Little's Life

Little's Life

Saturday, October 11, 2014

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


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 
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.