Every Joy

Last night was a rare night. I am blessed to call it rare as it is all to familiar to some of my friends. Last night I had a "monster-under the bed" moment. And it surprised me. And I can't stop thinking about it. Last night Jet woke up crying at 1:30am. Not completely unheard of, but this kid is a GOOD sleeper. He doesn't wake up very often. And if he does he puts himself back to sleep without much fuss. But I can always tell when he needs me to come in there - it's a different cry - and last night I heard it. So I went in to hold him and rock him for a few minutes (he never lets me rock him for long) then lay him back down with his blankets to settle back into sleep. However this time he didn't settle back down. He cried as soon as I put him down and cried when I tried to rock him again. He didn't want to be left alone. He didn't want to be held. He didn't want a drink. He didn't want his diaper changed (though I did it anyway). He didn't want his daddy to rock him. He didn't seem to want anything. Nothing was making him feel better and though it had only been 20min or so I was already feeling desperate. This just doesn't happen with Jet. He doesn't do this. I laid him down and rubbed his back and brushed the curls away from his forehead and he seemed to relax. But as soon as I left he was crying again. I went to back to our my room and held the monitor in my lap as he fussed on the other end - willing him to go back to sleep with every part of my mind and praying that it was nothing. He wasn't feverish - but I'd given him some motrin anyway in case it was those incisor teeth bothering him. He'd been constipated the last few days until today and everything was finally "moving" again so maybe his tummy was hurting him. Maybe he was just angry that he woke up. Maybe he was just disoriented.

But that voice in my head kept chanting....maybe....maybe....maybe it is our turn.

If you have a child with SB or any other chronic illness or disability you absolutely know what I'm talking about. You feel like your good luck is only going to last so long. You feel like when things are good it's only a matter of time before the other shoe falls. When you hear about other people facing trial after trial, surgery after surgery, illness after illness, you think "that could be me." At any moment....it could be my turn. You try not to panic. You try to stay positive. But the reality of it is - you have big monsters hiding under your bed. Bigger than an occasional cold or stomach flu. Monsters lurking in the dark - so illusive and impossible to predict - so hard to be sure of even if you think you see them...is it a monster...or only the shadow of something not scary at all.

By the time I was brain-deep in contemplating it all - wide awake and stomach churning - I noticed the monitor had been silent for several minutes. Jet was asleep. I didn't dare breathe a deep sigh or relax just yet. But as the night went on, and I eventually drifted back off to sleep, I begin to thank God for granting us rest. I woke up eager for Jet to wake up so I could see how he was feeling. To my relief he woke up smiling and ready for breakfast. Totally happy. Totally normal. Nothing scary. It was just a shadow on the wall after all.

But as I sorted through some of the pictures I took yesterday at the park, I was still thinking about last night. And little by little all the pictures seemed to flow together to form a series of tiny lessons - all reminding me of what life is really all about.

And I loved how once again, God was using my little miracle boy, to help me, to teach me, to bring me closer to Him.

Life always changing.

It can take you by surprise.

Sometimes you're holding on tight.

Other times... you learn to let go.

And there are those times when life leaves you thinking "I don't get it."

But that's okay. We won't always understand. That's where faith comes in. Hold on to that.

In life, there will be things you love...

Things you cling to...

And search after...

And sometimes, you might get distracted and loose sight of those things you love the most...

But don't worry, you can always find them again...if you'll only look around.

Enjoy the freedoms you have been given.

But don't take advantage of them.

Stay away from darkness. It's never a good idea - the further you get away from the light, the harder it is to find your way back to it.

Life is messy. Don't be afraid of it - it is only in life's imperfections that we realize we are not in control.

And never be ashamed to ask for help. For His strength is made perfect in weakness.

We have been given so much. Sometimes more than we know what to do with. I am sitting here right now - knowing that the monster won't always stay tucked away under the bed. Does it scare me. Yes. But does it take away from the joy I have today? No.

I have a child. A little boy who was born with Spina Bifida.

And with this diagnosis comes certain "extras".

Yes there are many unknowns.

There are obstacles and burdens.

Yes we have certain fears and worries that maybe other parents do not have.

But do you know what?

Do you know what I realized as I watched my son play happily in the damp, chilly mulch at the park? I may have "extra" things in my life.

But I'm not missing anything.

Wow - that just sent little thrills to my heart. I have to say it again. :)

I am not missing anything.

What a wonderful reality.

I have so much - so many beautiful "extras" I never dreamed I would have. I know so many of you feel the same. Isn't that amazing? So while we may have a few "extras" to deal with. That's just the point - they are extras - not taking away from all the things we do have -

just adding to them.

So thank you little boy. Thank you rainy day at the park.

Thank you God for reminding me.

I have every hope.

I have every blessing.

I have every joy.

Conversations with my Cutie

The following conversation did not actually happen "word for word"...but this is what I took away from it.

Hi Jet - what are you eating?

Who me?

Of course you. What are you eating?

A powdered sugar donut from Nina's house.

Ohh. I should have known you got that from Nina's house. But why are you wiping all the crumbs in your hair?

Cause I want some more.

Well what do we do when we want more of something?

Hmm...I know this...what is it....

Stare sweetly at mommy?

No.

Pitch a fit?

No. Think about your good manners.

Hmm...

Ohhh! I remember! We say...

Yes that's it! Good job Jet! And you annunciated it so perfectly. I would have been happy with "peas" but that was lovely. Thank you for using your good manners.

You're welcome, Mommy.

Can you hear me now?

Our little guy turns 20 months tomorrow (stop it right now little boy! you're approaching 2yrs too quickly) and although he has surpassed so many of our expectations - walking to the point of wanting to run - why do kids do that?! - and now able to carry objects across the room and even push himself up to stand in the middle of the room (wow. I mean wow. I was impressed) there is one area that had to be looked into. Speech. Our little guy is not a talker - though he has grown increasingly verbal as his walking has kicked in - his expressive vocabulary is still stuck at "mama" and "dada". He can find a ball, cat, ring, train, book, blanket, duck, cow, penguin, hat, puppy, cup, m&m, lion (should I go on? you get it right) in any scenario - but he has no interest in "saying" anything. Therefore we are taking the next step - a speech evaluation. The first thing on our "to-do" list from our PT was to have his hearing checked again. So while we were pretty sure he could hear - we couldn't be sure how well he was hearing each sound - so we took him yesterday for his hearing test. And...drumroll please....HE PASSED with flying colors. :) Our little guy can hear just fine - which means when I say his name and he doesn't turn around or I yell "stop!" when he's running away from me in Target and he keeps going...he's just ignoring me...cute Jet...real cute...

Almost as cute as these adorable Koala ears.

Thanks Auntie Katie - you're so crafty. ;)

So for now - we know it's not a hearing difficulty. So we can proceed with meeting with a speech therapist and see if she can teach my child to yell "No!" at me instead of "Baa!" like he does right now. Won't that be great. ;)

But I'm not too worried. I want him to be able to communicate with me - I don't want him to get frustrated - but he's pretty good at getting his point across - so I'm going to be patient with the "talking" and take it one day at a time. After all...that's how we got to this point...one day at a time and now my little boy is running down hills in his Nina's front yard.

To be fair there is really no way not to "run" down a hill with all that gravity working with ya.

And admit it - it is so much fun.

I have no idea what happened with this picture - but there is something kind of magical about it.

Everyday is something new -

Sometimes it's big - sometimes it's just little changes that let you know life is still going...

the earth is still spinning...

Laughter is still contagious...

Love is still abounding...

And all of it....all of Life...is a wonderful...beautiful...gift.

Because it's kind of a big deal...

I know you know.

Well, most of you know.

But even if you already know... or especially if you don't know...

I'm still gonna blog about it.

Because it's still new.

Because I'm so proud of him.

(lol. Don't ask about this pic...I'll only say we were running out of ideas. haha)

And because in our little world...it's kind of a big deal.

Jet. Is. Walking.

Oh yeah...go Jet...it's yur birthday....uh-huh...

Not just your occasional few teetering steps from the couch to the chair. Really walking. Now I'm not sayin he's ready to run a marathon or anything...but you guys...he is walking!!

(insert girly squeal, wide eyes, and hands in the air)

And you know what? Do you wanna know the most amazing thing about this whole experience?

It's you.

The fact that YOU - all of you - know what a big deal this is. The fact that I don't have to explain to you why I'm excited about it or why I still follow him around like he's gonna topple over. You're not the cashier at the checkout wondering why I'm letting my son walk around the store instead of just putting him the cart to make things easier. You're not the mom of the 1 year old who's running laps around my 19 month old - my 19 month old with hands high in the air to "balance himself" - wondering I'm the one grinning from ear to ear. You're not the receptionist at the doctor's office wondering why my 19 month old is still losing his balance a little then dropping to a crawl to get somewhere fast. I don't feel the need to say "He's just learning to walk...he was born with SB..." then beam at you like you have any idea what I'm talking about. :)

You've been there from the beginning.

You've loved us from the start.

And you know exactly what I'm talking about.

And you are beaming with me.

And that...knowing that...is the very best part.

Because every blessing, every milestone, every "we didn't know if we'd ever see him do this" is enhanced by the love, support, and excitement that we see in your faces, hear in your words, and read in your comments. Each step is more meaningful knowing you are right there with us cheering him on....shaking your heads in amazement...smiling with pride while your eyes fill with tears thankfulness to God.

Because it's not the walking itself that you love.

It's our little boy...our little miracle.

It's his spirit...his inner strength...his sense of wonder...the love he inspires.

Switch the walking for a wheelchair - does the pride go away? No! Does the love fade? Never! Do the tears of thankfulness to God, for this little boy and the life he lives, simply dry up? Absolutely not! I know they don't.

Because you and I are the same.

And the love, pride, support, and gratitude I feel for you and your sweet babies and children is the same. It's an amazing surge of pride when I see one of our little buddies roll over, pull to stand, use a walker/wheelchair/crutches/leg braces to move independently. Do you know why? It's not all the hard work they've done or the time and effort of their parents to get them their - don't get me wrong - I am inspired greatly by that. It is the stuff of heros. The overcoming of the impossible. It is the foundation of greatness. But the thing that brings joy to my heart and tears to my eyes are their smiling faces. The look on their face when they control their own movements - when they did it by themselves - when they know they are doing something amazing and new - when they feel that pride and happiness in their little hearts... and they smile. It gets me.

It really gets me.

I can't think of anything more beautiful, more inspiring, more uplifting...

...than that smile.

I know you know that smile. I've seen it on your babies. :) It's amazing isn't it? Soak it in. Let it fill you up. My cup runneth over with their smiles.

With his smile.

That radiant smile that is only made richer by the heartfelt smiles it brings about in all of you. You make our smiles into sunbeams that radiate beyond our little family, and bring warmth to a much bigger community. And what a blessing, what an honor, to be a part of that community.

To know we are not alone.

We are in this together.

And when we fall...

We will lift each other up and make each other smile again...

And we are holding onto each other every day...

...because as wonderful as this new gift is...

No one should ever have to walk alone.

Dedicated to all the little angles who continue to inspire us.

"Being deeply loved gives you strength. Loving someone deeply brings you courage"

- Lao Tzu