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.
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.
Abby is eleven and in fifth grade. She practices like crazy, love performing, and "really, really, really" wants to be in the symphony someday. She loves ice skating, riding horses, and has more energy than both of her parents put together.
Ashlynn is nine years old and in fourth grade. Ever since her arrival in the front seat of our minivan on the side of the freeway, Ashlynn has always done things her own way. She keeps everyone in the family laughing, and is always there for a hug, a smile, or a cuddle. She loves gymanstics, playing the piano, and frequently is found bouncing off of one piece of furniture or another.
The Big Brother
Max is a four year old ball of energy and fun. Obessed with the iPhone, Toy Story, and Phinneas and Ferb, he regularly has us laughing hysterically at his antics. Max was born with metopic craniosynostosis and has had two major skull reconstructions, and has come through with flying colors.
If there's trouble to be found, two year old Ian will be in the center of it. Ian is charming, articulate, funny, and incredibly determined to make the world exactly the way he wants it. He loves his brother, climbing on the counters and waking up at obscenely early hours.