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 himlike other mothers do? Would I beenough? What if I fail?

What if I fail at this?

My mother, my cheerleader in life, stood by, waitingpatiently to hold her first grandchild. The joy of the momentcontinued to well up in her eyes and I couldn't understandwhy, with all these things I felt, I wasn't crying too.

She finally held him, all cocooned-up in a blanketand cap. She nestled him in her arms, tight and secure... just like I'd longed to. It dawned on me that I wouldnever hold him as gently as she could. I would never runmy fingers through his hair when he was sick. I wouldnever hug him tightly or squeeze his shoulder or pat himon the back. I would not be for him the mother she hadbeen for me. What did I even have to offer? I suddenlyfelt very small.

As my son was eventually passed around to all thosewho'd made the 1 a.m., hour-long hospital trip, I saw theway he was cradled and cuddled in arms that weren'tmine. When he was finally handed back to me, I almostpitied him. But there, snuggled beside me with the bedrail and blankets holding him close, I realized that Ethanwasn't worried. He was at home.

As his mother, I feel a huge responsibility to be everythinghe needs. My mind is constantly guessing at what hemight want next. But in motherhood and in life, I'velearned (albeit slowly) that God created us as communitycreatures. I wasn't meant to do this alone, and we aredesigned to lean on each other. The ability to ask for helpis a great strength—one I would begin to develop for thefirst time as Ethan grew. I would not always be everythingEthan needed. God would put many different people inEthan's life to serve many different purposes. I was just one.

My mother returned the next day to visit us again. I wasfeeling more confident and though I hadn't been able tosleep because of the adrenaline, I felt rested and full of joywhen she arrived. It was almost indescribable, the sense ofpride I felt in providing a grandchild, who was the firston both sides of the family. How beautiful, seeing my soncradled in the same arms that had held me. His headpressed against the same heartbeat that had calmed mefrom conception. My mother, another of the beautifulpeople who would fill up this boy's life.

Sometimes, when I look at my mother and my son, Iremember that things did not have to turn out this well.Out of fear, I could have chosen not to become a mother.And, stepping back a generation, my own mother couldvery easily have chosen, out of a different set of fears, notto give birth to me. She was an eighteen-year-old artmajor who lived with her boyfriend and worked at a fast-foodrestaurant to pay the bills when she got pregnant. Aclose relative first suggested an abortion to my mother;nobody wanted to see her throw her future away. Whenmy mom presented the option to my dad, he simply leftthe decision to her and offered his support either way.The only reservation he had about terminating the pregnancywas that he wasn't sure how they could scrape upthe money to pay for it. After weeks of deliberation, however,she decided to take the hard road.

As I've been told the story, all through the pregnancy,my mother could be found sitting with a book perched onher ever-growing tummy, reading aloud to the little lifegrowing inside her. Sometimes it was poetry, sometimesnursery rhymes, and sometimes (for good measure) mathematicalequations. Other times she could be found lyingon the floor with her stomach close to the stereo lettingthe baby listen to music—sometimes classical, sometimesjazz, and a lot of times Daddy's favorite, Crosby, Stills,and Nash.

My parents decided the best thing to do would be to getmarried, but as those nine months wore on, my motherwasn't sure they had what it took to care for a child. Morethan once she toyed with the idea of going to the clinicand calling the whole thing off. But she did not give in toher fear and on October 25, 1983, I was born. SometimesI wonder what I was doing in those moments as my parentsdecided whether or not I was worth the effort, worth thesacrifice. But as it was, one girl made an apparently randomdecision to do the most difficult thing, and here I am typingmy story out into a book (yes, with my toes), feelinglike I have something to say. And here you are reading it.Her one difficult decision is touching your life even now.

Today, I think about my teenaged parents with the"disabled" young daughter, and I feel in awe of the challengesthey faced and surmounted. And when I thinkback on my childhood and adolescence, I am, frankly,sometimes stunned that I got through the loneliness andisolation and the sheer physical challenges that I experiencedas a kid.

As you read my story, I hope that you will not be afraidto revisit those difficult times in your own life. Rememberthe times you've endured the unbearable and the timesyou've managed to summon more courage than youthought you had. Could it be that you were resting on thestrength of another?