Tattoos and Drool

Protected: Our journey thus far

So, your baby needs a helmet.

Hello to any readers I might still have after my unannounced break. I totally don’t blame any of you who pruned me from your reading list. I promise I’m still around though, and I do check in on my favorite blogs faithfully! I still need to weed through the hundreds of comment spam (do people really think that’s good for business? I mean, really?) so if you left a comment recently, hopefully I can dig it up and respond. And to the few sweet ladies who have emailed me – I promise to get back to you, even if it’s two months late. Embarrassing. I’m sorry!

Today I wanted to post about my baby girl and her plagiocephaly and helmet journey. I last left off with the announcement that she would be getting a helmet, but haven’t updated since, and it’s unfortunate because I really was hoping to document her journey better so that any parents facing this diagnosis in the future might find my blog and ease some fears. I Googled endlessly when we first found out Avonlea would need a helmet and came up with very little first hand experience, and I wanted my blog to be that source. Best laid plans and all that.

But! In this post I’m going to compile all my most important thoughts, tips and FAQs that I think will help make it a little easier for anyone else going through this. If you have any additional questions, please please leave them in the comments and I’ll add my answers to the post.

So, here it is. Everything I think you should know if you just found out your baby needs a helmet. Let’s jump right in.

• Don’t panic. Seriously. DON’T panic. I know it’s hard. I panicked like hell the day we took my baby to be fitted with her helmet. There are a million thoughts flying through your head and none of them are good. But I promise. PROMISE. It will be okay. It’s not that bad. Think of the future – your baby with his cute little perfectly round head – and that is what will get you through. It seems like yesterday that I was white-knuckling the steering wheel on our way to the orthotist on Christmas Eve, and six weeks have already gone by in a flash. And all that panicking? Totally not needed. This has been worth it.
• But what if my baby hates it? What about sleeping? This was my biggest worry. That she would cry incessantly and refuse to sleep for the entire three months. But you know what happened? She didn’t cry. At all. The orthotist plopped her helmet on her head and she totally didn’t even care that it was there. And, he told us that while some babies do cry, it’s not for long and ALL the babies he’s worked with got used to it almost immediately.

  Some orthotists will have you follow a gradual schedule to get your baby accustomed to the helmet. We didn’t really do that because she seemed fine in it immediately. The first couple days were a little rough, and she didn’t want to sleep at night wearing it. That is okay and normal. Just take it off for the night. By day three or four, she slept in it all night for the first time and it was smooth sailing from that point.

• What if it leaves marks? It looks like it’s hurting her! The helmet should not be uncomfortable or painful for your baby. It may leave red pressure marks when you first take it off, but these should go away within 30 minutes. If there are any marks that don’t go away, any skin abrasions, or your baby seems to be in any pain at all, LEAVE IT OFF and call your orthotist. Trust me. You don’t want to irritate anything worse than it already is because that would mean an extended time of leaving the helmet off, which is less time for the head to grow properly. Your orthotist can shave off some of the foam on the inside on any spots that are causing irritation.

• You will miss that soft little head. There’s no avoiding it. You will miss the skull snuggles like crazy. I miss smelling her head the most. But, it gets easier. The helmet used to get in the way but now it’s simply a part of her, and I smother it with kisses just as much as I do any other part of her body. It just makes you cherish that one hour a day so much more. (Oh, and speaking of that – you’ll take it off each day to wash it. Word of warning. The smell? Is like that of 100 sweaty feet. It’s putrid. But you won’t care. I promise.)
• Decorating. If you’re anything like me, the helmet’s gotta be cute. It just does. There are several methods of decorating. I initially had Avie’s airbrushed at a kiosk in the mall. I quickly got sick of that design though and decided to paint it a solid color with just her name and a couple stickers added. Painting it is super easy. Just get regular acrylic paint and some Mod Podge sealer. Paint on 2-3 layers of the acrylic, drying between each layer. Once you’re satisfied with the look, paint on a couple layers of the Mod Podge. This leaves a nice shiny finish and prevents chipping. Then add any stickers and Mod Podge over those as well. Vinyl stickers work much better than paper. Bling Your Band is also a great resource for custom vinyl decals created specifically for cranial helmets and bands.
• I’ve heard Cranial Tech is the best. Yeah, I’ve heard that too. Unfortunately for me and thousands of other parents, there isn’t always a Cranial Tech close by. I’ve read about parents who traveled several hours in the car or even by plane to get to a CT (makers of the DOC Band). But what I’ve found in my research is that ALL of the helmet/band brands are effective and none are really “better.” You have to make your own choice as far as if you’re willing or able to make the trek to one. Me? I went with what was local and couldn’t be happier. Avonlea is in a Becker Band and is making absolutely amazing progress. It’s one of the most little talked about brands, which worried me at first, but it really doesn’t matter. As long as you get a proper fit and a good orthotist, any brand or company is going to do what it’s supposed to. Other common helmet brands are STARband and Hanger.

  Another thing to keep in mind is that Cranial Tech makes what is called an active band. This means that the device applies constant gentle pressure to the head to help it grow properly. You may need to have more adjustments with this type of band. Becker and I think Hanger and STAR as well are all passive bands. Meaning the helmet is constructed in the desired final head shape and allows space for the head to grow into it rather than applying pressure. We only see our orthotist once a month. Both types are good, you just need to talk to your doctor and orthotist to decide which would work better for your specific situation.

• Take pictures! You will regret it if you don’t, I promise. Take lots of pictures of your baby in the helmet, as well as progress pictures of their head. You will want to compare the pictures as this is the best way to see progress. And, even though it might not seem like it now, you will want the visual memories of your baby in her helmet. It’s for such a short time in their lives and you will cherish the memories of getting through that time and coming out on top.

• Don’t be a hermit! Don’t worry about what people think. Take your baby out in public as you normally would and don’t be ashamed. Yes, people will stare. You will get used to it. For me, I just remember that by taking Avie out, I’m making this more common and more accepted. I haven’t seen another helmet baby out and about yet, but I hope to so I can make that mom or dad feel good about their choice and proud of their baby. Sometimes people ask questions (the most common being “What’s wrong with her” and “What happened to her”). I’ve even had a group of jackass teenagers make fun of her at the mall. Yeah, giant eyeroll. Just use it as a chance to spread information about plagiocephaly. I have met so many people who, after I explain our situation, say “Wow, I think *my baby/my daughter’s baby/etc.* could have really benefited from that treatment.” I also meet people who know of other babies who wear helmets.

And above all, feel confident in the choice you have made for your child. It really, really is worth it. You will never regret choosing helmet therapy, but you might regret it if you didn’t.

Okay, so that’s all I have for now. I hope this helps even just one person.

Most difficult, underpaid, underappreciated

This parenting thing. It’s hard. Like, really hard.

You have this tiny little baby. All it does is poop and eat and sleep and it likes to wake up a lot at night and cry for no reason and keep you from taking a shower, like, ever. And you think, man, this is hard.

Then they get a little bigger. And there’s teething, and becoming mobile, and figuring out how to feed the thing and the begging and pleading to sleep through the night just once. Just please go to sleep. And sometimes you think, I can’t wait until this kid is older. This is hard.

But the potty training. Ditching the crib. Terrible twos. Tantrums. Back-talking. Injuries. Wait a second. When does this start getting easier?

It doesn’t. Four years in and it hasn’t gotten easier. Different, more challenging predicaments await each new year. And from what I’ve heard, it just keeps getting harder and harder (as the parents of teens like to smugly remind me every chance they get).

I feel intimidated a lot of the time. Inadequate. Not worthy of being in charge of another human being (or 3!) and making sure they learn to choose the right paths.

Most recently, we’ve been learning that the way we parent (or don’t parent) has a huge, giant, I’m talking ENORMOUS impact on our 4-year-old’s mental and emotional well-being. Simple things, like absentmindedly rattling off one too many “just a minute, son”s and out of nowhere you’ve got a kid crapping on the floor for attention. Yes, again. Still. Whatever.

But really, this isn’t going to be another poop post. Just an example, albeit kind of a disjointed one, of how this. Is. HARD. When we first brought home that teeny little bundle, sat in our living room and asked each other, So what do we do with it now? we weren’t thinking about how four, five, six years down the road we’d have to worry about something much more complex than the color of his poop or how many jars of baby food he should be eating per day.

It seems like it should be a given – pop out a kid, hope to all the deities than you don’t mess it up too horribly. And maybe I was just incredibly naive back then. But tonight was my first real, true HOLY SHIT, WHAT IF I SCREW HIM UP FOR LIFE? moment.

It’s scary.

Because he’s a really cool, intelligent, loving kid. And god, I really hope I don’t screw him up. If I can accomplish that, then I’ve succeeded in life.

Questioning everything, Part 2

Guys, thank you for the supportive and understanding comments on my last post. I laid in bed awake last night wondering if I should run downstairs and make the post private because I wasn’t sure what type of reaction to expect. But my readers are apparently made of WIN and AWESOME and now I am so glad I left it up.

After testing the waters with that post, so to speak, I have another thought-provoking question. For those of you who aren’t sure where you stand in the religious spectrum, how do you handle holidays like Christmas and Easter?

We have always done them with the boys without question – but I always feel guilty doing so. We haven’t ever explained to them the religious connotations and that feels kind of wrong to me, I guess. I have always hated how commercialized all the holidays are now so I guess I need to find a happy medium between making Christmas all about Jesus and all about Santa.

And I guess I should probably mention, we don’t really “do” Santa either. My kids know who Santa is but never will I give them any gifts on Christmas morning with Santa’s name on the tag. It’s a mixture of not wanting to lie to them and not wanting a fictitious fat dude getting credit for the hard work Mommy did. Mostly the latter.

So if we don’t do Jesus and don’t do Santa, what do we do? I can’t let myself be Evil Mom McSuckypants and not do Christmas at all. Logically I would say that we explain to them the history of Christmas, why it’s important to Christians, and also the history of Santa Claus. Is that acceptable? Or am I really not worthy of celebrating Christmas or Easter if I’m going to hell not a practicing Christian?

It’s been easy so far because my kids are too young to really understand any of it just yet. The time will come though when Sawyer will come home from preschool with a million and one questions about why there’s a donkey and a giant star and a baby in a manger and I need to be ready with all the answers.

So. What do you do?

I hope I don’t regret this

Sometimes I feel like I’m keeping a giant secret.

I don’t talk about religion much. Correction: I try to avoid talking about religion with every fiber of my being. I’ve perfected the art of just nodding my head and smiling, like I’m in perfect agreement with whatever rhetoric is being spewn. Whatever it takes to not have to have that awkward silence.

I feel surrounded by God. Not in a spiritual sense. In a sense that everyone is always asking for a prayer or forgiveness or a miracle. Pray for this, pray for that, we’re praying for you. Look at this miracle, look what prayer did! Look what God did.

What would happen if one day I finally said, But I don’t pray.

How would things change if I stopped feeling obligated to keep it to myself and wasn’t absolutely terrified to say, I’m not sure I think God exists.

I was involved in a small debate today, in the drama epicenter that is Facebook. One of my friends chose to use her status message as a means to voice her disapproval of the Islamic prayer gathering that is to take place on Capitol Hill. And just take my word when I say that “voice her disapproval” is cutting her a gigantic break because her phrasing? Not that nice.

Now, this girl and I grew up in the same tiny Texas town. Heart of the Bible belt, the type of place where you either go to church or you just don’t exist. Lots of Southern Baptists and lots of It’s-our-way-or-no-way. I was raised in the Christian church, just like everyone else. But somewhere along the way, something changed. I felt like all I had were questions and doubts. That has carried on through to my adult life and for the most part, I just ignore it. I do the nod and smile and hope that one day maybe something will make sense to me again.

But back to the Facebook drama. I read her status. And then I read it again. And again, my brow curling into a confused arch as I tried to comprehend what was so horrible about this gathering. I clicked the link she provided, thinking there must be something I was missing. But no. These people are gathering on Capitol Hill to do what? Set something on fire? Rip their clothes open to reveal bombs duct-taped to their chests? Indict Obama into the Muslim Hall of Fame? Erm, no.

To do nothing more than pray.

Her many supporters got into a heated discussion about the history of Islam and somewhere, someone threw out that God punishes people who don’t do right in his eyes.

Which completely pushed me over the edge, and led to me spewing that I don’t believe in any sort of god, and that I refuse to believe that there is a god who only punishes the bad people, and all you have to do is follow what he says and you can float up into the clouds when you die while everyone else burns in a fiery eternity at the hands of satan. I just can’t make myself believe that.

Because there is so, SO much evil and hurt and despair in this world that is bestowed on good people. People who don’t deserve one iota of the pain they are forced to endure. All you have to do is take a quick glance around the blogosphere to see the massive number of devout religious families who are dealt death, illness and tragedy. Sometimes I wonder if it really has nothing to do with God, but more with the fact that maybe that stuff is given to those people because they have the blind faith needed to get through it. And mother nature just kind of knows that.

I look at my own life, and some of the sins I have committed, and I wonder why, so far, I have been spared the punishment? If it’s true that God punishes the non-believers and the sinners, then why am I so incredibly blessed despite my immense faults? And I hate that I’m so superstitious that I’m afraid just writing those thoughts out will cause something bad to happen.

All that to say that I’m confused, very confused, on where I belong in this whole spectrum of faith. There’s a lot I simply don’t understand.

But most of all, I’m afraid – afraid because I have no fucking clue how to even begin to explain things like this to my children. We don’t go to church. Along with that comes a fear that they’ll some day resent me for not giving them a better foundation for religion. I want them to choose for themselves what to believe, but feel like I don’t possess the knowledge to give them the information to do so.

Most of all, I don’t want them to know the torture that comes with one day realizing that you don’t fit in with the only way of life you have ever known. I want them to go through life knowing that there is good, and there is bad, you get a little of both, and some people get more of one than the other. Sometimes you can control the ratio with your actions, but sometimes you can’t. And all you can do is live your life while having tolerance for the way other people live theirs, because there’s enough hate in the world already without adding any more to it.

Well. I guess I just start with that, huh?

I suppose it’s time to hit Publish.