Little's Life

Little's Life

Monday, September 8, 2014

How Ya Feelin', CCK?

We feel sooooooooooooooooo good.  
Ugh we feel so good 
xxxxx xxxxx 
xxx xxx 

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:


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


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.



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.


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

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*