The sleep study

Where to begin? I haven’t posted in awhile so the fact that David & I are back at Children’s Hospital may come as a surprise. But this visit was planned & scheduled. The doctors are doing a sleep study to make sure they fully understand David’s swallow & breathing and if sleep affects either. Lucky me, I get to stay with him. He’s hooked up to a bunch of machines in a pitch black room so, since I don’t go to sleep at 7pm like him, I’m in the cafeteria ready People magazine & having “dinner” (anyone who’s spent much time in hospitals knows this is often potato chips, chocolate, a fruit cup and free coffee)
There’s not much to report so far. It took D a while to get settled after they stuck him with all the electrodes. I even mentioned to the nurse that I hoped the first 30 minutes weren’t actually part of the test since crying uncontrollably isn’t part of his normal bedtime routine. She assured me it wasn’t.
So now we wait. Like so many other events in this sweet boys life only time will tell. I hope he’ll have a good night and I’ll have a good one too.
(I’d post a picture of him, but his face is literally wrapped up like a mummy & even though he’s the cutest mummy I’ve ever seen, I’m not sure I want to document it.)

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The break

Being a parent is very much like Harry Potter. Once you become a parent, like Voldemort, a piece of your soul lives outside of your body forever. In some ways you are more yourself than ever and in other ways, you’ll never be whole again.
I am writing this post from sunny Arizona. I flew down yesterday to spend three days with my mom for her birthday. I left both kiddos in the capable hands of Jason & his mom. This break couldn’t have come at a better time. After 9 (or more) months of stress, anxiety & tears I am taking every advantage of laying by the pool, sleeping in (yes, 8am is a treat!), getting massages & eating delicious meals that Ella would turn her nose up at. It has been wonderful to have a break from my kids, except for one thing. My kids aren’t here.
I’ve heard that even after you lose a limb or an appendage, you still have a “phantom limb”. That one often feels pain, heat, cold or tingles even when the limb is no longer there. That’s how I’m feeling today. I swear David is giggling in the next room or Ella is shouting at me to come play with her. I hear them & smell them everywhere. They are always with me since a piece of me is always with them.
I am enjoying every second of my kid-free three days. I needed it more than I realized. I still have a day & a half to soak it all in. It’s bliss, it’s relaxing, it’s enjoyable. Now excuse me while I go Skype with my babes.

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Update: the procedure

Thank you all for the prayers! David did great! They’re going to keep him overnight for observation, but he should be home tomorrow by 3:00. They said everything looks “normal”. So far, it looks like a tone & muscle issue, and a “floppy” trachea. They’d like to do a sleep study in the near future but, another surgery doesn’t seem to be on the horizon (for now) He’s is his happy, smiley self and flirting with all the nurses. God is good!

The procedure

At 7:30 today Drs. are performing a bronchoscopy on David. He’ll be put under anesthesia and a tube and camera will be inserted down his throat. The Drs. are hoping to get some information about why he has gotten sick so continuously this winter. This will also be the first step in better understanding why he has trouble swallowing & hopefully be the beginning of the end of the G-tube.
This poor boy has been through more than his fair share of challenges since he was born. He has spent more than half his life in the hospital & has been subjected to needle pokes, breathing masks that resemble Hannibal Lector, tests, procedures, surgeries & exams that would leaving any adult jaded and screaming, “Enough!” And yet he does it all with a smile that melts your heart & a sweetness that literally draws people to him. He is seemingly unaffected, for now. He is loving and cuddly and precious.
Please keep David, the doctors, Jason, Ella & I in your prayers today. 2014 is proving to be not much of an improvement over 2013. We’re holding on to the last shreds of hope that this is the beginning of the end of the most difficult season of our lives & that boring, routine family life is right around the corner.

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The teenager

Yes readers, you’re right, I am too young to be the parent of a teenager.  Well, really, I’m not too young but I am not the parent of a teenager.  A passer by my home last night may have thought differently.  The conversation went like this:

 

Jason: “Ella, if you’re going to watch a show, you need to sit, not jump on the couch.”

Ella (still jumping and unresponsive)

Jason: “Ella, you’re spilling your snack.  Sit down.”

Ella (sits on the coffee table, spilling snacks as she goes) “Ok daddy.”

Jason: “Ella, you know we don’t sit there.  Get down.”

Ella (ignoring him, eating snacks and trying to look around him at her show)

Jason: “Ok Ella, no show.  You need to go to your room and think about how you didn’t listen to Daddy.”

Ella runs to her room and slams the door.

I continue making dinner.

Ella comes out a few minutes later.

Ella: “Mama, can we talk?” (Proud mama/therapist moment; I’m always asking her to talk about her feelings.)

Me: “Sure, sweetie.  Do you want to talk about how you didn’t listen to Daddy?”

Ella: “Um, no.  I wanna talk about Daddy is crazy.”

Me: (Trying not to laugh) “Well, that’s not true . . .”

Ella: (interrupting me) “Ok, mama, I have my bag and I’m going to go find another family.”

She sets her princess treasure chest on the counter and starts showing me what she packed.

Ella: “Mama, I have my princess nightgown and my princesses and my lip bop (chapstick in Ella speak).  I am going to leave and find a new family.”

Jason: “Ella, Mommy & Daddy would be really sad if you left.”

Ella: “Ok, David can come and Mama can come.”

Me: “Ella, Daddy would miss us. ”

Ella: “Ok, Daddy can come too.”

Me: “Well, if we’re all going than maybe we should just stay here with our family.”

Ahh, the fickle ways of a teenager, I mean, a toddler. Or really, is there much difference between the two?
 

I truly thought I had a few years before she packed a bag and threatened to leave.  How in the world did my mother ever take me seriously those few times I tried the same thing?

The leap

Thank you, thank you Mark Batterson for this inspiring picture!

Quit living as if the purpose of life is to arrive safely at death.
Set God-sized goals.  Pursue God-ordained passions.
Go after a dream that is destined to fail without divine intervention.
Keep asking questions. Keep making mistakes.
Keep seeking God.
Stop pointing out problems and become part of the solution.
Stop repeating the past and start creating the future.
Stop playing it safe and start taking risks.
Expand your horizons.  Accumulate experiences.
Enjoy the journey.
Find every excuse you can to celebrate everything you can.  
Live like today is the first day and the last day of your life.
Don’t let what’s wrong with you keep you from worshipping what’s right with God.
Burn sinful bridges.  Blaze new trails.
Don’t let fear dictate your decisions.
Take a flying leap of faith.
Quit holding out.  Quit holding back.
Push all of your chips to the middle of the table.
It’s time to ante up all of your faith.
It’s time to go all in.
It’s time to go all out.

The charge

Am I the worst blogger ever?  Or maybe just the best mama ever?  Really, neither of those are true, but my sweet boy has been home for 5 days and has spent many minutes and hours of those 5 days in my arms, so my blog and writing inevitably took a backseat.  I have lot of stories and words in my head, but they all seem to disappear with just one smile from this one:

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Or when this happens: (they really are hugging – promise)

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Or when Ella wants to hang out with me:

ImageSee why it’s hard to focusing on blogging?  Life happens.

So, today I’m purposeful, focused and hopefully back on track.  I’m taking a page from Shauna Niequist again (either imitation is the sincerest form of flattery or I’ll be issued a restraining order soon).  But seriously, this woman is good, really good.  Who can read her words and not be inspired?!  And it helps that being purposeful and charging forward falls right in line with All In,  the book by Mark Batterson our small group has been studying this year.  I love this book because Mark speaks to who both Jason and I are at our core.  I am a dreamer and impulsive and will charge headfirst into almost anything; reacting first, thinking later.  Thank the Lord for giving me level headed Jason.  He thinks first, is purposeful, and logical.  He makes me calmer and wiser and I like to think I shake him up just enough.  He didn’t plan to marry a tall, blonde (ish), lover of over-celebrating everything, and although he rolls his eyes, I know he’s secretly happy to be along for the ride.

So, what’s next?  It’s a little late in the year for resolutions.  And besides, this year I focused on my un-resolutions.  But, a quarter of the year is over and that’s as good a time as any to reevaluate where I’ve been and where I’m going.  So, thanks to Shauna, I’ll spend the next few months of 2014 focused on:

How can I use what God’s given me to make the world better, brighter, more beautiful in this season?

And thank you Mark Batterson for adding just enough of a challenge and an edge to make me leap forward:

We can all be tempted to give up on something we know God wants us to pursue.  His will can be hard, and we can simply wear down and throw in the towel.  Check mark ONE area of your life in which you believe God wants you to CHARGE forward and then write ONE practical step you can take to move ahead.
– Your marriage
– Your finances
– Your health- An addiction you deal with
– How you relate to one of your children
– A goal you need to set
– A kingdom cause you need to enter into
– Another area ____________________

We heard tonight that the toughest step is the first step, go charge it!

The weather is spring like, my children are both under one roof and school is over for Jason next month.  That seems like as good a reason as any to charge, dive, jump and skip onto the next adventure.  Stay tuned!

The IDSC

What an honor & a blessing to be featured in the International Down syndrome Coalition’s “all life is precious” campaign! We are certainly grateful for the precious life of our sweet boy!
Check out the idsc on Instagram to see David & other sweet ones!

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The boulder

Thank you to my mother for this reminder:

One day God delivered a huge boulder to a certain man’s front yard. God said,

“Every day go out and push on the boulder.”

So every day the man did just that. One day when the man arrived at the huge rock, there stood the Devil.

“Why do you keep pushing on the rock day after day? You’re not making a lick of progress. The boulder hasn’t moved one inch!” the Devil chided. The man agreed.
The next day the man went to the rock but decided against going through the effort. A few days later when the man returned to the rock, there stood God.

“Why have you stopped pushing on the rock?” God asked the man?

“It wasn’t doing any good. I haven’t moved that rock even an inch.”

“I didn’t ask you to move the rock. I only asked you to push on it. You don’t see any difference in the rock, but do you see any difference in YOU?” Surprised, the man looked down at his new bulging biceps,

“Well now that you mention it, I guess I do!”

Check out my muscles! 😉