The Illness

As many of you know, one of our children has been struggling with an ongoing illness since January.  After multiple trips to the ER and specialists, thousands of dollars spent on co-pays, and many hours of missed school and work, we have yet to establish an accurate diagnosis and an effective way of treating her.

*(not our kid - free image from freedigitalphotos.net)



Here's what we know so far:
1.  This illness appears to be non-life threatening and not degenerative (Thank God).
2.  The kid's quality of life is very negatively affected by The Illness.
3.  Allergies and sensitivities to foods play a part in her condition.
4.  Her immune system appears quite weakened (she gets EVERY virus).
5.  Most of the doctors are well-meaning but haven't got a clue how to treat this.

Here's a few of the ways our lives have altered over the last six months:
1.  On any given day, the kid will have an incredibly painful headache or stomachache.  Sometimes the meds help, sometimes they don't.
2.  The list of foods that cause reactions (itchy mouth, tongue, throat) expands weekly and to date inclues: all fresh fruits (except strawberries), some fresh vegetables, soy products, wheat/gluten, some kinds of red food dye, and chick peas.
3.  On any given day I will be close to overwhelmed with anxiety or depression from watching and worrying about the kid and her pain.
4.  The other kids have had to accept that Mom is less organized and more likely to forget to remind them about homework, field trip lunches, etc.
5.  Any and all plans we make are incredibly tentative depending on the kid's day-to-day pain level.

What's most frustrating of course is watching the kid in pain and not being able to help.  I'm grateful that The Illness isn't worse, but I don't really have hope for fixing this in the near future.  We take it a day at a time and do our best in the now.  I don't write as much as I'd like to.  Writing happens in 15 minute bursts after I've stared at the screen for three hours, checked my phone for messages from the school, and ordered yet another book about allergies from the library.  I don't meet the deadlines I'd hoped to.  I've had to ask everyone for patience with my schedule and needing to change appointments.  I have had to give myself permission to take the time to see the counselor, get a massage, take a bath, go for a walk, or read a non-fiction book (or write a cathartic blog post).  Because if I don't do these things, I won't be able to cope with this.

Motherhood through this illness has become a different job.  Sure there's still the day to day tasks that ensure the kids are fed, clean, and generally not little assholes.  But I've had to become an expert in The Illness as see her experiencing it.  At any moment, I've got to reference a database of information about virus history, symptom description, and food reactions and exposures.  I've got to be able to recount and explain all of this on the spot from memory because apparently the doctors DO NOT TALK TO EACH OTHER.  Seriously, I have to repeat EVERYTHING every time I see a doctor?  I thought we had electronic medical records.  These doctors can read, right?

The implication of this is that I know more about this particular case of The Illness than any doctor I'm seeing.  I don't have the same medical background that the doctors do, but I'm not a total idiot either.  Kid has severe allergies.  Allergies mean immune system is out-of-whack.  Immune system not functioning correctly means she gets sick.  A lot.  No, doctor, I don't want to watch a video about a treatment method that might help in three or four years, I want you to look at my kid as a whole person.  Look at her as a mini-ecosystem, if you will, and The Illness is an invasive species that has come along and screwed everything up.  Here's the kind of scenario we're working with:  The bats are dying from an invasive parasite and so they don't eat the mosquitos.  The mosquitos are out of control and carry West Nile Virus so no one takes vacations to the lakes.  The state has less money in tax revenue due to lost tourism money.  Lost tourism money means fewer research grants to figure out why the bats are dying.  Yeah, some version of that kind of frustrating systemic problem is what I think is happening.

The only doctor who comes close to looking at the whole patient is our chiropractor.  What she's doing seems to help manage symptoms and she will actually talk to you for more than three seconds.  We're set to see a new doctor who has training in both traditional and alternative medicine at the end of the month.  Hopefully it will be worth the time and money to see him.  In the meantime, I'll continue to evolve as one part mom, one part scientific expert on "The Illness."

For Mother's Day, Can We Get Over the 3-Year-Old Eating and Get to the Real Issues?

There is a lot of discussion and debate going on this Mother's Day weekend about the Time magazine cover that shows a young, attractive mom breastfeeding a preschool-aged child.  http://www.washingtonpost.com/blogs/arts-post/post/time-cover-milks-shocking-image-photo/2012/05/10/gIQAOd8qFU_blog.html  I admit I have not read the content of the article yet and I suspect many of the people commenting on it haven't either.  But I couldn't go into Mother's Day this year without commenting.  For me, the debates about how long and how publicly a woman should breastfeed and whether or not the mom in the photo should have allowed her son's face to be visible are missing the more important issues.  Leaving aside for a minute that as a society we would find an image of a mother breastfeeding to be so shocking and controversial, some writers are working toward moving past judgement.  See for example: 


"Our job as parents isn't to judge. Our job is to love and protect our children. To clothe and feed and snuggle them. The next time you feel compelled to say something snarky about another human's parenting, maybe go give your kids a hug instead, because those are the kids that are your business."  from http://gogozen.blogspot.com/2012/05/youre-doing-it-right.html?spref=fb&fb_source=message 


Kelly offers some great perspective on ending judgement of moms by moms.  The problem, however, is that there are broader institutional challenges for mothers that are glossed over when we focus on what some consider to be parenting extremes.  Firstly, I am wondering if there is acknowledgement in the article about which parents are even able to consider following the practices of attachement parenting.  This is the same thing that drives me crazy about all those celebrity mothers who immediately lose the baby weight and then are lauded for it in the media.  Of course they lost the baby weight and look fantastic.  They have support networks their wealth and position can provide!  They can afford macrobiotic (or whatever) meals made by professional chefs and aren't depending on the time and money budgets of a more average mom to sustain their families (time to prepare meal = 5 minutes while baby naps, budget for meal = tuna casserole).  


Secondly, many families do not have the luxury of depending on one income so that that the other parent (if there is another parent) can focus so much time and effort on childcare.  Also, despite recent trends in stay-at-home dad-ing, when we talk about attachment parenting, the focus is often on what moms are doing or not doing or should be doing.  Culturally then, we are still imagining a gendered breadwinner/homemaker family model that was really only statistically true for a decade or so in the 20th century.  Well, this is the cultural ideal if you are heterosexual and middle class anyway.  Working class women have a longer history of balancing income-generating work and household duties because their income was necessary to meet basic cost of living needs.  Modern welfare policies in the U.S. reflect this class differentiation in parenting ideals by requiring benefit recipients to seek employment.


Despite an overall increase in the employment rates of women with young children over the latter half of the 20th century, work by sociologist Arlie Hoschild suggests that women are more likely than their male partners to reduce work hours after the birth of children. The "Second Shift" phenomenon, in which women face a disproportionate burden of house and care work, leads them to rely on flexible work hours or shifting to part-time work as a way to do it all.  Recent discussions about the cost to women of breastfeeding their children (http://news.yahoo.com/hidden-cost-breast-feeding-revealed-114941470.html) in the context of a persistant gender wage gap may partially explain the propensity of women in male-female partnerships to reduce out-of-the home work hours after the birth of children.  Differences in the rate of pay between men and women may also in part be due to the fact that jobs that women gravitate to are paid less on average.  Whether women enter jobs with lower pay and more flexible hours in part because they realize they will face family-workplace conflicts in the future is a broader issue that we miss with the so-called divisive "Mommy Wars."  


Finally, there is what sociologist Shelley Correll and her research partners have labeled "The Motherhood Penalty."  The researchers found that in matched pairs of resumes where other variables were held constant, women presented as mothers were rated as less committed and competent with respect to their careers (than women without children) and  offered lower starting salaries.  Fatherhood, on the other hand, was a benefit for men.  Men presented as fathers were offered higher starting salaries compared to men who were not presented as fathers.  Correll and her partners argue that cultural expectations about women as mothers are inconsistent with our expectations of who competent, committed workers are.  Gender inequality is reproduced through stereotyping and remains pervasive.


As mothers we want to do right by our children.  Doing so means that as a society we support mothers, fathers, and caregivers by respecting the fact that care work IS work.  It also means ensuring a living wage for families and adequate health care.  We can take a step in the right direction by not allowing the media to push us into defensive positioning.  This Mother's Day, let's support all people who contribute to the care and education of children whether they practice attachement parenting or not and whether they are biologically mothers or not.  Let's keep in mind the more important issues that affect the lives of parents and children and not lose focus because of an image of a breast in a child's mouth.  


(I look forward to updating this post after I've read the text of the article.)