Thursday, April 8, 2010


I have people calling me, emailing me, texting me, visiting every day asking how Max is recovering.  The easy way out is to talk exclusively about his physical recovery.  He's really doing well in that regard.  The swelling is decreasing every day, both of his eyes are open, his incision site looks nice, and he's requiring little to no pain medication.  We've gone from this: (which I still think is pretty stinkin' cute!)
to this, in just a few days' time:

I'm so grateful that we're home from the hospital, that the surgery is over, that Max is recovering well, that we haven't required another trip to the hospital, but I'm learning that physical recovery only tells part of the story, for him and for me. 

There's a lot of talk among other moms whose kids have craniosynostosis about how awful their children sleep post-op.  We were lucky enough to escape that the first time around.  Max had a four hour nap the day we got home from the hospital, and quickly fell back into a routine. 

We haven't been so lucky this time around.

I'm not sure what it is.  It could be that after having his eyes swollen shut for five very long days that he's scared of the dark.  Or that he's remembering all the crazy, painful, confusing things that happened to him while he wasn't able to see.  Or maybe the natural separation anxiety that happens at this age is being compounded by the aftermath of surgery.  Maybe his body is working extra hard to get rid of all the anesthetic and pain meds that he was filled with for a week.  But whatever the reason, the simple fact is that we are just not sleeping.

Max has never been a wonderful night time sleeper anyway, but it has definitely been moved to a higher level this week.  The only way he will sleep is if he's next to me.   And close proximity doesn't do it- he has to be draped over every inch of me.  And the reason I thnk fear is still playing a part in things is because he wakes up every half hour or so visibly anxious and crying.  I finally gave up trying to get him to sleep on his own last night, and went to bed with him about 9:30.  That was a smart move on my part, because I don't think we slept for more than a half hour continuously all night long. 

It feels very much like having a newborn again.  Max is very emotional and clingy.  He gets hysterical if I try to leave the room without him, and every 5-10 minutes he has to come and cuddle with me before he can go about his day.  We are taking naps every afternoon, and I'm ignoring the resemblance my house has to a toxic waste dump.  I am very much in survival mode: doing only those things that absolutely have to be done.  Which is why I'm still in my pajamas today and its nearly noon! 

Besides the sheer exhaustion, (I'm starting to realize why sleep deprivation is a very real and valid method of torture!) there's an emotional aspect to our recovery that I didn't anticipate.  I've shed a lot of tears this past week, and I confess that there's been more than once that I've wondered why we agreed to do this.  Intellectually I know that the surgery was necessary so that his brain could grow properly, and avoid the risks of increased intercranial pressure.  I felt so grateful that we decided on surgery when the surgeon told us he had found evidences of increased pressure.  But that doesn't help during the crying spells at 2 am, (his and mine!) and when I look at him and can't help miss his head full of baby curls and the way he used to look.

Yesterday, I decided it was time to venture out of the house.  I was feeling more than a little stir crazy, sick of having nothing to read, and craving strawberry frozen fruit bars.  There was only one thing to do.  I dug out a pair of jeans and put real clothes on for the first time in days, broke out the industrial-strength concealer (hoping against hope that it would cover up the bags under my eyes that have managed to reach to my chin!) and decided to brave the great outdoors. 

I forgot that Wednesday morning is story time at the library, and it was swarmed with what seemed like every toddler, preschooler and parent in town.  Max took one look at all the people and started whining.  Normally, he runs gleefully through the library, trying to pull every book off ths shelf; this time, he was clinging to me like a baby spider monkey.  I ran into a friend, and while she was asking me how he was doing, I couldn't help noticing something.

The stares.

People were staring like crazy.

And it wasn't just a quick glace at him and then looking away.  They were out and out, mouth gaping stares. And it wasn't just the preschoolers, it was the moms. 

I've felt incredibly protective of Max since he was born.  Having a child who is different has unleashed the mama bear in me.  And standing there at the library yesterday, watching everyone stare at my baby boy made me want to scream.

Yes, he has a scar from ear to ear.  Yes, his eyes are still a little swollen.  But this little boy will astound you with his strength and ability to overcome.

What I wanted to shout at all of them staring was to either come up and talk to me about it or look away!  I am more than happy to talk about Max, and to build awareness about his rare and often misdiagnosed condition.  But don't just sit there and stare. 

He's a person.

A little person who has been through two enormous surgeries.  And has come through with flying colors. 

Its taking me longer to recover from this ordeal than it will him.

I'm thinking I may need to get one of these shirts and have him wear it every day.

We got our books, our popscicles, and went home to take a nap.  In that respect, I'm glad he's still too little to understand how hurtful people can be sometimes.

I'm so proud of my little boy.  He's such an amazing little person.  Even when he's waking up 247 times a night. 

So stare away.  But don't be surprised if you get a really dirty look from me in return.


  1. Max looks so great! So sorry about the sleep thing. We found out this week that our little Holly has damaged a plate in her forehead from banging her head so much and now it looks like there is a goose egg there and it's not a knot, it's the bone regrowing wrong so we too will be going through more surgery, hopefully not for a year or two though! Good Luck with everything. You guys are still in my parayers.

  2. I felt so sad when I read about the stares. Poor Stacy & Max. I hope some sleep is in the cards soon!

  3. I remember well the nightmare of post op. Alayna was terrified to go to sleep without me and went into hysterics if I left her alone in a room.

    I'm so sorry. Gosh that's hard.

    Ah yes, the stares. Most of the time they didn't bother me because I get that things like a massive zig zag scar would draw natural curiosity, but there were a few times I had the urge to cover up Alayna's head and glare down a person or two. Especially when the whispering and pointing started up.

    Let me know if there is ANYTHING I can do.

  4. Oh it breaks my heart to think of him scared!!! Give him kisses for me!!!

  5. I sympathize--it must be SO hard to not get sleep! I wish we lived closer so I could go to public places with you and Max and stare down the starers with you. But who knows--I would probably be tempted to write something witty or draw a picture on the back of his shaved head---to give starers something to look at. Fortunately, Max's head will heal and hair will grow up to cover everything before he will remember or care about the stares. And you're amazing--it may be hard but you'll get through it!!

  6. That shirt is so stinkin' cool! He totally needs one! I'm no doctor and you can totally disregard the rest of this comment if you choose but it sounds to me like you and Max are suffering from trapped emotions. They are very simple to take care of and you can do it yourself or visit a holistic doctor. If you'd rather do it yourself I suggest checking out a book called 'The Emotion Code' by Dr. Bradley Nelson. The book has greatly helped me and I think it might help you and Max too. Whatever you choose I hope that both of you continue to heal physically and emotionally. )))HUGS(((

  7. I am so glad he's doing better! I know what you mean about the stares... ignore them. He is looking great! {{hugs}}

  8. You tell 'em Stacy! I think he looks incredible. I can't get over how different he looks in his earliest pictures I have seen when I started reading your blog, and now. That is a miracle!

  9. Wow, he is really coming along great with the healing, Go MAX!!

    I'm so sorry that you guys are still struggling with the emotional aspects of all this. I don't blame you a bit. My suggestion would be to talk it over with Max. Just tell him like he is a grown up that it was scary and hard, and that you are sorry. He will understand more than it seems he could. (I'm thinking of how Karen Strange talks about telling the babies what you are doing when you work with them) ((((HUGS HUGS HUGS))))

    Oh and *SMACKS* for the dumb people who stare, the masses are asses, no doubt about it.

  10. Oh Stace, I'm so sorry about the library. What is it about this valley that we can't just talk to people? Or ask how they are or their child? We stopped going to storytime...partially because of the stares, mostly because it was too darn hard. Call me and just come over when you need a break! He really is looking better...and you can come have a nap in my bed while they play. xoxo, trina

  11. Oh Stacy- I can relate to the staring! Barrett's helmet was always an "adventure" when we were out in public. I think I was probably tactful and diplomatic whenever the stares turned into Olympic Gold-medal winning gapes, but, honestly, in my head, I was full of clever, decidedly non-tactful remarks and quips that had one purpose in mind: to get them to recoil in shame, embarrassment, and guilt. Oh, and maybe even fear at having pissed off the Mommy of the cute boy in the helmet. My heart breaks for you having to be the Mommy-Defending-Her-Child's-Honor, when will people ever learn to be kind and tactful, not awkward jerks??
    Big hugs to you, and to Max!!!

  12. Oh, I do hope Max isn't waking up that often now!

    He is a beautiful boy, looks like the recovery is coming along well. I'm so glad this surgery took!

  13. Hi - just found your blog in searching for some resources on craniosynostosis. My son was diagnosed with metopic cranio at birth and are we are awaiting his surgery date of October 6th! Thanks for documenting your journey so well!!


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