Tuesday, February 1, 2011

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.


krousehouse said...

Those moments are so scary. I'm glad it was nothing, and that Jet was back to his super cute, super happy, super kid self this morning!

JourneyWithTheCrosiers said...

Sometimes those "extras" are what makes life so special. That little boy born with Spina Bifida is WELL WORTH the monsters that frighten us and make us question. Keeps us on our toes! We wouldn't dare want a boring life, huh!?!
And do I still need to say gorgeous pictures??? Love those LITTLE BOY (when did that happen?) running, swinging, crawling pictures.

truly blessed said...

oh joanna, i love you so much.
your words touch every part of my heart.
i know the feeling oh so well.
you've expressed them so beautifully. thank you for sharing it with me.

Jill said...

SO relieved it was just a shadow. My heart was pounding just reading that. Oh, sweet little Jet, not your turn!!!

Scasmflops said...

:) Big smiles my friend. Perfectly said. We have experienced a few of these nights too lately... very much the same... And I have the exact same thoughts. Waking in the morning to his sweet face and he has no remembrance.... We aren't missing anything. In fact, I know we are gaining so much more from our miracles. Love you!

Cheryl V. said...


You don't know me, but I stumbled upon your blog about Shea tonight, and then your son Jet's story. My youngest was born with SB and it IS an amazing journey...tears of pain, tears of joy.

I loved reading Jet's MIRACLE story...what a testimony. He is an absolutely beautiful little guy and you are an amazing writer. I plan to come back and watch him grow, if that's okay.

Thanks for sharing your story, your faith and your cute little guy.

Take care,
Cheryl - Cassidy's mom

laura said...

Joanna I really enjoy your blog and look forward to reading it. I am so glad that Jet is feeling better:)

Aurora Flores said...

I love how you appreciate Jet and all of his accomplishments. You are so lucky to have him & he's lucky to have you! He's a little miracle, and it makes me smile to see that you recognize that he's amazing!

I love your blog. It's been a while since I've read it, but I'm glad that I did today. I love Bella the way that you love Jet, and it makes me happy to see that. You're doing a great job.

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