Merci Beaucoup!

As 2011 comes to a close, Shaina, Chaia and I wanted to say thank you. We could not even begin to write thank you cards to cover the generosity you all have shown...so, here it is.

Thank you for the hundreds of cards. Thank you for the donations. Thank you for the Au Bon Pain Gift cards, the gas cards, the Subway gift cards, the parking passes, the Browns game, the Monsters game, the Cavs game, yes even the Zips game, the Seahawks Helmet, the Gungor poster, the Cribbs autograph, the Cavs visits, the Ireland football jersey, the 407 headbows/headbands, the sock monkeys (affectionaly named Stanley, Sylvia, Stewie, Sammy, Seneca and Sebastian), thank you for the stuffed animals. Thank you for the Prayin' for Chaia pics, for the facebook encouragement, for making Chaia your facebook profile pic, for taking us to Brunos, to Crankys, to Little Italy, to Melt, to Cheesecake Factory, or bringing us Old Carolina, Subway, Chic Fila or Jimmy Johns. Thank you for the prayer shawls and blankets. Thank you for the 2 free photoshoots. Thank you for the John the Baptist willowtree angel, thank you for coming to us for Christmas, thank you for the beautiful blanket, for the books, particularly SkippyJohn Jones and Walter the Farting Dog, thank you for being our nurses and doctors, thank you for bubble baths and for letting us hold our baby even when she was intubated. Thank you for being honest with us even when it hurt. Thank you for a Christmas tree, ornaments, lights. Thank you for cleaning our house, for getting the mail, for the incredible scrapbooking pages (you freaks!), for the outfits, for checking the blog more frequently than I do, FOR PRAYING, for helping Bombard the Heavens, for relieving us from ministry responsibilities to focus on our little girl, for money jars, for incredible paintings, for muffins and mailbox ornaments, for sitting with Chaia, for sharing your stories of pain and hope, for the blue snuggie that Shaina despises me wearing but I wear anyways to teach her endurance, for lucky pennies, for pink hippos, for laughing with us (or at us) for crying with us, for rooting for us, for loving Chaia, even though many of you have never met her (or us), for the Mountain Dew, for the frames, pacifiers, for turning to God, some for the first time, others for the first time in a long time, for the Christmas dresses, for the PICU tshirt designs, for the zebra shoes, for the sock monkey hat, for spaghetti dinner fundraisers, for soup fundraisers, for covering our costs at Ronald McDonald, for getting Joe Haden to come to visit our suite, for the playlists, for journeying with us, for rooting for Jack with us, for golf, for playing Risk, for thinking of ways to help us that we would never have come up with.

Thank you for helping us to know that God has NEVER been more good, more loving and more near than He has been in 2011.

For virtually nagging God for the miraculous, thank you from the bottom of our hearts.

And God, for the ways you are answering, we thank you too.

Happy New Year!

Stadium Mustard Number One

In my mind, this is the undisputed winner.

Chaia's Story

The Epic Cinematic Experience

Chaia's Story from Mustard Revolution on Vimeo.

James Cameron Eat Your Heart Out.

Two peas in a pod

Found these two napping.

Insert your caption for this picture in the comment section.

I woke up to this email this morning

Sooooo....is there something about me that Chaia doesn't like? I slept from 12:15 - 1:30a and your daughter has been up and down ever since. I thought I was settling in at 5a after pumping, changing her diaper and getting her more milk, when I hear her gag...catch the throw up...win...while she's sitting up she poops again...lose...as I am weighing her diaper I realize I set the cup of milk down...in her crib...which she has now rolled over...LOSE. So after a bedding change she is smiling at me. I love her and I am glad to be up with her, but I might kill her!

Love you Daddy,
Mama xoxo

-------------
The night before when I was on hospital duty, she slept from 9:30 p.m.-5:30 a.m., woke up and watched Sportscenter with dad in the rocking chair and then slept from 6:30-8:30...I don't want to speculate on who Chaia loves more, but... :-)

Stadium Mustard Number Two

This was both amazing and humbling and helped remind us that there are more hearts at stake in this story than Chaia's.

Today's Theme Song

I'm not sure Jordin Sparks is singing about quite the same thing that Chaia is singing about...but today...day 95 in hospitals is a pretty remarkable day.

Chaia began the hospital journey with this:

After she was extubated she did this:

(The cross between Big Bird and Hanibal Lecter known as BiPap)

Then, she upgraded to this:

And today she said 'arrivedAIRci' to the Vent (R2D2), the BiPap, the CPap, the Hi-Flo, and last but not least the one liter of O2 she has been on for the last few weeks.

This is good news. 95 days of oxygen support...Now day 1 of no air.

We like good news.

Stadium Mustard Number Three

This is the third best blog entry from the year and its actually a triple feature! I chimed in on three different occasions for posts called PARENTING FOR DUMMIES. I like all three and since it is my blog and not yours, I included them all as the number three entry for the year!

Parenting for Dummies Part One
(Note that this was written pre-hospital, pre-calcifications, pre-mutant)

There are any number of dreams I have for you.

Any number of ambitions, hopes, aspirations.

Any number of idols I might cling to.

I even feel the pull on my heartstrings to be derailed from God's calling for you...to protect you...to preserve you.

But in the end, only one prayer will suffice.

Whether it is one more breath or one more century of breaths, may your life be leveraged for the glory of God, indebted to the grace of God and captivated by the heart of God day after day.

And may my heart, dreams and expectations stay out of your way.
**********************************************************************

Parenting for Dummies Part Two
First, Chaia has had a rough day. She was heading pretty assuredly toward re-intubation which is not great. But there is silver-lining in that...she was heading there because her respiratory system was failing...not her cardiac system...so her heart is ok right now. And because of that we can re-intubate if necessary.

But, they took some tests at 7 p.m. and the results were markedly turned toward the positive, so now we are holding off until the next round of tests at 1 a.m. to see if they think she can continue to battle on her own.

Second. Chaia is not ours. She is a gift. I mean that. It is God who gives life. So the work of parenting is pretty simple. If you commit yourself to the primary work of parenting, you will do well for yourself and for your kids.

Your primary work as a parent isn't friendship. You'll never be cool. You're old.

Your primary work as a parent isn't success. Even if they make great money, they won't give it back to you anyways...Because you're not cool and you're old.

Your primary work as a parent isn't to make them responsible adults. There's no such thing...just a bunch of posers who'd rather be playing with Legos.

Your primary work as a parent isn't "to give them every chance you never had." If you are doing that with your kid...everyone else around your kid hates your kid and hates you for spoiling your kid. (Learn to say "no")

Your primary work as a parent isn't any of these things...Instead it is STEWARDSHIP. In fact your whole life's work should be an act of stewardship. God gifts you with children, with money, with that breath you just took, with friends, with family, with food, with opportunities...and the whole point of those gifts is that you might let them roll right back up to God in thanksgiving and glory.

But in our brokeness, we take these things and distort them...and instead of rolling them back up to the giftgiver, we turn them inward toward ourselves. So money isn't stewarded...it turns into greed and consumerism. Food isn't stewarded...it turns into gluttony or apathy. Children aren't stewarded...they are turned into idols we live vicariously through.

I wrote Chaia a letter the other day before her extubation and I just remember this line that jumped off the pages of my heart. "Your mom and I love you so much...more than words can describe...but we don't love you THAT MUCH. So much that we would make you the center of our lives. So much that we would gain you and lose our souls. So much that you could become an idol. We don’t love you that much, and it is the greatest gift we can give you."

Chaia isn't, wasn't and will never be ours. She is a gift and she belongs to God.

That is what it means to follow Christ...to turn everything about our lives to Him in worship...no matter the cost.

It's better that way. With all that is in us, we know this to be true.
*******************************************************************
Parenting For Dummies Part Three

"No parent should have to bury their own child."

I've heard that said to grieving parents.

I've said that to grieving parents.

Something just donned on me this week. This isn't helpful. And its not true.

I understand the sentiment. What parent would ever want their child to precede them in death? That is an absolutely painful experience.

But as Chaia has teetered on the edge of life and death over the past almost 3 months, I've found a variety of thoughts and emotions going through my head and in my heart.

One of them has been around this thought, that no parent should have to do what we might have to do. No parent should have to go through what we're going through.

And that line of thinking takes me down a path that is very selfish and very belittling to God.

Here's why:

We rebelled. Adam. Eve. You. Me. Fractured relationship with God, because we thought God was slighting us or holding out on us with the whole fruit and tree fiasco. Sin changed everything.

Sin leaves us, things, the world...broken.

Kids are going to die. Because things aren't right. Tragedy is going to strike, because our sin has left a big 'as-is' tag on the world. Storms will come, because we chose to let rain be in the forecast.

So we make the bed, then shake our fist at God when we have to sleep in it.

And so I feel the same story of entitlement come to the surface in parenting. No parent should have to go down this road? Then, God must be slighting us or holding out on us. And my 'why God?' becomes some sort of defiant, entitled, idolatrous questioning...rather than a question that leads us to worship God in deeper waters.

So Chaia may die. Today, tomorrow, in a week, in a month, in a year, in a century. Your kid may die, too.

And perhaps before that, parenting will turn out a million ways like you didn't expect. Your kids will fall, fail and flee when you hoped they would stand, succeed and stay.

So you and I can play the victim...or worse, let our kids play the victim. And refuse to see God for who He really is.

Or we can enter in the the Grand Story that God is telling.

That He saw the 'As-Is' sticker on our world and each of our hearts, and He said "I'll pay double." And bought us with a price.

That in the midst of our deepest pain, sorrow and brokeness, He came near.

That in a world that had chosen to reject Him in the beginning, He would send a rescuer.

That the only one who has a right to file a claim in the complaint department about having to bury a child, is the One who loved us so much that He sent that child to the cross on our behalf.

That you are not your own.

That your child is not your own.

That we are His.

And that changes everything.

Stadium Mustard #4

I chose this one as a top five 2011 blog post because I like the picture...and I like the X-Men and Teenage Mutant Ninja Turtles, so my bias toward mutant types is shining forth.

Mutants and Mangers

Have I mentioned that this is not how I'd envisioned parenting?

I mean seriously? Shaina carries the same mutated gene that I do and we somehow both choose Mount Union, she falls for my stunning good looks and shoulder length blond hair? We get married and our little mutated genes do the mutated gene dance and out pops this little mutant? Less than 180 cases of this worldwide? There's 7 billion people now. And its Ben and Shaina's mutated awesomeness that gets to be one of the 180?

This is not the story I'd write.

But here we are, day 81 (who's counting right?), and God is using Chaia's story to impact people all over. It is pretty incredible. And the Gospel of God's glory is being revealed. Again, the Trinitarian Huddle in the heavenlies is not having a trouble shooting review session to see if it was Jesus or the Holy Spirit who missed the mutated gene hook up of Ben and Shaina. God has known all along of Chaia's story. And His fame and renown are becoming more tangible through this little mutant, than we ever would have scripted in our own idolatrous versions of the story of raising a child.

It's not the story any of us would have written. And yet this story is better.

2000 some years ago, the King of Kings was born. He could have been born in Rome or in some palace somewhere, to assume his place on the throne, but He was born in a manger...and let's not sanitize it. The scene, the scent, the sounds weren't anything like the nativity in your home. The King of Kings chose a trough not a throne. Chose Shepherds rather than royalty. Chose meekness instead of might.

It's not a Children's story.

And it's not the story any of us would have written. And yet this story is better.

The invitation of both the mutant and the manger is to enter a story that is not of our own scripting. It is much less concerned with career paths and 401ks. It laughs at investment portfolios and 10 year plans. It is a story that interjects hope in the midst of heartache. A story that surprises the condemned with grace. And baffles the broken with peace.

Maybe the best lesson for us this Christmas...

Is to put the pen down.

Stadium Mustard Number 5

Five Days Left in 2011! So I will break the top 5 blog posts of the year down over these last days.

If you missed numbers 6-11 you can find the links here

Number 5

This video "Mini-Sermon" that I believe with all my heart.

Chaia, Suffering and Worship from Mustard Revolution on Vimeo.

Praying For God's Fame

My Uncle John is very ill with stage four cancer. He's gone from diagnosis to treatment to hospice in a very, very short time.

So Chaia's prayin' it forward.

And you should too.

What We're Up Against

Had a couple minute brain-picking session with Chaia's cardiologist.

I share the medical side here, knowing full well, that Jesus has, had, and will have final authority on where her story goes.

Here's where we stand. Chaia's heart still has substantial damage to it. But it has adapted well and with blood pressure and heart meds, it has regulated a new normal.

We have gotten to the point where all of her meds have been transitioned from PIC line to feeding tube with the exception of pamidronate (the experimental calcification drug). Once these have all been transitioned we can remove the PIC line.

Today wraps up the 12th week of calcification treatment. Chaia's 3 month scan is scheduled for next week. This is the biggie. If the pamidronate is working, the calcifications should have either stabilized or begun reversal. If the calcifications are worse, I don't think any thing can be done medically.

The 'H' word is still a distant thing on the horizon. But I'm proud of my girls for hanging in. In a week, we will have been in the hospital for 100 days straight.

One of the challenges since moving to the four-oh is that Shaina and I are rotating between sleeping in the hospital and in the RM house. So it has been a while since I have been elbowed in the ribs and/or kidney for snoring and we both miss that. We also miss our own bed.

But 93 days are down and we'll do another 93 if we have too.

Because we're convinced there's something miraculous taking place.

Keep kneeling.

Christmas Shots

My mom and sisters' families came up the four oh for a little Christmas time. Good to see everyone.

The family both immediate and extended went in to get us this incredible gift:

Then just before bed, we had a little family photo time:

Have a Blessed Christmas and New Year

The angel Gabriel appears to Mary and says "Greetings, you who are highly favored by God."

I know its Christmas and we're to be jolly and stuff, but this has been haunting me this advent.

"You who are highly favored by God"...Blessed.

God's anointing. Favor. Blessing. On Mary?

When I think of favor, blessing or anointing, I think of health...prosperity...Midas touch...No matter what I do...It will turn out well.

And yet Mary is a 13-15 year old virgin. She has gotten pregnant out of wedlock, an offense worthy of being stoned in that culture. She has to be looked down upon by her hometown. And how is she going to explain it to them? Or to Joseph? "Oh the Holy Spirit knocked me up!" I'm not sure of the reaction she'd get...actually I'm quite sure of it...and it wouldn't be pretty.

Oh and when you go to have this illegitimate kid...there will be no place for you to labor except the barn. Oh and shortly after you have this kid, you who are highly favored of God, will need to flee for your life from King Herod. Oh and then, this gift from God, oh Mary, you who are highly favored, you're going to watch him be beaten, scorned, mocked, spit on, bloodied, broken and hung on a cross to die.

My point? Maybe biblical concepts of blessing and favor mean something drastically different than the American concepts of blessing and favor.

And God's aim isn't to prosper you, but to crush you and make you new.

So, may you and yours be highly favored and blessed by God this Christmas and New Year.

And may you endure and survive that favor and give glory to God.

Merry Christmas!

Twas the Night Before Christmas

So we went to our home church in Wadsworth for the Family Christmas Eve service.

Our friends Bruce and Sharon and their son Jordan came and watched Chaia so we could do this and even packed us a great picnic dinner for the trip! (Thanks Keeners!)

We got back, had our Christmas Eve Bath and then had our Christmas Family Photo.

We went on a magical sleigh ride.

...Making Lemonade.

Merry Christmas!

The Eyes are the Window

So, I feel like the gift of an artist is to capture what isn't there.

Chaia was a crab today. Part of it was she pulled out her NG Tube. Part of it was that she got dual shots in her thighs yesterday and was still feelin' it today. Part of it was she was awake too much.

But anyways, crabby. Grumpy. Cranky. Crying. Whining. Demanding to be held. Demanding a pacifier continually.

So for someone to capture these on a day like today...

means somebody is an artist.

That somebody is Sarah Ishler from Sarah Marie Photography.

She and her husband/assistant/human backdrop came up again today to capture a few more pictures of Chaia. We had never met Sarah prior to her catching wind of Chaia's story and offering to come up and capture Chaia's story through her lens. The two times we've been with her have been a blast and the end result speaks for itself.

Check out Sarah's facebook page, searching Sarah Marie Photography or go to her website here Sarah, you are an artist! Thanks so much!

Chaia has finally gotten past the grumpy stage and is sleeping hard right now...which means I need to do the same.

Merry Christmas!

Merry Christmas

A lot going on in the past few days. So, consider this a little blogging hiatus...

Chaia got to meet her aunt Mary Beth and uncle Brian for the first time yesterday. Mary Beth took some pictures and this one was perfect, so I thought I'd share it.

Merry Christmas

2011 Stadium Mustard (numbers 6-11)

Well, I've been at this blogging business for a few years and one of the rewards I get personally from it, is that I get to go back periodically and recall and reflect where life has happened and what God has taught me. It has all the rewards of keeping a diary, but its so much more manly than a diary.

Every year I do a 'best of' to recap some of my favorite posts personally.

So, with you on the edge of your seat, I will share links to the TOP 11 posts of 2011. You'll get the first batch now and the rest in a day or so.

Here Goes...

#11 This post on LEADERSHIP IN THE CHURCH.

#10 This moment of clarity coming back from Passion 2011 the first week of January. If you are in your 20s, you should make this pilgrimage...It is absolutely life changing. In fact, if you decide you want to go and are the first to get back to me, I'll pay half your way!

#9 Some thoughts on whether God still Heals Today. This was from February. God was readying us all along.

#8 This Post on Clean Underpants (and the sixth anniversary of my dad's death)

#7 Chaia's Birthday And Name Explanation. I remember the beauty...the traumatizing, horrifying beauty of that day like it was yesterday. I had it in my head that there would be a screen between me and D-Day and I would hold Shaina's hand and encourage her...After the baby came, they'd clean her up and pass her to our side of the screen for us to ooh and ahh at. That all changed the moment the doctor said "Dad, grab a leg."

#6 Who Could Forget the Night I saved my girls lives?


#5-#1....To be continued.

Happy Birthday to me!

29 today.

Grandma and Grandpa brought up a cake and I got to go watch the Cavs future in Kyrie Irving and Tristan Thompson (Irving is the real deal.)

But the best birthday present of the day?

"The EKG came back with relatively normalized heart function. It looks now, like she only had a borderline infarction. And the echo looks to me like it might be a little better too. I'll leave it to the professionals to make sure, though."--Chaia's Cardiologist

It'd be premature to start the celebrations, but it might be that the first echo in months has shown noticable improvement. (Week after week, we've had echos done with "no change"...which was actually good, because Chaia's heart was doing more and more and her damage was not getting worse under the added strain.)

We may know more tomorrow. But, hope is a pretty good birthday present.

Hope is good.

I like hope.

FAQ--Revolutionary Style

I get a lot of questions on facebook, email, text, etc. I figured I'd answer them here, and then if people ask you or you ask me, the response can just be 'mustard revolution'. It seems fitting that these two words be in everyone's everyday vocabulary.

Like, when you see God at work in your life...just call it a "mustard revolution."

Or when you're eating a hot dog and you drop yellow condiment all over your self, you can say, "well that was a mustard revolution"

Or when you win the game clue by guessing it was Colonel Mustard in the Kitchen with the candlestick...ok maybe a stretch?

Anyways, on to the questions:

1. Why did my friend or my search engine or my facebook addiction lead me to this website?
--5 Minute version...This video:


--Journey with us Version...Scroll down on the the blog and on the left side, you will see blog entries by month. Begin on Wednesday, September 21 "A Flat Tire Kind've Life" and you can see this Jesus-saturated story unfold.

2. How is Chaia now?
--She is ok. Not better than ok...Not worse than ok. She has been very uncomfortable for about the last week and we can't seem to pinpoint what the issue is. Part of this journey is not knowing what is a medical baby issue and what is a normal baby issue. Like when she spikes a fever and becomes agitated and clammy. Well, that could be 1. Her catching a bug that could compromise her heart. 2. Heart Failure. 3. Oh, or it could just be teeth coming in.

We will have a CT scan done in early January to see if after 3 months of Pamidronate treatments for the calcification if we can tell if they have stabilized the calcifications, reversed the calcifications or done nothing to the calcifications. In some instances they have been able to tell at 3 months. More often it is at 6 months of treatment.

3. What is a normal day for us?
--One of us stays in the hospital room over night. The other stays at the Ronald McDonald House. (One of us gets some sleep, the other is hit or miss in the hospital.) We are both at the hospital most days by about 8 or 8:30. The doctors and teams on Chaia's case will round on her anywhere from 8:30 to 10:30 in the morning, run through her case, give a bunch of numbers that used to sound like Dutch, but now we are starting to understand. After this, we do many exhillarating things like push meds, change diapers, read books, work on tummy time, etc. At noon, I typically go to the gym and play basketball with some Cleveland Clinic employees, shower and head back to the hospital. About 4 or 5, the doctors will again round and troubleshoot any issues. Then, most nights, Chaia's grandma and grandpa Penrod come visit and dinner is eaten from Au Bon Pain or the Cafeteria. Grandpa will read SkippyJon Jones (a must read!) and Grandma will work her magic to cause Chaia to move her bowels. Then, every night, we pray over Chaia, anoint her with oil and ask God to do Ezekiel 36:26. Then we do bath time, books and bed by midnight...then repeat the next day.

4. What do we need?

--Prayers. More than anything else, we have found a correlation between people's intention prayers and intercessions for Chaia and her improvement.

Tangibly, what we don't need: stuffed animals. lol. If you want to help, I think the ways the seem most practical right now are A) Au Bon Pain gift cards. I have to find lunch and dinner most days. Shaina gets hers provided as a breastfeeding mother. There is no breastfeeding father perks. In fact that's just awkward. Call the 24 hour Au Bon Pain inside the Clinic (216-721-6473)and you can purchase the gift card and they will hold it for us until we pick it up. B) If you want to contribute financially, there is a fund set up at First Merit Banks. It is the Chaia Joy Thompson Fund. It can be found through that name or probably searched by my name or Shaina's name. C) Come to the Souper Bowl Party on January 7 at 5:30 p.m.

5. What is Chaia's address?

Two options. We have a friend housesitting and bringing up our mail each week, so you can send it to our home.
13892 Cherton Street
Canal Fulton, OH 44614
or to the hospital

Cleveland Clinic
9500 Euclid Avenue
M40 Bed 15
Chaia Thompson
Cleveland, OH 44195
*Just know we have no idea at this point when we will be out of this joint.

6. Are you still planting a church in Columbus in 2012?
--God has done nothing but confirm this calling through this trial. In His time, we are Buckeye Bound. More on this in the next few days.

7. Got any good jokes?

--Well, did you hear about the belt that got arrested?
Apparently, it held up the pants.
(Thank you Josh Hawrot)

May you have a Mustard Revolution Christmas.

Chaia's Christmas Visitors

From left to right: Antawn Jamison, Alonzo Gee, Ramon Sessions and Samardo Samuels.

Chaia slept through it. After the pictures, she woke up and just stared at these giant Cavs players. Tomorrow we are going with some friends to their first home pre-season game to scope out new draft picks, Kyrie Irving and Tristan Thompson.

Should be fun. Seattle Seahawks, Joe Haden of the Browns and now the Cavs.

Chaia is going to give me my shot at being discovered and living out my dream to be a professional athlete.

Finally.

It's almost Christmas!

So this past Christmas, almost a year ago now. This was my post.

"I think God is emphasizing that inadequacy in my heart so that I will press more into him in desperation. There is so little we can control and the faster we relinquish our belief of power to His lordship, the faster we will align with His will."

2011 Christmas Ben has a word of advice for 2010 Christmas Ben...

'Hey, you think you have little control now? Just wait! Cordially, 2011 Christmas Ben'

Alot can change from one Christmas to the next. But one thing is undeniable and unchanging. In it all...

God is Near.

It's the SOUPer Bowl

Just wanted to throw a date out there for anyone who is interested.

On Saturday, January 7 at 5:30 p.m. at the Smithville United Methodist Church, there will be a gathering for fellowship and food, which is about as good a combination as you can put together.

The point of the gathering is to raise some $ for Chaia. So if you're in the Wayne County area or you live far away and are just really passionate about soup, put this date on your calendar and pack the house for Chaia!

I'm pretty sure the Browns will not be playing a postseason game that day, so what could be stopping you?

Hope to see you there!

243 North Milton Street
Smithville, OH 44677

blah

Been in bed since yesterday with a lovely combo of runny nose, sore throat, achy body.

Chaia is doing well.

Shaina has snuck away twice to bring me 'medicine' (gatorade, animal crackers and pop tarts).

Anyways, that's why the blog is quiet.

How to pray:

Pray for Chaia to be able to adjust to bolus feeds. This is our best chance at getting her to feel hungry and to re-learn how to take from the bottle/breast. She has not eaten orally since September 25. This could be very hard.

Pray for the calcifications to not only be stabilized but reversed when she gets her scan the first week of January.

Pray that Chaia's heart continues to strengthen and that the damages are contained.

Chaia wins when we kneel.

Don't stop.

Mutants and Mangers

Have I mentioned that this is not how I'd envisioned parenting?

I mean seriously? Shaina carries the same mutated gene that I do and we somehow both choose Mount Union, she falls for my stunning good looks and shoulder length blond hair? We get married and our little mutated genes do the mutated gene dance and out pops this little mutant? Less than 180 cases of this worldwide? There's 7 billion people now. And its Ben and Shaina's mutated awesomeness that gets to be one of the 180?

This is not the story I'd write.

But here we are, day 81 (who's counting right?), and God is using Chaia's story to impact people all over. It is pretty incredible. And the Gospel of God's glory is being revealed. Again, the Trinitarian Huddle in the heavenlies is not having a trouble shooting review session to see if it was Jesus or the Holy Spirit who missed the mutated gene hook up of Ben and Shaina. God has known all along of Chaia's story. And His fame and renown are becoming more tangible through this little mutant, than we ever would have scripted in our own idolatrous versions of the story of raising a child.

It's not the story any of us would have written. And yet this story is better.

2000 some years ago, the King of Kings was born. He could have been born in Rome or in some palace somewhere, to assume his place on the throne, but He was born in a manger...and let's not sanitize it. The scene, the scent, the sounds weren't anything like the nativity in your home. The King of Kings chose a trough not a throne. Chose Shepherds rather than royalty. Chose meekness instead of might.

It's not a Children's story.

And it's not the story any of us would have written. And yet this story is better.

The invitation of both the mutant and the manger is to enter a story that is not of our own scripting. It is much less concerned with career paths and 401ks. It laughs at investment portfolios and 10 year plans. It is a story that interjects hope in the midst of heartache. A story that surprises the condemned with grace. And baffles the broken with peace.

Maybe the best lesson for us this Christmas...

Is to put the pen down.

joy

Listen to this:



Then read this:

We did some 'slam poetry' last year for our Christmas Eve service...This was what we used for Joy. Read it a couple nights ago and found encouragement from it. Hope you might too. "Joy sings loudest in the midst of the storm"

JOY.
It’s more than a smile.
More than laughter that lasts for a while.
More than a poor soul in denial.
More than a happy-go-lucky kind of style.
It’s contented delight.
In the midst of the night.
When things aren’t quite right.
It’s satisfaction despite,
The Fear and the fright.
It’s a baby leaping in a mother’s womb
At the coming of the One who empties the tomb.
Its shepherds and angels sharing good news
Of the birth of a light that can’t be diffused.
Joy sings loudest in the midst of the storm
It’s melody salvation, because Christ is born.

Chaia's 80 Day Recap

Tomorrow will be 80 days in hospitals.

Got this from my sister today and thought it was worth sharing in honor of this milestone.

Create your own photo album

Chaia is doing ok in her new Temporary Living Facility.

I woke up with a sore throat this morning (awesome!) so I've been maskin' it up today.

Shaina and I are both pretty worn down...just tired of the unknown and the holding pattern, but God has brought her pretty far from day one in the hospital to day 80...so we are grateful...but nonetheless weary and worn down.

Steppin' Down's a Step Up

The Thompson convoy, complete with hundreds of cards, posters, books, stuffed animals,etc. has made the move out of the Intensive Care Unit!

We are now in the cardiac step down unit...M-40. We are living it up in room 16.

Step down is a step up...which we are stoked for.

But it is also bittersweet, because we're leaving behind some incredible people in our M43 nurses and doctors. Many have become family...and I don't even mean 'crazy uncle' kind've family...I mean legitimate, love 'em to death family.

But this is a huge step in this process. Chaia is no longer ICU worthy.

So, we are in our new Temporary Lodging Facility (Not calling it a Home...cause we don't intend to stay.)

To our PICU friends...don't forget us over here. Chaia needs visitors!

Start your week off right

We've been asking God for a miracle. And we've been fortifying Chaia's feeds with Nolan's Cheddar.

The combination can't lose.



(Shown this before, but it is seriously one of the best things I've seen in my life).

Parenting for Dummies Part Three

Read PFD One
Read PFD Two


"No parent should have to bury their own child."

I've heard that said to grieving parents.

I've said that to grieving parents.

Something just donned on me this week. This isn't helpful. And its not true.

I understand the sentiment. What parent would ever want their child to precede them in death? That is an absolutely painful experience.

But as Chaia has teetered on the edge of life and death over the past almost 3 months, I've found a variety of thoughts and emotions going through my head and in my heart.

One of them has been around this thought, that no parent should have to do what we might have to do. No parent should have to go through what we're going through.

And that line of thinking takes me down a path that is very selfish and very belittling to God.

Here's why:

We rebelled. Adam. Eve. You. Me. Fractured relationship with God, because we thought God was slighting us or holding out on us with the whole fruit and tree fiasco. Sin changed everything.

Sin leaves us, things, the world...broken.

Kids are going to die. Because things aren't right. Tragedy is going to strike, because our sin has left a big 'as-is' tag on the world. Storms will come, because we chose to let rain be in the forecast.

So we make the bed, then shake our fist at God when we have to sleep in it.

And so I feel the same story of entitlement come to the surface in parenting. No parent should have to go down this road? Then, God must be slighting us or holding out on us. And my 'why God?' becomes some sort of defiant, entitled, idolatrous questioning...rather than a question that leads us to worship God in deeper waters.

So Chaia may die. Today, tomorrow, in a week, in a month, in a year, in a century. Your kid may die, too.

And perhaps before that, parenting will turn out a million ways like you didn't expect. Your kids will fall, fail and flee when you hoped they would stand, succeed and stay.

So you and I can play the victim...or worse, let our kids play the victim. And refuse to see God for who He really is.

Or we can enter in the the Grand Story that God is telling.

That He saw the 'As-Is' sticker on our world and each of our hearts, and He said "I'll pay double." And bought us with a price.

That in the midst of our deepest pain, sorrow and brokeness, He came near.

That in a world that had chosen to reject Him in the beginning, He would send a rescuer.

That the only one who has a right to file a claim in the complaint department about having to bury a child, is the One who loved us so much that He sent that child to the cross on our behalf.

That you are not your own.

That your child is not your own.

That we are His.

And that changes everything.

Rockstar

Potential big happenings in the Mustard world this weekend. Will let you know if and when these said happenings take place, but for now, enjoy this.

Aunt Alicia and her boyfriend Drew came to watch Chaia for the evening while mom and dad went to the church staff Christmas party back in Wadsworth.

When Mom and Dad got back, they came in to this:

This is going to develop into a complex.

Experiencing God

Since the Hebrews Challenge has finished, Shaina and I have started Blackaby's "Experiencing God".

I'm not sure what led us to this book at this time...but in the first three chapters, we've had stories of God's work when Blackaby's daughter was sick with cancer and a story regarding God's work in church planting.

Two quotes from last night's chapter to hopefully encourage you today.

"If God were to give you a specific plan for your life, you would likely put your focus on the plan rather than on Him. God does not want your life to depend on a plan or an income or a person or anything else. He wants you to trust Him."

"What is God's will for my life?" is not the best question to ask. The better inquiry is, "What is God's will?" Because people are naturally self-centered, we tend to view the whole world--even God's activity--in terms of our own lives. Of course, we want to know what we should do and how events will affect us. But that is actually an inverted life-perspective. Once I know God's will, the my life gains its proper perspective, and I can adjust my life to Him and to His purposes. In other words, what is it that God is purposing to accomplish where I am? Once I know what God is doing, then I see what I should do."

Happy Friday.

Don't waste your life today.

My Day in the PICU

So I slept in today because I knew I would have some pretty big adventures waiting for me once I woke up.

At rounds, the doctors decided to terminate my milrinone. I have been on that for 74 days. But I am really trying to kick my drug habit. I'm now getting nothing through continuous IV drip.

Then, with my mom away shopping for the morning, my Dad picked out my outfit (I hadn't really worn clothes for a few months!) and got me ready for my Jazzercise class.

My neck muscles need to get stronger to support my massive eyelashes, so it was a tough workout today.

Then, after a hard workout, I went to the spa with nurse Kristen and got in the hot tub for the first time ever.

The Bubbles kind've got out of hand and, word to the wise, they don't taste all that great.

After all that excitement, I needed a nap. Dad tells me I've got to get my rest so I can watch the Browns-Steelers game tonight with him.

He says that watching the Browns produces Christ-likeness and that when Jesus was talking about the last being first, he was talking about the Browns and Draft Pick order.

I hope you're working on t-shirt designs for the contest my dad put together. It will help people remember me after I bust out of this place. So far he's only got three design entries, so I hope you will humor him.

Thank you for praying for me. I win when you kneel.

Song for the day

Where you go we will follow.

God will never give you more than you can handle.

Lets have some fun.

Insert your best cliche to encourage us today in the comment section below.

One Challenge Ends. Another Begins.

Thanks for those who joined in on the two week Hebrews Challenge!

As many of you Revolutionaries know, our connection to you and the support and encouragement and prayers you bring to us have warded off the insanity (at least for Shaina)...I've always been on the fence in this area.

So, now you get a chance to work your way into the legendary annals of The Cleveland Clinic.

I know I know. You're already on the edge of your seat. So here's the scoop.

One of the nurses has asked us to think about submitting a design that could be used on the back of the PICU staff t-shirts for the 2nd Quarter of 2012. The nurses purchase the t-shirts and the proceeds go to benefit the Children's Hospital.

So rather than hog all the hospital glory, I thought we would make this a fun and friendly competition. You guys have until Sunday night to submit your entry for a t-shirt design that would capture Chaia's story.

Here's the stipulations. I'd like to see the Bible reference to Ezekiel 36:26 on the shirt in some capacity. Can be small, like an artist's signature or however you see fit. It needs to be symbolically related to Chaia but not explicitly about Chaia, as these shirts will be worn in the hospital long after Chaia kicks this disease in the pants.

So paint. Color. Draw. Photo shop. Design. Etch. Whittle. Sculpt.

Email the entries to thompson14b@gmail.com or upload them to my facebook page and we will convene some of Chaia's favorite nurses to do the judging and determine our entry to submit for the t-shirt.

I will be thoroughly disappointed if we don't have 30 submissions for this contest. I will pout, throw tantrums, shut down the blog, have a miserable Christmas season and a horrifying new year if you Revolutionaries don't pull through. :0)

Make me (and more importantly Chaia) proud!

Monday Visitors

Mondays are chaos days.

The weekends are relatively slow and quiet and many of the doctors and staff are off on the weekends.

Then Mondays come.

Pokes, prods, plans, procedures.

Visitor after visitor.

Infectious Diseases. Genetics. Cardiology. ICU. Lactation. Nurses. Doctors. Residents. Fellows. Medical Students. Physical Therapy. Palliative Care. Child Life.

This Monday started out no different.

But then we had a visitor who came a long, long way to visit.

And he didn't smell like beef and cheese.

And yes. She is a snow princess.

Hebrews Challenge Chapter 13

Hebrews 13:1-25

The verses that are yellin' this morning.

"be content with what you have, because God has said,

“Never will I leave you;
never will I forsake you.”"

We are going to watch the two other "Longest Stay" Competitors leave the ICU today. That makes Chaia the longest standing resident on the ICU floor.

There are no prizes for that.

Day after day we watch kiddos come on the ICU floor. Some for a day and then they move one step closer to home. Some for a week and then they move one step closer to home.

And we sit here. Still with more unknowns than knowns. More mysteries than clarity.

Time and time again people come in the room and remark about how amazing it is. Cards, posters, scriptures, Christmas decor. It's nice and reminds us of the support we've got all over the world which is incredible, but it also reminds me that we've been here a long time to accumulate such a Hallmark collection.

So God's Word is timely.

"Be content with what you have. Because God is near."

That's the message of the Gospel. The Message of Christmas.

We have HIM.

So a lack of contentment suggests there is something better out there.

And that is idolatry. And that is absolutely not okay.

So today is a day for contentment.

We've made it to 70 days in the hospital.

And if it takes 70 more for God to heal this little one,

Then in full contentment,

We.

Will.

Wait.

Hebrews Challenge Chapter 12

Hebrews 12:1-29

I've added my thoughts to each of the chapters of Hebrews...about what stuck out and why.

But today...we should just let the passage speak.

7 Endure hardship as discipline; God is treating you as his children. For what children are not disciplined by their father? 8 If you are not disciplined—and everyone undergoes discipline—then you are not legitimate, not true sons and daughters at all. 9 Moreover, we have all had human fathers who disciplined us and we respected them for it. How much more should we submit to the Father of spirits and live! 10 They disciplined us for a little while as they thought best; but God disciplines us for our good, in order that we may share in his holiness. 11 No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.

12 Therefore, strengthen your feeble arms and weak knees. 13 “Make level paths for your feet,” so that the lame may not be disabled, but rather healed.

Amen (So be it)

Hebrews Challenge Chapter 11

Hebrews 11:1-40

Quite a legacy of faith in this chapter.

Individuals who had faith that who God was and what God planned was better than any alternative.

This reminded me that we are in a narrative that has been written for millennia. Individuals and communities who have traded in something small for something big. Something short-term for something lasting. Something good for something better.

And we are invited to be traders in the next chapter of God's story.

I guess where I am taking comfort in this passage is that many of the examples laid out in this chapter endured significant hardship, pain, and suffering.

Something better does not mean something easy.

But it does mean something (or Someone) worth it.

How will we be known in this narrative?

That we traded comforts for the Comforter?

That we traded little 'g' gods for the King of Kings?

That we traded our lives for the cross?

What will the legacy of FAITH be that we pass on to the next generation?

Hebrews Challenge Chapter 10

Hebrews 10:1-39

Unswerving.

Not a word that gets a lot of use in our day to day.

Shaina uses that word in her prayers whenever I'm driving.

verse 23. "Let us hold unswervingly to the hope we profess, for he who promised is faithful."

I don't know if it is our situation with Chaia in the hospital or what, but the word 'Hope' grabs me.

Where our hope is found determines who we will become.

I don't hold unswervingly to hope that the doctors will make Chaia well.

I don't hold unswervingly to hope that Chaia will be healed.

The hope I hold onto is in the better way of Jesus. That the cross, the symbol of ultimate defeat and agony was redeemed to become the symbol of rescue, forgiveness, life and joy. And that the one who pulled off that miracle is more than able, more than enough and is able to do more than we could ever ask or imagine.

Our hope is steadfastly, squarely on Jesus.

Because there's nothing better.

My hope is built on nothing less
Than Jesus’ blood and righteousness.
I dare not trust the sweetest frame,
But wholly trust in Jesus’ Name.

On Christ the solid Rock I stand,
All other ground is sinking sand;
All other ground is sinking sand.

When darkness seems to hide His face,
I rest on His unchanging grace.
In every high and stormy gale,
My anchor holds within the veil.

His oath, His covenant, His blood,
Support me in the whelming flood.
When all around my soul gives way,
He then is all my Hope and Stay.

When He shall come with trumpet sound,
Oh may I then in Him be found.
Dressed in His righteousness alone,
Faultless to stand before the throne.

Bumbos, Wagons and 5 Month Birthdays, Oh My

Chaia's 5 month birthday is today.

She's celebrating like Rock Stars do for their birthday.

First she tried out a new adventure called a bumbo seat.

Then, Chaia left the room for her 5 Month birthday parade.

And now she is passed out. It's her party and she'll sleep if she wants to.