Stunted

Grocery store scavenger hunt (Yes, I'm brilliant.) The girls wanted to find something with Paul Newman on it.* (This picture has nothing to do with this post. But cute, right?)

Grocery store scavenger hunt (Yes, I’m brilliant.) The girls wanted to find something with Paul Newman on it.* This picture has nothing to do with the topic(s) of this post. But it’s cute, right?

This post, as titled, could be about this blog. Or “stalled” perhaps more aptly. Not sure why, but I just haven’t felt compelled to write much here lately. That is, I think of little tiny things I could write here…glorified Facebook statuses (stati?) really. But nothing meaty enough for a whole post.

I’ve also stayed away because I’m  trying to stay focused on the novel I’m writing. As those of you who follow my page over on Facebook know, I’m taking a Facebook vacation for the month of May as part of BoNoProMo – Boston Novel in Progress Month, initiated by my friend Lisa Borders. The idea is to spend 10 hours a week on our novels. I’m definitely not hitting that goal, nor did I think I would,  but I definitely *am* succeeding in spending more time writing. I’m also on board (sort of) with another writing pep rally / challenge called the Muse100, which is to write for 30 minutes every day for 100 days. I’m modifying that to simply writing every day, even if it’s just five minutes, forever. (Knowing that, there are SOME days it obviously won’t be possible. Like if I’m ever in a coma, for example.)

Wait. Where was I? Oh yeah — stunted. And the real reason for the name of the post:

As I think I may have mentioned before, Clio hasn’t grown much over these past two years. During her first year of treatment, she grew less than a quarter of an inch. This year, her growth has definitely picked up. But she’s still a peanut compared to Elsa and a lot of other kids her age. When people guess at how old she is, the usual answer is five. The age she was when she was diagnosed.

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Impossible to see, but this is our growth chart wall. Elsa’s marks have kept on climbing  while Clio’s have barely moved.

Supposedly a lot of kids have a growth spurt once they’re off treatment. I don’t think Clio will ever catch up to Elsa,

who has always been taller. But I do hope she gets a few inches closer.  It would (will!) make me happy to see her growing the way your average healthy child does. As much as I love how freakin’ adorable she is.

I sometimes wonder if there are other areas of her growth that have been stunted by this crappy little boat trip. She’s always been a mama’s girl, but I wonder if she’d be less so if she hadn’t been given obvious reason to want to stay close and cuddly. (Not that I’m complaining about the cuddling part, mind you; but there are times when I wish, for her sake, that she felt comfortable going further afield, like Elsa.)

 

Clio and her pal Marlie, 2011

Clio and her pal Marlie, in 2011

When I see Clio among other first graders, particularly the two other girls that she and Elsa hang out with the most – daughters of friends of ours –  she seems more like a little sister than a contemporary. Elsa and the other two  are tall and rangy and giggly and precocious and outspoken and at times almost tween-ish in their gestures and expressions. (God help us!) Clio hangs in and follows along — for a while, anyway — and they are never unkind to her. But sometimes she complains that they don’t listen to her, or let her decide what to play. And often, she just doesn’t seem quite like one of them. I think she used to much more.

But Clio has always marched to a different drum. She has always been more of a watcher than a doer in social settings. And she has always seemed to me simultaneously younger and wiser than other children her age. But contrast feels decidedly greater now. Whereas in the year before she was diagnosed, I remember feeling that gap was starting to close a bit.

It will be interesting to see what happens once all the meds are out of her system, her energy is back to 100%, and this experience is behind her. Maybe she’ll shoot up like a weed and start asking for her own iPhone.

Or maybe this is just who she is and always was and always was meant to be? It’s so hard not to play the “what would have been if…” game. How would Elsa have changed, or not? What about Alastair? Me? Everything?

Sometimes I even get the crazy feeling liked there’s this other, parallel universe version of our family, in which it turned out that Clio’s symptoms really were just due to a virus, like her pediatrician insisted. And things just kept on keeping on. I wonder what that parallel universe family is up to. I hope they’re as happy as we are. Because we are happy, in spite of everything. We truly are.

 

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This Thursday, en route to school.

 

*Why did they want to find food with Paul Newman on it? i.e. Newman’s Own brand? Because we went to the Hole in the Wall Gang Camp — which Newman founded — a couple of weekends ago. (We went last year, too.) And, naturally, they have all kinds of Newman’s Own food there. Thank you, to all of you who buy that brand, incidentally; you’ve helped make it possible for tons of kids with life-threatening illnesses (and their parents, in some cases) spend special time at some really special places, all around the world.


10 Responses to “Stunted”

  1. Lin says:

    Um yes. I totally get the ‘parallel universe’ musings all the time too. It’s eerie and comforting all at once.

  2. Korinthia says:

    So glad you posted. I’ve missed your writing! Hope your novel is going well, and your girls (in any universe) are adorable.

  3. April says:

    you may not see it because you see her every day but from an outsider perspective, Clio in that last picture looks so much bigger and healthier and happier and more grown up than she did before. I think she is coming into her own.

  4. Deb says:

    Whether Clio was sick or not, you will always compare them as they are twins. You will always expect them to do the same things, but they wont. I think we all live in the ‘what if” world from time to time….what if I hadn’t told him to go jump in the lake, would we still be together? See, what if happens all the time! lol

  5. Deb says:

    I must add – Im glad May is almost over and your month of not Facebooking will be over too! I miss your writing!

  6. Leslie B says:

    Thanks for the update, Jane. It’s so awesome to see the photos of the girls and hear about how they’re doing (and how you are doing, too). Great about the FB-fast and the novel. And grocery store scavenger hunt IS brilliant! I’m going to have to borrow that one someday. It’s always wonderful to read your posts.

  7. Jeff J. J. says:

    Please keep posting on the subject of behavior changes. I am fascinated how children who have faced life-threatening diseases are often more empathic and mature than other children their age, as a consequence of what they have had to endure. Often times this rubs off on their siblings as well. As a mother of twins you are in a unique position to observe this. Clio’s looking good!

  8. EG says:

    Yay, glad you’re happy. Isn’t the world of “what ifs” a weird one?

    Best wishes on the novel. Looking forward to it!

  9. Ellie says:

    My son (now 18) and off treatment for 6 months has already grown 3/4 of an inch – he may push through that 6 ft ‘ceiling’ yet! Glad to hear from you :)

  10. Michele says:

    Such lovely girls! I was thinking also what April wrote, she looks like a first-grader to me definitely in the bottom/last picture. And hopefully getting through this has made her even stronger on the inside. Glad to see a post, good luck with the novel!

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