My son, Xavier (now 5), was born 4 weeks early due to low amniotic fluid. I had a normal pregnancy and didn't expect anything different despite his late prematurity. Little did my husband and I know that on Friday March 13, 2009 things were about to change dramatically. When Xavier was born (at 4lbs) there were immediate signs of distress...he had difficulty breathing as well showing signs of seizures. He also looked different than typical children. He was born at a hospital close to our home that had wonderful OB/GYN and infant care. But despite their best care we were told they were unable to provide enough support for Xavier in their NICU. We were told on his fourth day of life that he had to be transferred to Johns Hopkins in order to undergo further testing and access to doctors skilled in more complex cases. We were in shock to say the least. We were not expecting any of this and suddenly our lives were turned upside down. Getting to the NICU at Hopkins was a whirlwind of nurses, doctors, and tests. I have to admit I was bitter and just wanted to bring my son home and not have him poked and prodded. We were told that Xavier likely had a genetic syndrome and he was, in fact, experiencing seizures. He also had to learn to breathe and eat on his own. It was noted that he also had a number of congenital anomalies. Xavier spent a total of 32 days in the NICU and in that time my husband and I created relationships with doctors, nurses, and even other families that last until this day. They rallied in our highs and supported us in our lows. Xavier's nurses gloated at the fact that I was able to provide him solely with enough fresh breast milk and at the skill of his dad as he was the only one Xavier would drink from a bottle for. They called us immediately with good test results and sat with us to understand more difficult ones. In that time out dread and fear were able to be calmed by simply talking with the nurses about "normal" things. We joked, talked about the weather, and we brought them food (a fed nurse is a happy nurse lol). When the day came for X to come home our doctor met us in the hallway singing the Rocky anthem as we strolled X's stroller into the NICU. You never want to see your child go through such difficult things but I know our son was in the best hands. 2 years after his birth Xavier was finally diagnosed with a rare genetic syndrome called Schinzel-Giedion syndrome. He's one of approximately 12 kids worldwide. We would have never gotten this diagnosis had it not been for our geneticist and genetic counselor...providers who have been with us since the NICU. We have been with our different specialists through surgeries and hospitalizations. Each year we attend the NICU reunion to see the nurses and other babies who were with us from the beginning. Xavier has even attended daycare and now school with the little girl who was next to him in the NICU. We never expected to have a child with special needs but we are fortunate and forever thankful to the staff at the Johns Hopkins Children's Center NICU.

Invisible Mother

 It all began to make sense, the blank stares, the lack of response, the way
 one of the kids will walk into the room while I'm on the phone and ask to be
 taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?'
 
 Obviously not; no one can see if I'm on the phone, or cooking, or sweeping
 the floor, or even standing on my head in the corner, because no one can see
 me at all. I'm invisible. The invisible Mom. Some days I am only a pair of
 hands, nothing more! Can you fix this? Can you tie this? Can you open this??

 Some days I'm not a pair of hands; I'm not even a human being. I'm a clock
 to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is
 the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

 Some days I'm a crystal ball; 'Where's my other sock?, Where's my phone?,
 What's for dinner?'

 I was certain that these were the hands that once held books and the eyes
 that studied history, music and literature -but now, they had disappeared
 into the peanut butter, never to be seen again. She's going, she's
 going, she's gone!

 One night, a group of us were having dinner, celebrating the return of a
 friend from England . She had just gotten back from a fabulous trip, and she
 was going on and on about the hotel she stayed in. I was sitting there,
 looking around at the others all put together so well. It was hard not to
 compare and feel sorry for myself. I was feeling pretty pathetic, when she
 turned to me with a beautifully wrapped package, and said, 'I brought you
 this.' It was a book on the great cathedrals of Europe . I wasn't exactly
 sure why she'd given it to me until I read her inscription: 'With admiration
 for the greatness of what you are building when no one sees.'

 In the days ahead I would read - no, devour - the book. And I would discover
 what would become for me, four life-changing truths, after which I could
 pattern my work:

 1) No one can say who built the great cathedrals - we have no record
 of their names.

 2) These builders gave their whole lives for a work they would never
 see finished.

 3) They made great sacrifices and expected no credit.

 4) The passion of their building was fuelled by their faith that the
 eyes of God saw everything.

 A story of legend in the book told of a rich man who came to visit the
 cathedral while it was being built, and he saw a workman carving a tiny bird
 on the inside of a beam. He was puzzled and asked the man,
 'Why are you spending so much time carving that bird into a beam that
 will be covered by
 the roof. No one will ever see it'

 And the workman replied, 'Because God sees.'

 I closed the book, feeling the missing piece fall into place. It was almost
 as if I heard God whispering to me, 'I see you. I see the sacrifices you
 make every day, even when no one around you does.

 No act of kindness you've done, no sequin you've sewn on, no cupcake you've
 baked, no Cub Scout meeting, no last minute errand is too small for me to
 notice and smile over. You are building a great cathedral, but you can't see
 right now what it will become.

 I keep the right perspective when I see myself as a great builder. As one of
 the people who show up at a job that they will never see finished, to work
 on something that their name will never be on. The writer of the book went
 so far as to say that no cathedrals could ever be built in our lifetime
 because there are so few people willing to sacrifice to that degree.

 When I really think about it, I don't want my son to tell the friend he's
 bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the
 morning and bakes homemade pies, and then she hand bastes a turkey for 3
 hours and presses all the linens for the table.' That would mean I'd built a
 monument to myself. I just want him to want to come home. And then, if there
 is anything more to say to his friend, he'd say, 'You're gonna love it
 there...'

 As mothers, we are building great cathedrals. We cannot be seen if we're
 doing it right. And one day, it is very possible that the world will marvel,
 not only at what we have built, but at the beauty that has been added to the
 world by the sacrifices of invisible mothers.

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder