Little's Life

Little's Life

Wednesday, October 24, 2012

When the Bubble Bursts

I thought I lived in a sweet little house in Kentucky.  There's a garage and the same front door from Lowe's that adorns every house on my street, a tiny front porch that for 3 years now I've been telling myself will one day hold a set of rockers.  All my furniture fits inside of it.  There are bedrooms and bathrooms and a kitchen that could use a bigger pantry.  It sure looks like a house.  It feels like a house.  But it's not a house.  I recently learned that instead, I've been living in a bubble.

The people who come into this house/bubble are people who focus on the positives - how far Little has progressed, what milestones he's hit.  They are physical and occupational therapists, friends and family members.  All people who are helping him and love him and are genuinely excited with each new step he takes.  This house/bubble is a place of support and reflection on how far Little has come since his diagnosis 26 months ago.  He has gained so many abilities and skills that we were nervous he might never be able to do.  His doctors and therapists are all delighted with where he's at and they should be!  They are the ones who have helped him come so far.  So this house/bubble is a place of joy over everything Little is and can do and we don't worry too much about what he isn't able to do yet.

Now, I'm not blind to the fact that his motor skills are behind the ones in other children his age - heck, I know that he's behind other children who are half his age.  But it's not something I witness every day.  Little and I spend most of our time either alone or with other adults.  He doesn't go to daycare, he's not in preschool yet, I only have one friend with another 2 year old that we socialize with on a regular basis.  When the children your child plays with are older, it's easy to brush off the differences between them with a 'well of course they're faster/nimbler/more coordinated, they're 6, Andrew's 2' shrug.  I am cognizant, though, that he is physically less coordinated, clumsier.  He falls a lot.  And when he does, he lacks the reflexes to throw his arms out to prevent himself from landing on his face.  He can't climb stairs.  He can't jump or run.  He waddles.  Typical Duchenne boy.  Atypical 2 year old boy.  But, thanks to my bubble home,  it isn't always at the forefront of my mind.  He's not "poor little Andrew", he's just my Little.  To clarify, it's not the Duchenne that is not ever present in my mind - that is always there - it's the physical differences between Little and other young children that I don't usually have any reason to have on my radar right now.

So cut to about a month ago at a birthday party for a friend's son who was turning 3.  Adorable little affair.  She really went all out with the decor and theme and it was super successful.  So there we were, surrounded by children of all ages; some Little's age exactly, some a little younger, some a tad older, but who were all literally running circles around him.  He didn't seem to mind or even notice, but I did.  Mister did, too.  We stood back and watched as Andrew joined in and tried to play with the toys that were there - a soccer ball, a fishing pole, a climb through tent, etc - but as we watched these children zipping around and breezing through activities all 2 year olds should be able to do while Andrew just kind of teetered around trying not to get knocked down by excited toddlers streaming past,  it felt like knives going through my heart.  Watching children the same age as my own son doing exactly what they are supposed to be doing, playing and laughing and running and jumping with ease absolutely broke my heart.  About 15 minutes and 2 falls in, Little hit the dirt big time.  He fell so hard that he landed on his stomach with an "uuuummmph", face down in the dirt and I dropped my beloved camera on the ground in order to beat another mom to him (I have to get to him first.  As ya'll know, he can't be picked up by the arm and it's natural instinct for people to pick a toddler up from the ground that way so if you don't know he has DMD I have to beat you to him when he falls or else yell out "Don't pull his arm!" like a crazy person - so I chose to ditch the camera and do a homerun slide to him.  I like to keep it classy.).  When I picked him up, his face was half covered in dirt - I think you could actually hear what was left of my heart shatter against my ribs.   After that Little didn't want to be put down any more.  I don't know if he was afraid to fall again or tired or embarrassed.  He didn't even want to join in on the scavenger hunt.  Luckily the food arrived a few minutes later.  As I stood behind some of the ones who were clamoring for pizza, I was digging my nails into the side of my thumb and my teeth into my cheek in a desperate attempt to stop the tears from spilling out of my eyes.  "Don't you dare cry at this little boy's birthday party, Katherine.  This is not about you, this is a happy day for an innocent 3 year old.  Suck it up."  I was so angry in that moment that I was having that reaction.  I didn't want anyone to know that I was getting upset about my son's genetic condition at another child's celebration.  I felt so ashamed of myself.  How dare I be so selfish?  Watching Little devour pizza always makes me laugh, so that got me through the rest of the time that we stayed at the party.  He eats it like a ravenous wolf, I swear - and so much of it!  I think he ate 3 pieces.  I wonder how many pies I'll have to order at a time when he's a teenager?  So after Little finished eating, we said our goodbyes and got in the car.  As soon as the doors were shut, I lost it.  Totally lost it. When I say "lost it" I am talking about the sobbing, shaking shoulders, crying so hard you don't make a sound except for when you are gasping for breath kind of crying.  I didn't even have to say a thing to Mister, he knew.  He had seen it all and felt it, too.  In fact, just before the food came, he took Little away from the other kids and went up a hill and played with him alone for a few minutes.  So in the car I didn't have to explain my grief to him, he just put his hand on my back and drove.

I couldn't believe I reacted like that.  It was SO unexpected.  I'm telling ya'll it was like a slap in the face - no, more than that.  Like a punch in the gut that takes all your breath away for a few seconds and leaves you just stunned and disoriented.  Like - Where the heck did that come from?   I've been in similar situations before and not left there a blubbering mess.  I've been to Jump Zone with church play group and there are tons of things Little can't do there and I was fine.  I've been to the zoo surrounded by toddlers running around and I was fine.  I've left him in childcare at the Y several times now and we only cry a little.  Yeah, I said we.  So why this time?  Was it because I had Mister with me and had a chance to relax a little instead of being so focused on Little that I got a chance to actually notice what was going on around me?  Was it because I didn't know anyone else there and wasn't totally comfortable since everyone there didn't already know about Andrew?  Was it because I hadn't slept well for a few days and was tired/cranky/emotional?  I guess it was a combination of all of the above plus it was really the first time I've had it smack in my face.  It was right there.  Even Mister saw it, and that's really saying something.  The contrast between Andrew's movements and abilities and those of every other child there were too great to ignore.  No denying it.  Andrew has Duchenne.  His muscles are failing him.

Here's the part of the blog where I want so say that I believe that in time, things like birthday parties and other occasions where we are surrounded by "normal" kids won't trigger such an extreme response in me anymore, but I don't think that will be reality.  I think that it will be more like a roller coaster. It'll happen less frequently over the next few years as he continues to improve but then as Little really starts to deteriorate, it'll happen more frequently, then taper off again once he gets to the non-ambulatory stage and kind of plateaus for a number of years again.  In fact, we have another birthday party this weekend and I'm not anticipating any kind of emotional reaction to it at all.  But I wasn't expecting one last time.  This time, though, everyone there will already know about Little and I will have met most of the people there and it is at my church building so the environment will be familiar.  Sorry about the timing of this post, Whitney.  Love  We also have an office Halloween party centered around the children 2 days after that and Mister won't even be there, so I'm taking Little myself.  I'm getting into a lot of these situations now so they are getting to be less intense.  The hardest ones for me are the ones where no one knows about him - where no one knows not to lead him by the arm or to try and chase him or to say "Oh well the pay off is when he gives you grand babies to spoil" or something else along those lines that they have no idea stings all the way to my core. Those are the situations where I'm most on edge because I have to be hyper aware with Little and what others are doing with him.

But....basically I'm going to be a hot mess forever.  Sorry.  I don't want you guys to tip toe around me or Andrew.  I know that sounds like a contradiction there.  "I'm a basket case but ignore it!"  Bleph.  Please don't exclude Andrew from things because you are afraid that I am too fragile to handle it. I love you all and I love that some of you care enough about me to want to spare my feelings but please don't treat me differently bc you are afraid that you might make me cry.  Newsflash:  I always cry.  I cry when I'm happy, I cry when I'm sad, I cry when I laugh too hard, I cry when I'm angry, I cry when I think about how blessed I am, I cry when I'm overwhelmed, I cry when I'm excited, I cry when I watch tv, I cry when Wayne does the announcements at church, I cry when I find out you tried not to make me cry.  So it's pointless, really, to treat me any differently than you did before Little received his diagnosis. And I'm always going to write about whatever I'm going through - as openly and honestly as I can.  It is how I process and grow. So sometimes it will be tough for you to read my posts, sometimes you'll get a glimpse of how ridiculous I am. Just love us, through it all; that's all I ask.  Then I'll cry because you do.  :)

I also want to note that I did contact my awesome friend who threw the birthday party and let her know I would be posting this, as not to blindside her.  I let her know that her family is special to me and we were so thrilled to be a part of that celebration and to please continue including us in future ones as it was certainly just a fluke that her party just happened to be the one where Mister and I had our first real taste of how different Little is compared to other 2 year olds.

 I guess the point in writing this blog wasn't just to tell you all without special needs children what happened, it was to tell you all who read this who do have special needs children that these moments happen to all of us.  I've had a lot of you tell me that my faith inspires you, as does my strength.  Well I always have faith - but I am NOT always strong.  I have my moments where it is too much for me to keep it to together, just like you do.  Sometimes I am literally biting my tongue until I can run to the car or into the ladies locker room at the YMCA so I can hide for a 3 minute cry session so I can rejoin the world where no one is the wiser - a red blotchy face is easy to hide in a gym full of sweaty flushed people (remember how I said "we only cry a little" earlier?).  Life can be difficult for anyone, but especially so for those of us with special children.  When the life you envisioned for your child (and yourself) gets ripped away from you and replaced with the dreaded move to Holland, you repeatedly find yourself knocked to the floor without warning.  It happens, and I get it.  I will never judge you for it and I will pray for you any time you ask.  Just leave me a comment or FB me or e-mail me at  Leaning on God and each other - that's how you get through.  You can't be afraid or ashamed to ask for help.  I am not.  I am too emotional to tell my stories to everyone in person - I'll just dissolve into tears (shocker!) and not be able to finish, that's why I write them out here. It's also why I puffy heart whoever invented text messaging. But I'm not too proud to ask to for help anymore.  So if ya'll need my help, here I am.

And speaking of needing help - people around me, ya'll know I'm going to need it for about the next 6 weeks, right?  :) Love ya'll!

I cannot wait for ya'll to see this post's Little's League member!!!!!!  This may be our cutest photo yet!  
Meet Kylan!


  1. Powerful post. And I'm missing something.. what's going on for the next 6 weeks?

  2. Dang. You made me cry, too.

  3. Man, the things I take for granted :-(. What a moving post.