Describing a Miracle

How do you effectively describe a miracle?

I used to think the only true miracle would be if Elijah completely recovered from his massive brain injury.  Now I realize that miracles are all around me. I see miracles everywhere I go.  And while I still hope for complete recovery, I see the miracles I might have once missed.  Every life, no matter the ability level of that person, is a miracle.  We experience miracles on a daily basis.  Every step this kid takes, every time he lifts his head and looks at me, every time he communicates, every breath he takes, every time he swallows, each smile he gives - they are all miracles.  Our boy, despite the obstacles he must overcome, is a miracle. 

A couple nights ago Andy was feeding Elijah his bedtime snack.  It was raining and I walked by to go look out the window.  Elijah visually tracked me as I went by and said a growly, "Mawhm." I turned around, tears streaming down my face, and said, "Yes, Elijah, I'm mom!"  He smiled at me.  He knew he said mom and he was proud. 

So how do you describe a miracle?  Do I tell you that the sky doesn't open up and light doesn't shine on you like you think it should?  Do I tell you how I proceeded with my evening, washing the dishes while Andy put Elijah to bed?  Do I also tell you that I could hardly see the dishes through my tears as I washed and cried and praised God for our miracle?  Life goes on - sometimes miracles take place before bath time, after a walk, while it rains, and during a yummy peach snack.

Sometimes a miracle is in a word. And it sounds like Mawhm.

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What It's Like to Be Him - Part One

I often wonder what it's like for Elijah to live in his body.  The older he gets the more obvious it is to me that he doesn't experience life the same way I do, the same way most of us do.  It's just different to live in his skin.  He sees things differently than I do.  As a result, I'm constantly trying to understand what it's like to be him.

One afternoon, I was trying to teach Elijah how to ride his trike.  He was interested for a short amount of time, but soon he got off the trike, ran to the garage and started to circle our vehicles...over and over and over again. He wasn't interested in riding his trike anymore...or anything else for that matter.

Let's be honest; I was annoyed.  Watching him get stuck on doing one thing that isn't really "play" is disheartening, especially since I was trying to teach him something fun. And then I realized...our vehicles provided some really amazing reflections.  I didn't notice it at first because I wasn't really looking.  I wasn't seeing things the way Elijah saw them.  I saw two cars.  He saw the coolest mirrors ever.

Elijah causes me to look more, to try and see the world through his eyes.  Stepping in his shoes helps me understand why some things are difficult for our little man.

Our boy has a hard time with curbs.  He doesn't really see them.  But open your eyes.  Can you see them?  This is the end of our yard and the beginning of the culdasac in front of our house...Do you see a curb there?...

If I didn't know that there was a curb there, I wouldn't be able to see it.  Now imagine you're a little boy who loves to run and has a visual impairment, would you be able to see that curb?  Even for me (an adult with no visual impairment), it's more a matter of me knowing that the curb is there than actually seeing it.  It looks flat in real life too, not just in this picture.

Sometimes stepping back and picturing what it's like to be Elijah is beneficial.  It makes me open my eyes a little more, it helps me understand the obstacles Elijah faces, and makes me appreciate the things I can see around me.

Speaking of appreciating, did you see my German Irises in the above photo?  I'm madly in love with my flowers around my mailbox. Take a closer look...

The guy at the greenhouse said they smell like grape jelly.  And he was right.  Mmm, grape jelly flowers. Look even closer...now go smell some grape jelly at the same time and you'll have the full experience. :)

We all benefit from opening our eyes a little more and seeing things differently, don't we?

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Once Upon a Time in Elijahland - Part Two

The scene: This morning in our kitchen.

Andy: Hey, that Justin Beaver guy is going to be on American Idol tonight.
Me: (confused) What?
Andy: You know...Bobby Beaver.
Me: (forehead wrinkled) Huh?
Andy: Beaver Cleaver!

[pause as I try to decifer this nonsense]

Andy: C'mon, you know, that teeny-bopper guy?
Me: Justin Bieber?
Andy: Yeah! That one!  He's on American Idol tonight.

Me: We don't watch American Idol, nor do I care about what's-his-name Justin Bieber.  Why are you telling me this?
Andy: Oh, I just heard it on the radio.

So, there you go folks.  This is what Happily Ever After looks like... ;)

Find Part One here

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I'll Have What He's Having...

"Hey, dad, whatcha got in there?"

Little man is way more into what we're eating and drinking these days.

It's pretty cute, sometimes messy, and a step in the right direction developmentally.

And sometimes it's...HILARIOUS!

Oh man, I laugh out loud every single time I look at this picture. 

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Noisy

For the most part, Elijah has been a really quiet child.  He hasn't used his voice much.  He cries and whines, but no imitation, not much babbling, and not really any words (not anything that he uses consistently enough to be considered speech).  But lately, the little man has been really noisy.  And it's a good thing.  A really good thing!

To my knowledge, kiddos don't just skip developmental steps.  There are exceptions, of course.  For example, kids don't technically need to crawl in order to walk.  There are a whole bunch of steps that do need to occur before walking, though...i.e. sitting and standing.  Likewise, kids don't just wake up one day and start talking (at least I don't think they do).  They babble, they imitate, they speak their own baby language first.

So to see Elijah imitate, even if it is screeching, is a really good thing.  It's a step in the right direction.

One night at dinner, Andy stretched and made a stretching noise...and then Elijah did it too.  Andy and Elijah went back and forth a bit - Elijah imitated.  Elijah is definitely a daddy's boy.  The first thing Elijah ever imitated was galloping after his dad.  Imitation of a vocal sound is a fairly new thing, though.  We're hearing more babbling out of the guy too.  He's realizing that his voice has power.  And it's getting noisy around here.  Which is definitely a good thing!  It reinstills hope in me that we will indeed be able to get some speech out of this kid.  I hope, I hope!

The following video is in the middle of the father/son stretching-screeching fest... Enjoy ;)



P.S. We're currently in the middle of The Listening Program with Elijah, which is something his clinic based OT recommended to us.  She thought it might help calm him in his responses to certain noises (he's terrified of sounds that come from the coffee grinder, food processor, blender, vacuum cleaner, etc.).  I don't think it's a coincidence that our little guy is getting more vocal during this therapy. Pretty cool.

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Thud

Thud-thud-thud-thud-thud-thud-thud

It's four a.m. I reluctantly awake from my slumber to a rhythmic thudding sound.  I want to pull the covers over my head and sleep for months, but I can't. I have to go to our son's room and stop him from hitting his head on the floor.  Sometimes, the thuds are louder and I spring from bed when I realize I have to stop our son from hitting his head on the wall.  It's almost too much for my tired self to take in. Is this really my life?

"Stop," I say, placing my hand on Elijah's back.  He doesn't listen so I apply a firm and gentle pressure to make him stop. "We don't hit our head on the floor," I tell him quietly and I tuck him back in bed.  He tosses and turns. Eventually he falls back to sleep and I climb back into the warm safe haven of my bed until...

Thud-thud-thud-thud-thud-thud .

It's time to wake up, time for the day to begin.  Time to start all over again.

I haven't talked much about Elijah's self-injurious behaviors on this blog.  I have talked about his self-biting, but I've never mentioned the head-banging.  Mostly because it hurts so much.  Elijah cannot tell us what he wants or needs and so he hurts himself.  And my heart breaks about a million times a day.  It's emotionally and physically exhausting to stop your child from self-destructive behaviors all day long.  It's not a hurdle I ever thought we'd need to jump.

I find myself thinking This is the hardest thing I've ever had to do. 

The good news - and there is good news! - is that the more opportunities Elijah has to talk to us, the less he hits his head on the floor.  It's not like he's trying to misbehave; Elijah is desperately trying to tell us something.  Banging his head on the floor is his way of communicating; it's just not the way we'd want him to do it.  Um, obviously.

Those talkers we have around the house? They're helping.  The school district has helped us figure out where he goes to hit his head the most often.  Now instead of hitting his head on the floor, he can use his talkers to tell us he wants to go downstairs, to ask us to open the door to our laundry room, to go outside, to call out "mama...dada" in his room, or to tell us that he's hungry or thirsty.  The talkers have helped, but they haven't caused the behaviors to stop altogether.  He still hits his head when  he has something to say and there isn't a talker readily available (or when he just doesn't want to use it).  It's hard to give him all the opportunities he needs to speak because we can't read his mind.

Often in the middle of the night, we wake up to the sound of his head hitting the floor.  That hasn't stopped.  Just recently, however, we will awake in the morning to the sound of one of his talkers saying, "Mama!....Dada!"  Hearing him call out to us (even if it's actually my recorded voice) is music to our ears.  It's so much better than thud-thud-thud.  It's an obvious and definite improvement.  We are getting there (that's 50% less head-banging associated with sleep if you think about it!)

It is hard for me to write this.  It hurts to admit that our child hurts himself. My hope for our family is that we can find a way for our son to effectively communicate with us so that we can say good-bye to these behaviors (the head banging and the self-biting).  I do believe we will get there (we've already come a long way).  I write this because if I just share the good stuff, like Pablo Elijah or pea soup face, people don't get an accurate picture of what it's like to live in Elijahland.  Sometimes, it's really hard to be here. Sometimes it's difficult for Elijah to live in his own body, difficult for him to connect with the outside world.  I write this because somewhere there is a mom, just like me...feeling desperate and sad about her child's behavior.  And you, my friend, are not alone.  I'm here with you.  I wish you didn't know what this feels like, but it's nice to know we're not alone, isn't it?

Please, please, please don't take your kid's communication for granted (or your own for that matter!).  I'd give just about anything to hear our son call out "MAMA!"... even if it was annoying, even if he did it a million times a day, even if I just wished he'd be quiet once in awhile. Anything to hear his sweet voice saying my name instead of thud. Just about anything.

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Pea Soup

When I was a little kid, I hated split pea soup.  HATED it.  In fact, my mom has a story about how much I hated it that she likes to tell.

She wrote about it in a comment on one of my posts, but essentially it goes like this...my brother was going to make me split pea soup for lunch one summer day.  I called my mom at work, crying about how he was going to make split pea soup. Waaah!    

My mom asked my brother to make something else for lunch.  Situation solved.  That phone call gave my mom and her co-workers quite a laugh though.  Not just that day, but for years to come long after I'd grown up.

Our boy? Unlike his mother, he's a fan of pea soup.  These days for a full eating experience, he likes to stick his face in his food.  So, what we have here is split pea soup face.

Once in awhile, when I'm feeding Elijah, I'll take a little taste of his soup.  And you know what?  It's not half bad.  You won't see me eating a bowl of it any time soon, but hey, I don't HATE it anymore.  Just one more thing that our little boy has taught me.  Not the first thing and certainly not the last.

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Sweet Little Brextin

I couldn't believe it this morning when I found out one of Elijah's friends is no longer with us.  Brextin passed away yesterday, just a week shy of his third birthday.  I'm kind of shocked and so very sad.  I only had the pleasure of meeting Brextin once, but I'll never forget him. He and his family worked so hard and he had the best smile!

Please take a moment to go comment on this family's blog.  I'm sure they'd appreciate knowing that people are thinking of them and praying for their comfort during this difficult time.

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Pablo, Vincent, Elijah

I've always loved art, so I have been a little sad that Elijah has showed no interest in drawing. I'd try to show him how, encourage him, help him, but he just didn't care.  Me: If I have a pen and some paper, I will doodle.

A couple of months ago, though, Elijah became interested and he started to draw.  I was (and am) so excited.

It's difficult for Elijah to bend his hand in the correct position to draw, so I hold him by his arm to help him get the marker in position. The movement of his arm and the marks he makes are all him, though.  I just give him the opportunity to create.

I think I'm as proud of him as I would be if he were Pablo Picasso or Vincent Van Gogh.  In fact, probably more so.  I mean, Van Gogh has some incredibly beautiful paintings (he's my favorite artist), but he did cut off his own ear.  So already Elijah has a few more points than good ol' Vincent.  Well, that and the fact that he's my son.  That scores some major points indeed. 

I'm pretty sure these are Elijah's titles for his art-pieces, from the top down:
#1: Daddy's brain
#2 My hair in the morning
#3: Daddy's brain (edited)
#4: I love you

Yep, I think we have an artist in training. Or a doodler like his mom.  Either way, I'm thrilled.

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