Messed-up head

I appear to have a complicated relationship with the helmet that Samuel has to help remold his messed up head shape. We paid $1500 that we don't have for that sucker. He should be wearing it. It's important. It's temporary. It's a good thing. And it's not really such a huge deal after everything else he's been through.

And yet, I hate that hunk of plastic with a fervor. Samuel screams when I put it on because it hurts (although he settles quickly and gets used to it). It makes his head sweaty and smelly and it sometimes tilts so that his eyes get kind of smooshed up. And it's hard to pretend that your baby is all normal and well when he has that thing on. And 23 hours a day is a lot. And I'm already pretty overwhelmed trying to keep track of his appointments and medications and development stuff without logging helmet hours and multiple checks for fit and red spots. So I resist, tell myself he doesn't really need it, it's too hot out to wear it today, he's had enough already without that thing on his head, blah blah blah.

But yesterday I saw a picture of him and realized his head IS actually a bit wonky and I am going to regret it if I don't go hard on this treatment while his skull is still malleable enough to fix. So I said to myself, suck it up, princess. Let's do this helmet thing and do it right.

Wearing superman shirt rocks. Wearing helmet sucks.

Having such a ridiculous response to this whole helmet thing made me realize that Sam's head may not be as messy as mine. But there ain't no plastic remolding device for what ails my head. It's a leeetle more complicated than that. Sometimes I just don't want anything else to "manage." I'm not so sad as I was a month ago... but I feel a bit lost. I know I am not who I was before this all happened but I still don't know quite what that means. I don't belong in hospital-sick-child world anymore - thank goodness. I also don't belong in the world I lived in before. So here I am. My worldview is different. My relationships are different. My sense of non-mama self is different. My heart and spirit are different. And don't even get me started on my body because I know I have some serious health-induction to do there too. I am transitioning into my new self and, while a bit unsettling, I trust. It is all good. Or at least, it is what it is.

Sam continues to do well - so well, in fact, that the home care team noted that they might not need to come weekly or at all for that much longer. I responded to this by making some lame jokes that were actually a signal of my panic. I'm not ready to have less support just yet. I fear that I have duped them into seeing me as competent to take care of him on my own. I will find ways to screw up more blatantly.

Uncle John came from Vancouver to visit this past weekend, to play with the boys and meet his fourth nephew/godson (and final nephew/godson, unless he has some alternate Godson Supplier lined up). We talked about this whole experience, about what it was like to see this baby in the flesh and to hold and kiss him, about how support can take shape in email and phone and blog comments even across the mountains, about faith and love. I cried little happy tears to see my brother-in-law with my boys and cried a little more when I said good-bye to him at the airport. It was a special visit. Thanks UJ ... and Michael too. We love you.

Sam and Uncle John

The boys and Uncle John on our schoolyard picnic.



"Aw look, I am so beautiful. How could you possibly stick that awful helmet on me?!"



Meaningful uncle and godson conversation about not manipulating the mother regarding the helmet thing.