March Flu Madness

Mid-March is normally basketball season, but this March in Wisconsin seems to also be flu season.  While others are happily tracking college teams, I will admit to following sickness trends. Not exactly a wildly popular topic of conversation, but if your area is anything like ours this week, there aren’t enough healthy people to host a cocktail hour regardless, unless it is at the nearest Urgent Care.  Today, at my children’s middle school, there were over 150 kids home from school due to illness.  A record high for the year, and a number that has steadily climbed since the beginning of the week, when 100 kids stayed home from school and over 20 were sent home with fevers. For a parent of a typical kid, like my 8th grader, the number of sick kids in the school would not even hit my radar.  However, I keep close tabs on the statistics because it matters to my daughter, who is significantly immunocompromised.  My daughter is home this week, not because she is sick (knock on wood), but because we are afraid that she will get sick and as a result, we monitor illness in our community and her world very closely.

After I hung up with the school nurse today, I took a step back and realized that the reason I am fearful is because I know how serious the flu can be and because I am tracking the illness trends with a singular focus--stopping the spread of illness in our community so that it doesn’t end up in my home.  Without my unique perspective as germ patrol for a kiddo who lacks her own complete set of germ fighters, I am honestly not sure if I would have known how important it is to get a flu shot.  If I am being truthful, I am not sure if I would have known how very important it is to keep my kids home from school for at least 24 hours AFTER they are fever-free to stop the spread of illness.   Like many people I know, I may have even skipped the flu shot altogether. After all, flu vaccines are optional and any kid will tell you that shots are the pits.  But, to be fair, being immune compromised isn't a choice and counting on the public to get vaccinated to stay healthy is even more painful.

While the flu vaccine’s effectiveness varies by year, the flu vaccine is the single best way to prevent the flu, and if you are healthy, consider yourself lucky, as the flu vaccine works the best among healthy adults and older children.  With the flu vaccine, like other vaccines, the protection varies widely depending on who is being vaccinated (in addition to how well the flu vaccine is matched with circulating viruses).  This means that older people and people with chronic illnesses, or compromised immune systems, like my daughter, might develop less immunity than healthy kids and adults after vaccination.   We are really fortunate that, according to the CDC, the  viruses in the vaccine are a good match for the circulating viruses this year.  This year, the predominant virus strain this season is the influenza A (H3N2) strain, and the estimated effectiveness of the vaccine in preventing illness caused by that strain was 43%. The vaccine's estimated effectiveness against the influenza B virus was 73%. That amounts to overall protection of 48% from the flu vaccine, according to the CDC.  While I understand that 48% may not be a good shooting statistic for your favorite basketball team, it actually does a lot of good for preventing the spread of illness in our community and potentially making the flu less severe if you do come down with the flu.  While it is late to vaccinate this year, contrary to a popular misconception, it is actually never too late.

Dr. Schaffner, an infectious disease specialist, recently commented on the flu vaccine on CNN.com, "It is very late. If you haven't gotten vaccinated and you haven't gotten sick yet, run -- do not walk -- this afternoon. You should get your flu vaccine, because it does take 10 days to two weeks for maximum protection."

I have heard people say that they choose not to get the influenza vaccine because it gave them the illness in the past.  If you hear someone talking about getting the flu from the flu shot, please keep in mind that it takes about two weeks for the flu shot to become effective and some people are exposed in that time and get sick anyway.  Please know that although the shot may trigger soreness and a slight fever, the minor discomfort from the flu shot pales in comparison to the flu. That discomfort is far different than influenza, where you are typically in bed sick for 7 to 10 days.  Aside from feeling awful, influenza has a very scary side that I would like you to consider.  

The predominant strain this year is Influenza A, (aka H3N2), a more serious form of the flu.  According to board-certified infectious disease specialist Amesh A. Adalja, M.D., an assistant professor at the University of Pittsburgh Medical Center, “When we see a flu season dominated by H3N2, it tends to be more severe.  We see more flu hospitalizations and deaths.”   While most people associate the flu with a few missed days of school or work, the flu can be incredibly serious. According to the lead investigator for the US Flu Vaccine Effectiveness Network, Brendan Flannery, the 2016-2017 flu season “looks on track to be a moderately severe H3N2 season.”   When I hear the school tell me this morning that 150 (otherwise healthy) kids are absent due to illness, my heart sinks because these kids have the benefit of normally functioning immune systems to protect them and they are still absent, feverish and ill in record numbers.  For the week ending on March 4th, Wisconsin, like many states, is still listed on the CDC’s weekly report as having “widespread” influenza.  Flu season can be downright frightening for families like mine, who worry about the more serious complications from the flu if it were to impact my child.  According to Flannery, this flu season “seems like it's similar to the 2012-2013 season, which was a season with millions of cases and about 60,000 hospitalizations and 2,000 deaths."   

I recognize that following the coverage of March Madness is much more fun than tracking the flu, but when more people are protected against the flu, everyone wins.  Yes, I’d rather be reading about the Badgers and coming down with Bracket Flu, but such is life.  The flu is something we have to deal with year-round, as it is one of the most prolific infectious diseases.  So, while our school is busy sanitizing and fielding calls from parents of sick kids, I thought I would do my part and, on behalf of my daughter,  urge you to take the flu shots and flu season seriously.

http://www.cnn.com/2017/02/16/health/flu-shot-effective-cdc-study/

Shine On

My daughter is the brightest light I know and despite the many clouds that have covered her sky in the past decade, her star remains, forever twinkling.  My daughter, Nadia, has 22Q11.2, a chromosomal deletion that made her early years almost unbearable in their uncertainty and responsibility, the sterilized smell that permeates every hospital and doctor office still brings me instantly back to those dark and stormy days, her surgeries and those long and sleepless nights.  Yet even when Nadia was an infant and toppling toddler, I always knew that no matter what her deletion had taken away from her, her spirit had given her this enormous dose of joy, unparalleled and raw.  Her happiness sparkling all the more in such  stark contrast to the despair I felt in caring for someone whose needs were not in the index of my well-used parenting book from rearing my firstborn.  My teary uncertainty always balanced by her surprising ability to seem to know just what we needed to keep the faith--to belly laugh before I knew she could hear what I was saying, her coy smile beaming at me from her infant car seat on the way back from long specialist appointments, her jokes in sign language after speech therapists told us to consider a laptop to type her thoughts, her ability to dance the macarena with ankle braces and not miss a beat.  For years, we have tried our best to find the right path for her, with doctors, teachers and life, but without a doubt, Nadia has lit the way…in her inexplicably fearless way.  

All along we have been saying to ourselves that it is remarkable that Nadia's spirit, unlike her immune system, remains uncompromised.  In the 29 years before her arrival, I never realized all of the things I took for granted.  I honestly never gave a thought to how little it would take to make me happy after seeing our dreams crumple when our daughter was first born and we realized she would always have to struggle with things we had never before counted as blessings--the luxury of two kidneys, a normal immune system and hearing, a typical working memory and number sense.   Even after heart surgery at 5 pounds, kindergarten at 5 years and a whopping 28 pounds and middle school at 10 years and under 4 feet tall, Nadia still appeared, until recently, to be larger than life, her loud chuckle enough to spread cheer on even the hardest of days.  Her joy and her boundless affection the perfect antidote for her silent battle with a missing piece of chromosome, one that robbed her of a sequence of about 3 million DNA building blocks (base pairs) on one copy of chromosome 22 in each cell.  Something that sounds complicated when I read about it, but incredibly, is even more convoluted in real life, the almost  200 known health and developmental issues 22Q causes in children impacting Nadia in big and small ways, in the past, present and future, like a dark unknown lurking at every corner.  We try to ignore the list of worries and doctor visits and carry on with our chin up and our big, fat bucket list, determined to enjoy every step of the way after her tumultuous start. But,  it isn't easy, particularly when I see Nadia's light flicker, dimmed by life, by IEP's, by cruel kids, by differences and ignorance, by things that matter to her, the simple, but the oh-so-complicated.

As Nadia enters her third month of middle school, I will admit that the transition has been akin to expecting to drive over a speed bump and instead finding ourselves driving up Mt. Everest in a Yugo.  I say driving up, because we haven't yet reached the pretty part, the part with the view, the part with the downhill, the easy coast at the end.  This appears to be the part where I am putting the pedal to the metal and yet accelerating just to gain enough momentum to move my car, my daughter, slightly, imperceptibly forward.  It is a big mountain, and most days, I honestly can't tell if I have made any progress, or more importantly, if Nadia has made any gains, because the view up the huge mountain looks the same. Daunting. Nearly impossible.  Never-ending.

I keep referring to Nadia's IEP like it has all of the magic answers to scaling the mountain of public education with a daughter whose IEP has health and learning components that are supposed to help her in almost every possible area of school--from germ patrol for her severely compromised immune system to gym patrol for her fused spine, joint pain and solitary kidney to reading, writing and math, for the areas of her brain and memory that were all impacted by that missing minuscule piece of chromosome 22 .  Apparently, that sequence of 3 million DNA base pairs had a lot it was supposed to do.  Go figure.  Unfortunately, asking a new middle school team with a complicated schedule of teachers, aides and classes to accommodate Nadia's deletion based on her IEP is like trying to ask Nadia to drive herself up the mountain, with limited directions, no license and no GPS.  She may be able to stay on the road, she may even be able to keep up with the other cars for awhile, but she would have no idea where she is going, other than going with the flow.  No, she isn't causing accidents and holding up traffic. She isn't flagging someone down to say she's lost.  But, she has no business being behind the wheel.  She doesn't know how to navigate the road ahead, she doesn't even know where she's going.  Sadly, this is precisely the way her middle school day progresses.  When I ask for feedback, for special directions, for a navigation system, for modifications so that Nadia can see over the steering wheel, can get to where she wants to go, the teachers seem puzzled, frustrated and disjointed, their part of the trip a small part of the journey, unaware that without each piece, Nadia isn't moving forward. That she might, God forbid, crash.  The teachers don't see her when she comes home at night, crushed and feeling completely lost.  The teachers have not once checked in to let me know if sickness is circulating in her  classes, a worry that has, remarkably, taken backseat to the fact that our daughter is drowning in middle school.

As Nadia continues to come home each night with an empty planner with the exception of "Read," despite 8 classes in her schedule, my hope in special education, in appropriate, individualized instruction dwindles and Nadia, my larger-than-life little one, finds her confidence shrinking as well.  "How's Gym?" I ask her, hoping to find a neutral topic.  She replies, "I bombed it."  "Gym?" I ask again.  "No, German. Or Gym," she replies.  "That's too bad. How come, peanut?" I ask, feeling my heart sink as she shrugs her shoulders, "I'm not sure."  She switches gears, "I am supposed to make a flag of John Cabot, though."  Hmmm.  That's a new one for me, but it turned out to the epitome of why switching classes and teachers multiple times a day in middle school is the less-than-exhilarating uphill climb up the mountain.   

I proceeded to ask Nadia about John Cabot, who is apparently an Explorer that she's learning about in Social Studies.  I said, "Well, what do you know about John Cabot?"  "He's from 1492," she says. "Were you born then?" she asks, staring at me with her big brown eyes. "Nope," I say. "That was a really long time ago, Nadia."  "Was Dylan?" she wonders, even though he is her 13-year old brother, her deficiency in her sense of time not allowing her to understand the timeline of events, past or present. " Nope," I say again, wondering if I should explain how long ago it was, but she interrupts, "He was an Indian explorer from Italy, I think. I'm making notecards."  "Do you have a test coming up?" I inquire.  She ignores me and continues, "He sailed seven seas. I think, and I have to find his flag and color it."   She walks over to our computer, googles "John Cabot flag" independently, pulls out a piece of white paper and starts sketching the flag. Perfectly.  She colors it in and as she does so, I feel ever-so-slightly reassured.  I compliment her, "WOW. I didn't even know explorers had flags. That's impressive, Nadia. What did he do when he was an explorer, do you think?"  She contemplates the question, and guesses, "Mine died. Looking for gold?"  Hmmm. Without knowing who John Cabot is,  I try to summarize my surprisingly limited recollection of explorers, thankful it is was recently Columbus Day and I refreshed my memory, and she replies, "Did you know those explorers?" "No, sweetie," I say, tears suddenly stinging my eyes.  As she's coloring, she says with a big smile that lights up her face, "That would have been exciting, wouldn't it?"  Yes, yes it would, I think, staring at her twinkling eyes.  Deep down, Nadia is still happy and she is healthy enough to attend school.  I need to keep my eye on the prize, I tell myself. On her extraordinary light.  

I read a quote recently from Yogi Bahjan, part of my more-zen, less-wine approach to our middle-school struggles, and every time I reread it, I can picture Nadia, my shining star, "Every human needs loftiness: exaltedness, self-confidence and appreciation.  To be grateful that we are alive at this moment and we are alive together.  It's like stars in the sky on the same night.  Some are big, some are small, some are shining.  Some come late. Some come earlier.  But in the brim of the night, all are lit on their axle.  On their orbit, they exist.  That is the condition of every human."   For Nadia's joy and sparkle, and simply having her here with us, I am grateful. For today, for now, despite the uphill middle school climb, I try to remind myself that is all that matters.  

Community of Immunity

Dear Herd,

I recently read a spectacular book called, On Immunity: An Inoculation, by Eula Biss, that has stayed with me, in bits and pieces and, honestly, in entire passages. You should read it. Today.  The book is incredible. And short. At the very least, just read this blog and pass my recommendation along to your pals.  

I will come right out and disclose that when I was reading the book, I was on vacation in southern California and as soon as I landed back home, the news ticker began bleating warnings about a Disneyland visitor spreading measles throughout California, three other states and Mexico.  Red flag. Red flag. Red flag.   As of today, a month after the measles exposure in Disneyland, the count is now up to 53 confirmed cases of measles and the outbreak is not yet contained.  After devouring fiction and bestsellers (and fluffy magazines) for years,  I found On Immunity to be one of the most relevant and gripping books I have read; it is literally bursting with the facts, the history, and most importantly, with the fear that drives the vaccination conversation (and the spread of measles) in our country. 

Now for the real disclaimer about what prompted me to buy a book about immunity over the latest and greatest Fifty Shades novel in the first place: parenthood.  What set off my five-alarm gut reaction to the recent news of unvaccinated pockets in our country and the resurgence of a previously snuffed out disease like the measles, or whooping cough, is a bit more complicated.  My daughter has a significantly compromised immune system and can't be fully immunized, because for her, the live vaccines actually present a threat to her already struggling immune system.  Thus, she is far more susceptible to the viruses because she is unvaccinated and has a compromised immune system (I believe this could also be Webster's definition of Catch 22).   Therefore, I am never far from the latest news on viruses and vaccinations (or a bottle of hand sanitizer).

Yes, the author's perspective as a new parent resonated with me and will certainly resonate with you, whoever you are, because we are all part of the same herd, but the truth is that parenting my healthy firstborn son and parenting my daughter are about as similar as riding in an airplane and jumping out of one.   When my son was born, if I'm honest, it almost seemed like he was too healthy to get a vaccination, for fear it might make him sick, it might mess with nature, who had given me this incredibly perfect being to join the world.  With Nadia, from the moment she was born, there was no thought of "too healthy."  She joined the world with a status that flashed "high risk" and I still have a jewelry box of her little hospital bracelets, the size of pinky rings--reminders that we actually survived, when it seemed like we would all perish from exhaustion, from waiting in silent surgery waiting rooms and from the unbelievable way you have to cling to the earth when it has turned upside down.

My sweet little Nadia has a compromised immune system due to an infinitesimally small chromosomal deletion, 22q11.2 to be exact, that causes a colossal list of complications.  Since she was born and we were told what was causing her to be so very sick and tiny, we have had immune concerns weighing heavily on our teeter totter world.  Up. Down. Up. Down. But, no matter what part of our journey with Nadia we are on, the up, the down, the easy or the hard, her lack of immunity to the germy, wide world has been on the forefront of our parental responsibility.  Indeed, I read On Immunity wanting to know more about why and how the country can consider vaccines, incredibly safe preventions for incredibly horrible diseases, a choice rather than a responsibility. 

As I read the book, I found myself tabbing almost every other page.  Truly. I wrecked my book, so please don't ask to borrow it unless you like serious dog-ears.  The book articulated what has been killing me since the dawn of "why I choose not to vaccinate my kid" parenting blogs, discussions and articles. The notion that a study of 12 people (yes, you read that right, 12 people) in 1998 falsely linked autism to vaccines could still today, in 2015, be causing people to question vaccinations long after it was debunked by real studies and retracted by the author is unfathomable to me1.  When I see the news with maps of high rates of unvaccinated children, pods of "high risk" for the spreading of diseases that are not in inner cities or poor towns, but in affluent communities in northern and southern California, I am speechless.   Quite simply, vaccination is successful by getting the majority of the people to protect the minority of the people.  As Biss writes, vaccines protect the minority of the population that "is particularly vulnerable to a given disease.  The elderly, in the case of influenza. Newborns, in the case of pertussis." And as I am reading the book, I am envisioning Nadia, in the case of everything.   Her sweet face, her wavy brown hair, her light freckles and cinnamon eyes and her chuckle that is deeper than she is tall. 

As I read, I started to acknowledge the fear, the misperceptions about risk and the disconnect that allows people to feel that they have an individual choice in vaccinating, when vaccinating is, by its very nature and history, a community solution to serious public health problems. Did you know that the chance of contracting measles could be higher for a vaccinated person living in a predominantly unvaccinated community than for someone that isn't vaccinated in a widely vaccinated area? Last year was the worst year for measles in California in nearly two decades. And that was before the Disney outbreak.  In 2014, California also had the highest number of whooping cough, or pertussis, cases since 1958.  This is not a coincidence; the anti-vaccination movement has consequences that all of us need to consider.  Biss weighs the facts and false information from all sides and exposes the roots of the vaccination dilemma--cautioning that "perceptions of risk--the intuitive judgments that people make about the hazards of their world can be stubbornly resistant to the evidence of experts."

"Our fears," she writes, "are informed by history and economics, by social power and stigma, by myths and nightmares…When we encounter information that contradicts our beliefs,…we tend to doubt the information, not ourselves."

Although you, the public, have a "choice" to vaccinate, I worry because my daughter does not.  One of the unique aspects of immunity through vaccination is that small pockets of society can indeed exempt themselves from vaccinations without putting themselves at direct risk.  As the book states, the "exact number of people this might be--the threshold at which herd immunity is lost and the risk of disease rises dramatically for both the vaccinated and the unvaccinated--varies depending on the disease and the vaccine."  We realize when the number of people "opting out" of the vaccine is too many when we have already passed the tipping point.  

In other words, when it is too late.  

So, to those who decide to wait, to under-vaccinate or to obstain, please realize that you are contributing to an epidemic. Maybe not to your baby. To your child. To your neighborhood. But to our society.  You are allowed to take that risk solely because you are protected by those who DO vaccinate.   When you make an exemption just for yourself, you are failing to consider my freckled daughter, the children with cancer, the elderly, the immune compromised, the newborns, the people in society who life has made an exemption for.   And let me tell you, as a mom whose world revolves around someone whose little life has been full of big exemptions and exceptions, I am terrified by your "decision" to choose to take a free pass.  Just as I can't see who in the herd has made a "private" decision to not vaccinate their children, you, too, can't see who among us are the ones that you are protecting. They are not always obvious; they are not busy blogging about why you should become fully immunized. Oddly, it's hard for the sick, the babies or the elderly to do that. They aren't exactly on the speaking circuit and writing essays in their spare time.  Which is why I loved this book.  Fiercely researched and stuffed full of facts and thoughtful consideration of a topic that effects every single person in our country.

Nadia's exemptions, like the exemption from a perfectly healthy life, the exemption from a complete immune system, the exemption from complete normalcy, are so far removed from those who make a special philosophical, parenting exemption just for themselves, based on some debunked study, based on Jenny McCarthy, based on playgroup banter or a chicken pox party at their private school.  Based on fear.  When I read about those who parent based on whichever way the trendy wind is blowing and about mail order lollipops that have been licked by kids with chicken pox, I feel a bit like perhaps I have suddenly gotten some sort of flu myself. Sickened.

According to the American Council on Science and Health, vaccination rates in some pockets of affluent Hollywood are as low as South Sudan, where only 65 percent of children are vaccinated.  For the record, herd immunity works only when 90% of the public is vaccinated, and when those numbers dip, the spread of disease is not contained.  Precisely what is happening with measles right now and whooping cough last year.  Just because you or I don't live in pockets where vaccination rates are the lowest, it doesn't mean that we don't travel or mingle with those who do. Our herd is a fast moving bunch these days. And apparently, a fearful one.  

Biss addresses one of the key elements in the vaccination debate-that the rising numbers of unvaccinated people are not what one might expect: undocumented immigrants, single moms, the poor.   They are, by and large, well-educated, upper-middle class, mostly white parents.  People of privilege.  The most glaring privilege, of course, is finding themselves in the land of the healthy.  

As I have spent the past 9 years navigating the waters of an immune compromised land and learning about immunity, the notion of a "conscientious objector" to vaccinations seems more and more like an oxymoron, kind of like the "Great Depression."  Biss points out that "conscientious objector," now a term that mainly refers to war, actually began when people in Britain refused vaccination back in 1898.  Part of the appeal of this incredible book is in the facts, both present and historical.  I was fascinated to learn that even George Washington, a smallpox survivor, struggled with the position of inoculation, and made the controversial decision to inoculate all new recruits, fearing that smallpox, not the British soldiers, would ultimately defeat his army.

 On Immunity ponders the thinking of philosopher John Rawls, "Imagine that you do not know what position you are going to hold in society--rich, poor, educated, insured, no access to health care, infant, adult, HIV positive, healthy immune system, etc.---but that you are aware of the full range of possibilities.  What you would want in that situation is a policy that is going to be equally just no matter what position you end up in."  I couldn't agree more.  We live in a country that allows us to decide whether or not to vaccinate our children or ourselves.  We give people a choice, we give them handouts full of disclaimers or risks.  But I don't believe we do a good job of informing parents -or anyone considering a vaccine - that your choice about whether or not to vaccinate denies the existence of my daughter, and countless others, the ones whose health depends on the choices others are making, because they can't be immunized.  It isn't a choice for her or for babies, the elderly or the sick.  Herd immunity is her immunity and their immunity.  The choice that many parents have about whether or not to vaccinate their children doesn't just impact their child -it has an impact on all of us, especially those like my daughter.  Where is that line in the vaccine disclaimer hand out? 

Biss quotes Susan Sontag, author of Illness as Metaphor, "Everyone who is born holds a dual citizenship, in the kingdom of the well and in the kingdom of the sick.  Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."  I will tell you that I would spend all I have to buy a permanent passport into the kingdom of the well for my daughter, but until I find that passport, I am counting on you. On everyone in the healthy herd.  

1http://www.webmd.com/children/vaccines/news/20100202/study-linking-autism-to-vaccine-retracted

Ripples

I visit my 99-year old grandma as often as I can.  At least once, maybe even 2 or 3 times a week.  It is the highlight of my week and admittedly, the source of most, if not all, of my meaningful, uninterrupted reflections.  I have a 45 minute commute to and from her house that allows me to soak in her wisdom, or her memories, and to ponder just how I want my life to go, assuming I am lucky enough for it to plod along on a steady course for the next 60 some odd years.   Now that my grandma is aging, something which she seemed oddly, remarkably, insulated against for as long as I can remember, I am starting to write down all that I can in our visits together because I am afraid the hourglass will be empty before I save all of the precious treasures.  Of all the days and years and time spent on this earth, my grandma seems most proud of one thing. Her teaching.  It weaves it way into almost every conversation, the little light that gives her hope and pride on the grayest of days, decades after her last class dismissed.  

She taught in a country school house, in a one-room, outhouse kind of school when she was still shy of 20 years.  She lost her job when she got married. The rulebook said her job was better used on someone who didn't have a husband and the Depression made what seems illogical and certainly discriminatory now, practical.  She finished the year and went off to farm with her new husband.  Years later, in 1967, after farming, raising three children and serving over a decade on the School Board, even as the first female School Board President, she found herself back in a teaching position, this time in her small town Monticello school and at the helm of a 4th grade class.  She taught for years, going back to college while teaching when the district rules mandated that her "County Normal" teaching degree, which had cost $8 a semester, was no longer sufficient for teaching the young minds of that, more modern, time. She graduated Magna Cum Laude, shortly before she became eligible for Social Security, and had her final report card from college on hand at her senior apartment until past her 99th birthday.  She still keeps a hand-written notebook of all of her students and classes, right back to her first class in 1933, in her living room, despite the fact that many of her first classes only have one or two names that remain without an asterisk (the symbol she has used to note when a student has passed away).  

Above her kitchen sink today, I noticed on the bottom of a Kindness plaque that has been hanging in her house or apartment since before my birth, that she has a newspaper quote taped in tattered, golden aged scotch tape, "A teacher affects eternity.  You never know when his/her influence will stop," by Henry Adams.  As she munched her morning bun and sipped her coffee today, the same ritual we have every time I visit, I asked her if she ever thought about that quote and plaque and she said the most profound thing that I have heard her say since her stroke left her thoughts frequently, frustratingly, trapped a few months prior.  She said, "Just be sure that whatever you tell the youngsters…if a teacher who the children respect and admire, tells them, it means more than mother or dad.  If it is true that so many children have bad influences at home, then it's just that much harder for the teachers to overcome those…but, then again, teachers are that much more important.  So important.  Worth our utmost admiration and praise."  I set down the dishes in the sink and started recording her on my iPhone, determined to savor her words, now fewer and farther between, and borrow her hard-earned wisdom.

Whenever my grandma and I would go out "into town," which used to be weekly, to do her errands and grocery shopping, she would inevitably run into former students, parents, teachers and families that she had known through her teaching career.  Given that my grandma seemed to not only be ageless in mind, but also constant in her appearance, a round, white-haired, jolly woman that has been in the same face, body and wardrobe since the 1970's, EVERYONE recognized her. A local celebrity of sorts, but the approachable, huggable, giggling kind.  I'm convinced it added years to her life, seeing those folks and hearing their stories of how she told them they could go to college and they DID, even when their  dad had not finished the 8th grade and their mom was no longer "on this side of heaven," as she would say.  She would ask for a half pound of baby swiss cheese and creamy cole slaw at the deli and the clerk would lean over and say loudly, "Lillian, you had my daughter in school.  She still talks about how much she loved your class.  I think she was a teacher because she loved you so much."  She would run into students who said that she snuck her lunch into their bag when they didn't have money and they never, ever, forgot that.  We would talk with her former student, now a middle-aged man, who had decades ago engraved a wooden sign with "Mrs. Hefty" on it for her classroom and she would proudly boast that it still hangs from her door at the apartment, to remind her of her pupils.  As an avid obituary reader and lifelong member of a small town, she would go to random funerals and have a line waiting for her, people who wanted to also pay their respects to someone who made them believe that they could succeed and whose road in life had been altered, even if slightly, by her contribution, her time and, the most important part, her love of teaching and of them.

Even now, as my grandma adjusts to her new home in an assisted living facility, her apartment is adorned with classroom decorations, student gifts and quotes about teaching and children.  Teaching is the part of her life that she said so incredibly, surprisingly, eloquently today, "made me feel like no matter what, I made a difference."  I didn't follow her footsteps into teaching, but as I thought more about it today on my ride home, I realized that the difference I can make is to pay it forward and to give recognition to the teachers that don't have the small town butcher or banker or waiter to tell them that their life was changed forever because of that extra effort, the extra praise, the extra mile.  

Teaching today is hard, I know it is. I feel it and see it.  From absent role models to suffocating parents, from floundering, failing kids to uber-stressed college-bound teens, society's pressure on teachers and scores is the one constant.  It seems to me that sometimes today's standards set us up for nothing more than underscoring, overstressing kids and drained teachers.  My grandma certainly had her share of obstacles too.  Her challenges, like no water or electricity, just a stove in the corner of the schoolhouse, and a salary of $65 a month for being the janitor, nurse and teacher to 27 students in 8 grades, were plentiful.  And yet, I think she takes such pride and has such satisfaction in her teaching career because she has the benefit of seeing the fruits of her labor and looking back over a century and seeing that her life really, truly mattered because it mattered to them. To her students. To their kids and grandkids and now, even to their great grandkids. To their diplomas. To their careers. To their lives and to who they became as people and families.  No one but a teacher can truly make that difference, so as my grandma said so earnestly today, I, too, believe that teachers stand nearly alone in deserving "our utmost admiration and praise."  

I hope that maybe, just maybe, we can all take a minute to tell a teacher that their impact, like hers, is still, forever, rippling forward.  I think that my grandma's happiness, and theirs, depends on hearing the echo of their class, their students, their DIFFERENCE coming back to them, maybe loudly now or perhaps almost imperceptibly, years later.  No matter what the challenges are, that alone could make the journey worthwhile.   Educator John Hunter may have said it best,"You'll never know your effect as a teacher. You'll never understand the full impact of your reach.  Everything you do is like reaching through time-because you do it and you affect their actions and behavior and they affect other people decades ahead of you.  Even though you may never see them ever again but what you said, what you did, how they remember you may live on for decades.  Everything you do is important. Everything you do has meaning."   Although I still cling to my wish that my grandma would live forever, I have a sneaking suspicion that when her time on this side of heaven is done, I will be so relieved to know that a part of her will always live on because she was a teacher and that I was lucky enough to reach through time with her and see what that really means.

The Well

Nadia turns 9 this week. 9 hardly seems possible when I think of how quickly time has passed between her swift arrival on a crisp, gray March day and today.  The nine years that have passed have taught me more than all 27 years before she became my daughter.  Unlike the first weeks and months after I first held her, my thoughts are not paralyzed with fear or worry.  Today, I woke up and knew with certainty that there is no way I could feel this happy had I not experienced the sorrow that accompanied her first years.  I have kept a tattered page from the book "The Prophet" in my dresser drawer since Nadia was a tiny baby, when she was recovering from heart surgery, nursing every hour and struggling each day to even breathe comfortably.   I read this quote in the book and it struck me so profoundly that I actually ripped it out and shoved it in my messy drawer, for later, for when the joy presumably arrived and the nauseating fear subsided-- "The deeper that sorrow carves into your being, the more joy you can contain."  I tore the page out and held it, glancing at it over and over again over the past near decade and marveling in the highs and lows at how true it rings and it has never been more true than it is today.  I am not one to fundraise, to preach, to wear my cause on my sleeve, because I am a private person… because I have a baby girl to protect that doesn't need a label or a whisper behind her back. 

 Over the years, I have learned that the 22q11.2 deletion that once defined how I thought of my sweet baby girl, that once took my breath and my dreams away, has faded into simply a word on her chart and a source of hope when I read it in the latest article on stem cell therapy's incredible promise.  I look at Nadia and don't see her deletion, heart repair or her missing kidney.  I marvel that she has the sweetest and biggest soul that I have ever seen in a child.   I don't see her speech delay. I don't see her low tone or foot braces.  They are long gone.  She gave up signing at age 4 and never looked back--although she often uses hilarious gestures while she is dancing and singing in the shower.   I don't see her learning difficulties.  She just read me an entire chapter book and giggled at the funny parts with such delight that I found myself captivated by a children's story. About hippos.  I don't see her doctor visits--20 in the past three months.  When we left her appointment last week, she clutched my hand while skipping and told me that "our date" was her favorite part of the day.  I don't see her fused spine, because she surfs and skis and does cartwheels and she literally bounces with joy.  Most days, I don't even see her immune deficiency.  Through magic, impossibly wonderful teachers and friends and loads of prayers, she not only goes to school every day, but loves school every day.  I think our luck is quite simply otherworldly.  Honestly, I think her love and fairy dust have healed all of us and literally blown into every little corner of our world.  

In utero and at two months, we had the crippling circumstance of wondering what would happen if we lost our baby, our precious baby.  We were told that things might work out, but she was little.  But her labs were off.  But her numbers were low. But they didn't know. But she had this deletion. Birthweight at 6 weeks old and preparing for a long heart surgery that would bring a grown man to his knees. That did bring my doctor husband, the one that never worried or cried, that tended to gunshot wounds in Trauma Centers, to his knees.  

 We shut off the radio. We went to bed at 8.  We slept fitfully, in between her feedings, and laid solemnly in bed until we had to get up and face the day.  We stopped talking to friends with healthy kids because it was impossible to relate to teething and solid food debates when we were researching Duke doctors to do thymic transplants, or finding specialists to help with surgeries.  We literally curled up and rocked our baby, more for us than for her,  and needed our own moms and dads more than we had since we were children.  I wondered if I had taken more prenatal vitamins, eaten more wheatgrass, more green smoothies, avoided whitening toothpaste, gotten more sleep in pregnancy, if I could have made a difference--spared my baby girl the list of anomalies that stared at me from the Waisman Center and the brochures that accompanied each visit to a different specialist.  

And then, the sun came out.  It was brighter than anything you have ever seen.  Nadia, even as an infant, had a smile so sparkling and brilliant, that it made her eyes scrunch shut.  Apparently, the well that sorrow carved was indeed deep enough to hold a lifetime of joy in the smallest imaginable package--20 lbs. at 2 years, 30 lbs. at age 6, 40 lbs. at age 9.  Despite her size, she packs a serious punch.  She takes everything in stride and has such a big personality that sometimes I am surprised when I see the scale that she could truly be so little.   

I think that often we want our kids to be like us, to meet our standards, to make us proud with their achievements and mimic us so that we can relate, so that we can show the world how successful and bright our children are--an extension of us.   In this case, I think that the opposite is true.  I think we more often strive to be like her, to accept her for precisely who she is and for what her best is rather than "the best."  A gift that clearly came with a hefty price tag.  She loves so deeply, enjoys so richly and feels joy so intensely that it is like watching a beautiful sun rise and feeling the heat of the best summer day, all at once.   She isn't reserved or self-conscious, like me, and our journey has let me see the best and most beautiful parts of everyone.  So, on her birthday, I felt compelled, contrary to my nature but so fitting with Nadia's, to share something personal with the world, without worrying what others will think.

Since that cold and overcast day in March 9 years ago, we have witnessed countless quiet, unspeakably beautiful acts of kindness towards Nadia and towards us.   She has turned our world, our friends, our coaches, our teachers, our neighbors, into family.  From the friend who brought me her pillow when I first checked into the Children's Hospital with Nadia because she was a nurse and knew that her pillow would be softer, more comfortable, to the stoic neighbor that brought soup and dropped it on our doorstep, with a tiny note and an angel pin that remains affixed to the shade of her infant car seat that I just can't part with, I am left in awe.  From my sister and family who have listened to every high and low and sifted it out for me with such grace that I swear they walk on water, to the friends that gave us a little jar of glitter fairy dust that still sits on Nadia's dresser and will surely be sprinkled somewhere on her wedding day, the world has rallied around us and held us together.  

Nadia recently made rainbow loom bracelets for practically the entire team and stands at my son's basketball tournament.  She took such delight in each gift, in sneaking up and delivering them, in selecting just the right colors and in seeing the look on their faces when she gave them her gift.  I was touched. But, honestly, more grateful for the brilliant guy who marketed rubber band bracelets and kept her occupied for a day in a gym.  However, the next weekend, when I saw, not one, not two, but practically a dozen people---coaches, grandparents, teammates, roll up their sleeves, just a bit, or sneak a little wink, to show her that they had worn it for good luck, I saw her literally light up and stand taller.  And I knew. Right then.  This is the story of Nadia.  She hugs bigger. She burns brighter.  She loves deeper.  And she is the happiest little girl, despite her differences, despite everything. I think she is honestly here to teach us that our well can run over with joy if we just live simply, happily, and with loads of love for the world.  She accepts everyone just as they are.  On her birthday, I hope that the world can see, above everything else, that love and acceptance is indeed all we need.  

I still worry about her as she grows up, that her differences might matter more. To others. To her GPA. To herself.  To colleges.  To peers.  But, I watched a video, 1,000 Miles of Luca, http://vimeo.com/84061549,

recently (an incredible video) and realized a simple truth.  We don't spend time with people because they are the smartest, the most academic, the most athletic, or the most articulate.  We spend time with people because of how they make us feel.  I hold fast to that today because I am celebrating my amazing daughter and the ripples of joy that she has spread in only nine years.  The skies the limit, baby. The skies the limit.