sleep.  I hit the frikkin jackpot with mine.  Not only did I get two of them (Macey's family didn't show up, so she asked if she could join ours), but they are both in their final year of their nursing program.  So I felt completely at ease leaving Little with them whenever I had to run back to the lodge to grab something or wanted to stay and talk to another family while Andrew wanted to go play in the gym.  Chrystal and Macey were so kind and sweet and willing to do whatever Andrew wanted.  I miss having that kind of energy!  They spoiled him.  On Saturday, I counted three ice cream sandwiches in his hand at different times throughout the day.  Little just loved his girls.  First thing in the morning he would rub his little eyes and ask, "Is Chrystal going to be in the breakfast room with us?".   They really spoiled me, too.  I didn't know what to do with myself the first night when they would push his stroller and open doors and refill his drink at dinner - it was strange having so much help!  I got used to it realquick.


He also got to go swimming and watched a movie under the stars.
He snuggled up to the girls outside on the blankets but it was too dark to get a picture of it.  Adorable.

Some of the activities he didn't choose were arts & crafts, woodshop, beauty shop, & baking, although he did manage to sneak into the kitchen and flash his big eyes at the staff in order to secure someone else's pizza roll and cupcake.  The stinker.

Camp ended on Sunday after the reveal of the camp painting.  It was "Pajama Party" weekend (hence the movie out under the stars late at night), so our picture was of the camp mascot in his pjs.


Our names are on the left hand side, straight across from where his nose should be, on the edge of the canvas.

I've never seen Andrew use so much energy.  He just kept going!  Usually just one activity like those would've been enough to wear him out for 2 days, but he was just so pumped and caught up in the action that he didn't want to stop.  CCK is the location that Nashville's MDA uses for their summer camps, so now when Andrew turns 6, I won't be as anxious about letting him go.  There are "no mamas allowed" at MDA summer camp, as Linda Decker likes to remind me.

I really, truly cannot say enough good things about this facility and the staff (both the year round staff and the volunteers).   Andrew's Girls even gave up a weekend they should have been studying since they have a big test today, to volunteer.  If you get a chance, you should definitely go/send your child.  They will leave there uplifted, more confident, and with a lifetime of memories (and so will you if it is a family weekend).  Check them out online or call the center for more information.

The Center for Courageous Kids
1501 Burnely Rd
Scottsville, KY
42164
270.618.2900

Wednesday, July 30, 2014

The One Where I Forget His Duchenneversary

Yesterday was the third anniversary of Little's diagnosis.  I forgot and I think that's awesome.  Had I thought about it that morning, I may have had a bitter day.  It may have clouded over everything I did that day, and yesterday was hard enough without it!  Here is what he looked like at the time of his dx:
Yeah, I know, most adorable 18/19 month old ever.

On Friday, Little had a surgery to remove dead and damaged fascia from around the site of his hernia operation from last March.  Monroe Carroll Jr Children's Hospital at Vanderbilt University was once again stellar in their treatment of Andrew.  The anesthesiologists came in completely prepared and knowledgeable of his DMD and the risk of MH and had precautions already in place.  MH = Malignant Hyperthermia.  Basically, a person with Duchenne can't metabolize inhaled anesthesia like your average person can.  Little's body, instead, will attempt to burn off the gases by raising his body temperature and in the process, burn himself to death.  Like literally boil his organs.  Scary stuff.  So there is no such thing as a "minor procedure" for these guys when anesthesia is involved.  Andrew also experienced emergence delirium last time, so the anesthesiologists had a plan in place for that, too.   He was given some oral medication to make him loopy and it. was. hysterical.   He was basically drunk.  He shouted "HEY, YOU!" like a belligerent frat boy at the nurses, ROARED his plastic dinosaurs, and flipped and flopped and rolled so much that we had to raise the bed rails.  It was so funny, that it kept me from crying when they took him back for surgery.  I wish someone would have recorded it.  Next time. 
 
Stethoscopes are weeEEeeeIrrRd when you're on the loopy medicine.
 
 


The surgery took about an hour.  Doc told us the damage was deeper and worse than he had anticipated and that he believes Little may have some form of a healing disorder.  We already figured that his body had attacked the stitches that should have dissolved last year, so it really wasn't that surprising to hear.  Doc told us we had an extremely funny little boy.  So that means he was awake when the doc came in and showed him his drunkenness.  No emergence delirium this time, but it was still quite unpleasant.  The pic below is from about an hour after he started coming around and you can see how unhappy he still was.
 
 
 
 
Recovering at home.
 
 
Playing Operation after his operation.
 
He had a drain tube in his incision that had to be gauzed and redressed quite frequently.  Because of that, we couldn't bathe him (still can't for about another 48 hours) nor could we shower him for at least 72 hours.  HE WAS STANK.  At about hour 73, I put him in the shower.  He hated every second of it and insisted I wrap him up like a burrito and lay him down so he could recover from the trauma of the shower.
 
 
Oh, and this happened the day after surgery.  Thank God the closet door was open and caught the dresser before it could crush Andrew.  He was standing over to the side, too, so those two things kept him from getting hurt.  He said he was pulling open the drawers to check if everything was still in there.  O....k.....?  All of my wedding glassware was shattered.  So that sucks.

 
Yes, I will be tethering it to the wall.  What's really crazy is that I had just told Mister that morning that I tethered Little's dresser to his wall and Mister looked at me like was crazy.  Well. 


This was our one outing while he had the tube in.  We were both going stir crazy and I needed to exercise.  I can't sit around for 4 days,  I just can't. 
 
So yesterday, on his Duchenneversary, he had his drain tube removed.  It wasn't bad at all, though he'd disagree with me.  Only took about 30 seconds and now we don't have to go back to Vandy for a whole month!!!! 
 
I took him to the zoo to reward him for being so brave.
I hate goats.  HATE.  They are what I believe Satan would look like on earth.  But, it was for him, not me, so I went into the nasty petting area so he could touch ALL the goats.
 I want you to look at this one.  Like REALLY look at it.

 See what I mean?




 He loved the flamingos.  We must have watched them for 15 minutes.  I was so bored.  He was not.

We were flagged down at the meerkat exhibit by a family who wanted to learn about his DAFOs (feet) and later by a PT who wanted to learn about his Kiwi.  I knew she was in the field when she could tell right away that it wasn't your average stroller.  Regular folks can't ever tell, they just think its a really cool stroller.  We can't go anywhere unnoticed.  It's frustrating sometimes.  I mean, everystinkingwhere we go, we attract attention.  There is never a "we snuck in the back and slipped out unnoticed when it was over" situation for us.  Everything is an event. I'm used to it, mostly, since that's how it's been for me for as long as I can remember, but dang it gets tiring when I just want to have a few hours with my son, left alone.  That's selfish, I know, and it's a part of my personality that I constantly struggle with.  I may seem quite extroverted to those around me, but I'm not.  I would much rather be left alone than approached spontaneously.  I am moody and I am aware of it.  If I'm in a friendly mood or in a situation that is set up for me to entertain, then bring on the attention.  But if I'm just trying to blend in and be normal, I may not (ok WILL not) greet you with a big ole sincere smile.   I was able to help those people out by letting them learn about DAFOs and how to obtain them for their son and the PT got to test out the stroller in person before ordering one for a client, and that's why I'm here.  I get that.  I just fight it sometimes.

After the zoo, we went to a back to school cookout with some friends from church.  From there, Andrew and I attended a friend's baptism - which is ALWAYS an awesome way to end the night.

Anyway, that's the story of what we did on his 3rd Duchenneversary and how we forgot all about it until the next day.  I hope I have many more years like this instead of remembering and allowing it to poop on the whole day.


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:
$4,375.00
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.

Katherine