I swear to God, every time I see some proof that she's growing, I see something to make me think that maybe she's not after all. Now sewing sizes are often very different from sizes in stores, and I knew it was going to be bigger just looking at the measurements on the pattern package; but it's still hard to put your baby girl's measurements at 21 months up against the six-month-size pattern pieces at the floor and see them looking, well, dwarfed. I have one of the nine-month size sleepers from Children's Place that she's recently outgrown to use as a comparison; I want her costume to be bigger than that, but just slightly, or she'll be tripping over her own floppy feet when she goes trick-or-treating. I'm cutting the head bigger at a "medium" because her head is quite large for her size (though smallish for her age), and if there's one advantage to sewing one's own clothes, it's that things fit properly.

I know I haven't been talking about this much lately. If you'd been breathing a big sigh of relief over the End of the Whinging, this might be an entry you want to skip over.

Every time I think I'm getting over it, that I think I'm finally ok knowing that I will never know why she's so small or what her future will be like, I'm not. Something brings me back here. I see a list of things that parents of kids with achondroplasia (dwarfism) should never do, like toss them in the air, because the size of their heads and the weakness of their spines makes this risky--it can paralyze them; and I wonder, is there some list like that I should be aware of for Frances, only no one can or ever will tell me because no one knows what she has? Tossing her in the air hasn't paralyzed her yet; but will she be ok to ride on roller coasters at the amusement park? Assuming she's ever tall enough. Or I place her on the growth chart for achondroplastic girls, and I see that she's just under the 50th percentile for her age--and I wonder what I'll do if she starts falling off this growth chart, too (although it is nice at last to see that she is on a growth chart, and not just clinging to the edges of it).

I get hit with sudden fears like "What if she never even reaches three feet?" Or, "What if her intestines are growing at a regular rate and they run out of room in her ribcage?" And I don't know if they're irrational or not, because I have no idea what she has. There's no one I can ask, because no one else knows either.

I see other moms buying clothes for their kids a year in advance when they're on sale, knowing with reasonable certainty that they will fit--and I can't even buy clothes for Frances now knowing that they will fit--the 9-month sized pants and shirts I got for Frances last year are still too big on her, though less too-big than they were. Will she finally outgrow them this year? Who the hell knows? As far as I know, she may never grow again.

Can we modify our house with stepstools and other minor things, or do we need to get her special furniture? Will she be able to ride a bike? What kinds of modifications will I need to ask her school to make? Will she need a friend to walk down the hall with her so she can open the doors? Will she be able to use the toilets? Will she be able to reach the blackboard if she's called in front of the class to answer a question? Will she be able to get on the school bus? There are all those studies showing that each extra inch in height equals a certain amount of annual additional income--will she be poor? Where will she shop for clothes when she's a teenager and she wants to wear what her friends are wearing, but they don't carry anything in her size? Will she ever be able to buy a bra off the rack?

What kinds of things do I need to be doing as her mother? What skills should I be teaching her? What kinds of home modifications should I be making? What books should I be reading? What people should I be talking to? What specialists will be able to help with any mobility or adjustment problems she might have? I'll never know, unless someone can tell me what she has.

And that's not even mentioning the whole "is this hereditary, or is it spontaneous" question. Unless someone can tell me what it is, no one can tell me where it came from or how likely it is to recur. If it is 3-M, then there's a 25% chance of recurrence in a future pregnancy. Boys and men with 3-M are sterile. That means I would have an approximately 13% chance of giving birth to a child who could never have children themselves--and not having fertility problems myself, only hearing from others how hard it can be, I don't know how much that should influence my decision-making. And again, not knowing what it is, or what the ultimate prognosis is, I don't know if it would be right for me to risk bringing another child in to this world who might have a hard life. Or, for that matter, if I could stand to go through the type-1-diabetic/premature birth/hospital stay/reflux/slow growth/genetics gauntlet again. Forget "relaxing and enjoying the pregnancy." You'd have to put me on tranquilizers for the entire nine (eight) months. And now that I'm mostly out of the thick of it, it's more glaring than ever to me how much of Frances's first year I spent in a state of repressed panic--searching medical databases for hours at a time sometimes every day looking for some clue, any clue, as to why she was so small and growing so slowly.

I can't help but feel that if I only knew, this would be so much easier to deal with.