the beginning

mothers always know. they know. so listen to them.
when zoe was a few weeks old- i looked at her back when changing her and thought her spine looked curved. "no! that is just her moving around!" said everyone. then when she was three months old- she couldn't lift her head up - she could hold it up well when she was held, but couldn't lift it up off the floor or crib- and so would move her head back and forth and get really frustrated- and hated, for this reason, being put on her stomach. we went to the doctor expecting- "oh don't worry about it." and got sent for an x-ray. we were told the differential diagnoses- torticolis - or nothing- or klippel-feil syndrome. no one ever likes the word "syndrome" - it just sounds bad. i was a medical student at the time- and went straight for the books to see what potentially was wrong with my baby. i remember reading about klippel-feil syndrome (a triad of short neck, low posterior hair line, and fusion of the cervical vertebrae) and the other associated problems ( congenital heart defects, kidney defects, scoliosis or other vertebral problems) and i remember praying- please God, anything but klippel-feil syndrome. doing the x-ray was awful- as was waiting for the results. then - there it was. looks like some fusion of the cervical vertebrae- you'll need to go see an orthopedic surgeon to clarify the diagnosis. but i knew what that meant. it meant klippel-feil syndrome.

this started a battery of tests and specialty visits including, cardiology, and an echocardiogram, blood work, genetics specialist, a renal ultrasound, and full spine films. i remember each time praying, "please God, let this organ be OK." when we went to the cardiologist- while i'm holding down a screaming 4 month old- he says, "cool! two heart defects- see that right there?"
never, ever, should 'cool' and 'defect' be in the same sentence.
never, ever, should you treat a fellow member of the health profession like a colleague discussing an interesting case, when she is a parent and you're talking about her kid!
don't they teach people anything in medical school?

the rest of the x-rays continued to reveal more "defects". curvature of the lumbar spine, missing part of one vertebra and fusion to the one above. sprengels deformity of the shoulder. she'll definitely need surgery, it's just a matter of when. and i remember feeling overwhelming sadness for this little child with her deformities. and worry. and anger. why was this happening to her? to us?

one of my childhood neighbors was an orthopedic surgeon and his wife also a doctor. their second child was born with "clubbed feet". they had heard what we were going through and called to support us. i remember vividly her first question, "how are you dealing with the guilt?" wow. here is a woman who had been there- who had carried a child in her womb, born with a "deformity". a physician who knew that there was no known cause of these orthopedic conditions and yet like me, had walked through every week of her pregnancy trying to trace what she did, or ate, to took, or saw at what moment that could have caused her baby to suffer- to be different- to be facing a life of difference. sure i'd felt guilt- intense guilt that only a mother can feel- but how was i dealing with it? i think i just sat on the couch, on the phone and cried. and that is OK because that is what i needed so badly. someone to acknowledge it. to tell me that it was normal to feel that. someone to name it because it was so real.


just before all of this went down, i had been interviewing for an OB/GYN residency. i had flown out to san francisco with zoe at 3 months to convince a group of doctors that they should hire me to work for them 100 hours per week for the next 4 years. i remember driving through the marin hills and thinking that this was crazy. i had a newborn. i needed to stop- i needed to slow down. the next day, i pulled out of the match (the process of ranking and being ranked for residency programs). it meant i'd jumped off the merry-go-round and was taking a year off. i think i also knew, the way only a mother does- that there was something wrong with my baby. and two weeks later zoe had that first x-ray.

always listen to your heart- your guts- the mind can be so confusing- but the other parts often know. i knew i needed to stop. i knew i needed some time - God knew even more- knew that in 2 weeks i'd have a lot more on my plate- i'd have a diagnosis i'd never even heard of given to my daughter. and that over the next year, we'd deal with the beings of delays and therapy, seeds of worry would be planted, and a long path would begin to unfold.


interestingly, this space isn't about 'living, loving and learning with a girl with klippel-feil syndrome'. what i thought would have been the end of me- was only the beginning and has proven so far, to be not that big of a deal. i often forget that she has this diagnosis- except for the bi-annual follow up x-rays- she's never had surgery and the holes in her heart closed up naturally- all bits of healing- answered prayers- it's good to remember that.

and it reminds me that suffering is relative. i thought at the time that having this orthopedic challenge would be such a burden for her- for us. now, compared to the learning struggles she has, it seems like nothing. and yes i've gone down the path of - OK God, you could have cut her a break!- who has nvld and klippel-feil syndrome and wears glasses and has a funny shoulder (sprengel's deformity)?

but He knows what he's doing even when i don't. and it's perfectly orchestrated. He knew that knowing the next 10 years of challenge all at once would have been too much for us- we needed it in bits. He knew that i would need that year off with zoe- to spend hours literally trying to get her to role over, to crawl, to climb stairs. that i would have broken apart- trying to do all that and process it while being in residency. and years later when we were finding out before kindergarten that she was "severe enough to need special education" it was the same week that we found out jude had hydrocephalus at my 20 week ultrasound. this was for us the "wake up call"- this was the moment when there was no denying- that something was really wrong with her learning, yet i wasn't even phased that she was going to get an IEP (individual educational plan) and need OT and PT and speech at school- because suffering is relative. and that timing, ironically was another example of Gods grace.