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 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! ;)

The second act

I’m not going to harp on the fact that David has spent over half of his life in the hospital.  We’ve said it, it’s out there, we’re sad, but there’s nothing we can do.  Instead, I’m going to focus on the positives because that’s what I do; I’m Pollyanna.  We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. (2 Cor. 4:8-9)  Ok, we’re a little destroyed.  Our precious boys is spending day after day & week after week in a hospital bed.  We have to get in our car and drive to spend time with him.  Each day we think we’re nearing the end and then there’s another setback and we’re not sure where the end is.

There are so many examples in the scripture of times when God tested those who followed Him, those who loved Him.  It’s hard for me to rationalize this because I don’t want to think God is causing harm to David just to teach me a lesson.  I’ve cried so many times and begged, “Let it be me, I’ll gladly take his place and spend every day in the hospital.  It’s not fair!”  But, there is a lesson that is being learned and faith muscles that are being stretched and pulled regardless of why this is happening.  Jason and I are a team in a truer sense than ever before.  Our family is united and strong.  I know I am more compassionate and more thoughtful.  I am a better mother to Ella and David because of my trials.

This weekend, almost in unison, Jason and I both said, “Let go and let God.”  It was so cheesy and kind of embarrassing but there’s no other way to describe what we are learning to do.  As type A overachievers, we are always working, striving & controlling everything we can.  For the first time, we are helpless.  The only thing we can do is have faith.  So we do.  We have faith and hope for our future.  We have faith in David.  We have faith in a day when our whole family will be physically together all the time.

Jeremiah 29:11 has been my life verse since high school.  It was our class verse at Westmont and it has been my personal motto through my marriage and motherhood:‘For I know the plans I have for you declares the Lord.  Plans to prosper you and not to harm you.  Plans to give you hope and a future.’

The marathon

Parenting is a journey, every parent knows that.  It’s a marathon, not a sprint and it comes with multiple ups and downs, detours and unexpected challenges.  When we received our prenatal diagnosis, we were blindsided.  We mourned and adjusted our plans and came to terms with our new life.  Then, we received David’s prenatal diagnosis of duodenal atresia.  Down syndrome took a back seat to his impending surgery and real health issues.  He sailed through his surgery, began his recovery and then got really sick.  They diagnosed  Hirschsprung’s and he rocked another surgery and sailed through another recovery.  We took him home for 12 blissful days before he returned and then overcame yet another illness and ANOTHER surgery for his G-tube.  Each step on this journey we’ve told ourselves, “Ok, if he can get through this, it’ll be smooth sailing.”  But really, that has never been true for us.  David has been in and out of the hospital his whole short life.  In fact, he’s spent days 133 inside (ha! – like it’s jail.  it kind of is) and 114 days with us.

So here we are again, with ANOTHER hospital stay.  He has pneumonia AGAIN.  His poor little lungs are too small and it’s been too cold, he can’t handle it. (California anyone?  Let’s start a petition to FINALLY let my husband let us move!)  Or is it a faulty Nissen and he’s aspirating on his stomach contents?  They’ll do more tests as he heals, but we feel back to square one with these latest health scares.  Just when we think the end is near, we have another set back.  It’s hard to run a marathon when you were prepared and trained for a sprint.  “Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.”  Proverbs 13:12  We are heart sick.  We miss our sweet boy and we’re not sure when life will be “normal” or what normal even looks like for us.

Thank you for kind thoughts, prayers and sweet gestures.  We are surviving because of your support and faithfulness.

“I’ll choose to believe that sometimes the happiest ending isn’t the one you keep longing for, but something you absolutely cannot see from where you are.”  My new life motto thanks to fellow Westmont alum, Shauna Niequist

 

The ER

Name: Ella
Age: 3.5
Emergency room visits: 0

Name: David
Age: 8 months
Emergency room visits: 6

I wonder when this season of our life will be over? I wonder when we won’t have to be afraid for every cold & flu season? I wonder when Children’s Hospital and the amazing staff there won’t be a regular fixture in our lives.

I’m about to write something that might not make me very popular. I’m about to write the “thing that must not be mentioned”. Yesterday was World Down syndrome Day. My Facebook newsfeed was flooded with parents talking about how amazing their children are and how normal their lives are. I joined in! David is amazing and we truly feel blessed that he is in our lives. But, it’s not “normal”. Taking your eight-month old to the ER for the sixth time is not “normal”. I can’t wait for normal, I long for normal. I can’t wait to read back on earlier posts and remember what a difficult season this was. I can’t wait to be in the midst of friends and birthday parties at school and have this all be a distant memory. But so far, it’s not. So far, the hospital is our “normal”.

A Down syndrome diagnosis doesn’t guarantee hospital visits. There are many, many children out there who live perfectly typical even boring lives. Someday, we may be that family. But today, we’re taking our sweet boy to the ER again.