Little's Life

Little's Life

Sunday, May 29, 2016

Growth

I am a member of the church of Christ.  I grew up attending church services every Wednesday night and twice on Sundays.   We went to Bible Bowl, Impact, Uplift, Castle Bluff, youth retreats, mission trips, and Singing School.

We ate together, camped out, slept on opposite sides of the gym during lock ins, and swam in gender specific shifts covered neck to knees.  Our shorts that we never worn on Sundays were finger tips length at a minimum, girls tank tops were at least 3 fingers wide on the shoulders, and the boys were expected to cut their hair short (the 90s, though...).

 We played Broom Ball, Blind Volleyball, and Hearts.  We learned about the dangers of dancing and alcohol.  We sang Jars of Clay and Steven Curtis Chapman (a capella, of course) on the van rides to Six Flags.  We were taught that even one drink of beer was a sin and divorce was a 1 way ticket straight to hell.  We knew our disciples, apostles, fruits of the spirit, books of the Bible, and John 3:16.  We knew we were heathens for not being able to afford to go to the one christian school around here.  We made some of our closest, longest lasting friendships in youth group (Hey DannaDannaDannaDannaDanna.  Hey Stasia.  Hey Dustin.).

We learned that "we don't run in the house of the Lord"!  We learned to love our neighbors.  We knew that Jesus was the son of God and that he died on the cross for our salvation.  We learned to repent and be baptized.  We were typical teenagers on Saturday nights and obedient followers on Sunday mornings.  We developed a genuine love for each other and for Christ.  We dreaded and avoided at all costs "Budget Sunday".  We had annual homemade ice cream competitions.  We learned that Satan was a big bad wolf and one should "Build Your Life on the Rock".

We laughed.  A lot.  As teens, we sat up front and in the center.  We were taught that only men were allowed to lead during worship and that only baptized church members were allowed to partake of communion.  We knew giggling during the sermon was shameful.  We studied directly out of the Bible and no other text.  We learned to be kind and compassionate and above all, to show the love of Jesus to everyone around us.   We sang our hearts out while holding those heavy hymnals.  We learned every word of "The Princess Bride".

We learned not to question the Elders, Deacons, Preacher, or tradition.  We learned right and wrong and that there is no grey area. We learned that we were saved after baptism and yet taught to feel shame and guilt over every sin after it.  We were warned not to take the Lord's Supper in an unworthy manner, never researching what exactly Paul meant when he said that in Corinthians.  We were taught that a good christian accepts, gives, worships, and serves others without complaint or inquiry.

And then we grew up.

We had children.  We started to think for ourselves.  We began to entertain those questions about why we worship how we do.  We started studying the Bible instead of memorizing lists and verses for Sunday School goals.  We experienced life and the joys and traumas it brings and went to our Bibles and deacons and elders for answers and comfort.  Some of us became the new crop of deacons and elders and preachers.  Some of us dipped into the sins we were taught as children would prevent us from Heaven.  Some of us came back.  Some of us are still searching.  Some of us are changing our churches and our worship.  Some of us are stuck in the past and traditions.  Some of us are caught somewhere in the middle.  Like me.

I have been a member of four congregations in my life.  The first two as a child and young married adult, the second two as a mom going through divorce with a terminally ill son.  The first two taught me to live in shame and guilt and a constant state of repentance over the fact that my marriage was ending.  The third congregation taught me that nothing I did caused Andrew to be sick and that God loves me more than my failed marriage.  The fourth congregation has opened my mind to a whole new side of God and worship that I would have been to afraid to give a second look 2 years ago.  I'm learning the difference between tradition and scripture.  My teacher this morning described it as freedom and he's spot on.  There's a freedom in my spiritual life I've never had before.

I have so much love for my years at the first church.  My foundation in Christ was set there.  My youth minister performed my wedding ceremony when I was 25.  I learned so much about how to treat people with love and compassion.  I keep in touch with almost my entire youth group.  We've been to each other's weddings, baby showers, and life events.
Our children play together.

My second church was by far the most black and wide, tradition lead congregation of them all.  We even had a sermon one Sunday morning on the proper attire for worship.  It wasn't 'come as you are' it was 'go to the store and buy something fancy because anything less is disrespectful to the Lord'.  It was the only place to go on the glacier, so I felt I had no choice. What was I supposed to do?  Not go at all?  For shaaaaaaame!!!

Those 30 years spent in the uber conservative/traditional congregations left me very conflicted.  I knew that my divorce was not of my will, but I had it drilled into me that being divorced meant an eternity in the pits of Hell.  Period.  I knew there was punishment for sin while on this Earth, too.  So I had a small nagging question of  whether or not I deserved to have a child with this awful disease because of the mistakes I'd made during my own life. I spent two years in counseling over both of these issues.

My third was my beloved Barker's Mill in Clarksville, TN.  That was a church family like nothing I'd ever experienced before.

In the military, bonds are created quickly and deeply, and so it was there.  I've never felt so close and so loved and so accepted by an entire congregation like that.  There were no cliques, no tiers.  Just christian love.

I was so encouraged to grow in my prayer life and in my involvement there.  How I miss hearing Andrew's name being brought before the Father every week.  Like my first church, I made friendships there that I will have forever (Hey Desi.  Hey Whitney.  Hey Candice.)  I even got to bring one of my favorite Alaskan based friends into the fold (Hey Valerie.).
That was Andrew cheering one of Valerie's children on during her baptism.  They showered Andrew with birthday cards 9 months after we'd left them.


That being said, Barker's Mill does still tend to operate on the more traditional end of the spectrum.  And that's ok.  I didn't get a sense of close mindedness from them, more of an operational conservative way about the church service. (hymnals only, women not in leadership roles, closed communion).  The people of Barker's Mill taught me that I am still worthy and forgiven even in divorce.  I learned about the passage in John 9 that frees me from carrying responsibility over my son's random mutation in his genes and drove deeper my belief that all things can and should be used for the glory of God.
"1As Jesus was passing by, He saw a man blind from birth. 2His disciples asked Him, “Rabbi, who sinned,this man or his parents, that he was born blind?”3Jesus answered, “Neither this man nor his parents sinned, but this happened that the works of God would be displayed in him.…"
 I cherish every minute I got to be a part of the Barker's Mill congregation and if life were to ever take me back there, I'd join again.

And now, here I am at Sylvan Hills church of Christ.  They have mic'd singers in the pews (gasp!).  They don't have any hymnals in the backs of the chairs (shriek!).  There is a woman in charge of the children's ministry (whaaaaaaat????).  They let me run a yoga class in their classroom building (eeeeek!)

Our children partake in the Lord's Supper right along with those of us who have been baptized (faint).  I was hesitant at first.  More like indignant.  But as I worshiped there and got to know people, I realized that these weren't spur of the moment decisions.  Elders meet and study and pray on every new thing that comes up.  They keep their eyes open to new ideas.  They entertain questions.  They have a class on Sunday mornings called "Round Table It"  specifically to research and pray on the questions we weren't allowed to have in my old church!  We are allowed to have opinions and voice them.  My child has learned more about who Jesus is to him personally in the one year we've worshiped here than I ever did as a child.  Yes, the kids still memorize Bible verses and the plagues and such things, but the emphasis here is so much deeper than repeating words back to their teachers.

These sweet babies, MY baby, will have a completely different journey in Christ than I did.  Andrew will not have the same fears, shame, guilt, and conflicting spiritual ideas as I did.  As I do.  Its hard work unlearning what you've known your whole to be true.  I'm a work in progress,  Little will always know the freedom of being allowed to raise questions, leave traditions behind that dont have a hard scriptural basis, and being able to worship the way that sets right in his soul.  Gone are the days of being forced to sit in silence and stillness (for me - this Little boy has always been a roamer).
This is not a post meant to bash anyone's congregation or worship style.  What I'm learning is that there's not any one right way to come together in His name.  I'm not saying all old school churches of Christ are beating down their members' ideas.  I'm not saying your grandparents are wrong  I'm not saying this was anyone else's experience other than mine and those I've discussed this with.  I'm saying that I was taught things as concrete that are fluid. I am saying that I am so incredibly thankful that I am raising my child in a church family where he will grow up knowing he is loved by his Father even through his sins.  When Andrew needs to ask for more clarity on a biblical principle, he will be encouraged instead of hushed or written off as argumentative.  I'm saying that it is my job, as his mother and as a christian, to study and find out the truth in the Bible instead of just taking someone else's view as the end of the discussion.

Andrew is growing up in a time of worship where he will be learning that fellowship is just as important as reverence.  I am so grateful for this place and what I'm learning.  I am so excited for where this faith adventure takes Andrew.  I'm excited to see where it takes me.






Wednesday, June 24, 2015

A LittleYoga

Hey friends! So I've had a lot going on these past few months.  Like a LOT a lot.  Too much to write in here right now.  Andrew and I are still in the funk of it at the moment, but it'll all work out one day.  I'll update I. Here at some point, but for today I want to talk about yoga.  I have set up a GoFundMe account to see if I can get myself Yoga Alliance certified to start off this newest chapter of life.  I'll copy/paste it here.

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Hey, Everyone!  My name is Katherine and yes, I feel like an a$$ asking you for your hard earned money.  This is different from my yearly fundraising for MDA - that money doesn't go to me and could possibly fund the cure for my son someday.  So I have NO issue asking you to fork over some change for that.  But this?  Money for me? Yeah.  Aca-awkward.  But I don't know what else to do.  So here goes.

I have a 5 yr old son named Andrew.  He is the most wonderful, difficult, silly, stubborn, beautiful mess.  He is so Little and smart and loves to dance and is really starting to develop a precious love for God.  He also happens to have Duchenne Muscular Dystrophy, a rare and terminal rapidly progressive muscle wasting disease.  Little can walk today, but in a few years he will not.  Soon after that, he will lose the ability to lift his arms.  His lungs will fail.  His heart will fail.  There is no cure.  There is no treatment nor drug to slow the progression of the disease.  He is not expected to live past his early 20s.  

I have chronic headaches, neck and shoulder pain that trigger migraines every few days.  The posture one takes from caring for someone one who only comes up to your waist coupled with carrying said human on your left hip every day for 5.5 years will do that to you.  I will be doing this his entire life.  (Yes, I do have to carry him even though he can walk.  He moves at a snail's pace and fatigues after just a few minutes on his feet.)

So what does all this have to do with yoga and why do I need financial help?

Well, yoga is the one hour of the day where I am both pain free and anxiety free.  Practicing takes away every  muscle ache, every desire to crack a vertebrae.  I focus on breathing and stretching and not on Little's upcoming doctor appointments or how many times he's already fallen that day.   I want to give that hour to others.  I want to give an hour like that to my son.  I want to go into senior centers and rehabilitation centers and give an hour of relief to them.   I want to support ,yield and my child financially.  I want to give him a future above the poverty level.   I want to safely and effectively stretch my child when he can no longer move on his own.  But to do that, I need certification.  And certification costs money.  Andrew and I are on an incredibly tight (like non existent) budget due to the loss of income that has come our way recently.  We have had to sell our home in KY and head to AR.  We are also mooching off of my sister and brother-in-law so we have a roof over our heads.   So, yeah, no extra change for yoga school.  But this is what I want to do with my life.  

I need to start NOW while Little is relatively healthy and I can get to class for 9 months, start teaching, and eventually rent a studio space.  I don't know how long I have with Andrew, and I want to do everything I can to make his quality of life better.  So that's why I need your help.  School starts in Sept and I need to register within the next few weeks, but I can't register unless I know I will be able to pay for it.  $3000 for certification, $ for classes outside of the teaching studio where I can do my homework, and $ for practice tools.  $3500 should cover it.  So, that's my novella.  

Can  you help us?
Namaste - Katherine

You can follow along with us at (and our FB link is on the right hand side of the page)
www.HomemadeTaterTot.blogspot.com





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 
ugh!
xxxxx xxxxx 
xxx xxx 
whoop 
x 
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.