CHAPTER 1
RISK ANDREWARD
Because of both my hurdles and my life accomplishments,people seem to think I am a very determinedperson—that I don't think twice about taking a risk.That once I set my sights on something, I just go for itwith no thought to the possible difficulties I mayencounter on the way.
Truth be told, I don't see myself as the fearless risk-taker.In fact, nearly every action I take in a day is theresult of careful calculation.
I was born with a condition called ArthrogryposisMultiplex Congenita (which means "crooked joints"), arare congenital defect that left my shoulders, arms, andfingers shortened and lacking muscle. My arms, whichare unable to bend, are too weak to do much, and theirshriveled, unattractive appearance only adds insult toinjury, but they are good for a little light lifting and door-openingwhen need be. For anything that requires dexterity,I have to rely on my feet.
I face the same maddening struggles over and over—andwill for the rest of my life. Think about the mostcommon things: restaurant sandwiches, for one. Becausetheir size is usually unwieldy and they easily fall apart,they are a risk I am generally unwilling to take, no matterhow badly I want turkey and avocado on wholewheat. At stop lights I usually lower my foot from mysteering wheel so people won't stare. I often hesitate atthe tops of staircases, because I fear tripping, falling, andnot being able to catch myself. And if there's a fly buzzingaround my head, I can't swat it away. I always need tothink through my actions, guessing at what might be possiblefor me and what might not. I spend my days weighingmy options and exercising caution.
And yet amid that caution and struggle, there isgrace. Grace, and places of rest and opening, places oftransformation.
My story is full of pain, fear, and insecurity. I share itwith you not so you'll pity me or thank your lucky starsthat your life is different. No, I share my story becauseI've discovered that pain doesn'thave to have the last word. Thereare many ways in which I feel I'mnot enough, and that's OK. Idon't have to be enough. If I wereenough, I would have no need forother people and no need forGod. My need keeps me connectedto all the important things.
I am sharing this with you because I know I'm notalone in feeling inadequate. I'm not the only one whomourns a great loss.
I don't know what your loss is. Maybe, like me, you orsomeone you love has a physical limitation. Or maybeyou are plagued by loneliness. Or maybe you have simplycome to a season in your life where something feels persistentlyoff. Whatever prompts those voices in your headthat say I'm not good enough, I hope you will send thosevoices to the spa for a few hours and dwell with me ina different claim: the claim that our limitations andfeelings of inadequacy can actually be the wellspring ofour spiritual lives. They can point us to God.
* * *
Sometimes, bars have been lowered for me and peoplehave expected less of me because of my "crooked joints."I have received pats on the back that I didn't deserve,and I've been denied the chance to earn others. As a littlegirl I saw this double standard and didn't know how tofeel. When would I know I'd done my best? Was there anhonest scale anywhere I could use to measure my accomplishments?Over time, I would learn to define risk andachievement in my own terms so that the days I first puton a necklace and cast a fishing pole for myself are someof my proudest memories. I learned to accept accoladeswith a smile, but I also learned to remember that I wasthe only one who really knew whether I was doing somethingworth applauding.
But perhaps the biggest risk I've ever had to calculatewas having a baby.
When my husband and I first shared the news that wewould soon be parents, the reactions from our friends andfamily ranged from glee to great concern. Some were ofthe opinion that I could do anything, and caring for ababy would be no problem for me. Some asked unendingquestions, as if I'd figured out all of motherhood before I'deven tried it. And some hurt me deeply in assuming I'd relyon my husband to handle all the ways in which theybelieved I'd be incapable as a mother. I had never doubtedmy ability to be a good mother until I was being asked allthese questions and even being told outright what I couldn'tdo. I found myself yet again wondering what I really couldaccomplish, how to measure a "good" mother, andwhether I had what it took to be one. Those who believedI could do anything were wrong, but so were the peoplewho expected so little. Was this a risk or an achievement?I could only shut out the feedback and allow time to tell.
When Ethan was born, my legs—with which I intendedto stabilize my son in my unstable arms—shook so badlythat they were of no use. I had refused the epidural, fearingmy lower body would be too numb to handle the baby, butwith trembling legs, I didn't even attempt to hold him.Instead, my husband steadied the newborn on my chest.This was, without a doubt, my finest moment. I'd had thenatural birth I wanted. I knew I'd done my very best. Inthis experience in which so many women participate, I wason a level playing field. The bar had not been lowered.The pain and effort had not been lessened for me becauseI have a disability. I achieved as much as every otherwoman who's achieved motherhood. It was beyondintoxicating. But the thrill of my victory began to wane asI realized how badly I wanted to wrap my son up tightly inmy arms. Of course they lay limp—as always. All I coulddo was offer the child as much as he offered me: presence,nearness, wonder.
I looked with a hurricane ofemotion into the face of this tinymiracle perched on top of me.Fear jolted through me as I wonderedwhether I was capable. Iwondered whether the doubterswere right. Would I end up relyingon everyone else to raise thischild? What if he grows to resentme because I don't care for...
