Thursday, February 5, 2015

The gift of not knowing

Our youngest child, our sweet daughter, has been a bit of an enigma wrapped in a mystery since she first graced us with her presence.

Even in utero, her short little legs were confounding ultrasound techs and raising eyebrows about the accuracy of my charts (NFP: 1 Radiology: 0, BTW). Then she arrived and all was well, if not petite.

And that's pretty much been her story for the past 13 months. She's darling, and not just in an every baby sort of way, but in a stunner-who-stops-traffic kinda way. I can say that because I'm her mom, and because I have 2 other kids who, while good looking, never got us the kind of attention this girl has.

She's teeny tiny. Doll-like. The proportions of a wee American Girl doll, clad in 9 month clothing still at month 13, but perfectly balanced in terms of length vs. weight. And, every month or so since last Fall, we dutifully truck her down to our local children's hospital for another round of testing, bumping from one department to another. First nutrition, than orthopedics, now endocrinology.

She's had more people poke and prod her in her first year of life than most people do in a lifetime, I'd wager. But to no avail. At least, to no apparent avail.

She's teeny, she's stubbornly "alternatively mobile" (translation: no walking, standing or crawling, but  girlfriend has a mean scoot), and she's utterly charming in her willingness to allow complete strangers to pick her up.

And we don't have any idea of why she is the way she is.

It's been confounding and enlightening, at turns, as a parent to have no idea what is wrong, or even whether something is, in fact, "wrong" with her.

And it's been a humbling exercise in "what ifs" in terms of the much bigger and much scarier situations that other parents really are facing.

There's a delicate balance in motherhood between anxiety and surrender. Sometimes it really is on us to keep worrying when everyone else says to relax.

But other times, maybe more times than not, relaxing and releasing is the right way to go.

I'm naturally high strung and extremely anxious. I have grand delusions about what and whether I can manage, and I have a ludicrously inflated sense of control.

The antidote to all this, for me, has been motherhood.

No other experience thus far has come close to the gut wrenching, soul-shaking reality of recognizing my true impotence and insignificance. And I don't mean that in a self deprecating way, but in a reality-recognizing way.

Motherhood has unveiled reality to me: I'm not in control, I never was in control, and even with ready access to arguably the best medical care on the planet...there's still no guarantee of control.

Now, I can put truckloads of faith into modern medicine and research journals (and I do) while simultaneously barking up alternative trees for innovative ideas (woof, woof), but I still can't summon a diagnosis for my daughter by the force of my will.

And that has been incredibly freeing for me. To be able to truly exercise the old adage to work as if everything depended on me, and to pray as if everything depends on God. It's at once taking responsibility for what one can control while simultaneously releasing my inflated and, honestly, egomaniacal sense of control.

So efficient, Lord. I see what you did there.

And even if this latest round of blood work turns up with a big fat question mark like all the rest has, we'll be able to sleep at night knowing that we asked the questions and made the appointments, and that, if nothing else, she'll be a champion blood donor some day with nary a needle phobia to be found.

And if God sees fit to send us a label to know Evie a little better? We'll take that into consideration, too. But it won't define her, not in any real sense. Sure, it'll simplify my Google searches. But it won't change the way I have to love her, nurture her, and let God fill in for the ever-growing list of all the things about motherhood that are far above my pay grade.


  1. YES!

    This reminded me of today's devotion in Jesus Calling by Sarah Young. Here are a couple of lines I underlined several years ago the first time I read it: To receive My Peace, you must change your grasping, controlling stance to one of openness and trust. You will never run out of things to worry about, but you can trust Me no matter what. I am an ever-present help in trouble.

  2. Such a beautiful little girl! I hope you get answers soon; control may be illusory, but knowledge is comforting :)

  3. Your daughter is lovely! Having been 'down the foxhole,' so to speak, with my 8-yr-old son's litany of medical issues over the years, let me assure you, your mentality-- letting go of the need to feel in control and simply entrusting the issues to God-- is really spot on. My son was growing extremely well for the first 18 months of his life, but then just completely dropped off the growth chart. The best doctors in Boston couldn't figure out why. The mystery persisted for years. By the time my son was 5, I had been recently diagnosed with celiac disease. My son did NOT have any of the most classic, common symptoms, but I asked his pediatrician anyway about giving him the gene test, just so we'd know if he was a carrier. It turns out he did, in fact, carry the gene. After further testing we found out-- to everyone's complete amazement-- my son had celiac disease. Now, I'm not going to say that full healing happened overnight, but even in the earliest months after diagnosis-- wow, what a difference! He finally started to grow normally again, he was sleeping more easily, and his migraines lessened in intensity and frequency.
    So, I guess what I'm trying to say is, it's important to keep exploring what modern medicine has to offer, but just keep living life and enjoying your daughter. Keep on praying, and the answers WILL eventually come, just in God's own time.
    God Bless!

    1. My neice also stumped Boston doctors for a while with her common stomach aches, weight loss and hair falling out before she was diagnosed as celiac's around 18 months old! You'd think it would be the first thing they check for!! I guess the only real way to know if someone has celiac's is to scope their intestines which is a pretty invasive procedure, so maybe that's why they wait and test for everything else first. And nobody in our huge family has celiac's - she was the first.

    2. Hi Colleen,

      I completely agree. I would have been extremely reluctant to put my little boy through an endoscopy, had not the total IgA/ttg blood test come back with major celiac indicators. Also, Boston is more or less the epicenter of celiac research in this country these days, so it IS definitely odd that it took the specialists so long to figure out what was wrong with my son and your niece. The good thing about my son's case, though, was that it completely challenged their notions of how celiac disease can manifest in certain individuals; bearing in mind what they saw in him, they said they were able to diagnose correctly a few other patients whom they'd otherwise have never tested for this illness. Also, after learning of my and my son's affliction, 4 of my 5 siblings decided to get tested, and 2 of them are celiac, as well as 1 of my little nephews! We also unearthed a few other autoimmune conditions which turned out to be common in our own family. Sometimes these things can be a bit of a blessing in disguise-- now it seems that everyone in the extended family is taking better care of their health.

    3. You guys, interestingly, the endocrinologist mentioned celiac kind of off handedly, and since poor Evie's been stuck so many times, I asked her to go ahead and include it in yesterday's labs just to rule it out. I mean they were already going in for buckets of blood. We'll see if anything turns up. The doc said she gets at least 5 new kiddos a year who manifest ZERO traditional celiac symptoms and turn up with a positive lab, so, maybe?

    4. Well, your daughter will certainly be in my prayers. Here's hoping you'll get some answers really soon!

  4. Our little almost three year old who wears 18-24 month clothing and has been through the battery of sticks and tests has had a similar effect on my heart. It's so humbling and you say it so eloquently. Sending you lots and lots of hugs.

  5. What a beautiful idea, Jenny -- "the gift of not knowing." Your Evie is lucky to have a mama who sees her as such a beautiful enigma.

    And -- "There's a delicate balance in motherhood between anxiety and surrender." -- you describe that so well. I tend toward the latter, but only in things that happen (or could happen) TO us. Things that we (namely my children) do ourselves... well, I feel like I should be able to control the heck out of all that. (Their behavior, their performance in school, etc.) I suppose there's anxiety in wanting that kind of control too, though I never thought of it before. Hmm... I suppose a good question to ask myself would be: "What am I so anxious about here?"

    (And... that was pretty off-topic, wasn't it? Thanks for the good points to think on!)

  6. I just really like you, the way you mother, and the way you write :)

  7. From an unbiased perspective, yes she is stunning! I thought that the first time I saw a picture of her a few months ago. Grace and peace to all of you. It's so hard to wonder and worry and still not know anything. Hugs to you and yours!

  8. Looking forward to hearing future updates, and be assured of prayers for you, Evie, and your family. And the doctors. Also if you ever want to do a blog post just of pictures of Evie, I wouldn't complain. :) She is so beautiful it's almost unbelievable!


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