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!

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…

What I Remember of Merrick’s Surgery and Hospital Stay

 

Okay. So. I put up an album in Photos the whole ordeal, so you can look if you want but it won’t be in your face if you don’t. I do agree that I’d rather see a baby looking tired and swollen rather than hooked up to tubes and machinery, but that scar does make even me a little queasy sometimes. Anyway. Here’s what happened:

 

On Wednesday morning I got up at the butt-crack of dawn, packed, and drank coffee like a mofo. I hated to wake Merrick up at all–1) because I knew what the rest of the day had in store for him, and 2) because I figured he’d be starving and consequently cranky. We had to leave the house by 4:45 a.m. in order to snag Caleb’s dad, who had flown in the night before, from the airport. I waited until the last minute to pick him up out of his crib and change his diaper, then I left him in his snuggy little sleeper and popped him straight into his car seat. He snoozed all the way to the OU Children’s Hospital.

 

We parked. We made our way to the third floor, checked in, and settled down to wait. I was sort of hoping we’d have a little time to spend with Merrick before they called us back, but since he was number 1 on the list, it didn’t take long. They took us back into a hallway full of beds and curtains. Over the course of the next half-hour, 50 different people came by and asked the same questions over and over. We put Merrick in a fuzzy yellow hospital gown and some cute hospital booties. He was happy as a clam–talkative and smiley–so unaware, and that alone was heartbreaking. In curtained rooms all around us, you could hear kids crying, and begging their parents not to leave them.

 

So sad.

 

When the lady who takes away the babies came to take away our baby, I started to panic. I thought about grabbing my son and calmly walking out of that place–surely his head was not so messed up that he couldn’t just learn to live with it! But we handed him off, and he just smiled and cooed at us over the baby-taker’s shoulder as they went through the double doors.

 

And then I did loose it a little bit.

 

We knew it would be awhile before the operation got going, so we grabbed some breakfast in the cafeteria before camping out in the waiting room. The surgery started at 7:30. At 8:45 or so the doctor came out and shook our hands–he was done. (WARNING: UTTER GROSSNESS AHEAD) He had basically scalped my child, then cut out a 2-inch wide strip of skull-bone from the center of his head, and even more from the sides, creating a big honkin’ soft spot where Merrick previously had none…and then sewed it all back up.

 

I expected to be able to go back and see Merrick in no more than 30 minutes–but an hour and a half later we were still waiting. I think it would be fair to classify the entire morning as one of the most horrible times of my life so far. It turns out he ended up needing a blood transfusion in the recovery room. We were finally allowed to go back there 2 hours later.

 

Caleb seemed eerily calm–I was hyperventilating on the inside. I won’t go into detail, but let’s just say I didn’t like seeing my baby all wired up in a hospital bed with a white bandage over his tender little head–although at that particular point I don’t think I could’ve handled seeing the actual scar. And "scar" is a mild word for it–maybe "massive head wound" would work better. His head was very tall, and I couldn’t help but imagine that it was his brain overflowing from the gaping hole in his skull. (It wasn’t.)

 

They moved us up to the Pediatric Intensive Care Unit, where 2 nurses exclusively pampered Merrick for 24 hours. His head was a little puffy on the first day, but other than that everything seemed normal–and unless someone was jacking with his IV or pricking his fingers, he slept. I could not pick him up for a while, and I wasn’t allowed to breastfeed since they needed to keep an exact measure of how much he ate, so I pumped and fed him through a bottle.

 

The next morning, the neurosurgeons came to remove the bandage, revealing the most gruesome sight I’ve ever seen–partly because for the nature of what it was, and partly because it was on a little bitty baby…I pretty much couldn’t stand to look at my own son. His head and face were very swollen, but he could still open both of his eyes–which was apparently not typical. He was taken off morphine…this day was the worst day. Merrick was just not lovin’ life at this point. We were transferred to the floor where the plain old sick kids stay; where the nurses care for 4 or more (I want to say a lot more) patients at a time–and they might check on your child if he was dying. Maybe.

 

We did a lot of holding him up rather than laying him down so the swelling wouldn’t get so bad–and it didn’t. His left eye got pretty puffy but he could still see out of it. His entire head felt soft and mushy and it rippled like a water bed whenever I rocked him. Ewwwww, no?

 

On the morning of the third day, Merrick was unhooked from most of his whatnots, mainly because he kept pulling everything off or out. His swelling was less than what it had been the day before even though we had been warned the third day would be the worst. He had actually slept a little bit the night before, and he was talkative and happy. His neurosurgeon said he looked a lot better than most cranio patients and that we would probably get to take him home by the next day, if not that afternoon. We expected the discharge process to take forever (seeing as how getting Merrick’s medication always took an hour or more), but once the doc gave the go-ahead, that hospital staff practically drop-kicked our asses out of there. We were literally walking out of that place within 15 minutes–true story, no lie!

 

And so we came home.

 

Other than having some trouble with a sore throat (from the ventilator) and constipation (I suppose from all the different meds?), Merrick is doing wonderfully. He’s still not keen on laying down on his back, but I think it’s his tummy that’s bothering him more than his head. Everything is back to normal–it’s almost as if nothing ever happened. I keep thinking to myself: "That was easy…a little too easy." But I am thankful. I’m so very thankful, to our family and our friends for all their help and support. I’m thankful that Merrick’s condition was mild and that it’s essentially cured now. I’m thankful we only stayed 3 days in that depressing hospital while some poor kids are there–sometimes alone–for months and months. We are definitely counting our blessings and enjoying every single moment with our son who is, was, and always will be, perfect, in every way.

Another Quickie Real Quick

 

We’re home–have been since Friday afternoon. Merrick is great–he’s not even slightly fussy and we haven’t been giving him anything stronger than infant tylenol for the alleged pain he’s supposed to be in. He hasn’t been too fond of sleeping in his crib, but I want to chalk that up to being held by Mommy and Daddy holding him 24/7 this past week.

 

It’s been nice having the extra time to spend with my mom. She did an excellent job taking care of the kids, keeping the house clean, and remembering to feed the dogs. I’m going to shrivel up and die when she leaves tomorrow.

 

Cheyenne has raised a whopping $775.00 for Multiple Sclerosis, and we are still one week out from the big walk. We’ve been so impressed and thankful with what everyone has contributed so far.

 

I’m going to work on a nice long entry about the whole experience–after I process it in my own head, but since we all know my brain hasn’t exactly been running at maximum efficiency in the past 5 months–okay, 12 months–it might take a while.

Back for a Second

  Merrick is fine. Surgery went well. Took what seemed like forever, but it went well. He was pretty swollen and pissed off for a while but today he’s getting back to his sweet self. It definitely looks like someone hacked his head wide open and then crudely stitched it back up. Other than that, things are good–ran by the house for a quick shower and then I’m off to the hospital again. We might even get to come home early. I’ll update more indepth later on in the week. Thanks to everyone who wrote and called to check on us! Love, Toni

Things Are Looking Up…

 

Captain’s Log, September…what the hell day is this? The 20th? 21st? 3 days left until the surgery. I am glad to report that Mia is back to her wild little self. Her temperature is back down to normal, her appetite is up, and I’m thinking we can spring her from the prison that has been her room. The poor little thing was not happy about missing one day of school and a soccer game–not so much that she actually felt like going, but more so because it means the world does go on without her. I don’t know what it was that she had–there were no other symptoms with the fever except for being tired and a bit cranky. But she’s fine now. And that’s all I care about.

 

That said, we are still holding our breaths for Wednesday. I imagine God, up there in the clouds, watching over us, and saying to his angels, "Okay, let’s give that family down there a wicked bad flu, complete with fever and projectile vomitting…on my signal…wait for it…". And Tuesday night we’ll all simultaneously start sweating and barfing…

 

But surely God would never do a thing like that.

 

Caleb shaved his head. Straight-up shaved it. Partly because I dared him to, but mostly so he and Merrick could be baldies together–not that Merrick had that much hair to begin with. I don’t even think the doctors will be cutting it all off. Mia did not react well to Caleb’s Howie-haircut. I tried to make it all better by secretly telling her that "Daddy says you can draw on his head with markers!", but she was pretty upset, and now I think he’s a little self concious about his new bald head. Ten bucks says that when he picks my mom up at the airport today, he’s going to wear a hat. While he’s gone, I’ll convince Mia to cash in on the marker deal.

 

Oh, yeah. My mom. Is coming. Today. My house is surprisingly clean–I don’t really know how it happened. Cheyenne–gotta love that girl–has been extremely helpful by straightening up her room and the bathroom. And then I guess the rest followed by trying to rid the house of germs. Have I ever mentioned how much I love bleach wipes? I’m tempted to wash the dogs. Tempted.

A Snippet of Bad News

 

Mia’s sick. Damnit. Damnit all to hell.

 

She woke up screaming with a fever of 101.3 last night, straight out of nowhere. We put her a cool bath, gave her some Tylenol, and sent her back to bed. It was a long night–today she’s feeling better. Her temperature is down to 99.whatever and I have her back in her room watching movies on the portable DVD player. I go in there only to throw food at her while I hold my breath and try not to touch anything.

 

See, Merrick CANNOT get sick. He can’t get a slight fever, he can’t cough, he can’t even look like he’s thinking about coming down with something–or else his surgery will be postponed for another 3 long months, and we just can’t be having all that.

 

I’ve never realized how hard it truly is to keep little kids healthy for any significant length of time. They’re always pukey, or snotty, or rotten from some kind of virus or another. The one week where I need everyone to be as fit as a fiddle–THE ONE WEEK–and Mia comes down with a crud so fierce it’s threatening to put us all down for the count…but I should’ve known.

 

We’ve given Caleb’s blood. We’ve set up Merrick’s pre-op appointment and we’ve spoken with the neurosurgeon again about every possible thing we need to know. We’re all set–now we’re on pins and needles and we’re bathing in Germ-X every 10 seconds just so we can make it through the next 5 days.

 

UUUUGGGGGGGHHHHHH!!!

 

(Cue violinist.)

 

My mom will be flying in Sunday. The blood bank won’t touch me because apparently all the time I spent living in Italy gave me Mad Cow disease. (That would explain a lot.) I’ve been elected homeroom representative for Mia’s Pre-K class. I missed a PTA meeting last night. Cheyenne’s got a Book-Club field trip to the Library and Mia’s got a soccer game tomorrow. My house is covered in a 6-inch layer of dirty dog hair and the Vanilla Breeze Glade Plug-Ins I bought are not doing their job. I haven’t washed my hair in 3 days and I haven’t shaved my legs since God knows when. Merrick wants my undivided attention every hour of everyday and frankly I just don’t know if I’m going to survive the next couple weeks.

 

(Deep Cleansing Breath.)

 

P.S. Cheyenne has raised so much money for Multiple Sclerosis. She’s had to up her goal 3 times already and it looks like she’ll have to do it again, AND she still has 2 weeks until the walk. There’s your snippet of good news for today.

 

P.P.S. A neato word is tintinnabulation (tin-tih-nab-yuh-LAY-shuhn). It means a tinkling sound, as of a bell or bells. The first thing that came to mind was the sound of someone going pee-pee in the potty. But that’s just me.

A Snippet of Good News

 

Don’t you just love that word–"snippet"? It means a small bit, scrap, or fragment. Or it could mean a small or insignificant person. And by the way, the Spanish word of the day is descanso. And there you have it. No clue what it means. I was too lazy to look into it.

 

I’ve been alerted to the fact that several people have been reading this blog–people that I normally would never cuss in front of, would never discuss religion or politics, (or bipolar tendencies, or homicidal thoughts about my husband, or rage against complete strangers and their rabid toy poodles, or fear of tornadoes and hostile alien takeovers, and so on and so forth) with, so I hope I haven’t offended anyone with my utter lack of couth or my completely irrational and absurd thought process…but then again this is my damn page and I’ll write what I want. And don’t anybody expect anything too deep or too funny for the next few weeks. Random humorless updates is probably all I’ll have the brain power for.

 

Sorry.

 

Well, no I’m not. Not even a little.

 

And now for the snippet: After weeks and weeks of playing hard-to-get, Caleb finally accepted the job offer from Staples today. It’s a little (okay, a lot) less than what we had hoped for, but he’ll be working in town for the most part.  We’re sort of fuzzy on a start date, and we still have to work out minor details, like, say, oh, INSURANCE, but we’ll get there, and I think we can definitely make this work. Stuff with that other company is still iffy, mainly because they are all kinds of shady, but hey.

 

Cheyenne is up to $230.00 in donations to the Multiple Sclerosis thingy last time I checked. I have no doubt in my mind that she’ll reach her goal, and again, if anyone out there in internet land gets a wild hair to contribute to the cause, follow this link: National MS Society and go to donate, pledge, search for a particpant, Cheyenne Bowles. It’s surprisingly easy.

 

I’ve been trying to calm down about Merrick’s surgery. Caleb’s brother Jason has been visiting, so that’s been a welcome distraction for all of us. Forgetting about the whole thing was easy when it was 3 months away. I appreciate all the comments and messages and e-mails and phone calls everyone has sent our way; I honestly can’t say how much it means to have this kind of support from my family and my friends and even people I’ve never officially met.  So thank you all again.

 

Descanso means "a break; half-time". I got curious.