Tag Archives: craniosynostosis

welcome to the suck.

I had the *best* week ever.

It started off right with a baby-less due date. Things did take a very promising turn when my friends snagged me away for a morning of pedicures, lunch, coffee, and window shopping.

And then.

Then.

Then I pissed off my husband in such a way that it’s a wonder he acknowledges my presence.

I don’t say that because I want sympathy or I want to talk about why our fight started. I say that because married people mess up. They hurt each other sometimes. And they argue. And they don’t always see eye to eye. And they make mistakes–or in my case, failures. And they lose their tempers. And they get annoyed and upset and sad, and every other emotion that you can think of.

Being married is not always fun or romantic. It’s really, really hard to be a godly wife or husband when you’re seething mad at one another. It’s even harder when you have to put on a smiley face and go out into the world and be around people together, or worse–out into the living room and be in front of your kids together.

We’re going on day 6 of crankiness, snappy-attitudes, frowny-faces, and crossed arms. But God has a wicked sense of humor–I know for a fact that He has fun jacking with me and Caleb. Case in point: yesterday afternoon we discovered that we had lice all up in my house–specifically on me and one of my children. And also the dogs got sprayed by a skunk. Again.

Awesome.

So guess who stayed up until 2:30 a.m. greasing and de-licing my head? Through his anger, straight through his disappointment and irritation–Caleb tenderly and patiently picked nits and bugs out of my slimy hair for 3 hours. You know–kind of how Christ loves the church and stuff.

Pretty sure God is laughing so hard He shot Cherry Coke out of his nose. I’m also pretty sure God drinks Cherry Coke.

It is purely by His grace that the two of us are still married. The short version of our life together so far? 5 horrible years of an alcohol-fueled hell, followed by weight gain and weight loss, anxiety and depression, craniosynostosis and skull surgeries, medical bills and layoffs, 2 lost babies and several royal screw-ups by yours truly.

We are here.

Sometimes it feels like we are out in the deep, deep ocean and the waves are slamming us down under the surface and we’re getting saltwater shoved up our noses and our eyes sting, and whenever we’re able to come up for air, rain is coming down as hard as it can, and we can barely breathe or stay afloat.

Sometimes the waves are just choppy enough to be adventurous and fun.

And sometimes the ocean is calm and glass-like and we can see our toes underwater and enjoy the sunset.

Our marriage is always changing. We are always changing. I can’t say I don’t hope the worst is behind us. Hard times suck. But we don’t call it quits when we’re in a storm–we hold onto each other tighter.

For better or for worse.

….

So to recap, my husband is aggravated with me, my parents will be here in a week, I have lice, and my house smells like skunk. This is real life. One day, when the water is calm again, I’ll laugh my head off about it.

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All Political and Junk.

I can’t help it; between watching the big debate (Stewart vs. O’Reilly) and also the other debates (the guy in office right now vs. some other guy who wants to be in office) (the guy who’s in the most useless position ever right now vs. some other guy who wants to be in the most useless position ever), and my Facebook news feed consisting of almost nothing except political rants and raves, I’m compelled to write the following:

Mike Huckabee is not running for president this year. He’s just not.

Sorry.

So, Christians who don’t know how to vote this election: It’s clear we are having a dilemma. Allow me to humbly offer some random thoughts in no particular order:

1. If God wanted this country back to Him, He could do it–no matter who’s in office. I realize that some people are better attuned to what God is saying; some people are actively seeking God’s will; and of course there are others who hear God’s direction and then choose to do the exact opposite thing.

But I’ve been doing this bible study on Esther and lemme tell you: after reading just 2 chapters of that particular book, it’s not hard to see that God is all the time divinely intervening with people and situations–from a poor orphaned little Jewish girl, right up to the most powerful king in the whole wide world.

I learned that even though things seem random and unplanned, God’s not up in Heaven saying “Oh crap! Didn’t see that coming! Regroup!” Proverbs 21:1 says, “The king’s heart is like a stream directed by the Lord; He turns it wherever He pleases.” Good to know!

I couldn’t resist. It was too hilarious.

2. The perks of living in the United States will probably eventually lead to our undoing. I’m not saying let’s kick democracy out the door, because? Freedom of religion, freedom of speech–I like that I have those. As a Christian, I struggle with the fact that a man with a heart for God voluntarily runs for an office where he knows he’ll be forced to uphold laws which back up other laws that might or might not line up with God’s will. As an American I struggle with the fact that a man of any religion would try to enforce laws that would go against certain unalienable rights as defined by our constitution. Did any of that make sense?

The people running for office are pledging to uphold those freedoms for all of us–so, yay! Christians get to believe that life begins at conception–but, in this country, legally, not everybody has to agree. Call me crazy, but it sounds like we’re saying we want to change the laws to say “Freedom of Religion to all the people…unless what they believe goes against our religion!” What to do, what to do? I…honestly don’t know.

3. We might have to face it: this country might never get back to God. We can’t take away religious freedoms; but times are a-changing and the tables are not turning in favor of things we know to be biblically legit. Scriptures say that at some point, more and more people will turn away from God. Already, we have to be so tender-footed. Don’t think the “new normal” is biblical? Can’t support certain (probably permanent) changes in modern society? Best keep it to yourself because no one wants to hear you spew your bigoted Christian poison. We are expected to apologize left and right for things we believe right down to our very core. Our kids can’t mention God in school. Maybe one day, our grandkids will have to worship with their families in secret.

(Sorry. It’s a doomy, gloomy kind of day and it’s getting the best of me. But I take heart in knowing that if that indeed ever became the case, I would be glad because 1. it’s better than the alternative of not knowing God, and 2. they’d probably have a stronger faith than I could even dream of.)

4. No one man is going to fix it all. The president just doesn’t have the power that everyone thinks he has. Do we only vote every four years in November? There are key elections that we would do well to be aware of and take part in.

5. Again, no one man is going to fix it all. Our country will be in danger of financial ruin until we all truly learn–and teach our kids–how to deal with money. Even if it comes with 0% interest for the first year. Even if it’s real leather. Even if we’ll wear those shoes at least 30 times this season. We’re so fat and greedy. It’s time to stop the madness.

6. And while we’re on the subject of our kids, let’s not just get them everything just because we can. Your 8-year-old does not need an iPhone. Really. No, REALLY. QUIT RAISING BRATS. Our kids can stand to not participate in every activity known to man. We don’t have to say yes to them every time they ask for something, whether it be expensive (gaming system) or free (sleepover for the hundredth time at their friend’s house.) Yes, they’ll whine and throw fits. Deal with it–it’s called parenting. And our kids have to learn moderation and restraint not just with money, but with everything. We are their teachers. Let’s do our job right.

7. One last thing about teaching our kids–and I’m still admittedly working on this one myself–there’s got to be a way to bring up children who are Christ-following, high-functioning members of society. Do we pray with our children? Do we read the bible with them and to them? Are we raising Christians temporarily living as human beings? Or human beings temporarily living as Christians? Quite honestly, that question just stung me a little. Okay, quite honestly it stung me a lot.

“These commandments that I give you today are to be on your hearts. Impress them on your children. Talk about them when you sit at home and when you walk along the road, when you lie down and when you get up. Tie them as symbols on your hands and bind them on your foreheads. Write them on the door frames of your houses and on your gates.” Deuteronomy 6:6-9

8. If we’re really serious about representing Christ in our communities, we can’t hole up in Church like it’s some sort of apocalyptic shelter where we keep the world–in all its fugly glory–completely shut out. If we spend every waking minute at church, on church grounds, with church groups, etc. etc. etc. then when are we finding time to take the gospel out? We might as well live on a compound and paint rainbows on the inside of our cement-and-barbed-wire fence. A priest in a church I went to when I was teenager said this: “A church should not be used primarily as a shelter; it is a powerhouse where we come to worship, to support each other, and to draw strength enough to go back out into the world.”

Christians–we are special. Precious. Set apart. But we are not perfect, and we must strive, daily, to live as God would want us to live. We have to be prayerful about the choices we make, about the things we say and the things we do. We will answer for what we did here on Earth and we will not be able to put any kind of political spin on it; we will be judged in heaven, by our God himself–who saw everything, even into our own hearts. That fact can bring either fear or comfort.

I don’t want to be scared.

Let’s not freak out over this election. Do your duty as an American and vote, but remember your duties as a child of God: Pray. Fear the Lord. Observe His commands. Love Him with all your heart, with all your soul, with all your mind, and with all your strength. Love Him by loving and serving one another.

And know that no matter who is in the White House, God is in control.


A Face Only A Mother Could Love

Last week, Caleb and I took the family downtown OKC to meet up with a photographer friend of mine for a little Sunday-afternoon picture-taking action. She spent about an hour with the kids; we grabbed ice-cream on the way home and that was that.

I got my proofs back yesterday. And I know what I’m going to say in these next paragraphs is going to sound supa-vain, but…my son is beautiful.

No, he really, really is. My little boy–my cranio baby. The grumpy, rumple-faced looking kid with the protruding forehead has turned out to be one of the most gorgeous children I’ve ever laid my eyes on, and I’m of course not just saying that because he’s my son.

Along with Merrick’s diagnosis of craniosynostosis in 2008 came hours upon hours of online research–my first and foremost concern was getting Merrick’s skull nice and roomy for future brain growth. I was consumed with the fear of his upcoming surgery and I prayed that he would be strong enough at 4 months old to survive it. Anything after that was purely cosmetic…and yet, my second biggest worry was that he would look different for the rest of his life. I dwelled mostly on the before/after pictures of cranio babies, and, to me, though every one of those children had undergone rounds of extensive corrective surgery, they still had the cranio “look” years later.

What would this condition ultimately do to him? How would the surgery affect his life in years to come? Would people be able to tell? Would his head be misshapen or his face show hints of deformity? Would my son look normal enough to fit in? Would I look at him in 2, or 5, or 15 years, and feel pride–or pity–or sorrow? What kind of a mother was I, for caring so much about outward appearances? I would love–I did love–my son, no matter what he looked like; I’d go through hell and back if it meant keeping him happy and healthy.

Fast-foward almost 4 years later, and Merrick is not only happy and healthy, he’s rambunctious and hilarious, and entertaining and caring and sweet and brave and protective and scrappy; he’s been my little tough man from the moment he was born.

And I can say, with all the objectivity I can muster, that he’s breathtakingly handsome.

So you people forgive me if I am overly-delighted about the radiant beauty of all of my children. Their unique facial expressions, their mischievous little grins, their funny personalities and quirks–the rest of the world could find them hideous but I will look at them and my heart will always burst with pride.

Check out Michele Morgan Photography if you’re in the market for some family photos. She is an amazing picture-taker and kid-charmer. Can’t wait to get this finished product up on my wall!


Work in Progress

I spent a little time yesterday organizing my blog (blorganizing? Bloganizing? Organblogging?) into categories. I’m nowhere near done, but I did effectively put into place 2 categories that were significantly important to me: God blogs and craniosynostosis blogs. I can’t tell you how many people google “my baby has craniosynostosis” and wind up at my site. I hate for those people to have to wade through 5 and a half years’ worth of pointless ramblings about ninja dogs and zombie apocalypses, so I handy-fied my page and put in the craniosynostosis category. Now strangers can easily read about the diagnosis and treatment of our son’s craniosynostosis, and about how the months leading up to his surgery almost landed me in the looney bin and my husband in the ground.

 You’re welcome.

The God stuff is there, but…be warned. I’ve added posts that were written years ago, before I was really keen on the idea of church. Some of them are heavy on cusswords and bad attitude. I just thought it was interesting to show my mindset’s progression. If God can get me to stop cussing in my blogs (blussing? Clogging?) then He can seriously do anything. But you already knew that.

I’m considering other categories. Torturing my children, conspiracy theories, movie reviews. A vast majority of my posts have been about my dogs driving me crazy. My art projects might actually require their own website.

And now I am leaving lest my children break something while they’re riding their bikes in the house at the speed of sound.


Champ

 
I honestly can’t believe it.
 
It’s been one whole year since Merrick’s skull was hacked to pieces, and we’ve managed not to knock/bump/bang/jab/stab his exposed brain since then.
 
Don’t get me wrong–Merrick is a wild man. His forehead’s taken a beating; his nose has cushioned many a fall. But the rest of his perfect little head is not our doing–only by the grace of God has he survived in our house, on our tile floors, around our sharp corners, our pushy dogs, and my clumsiness. Without a helmet. Or a padded cage.
 
2008 was super-eventful for our family. Looking back, I know there were worse things that could’ve happened. I have friends who have gone through so much more with their own sweet babies. But at that point, I felt like life was bitch-slapping us left and right. Our old golden retriever died. Caleb got laid off one month before Merrick was due, and then, of course, Merrick came–and then, there was something off with his head. Our pediatrician noticed it only a few hours after his birth–“Hmm. We’ll just keep an eye on that head shape”–but I blew it off, thinking that the good doctor must’ve been smoking crack since the kid was still crunched from, oh, BEING BORN.
 
Note: turns out, doctors sometimes know what they’re talking about.
 
When we first found out Merrick had craniosynostosis, my family was visiting–and thank God for that, too. Although we waited for the results of x-rays and ultrasounds and CAT scans to come back before we let ourselves believe it, Caleb and I suspected. Every night I’d sit and rock him and stroke his hair, and I’d run my fingers over and over the little bumpy ridgeline that ran right down the middle of his head. I’d look at his forehead as I fed him and I’d notice how it protruded so much more than the girls’ had, and I knew. But it was still a blow.
 
Craniosynostosis is a big word for a woman with 1 newborn, 2 other kids, 3 dogs, and a husband who’d just been laid off. It’s not something I could easily wrap my head around (Get it? Head? As in skull? Head–you know, because…um, nevermind.) Merrick’s skull was closed. Where a normal infant would have a nice soft spot, Merrick had none. And as his brain grew, the parts of his skull that were open would be pushed in all kinds of wrong directions, and his head shape took on the look of an…I don’t even know what. Maybe a hammer, or a boat. It was long. He looked angry all the time. There had to have been a great deal of pressure on his brain, because he threw up constantly–literally, constantly. I was either feeding him or changing his clothes, or my clothes. My parents, my friends, specialists, doctors, nurses–they all said he’d be fine, that we’d get through the appointments and the tests and the surgery, and within a year’s time, it would seem like a dream. But I felt like the world was coming to an end.
 
I’d never had to worry about anything so serious in my life. I’d never had to make the really tough decisions–although, in this case, there was no decision to make. Merrick had to have surgery. There was no question.
 
At 4 months old, on a Wednesday morning in late September, Merrick had his craniosynostosis surgery at OU Children’s Hospital. Despite needing a blood transfusion in recovery (and despite getting Caleb’s jacked-up blood) he came through it extremely well. It was so hard to see him all bandaged and wired up…and bruised and swollen. It was hard seeing him lying in a hospital bed, period, and knowing that I couldn’t pick him up, even if he cried. Every little beep from the machines he was hooked up to freaked me out, every squirm he made had me calling for a nurse.
 
And yet, as terrible as I thought he looked, he was far from helpless. He was stronger than I was. “Pain? What pain? I’m just pissed because you won’t take this stupid velcro bootie off my foot. What the hell, Mom?”
 
We were outta there by Friday afternoon.
 
Things since then have gone great. Merrick was a trooper, I tell you. The biggest complication we had in the weeks after sugery? An ear-infection, brought on by a runny nose which came with the cold he must’ve picked up in the uber-sanitary place that is the hospital. Once he was over that, we tore up the town. I got some dirty looks just about everywhere I went with him–that scar was gruesome, and while the stitches were in, there was to be no covering it. A few people would ask questions–I’m sure most people thought we had either dropped him accidentally or beat him on purpose. Ah, good times.
 
You’d never know just by looking at him today that in his very young life, Merrick was as courageous–well, mostly oblivious, but I like to think he was courageous–as he was. He’s got a gorgeous (perfectly shaped) head of silky blond hair, a smooth forehead, and, most of the time, a happy, happy look on his face. He walked at 9 months. He’s running, climbing, talking, laughing, and getting into everything he’s not supposed to. Children in general can change your life, and that’s been true of all mine–but Merrick in particular has taught me–and my husband–more about strength and gratitude than we ever imagined possible.
 

This Is Off Subject, But…

 
It occured to me that my kid bears an uncanny resemblance to Vic Mackey.

Hell Week

 
Oh yeah.
 
Nevermind just recovering from having his head hacked into; that was sooooo 7 days ago. Right now, Merrick’s battling an ear infection, a wicked bad runny nose, and a nasty cough. Plus, he’s teething. He hasn’t gone two waking minutes without screaming–and he hasn’t slept unless he’s safe in our arms, which has lead to some seriously sleepless nights (and days) for me and Caleb.
 
Caleb has that freak fever Mia got a week ago. He’s been running between 101 and 103 all day long. What the hell?
 
Our house is so messy that professionals need to be called, lest our kids get taken away from us. We’ve eaten left-over pasta and PBJ sandwiches until we’re blue in the face. And we’re all getting on each other’s last nerve.
 
My favorite movie is "Signs". What’s not to love? A man struggling with his faith, 2 kids who are too smart for their own good, aliens in a corn field, and Joaquin Phoenix. I bet none of the people in that movie could see the light at the end of that tunnel–but God had a plan for them. Twisted as it was, God had a plan.
 
I’m trying to say little prayers of thanks and think happy thoughts whenever the urge strikes me to sit in a closed garage with my car running. It could be worse. Sniffles fade and fevers break. And we’re nowhere near a cornfield. 7 days from now, we’ll all look back on this and laugh…

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