Archive for September, 2010

So, I got pulled over by the Letter to the Teacher police…

You know the violation, right?

“Please send a letter that explains the strengths and challenges of your child.   What are the goals you have for your child this year?   We invite you to tell us any additional information that would be helpful.”

I didn’t write a letter.

I can remember when I was asked to do this for The Boy when he went to kindergarten.  Man!  You would have thought that I had won the lottery!  It was my opus!  Chronicle the first born!  I wrote my heart out, cc’d the grandparents, adapted a copy for his baby book, and, in addition, wrote him a Benidiction letter to be opened the day he graduates from high school.

Four kids deep, The Oldest Girls’ teacher had to email me to ask where her letter was.

Now, in my defense, The Oldest Girl has the same two, core teacher this  year as she did last year.  Those teachers sent me the exact letter request again this Fall.  I wrote a damn fine, and wholly complete letter to them last year.   I mean, come on, I live with The Oldest Girl, and they taught her every day.  It’s NOT like they don’t know her already.  Do they really need ANOTHER letter?  So I prioritized.  I had to write the letter for The Baby.  She was off to kindergarten, and neither the teacher nor school knew anything about her.  I wrote the letter for The Middle Girl right away.  I love the teacher she has been assigned, and that teacher holds a special place in her heart for my kids, so, like, you gotta keep the love flowing, right?  The Boy’s teachers did not request a letter.  He’s in middle school, and they really are satisfied with me as a parent if I make him wear deodorant every morning.

I confess.  I kind of gave myself permission to skip it.

Then I get the email, “Would love your insights about Oldest Girl when you have the chance.”

In fairness to the teacher, this was a loving and sincere message.  Genuinely, this is a teacher who wants to serve The Oldest girl and support her in every way possible.  I know this.  I believe this.

That said, I so felt like the kid sent to the principal’s office for smacking my gum in class.  Really.  That’s what not turning the letter in on time boiled down to.  Smacking my gum in class.  The attitude problem was entirerly my own.

As some of you veteran parents already know, it’s the tedium of parenting that sometimes breaks Hallelujah.  It’s those phrases or tasks we have to do and say over and over and over and over again that erode enthusiasm like acid rain. Like…making lunches or doing laundry, or “Who’s turn is it to do the litter box?”… Blah, blah, blah!

However, as I confess in I Was The Mamma, the idea of playing nice really resonates with how I was raised, and it was my duty to send in the letter.

I needed to connect to the joy of her.  I needed to let her light of love shine through me.  The Oldest Girl is a TORCH!

I resolved, however, to mix it up this year:

Oldest Girl

Deeply empathic.

Intrinsically driven.

Creative.

Passionate.

Resilient artist.

Ardent friend.

Ready  music.

Perseveres.

TORCH!

intense

convicted

situational intolerance

easily hurt!


Go forth and grow strong in relationships.

Gain confidence through self-investigation.

Stage performances.

Seek opportunities.

Acquire new accuracy and skills.

Honor the truth in the opinions of others.

Rise up.
Drink deeply!

Oldest Girl.

I did my best, it wasn’t much
I couldn’t feel, so I tried to touch
I’ve told the truth, I didn’t come to fool you
And even though
It all went wrong
I’ll stand before the Lord of Song
With nothing on my tongue but Hallelujah!

Catalogue of Laments Since The Husband left town for a Week Yesterday Morning:

  1. The Boy has been vomiting for two days.  He face is the color of Crest.   His knees are as wobbly as his mood.  The Boy doesn’t cry much anymore.  I had to run out to get the girls to soccer.  He called me to tell me dry heaving hurts and, “Mamma, when are you coming home?”
  2. The Mamma has also been a frequent porcelain flyer.  Enough said.
  3. The cat ran away.  I found her sulking in the basement.  This is the cat that often drinks from the toilet.   I hope she didn’t have a bad, bad water experience.
  4. Back to School Night is tonight.  No way I can go now, of course, and attendance advertised as strictly optional, of course, but we all know that there will be a clutch of those kinds of women (who don’t act like ladies or deserve the title) that take attendance.
  5. I can’t find the Phillips head screwdriver.  If it’s MIA enough to elude me, baby, it’s gone.  I’ll have to check under The Baby’s bed.  That girl takes trophies.
  6. The Oldest Girl lost a tooth and I don’t know how to do the email from Flossie.

Catalogue of Blessings since The Husband left Town for a Week Yesterday Morning:

  1. A BFF specifically called to check in on how The Boy and I were feeling.  She made a great joke about, “Blessed are those who mourn!”  (She loathes puking so much that we call it The Thing That We Do Not Mention.)
  2. The Boy lifted his head from the sink long enough to say, “But Mamma, you’re sick too, you shouldn’t have to clean it.”
  3. The cat lets The Baby hold her.  The cat lets The Baby carry her around.  The cat lets The Baby be the mamma.
  4. I don’t hang out with those kinds of women. My friends pick fresh roses from their gardens to share their beauty, they assign my cell phone number a special harp ring on their phones, they carry soup, and make their own pretzel dough.  The women friends in my life don’t keep score cards because they are too busy living and loving and growing.
  5. I will use The Husband’s pocket knife.  Screw the Phillips.
  6. I got email, Baby.  I can text.  The Husband does not have to be in-state for me to delegate!

How I keep my relational, spiritual and mental math can be a Hallelujah breaker.  The heart is not a checkbook.  I decide whether to count debits or deposits.  That kind of balance is Grace.

Even in the potty, I’ll stand before the Lord of Song with nothing on my tongue but Hallelujah!

Spelling is a Hallelujah breaker for children and adults.  To be more specific, Spelling homework and quizzes are constant Hallelujah breakers for elementary students (past 5th Grade, most students use Spell Check like the rest of us), and Spelling homework is a classic Hallelujah breaker for parents.

One of the serenity tippers to both parties is when a kid comes home with a list of family words and one or more Spelling rules.

Believe it or not, I like rules.  They are like runway lights.  They identify a course of safe passage.  However, what if a child brings home a list of words like:

CVVC rule/CVCe rule

boil        rain        name        heal       bake
score       hope        score       shade      tune

Given the English language has many Spelling rules that confuse native speakers, I wonder how a mother to whom English is a second language feels when an acronym riddled list like this comes home.

Acronyms, like professional vernacular, are only helpful when two people of the same subject matter expertise dialogue.  Using linguistic acronyms does not help the student or the parent understand a Spelling rule if it is not also operationally defined.  So if the parent has not learned that CVVC means a word characterized by the pattern of consonant, vowel, vowel, consonant, then it does not help anybody’s anything to be told, “To add –ed or –ing to a CVVC word, simply add it.”

Likewise, the listing CVCe offers no aid to the multi-tasking Mamma, who really needs to pack four lunches for tomorrow, thank you very much, and oh, by the way, The Husband is out-of-town on business, if she doesn’t know that the rule CVCe applies to the word pattern characterized by a consonant, vowel, consonant, silent (or magic in some circles) e.

If you still even care at this point, because no one gave you or your third grader a magic decoder ring for this exercise, that next requires her to sort her words, (for rules she did not know when she came home from school with the worksheet) and then creatively use the words to fragment a nursery rhyme correctly using forms of the listed words, or compose an original ballad with forms of the listed words that laments the European theft of  the Native American’s land and its culture, the student must also remember to apply the untaught rule, “To add an ending to a CVCe word, you first drop the silent e. Then add the ending:  -ed or –ing.”

As such, teachers and parents often notice their students misspell very common words. The English language has different grammatical rules. Below are some spelling rules I’ve adapted to assist other Mammas as they “support their children at home.” Keep in mind that there are always exceptions to every rule.

I Before E

Perhaps the best known spelling rule is, I before E, except after C. Children have been learning this little ditty, also known as a mnemonic device, forever.  What it really means is that if I (the student or the parent) don’t know what you (the teacher) Explained to my kid at school, it can’t be supported at home.

-Able and -Ible

Knowing whether to end a word with –able or –ible is often difficult.  Basically, if the teacher fails to clarify meaningful word patterns, the student and parent often become irritable and binge on the nearest edible consumable.

The Silent E

Silent E helps vowels to say their names is another common chant. This means that the words whose ending make the vowel say their name become enemies of the home, especially homes in which students are taught to hate coercion

Walking Vowels

When two vowels go walking, the first one does the talking. This helps children remember all the times that they are asked a question and their parents hoard the conversation and answer for them.  It is rife with derision, and does not build strong relationships or essays.

Commonly Misspelled Words

  • Sieve (the immature brain container of what a child remembers was said during morning instruction)
  • Acceptable (appreciation of the differences in family’s cultures)
  • Space (to accept how individuals are uniquely and perfectly made)
  • Peace (of mind that a student can independently understand and complete homework assignments for a classroom teacher)

I did my best, it wasn’t much
I couldn’t feel, so I tried to touch
I’ve told the truth, I didn’t come to fool you
And even though
It all went wrong
I’ll stand before the Lord of Song
With nothing on my tongue but Hallelujah

Our family rotates through theme songs.  During this season, for example, The Husband and his girls are all about the Wicked soundtrack.  They drive together with the windows wide in his NYC repo Crown Vic ride like an undercover Broadway audition, belting out show tune after show tune at the top of their lungs.  Hair dances everywhere in the backseat wind tunnel, and the girls occasionally have to pick it from their teeth like unwaxed dental floss, because it’s hard to sing with such abandon without getting hair stuck in your bicuspids sometimes.

About five years ago, the song was Jesus, Take the Wheel.

About the time Carrie Underwood enjoyed her American Idol adventures, the family and I found a church.  There was something that stirred all of us about Jesus, Take the Wheel, especially The Oldest Girl and The Middle Girl.  They internalized it to the extent that they entertained family and friends with their rendition complete with choreographed movements in sync.

My beloved grandmother, Beauty, inspired their best show.  The Oldest Girl fell to her knees and sang from the bottom of her earnest, healed heart while looking directly into my Beauty’s proud, moist face.  There wasn’t a dry eye in the house.

Time goes on as it always does, and we went to another song.  And as much as we heard it and sang it then, I hadn’t thought about it in years.

Until yesterday.

We were in a car accident yesterday morning.

No one was hurt.

Everybody’s OK.

Long story short, the vehicle ahead of the car directly in front of us suddenly slammed on its breaks.  The car directly ahead of us hit his breaks, and swerved to the shoulder to avoid hitting the first car.  I had time to break and swerve to miss him, but the vehicle behind us was unable to maneuver or stop in time, and she rammed into the back of our truck.

The accident happened at 8:05 a.m., on an interstate less than three miles from our front door as I was driving my four children to school.

At the time of the accident inside the truck, the kids and I were engaged in a daily routine.  We were praying together.

After the initial slam of impact and making certain everyone was uninjured, The Oldest Girl observed, “Mamma, we were praying.”

It wasn’t until later in the day, after the logistics of getting the kids to school in another vehicle, (Papa’s car, and they probably belted Wicked all the way to their schools) the accident report, insurance procedures, etc. that I thought about Jesus, Take the Wheel, again.

It was actually The  Mamma In-Law who brought it to mind.  As always, she held me over the phone lines as I shared my account of the experience, and after making certainly certain her beloved grandbabies were well, she ministered to my stress.

No one was hurt.

Everybody was OK, but it was the first time I experienced a close call with my children.  I realized what could have happened, and am deeply humbled to realize that The Husband could have gotten a very different kind of phone call.

I remember how cold I felt when The Oldest Girl was sick and I was stripped of my Maternal Coat.  I thought I’d been shocked beyond surprise by the reality that reality interrupts my life.  However, the impact of the reality that I could lose all of them at once dries up all the spit in my mouth.

I had actual cotton mouth when I admitted to The Mamma In-Law the very idea was freaking me out more than a little.

It was then she reminded me about Jesus, Takes the Wheel.  The Mamma In-Law opined, “You say you were praying at the time?  Do you remember how those girls used to sing that song?  I can just imagine them throwing up their arms in the backseat, screaming, “Jesus Take the Wheel!”, and that’s pretty much what happened, right?  Jesus took the wheel and bounced that Chevrolet right off your ass, didn’t He?”

And “What could have happened…” is about as insidious a Spiritual and Mental Health trap as “What I should have done…” is an Hallelujah breaker.

I had to laugh.  That’s precisely what happened.  Jesus pretty much took the wheel and bounced that Chevrolet right off my ass.

Thank you, Jesus!

I’ll stand before the Lord of Song
With nothing on my tongue but Hallelujah!

Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah!

As The Mom (The Mom, The Mom) sings so well, we Mammas spend a large portion of our bandwidth repeating broadcasts our children didn’t want to hear the first time.

What she didn’t tell us, and I’m certain only because her two minute and fifty-five second time limit had elapsed, is that there is a little discussed syndrome that affects us Moms, especially those of us with selectively deaf children…

Maternal tunnel syndrome

Symptoms
Treatment
Causes
Tests & Diagnosis
Prognosis
Prevention
Complications
When to contact a doctor

Overview

Maternal tunnel syndrome is a painful disorder caused by compression of a nerve in the maternal psyche tunnel from repetitive (needless, and mind-numbing) instructions, reminders, and commands to children over time.  Maternal tunnel syndrome is pressure on the mamma nerve, a nerve in the maternal psyche tunnel that supplies rationality, feeling and movement to parts of the speech center and  heart. It can lead to numbness of lips and tongue, sore throat, dry mouth and/or excess saliva, hypertension, and premature wrinkles in the face and neck.

See also: Maternal tunnel release

  • Numbness or tingling of one or both lips
  • Numbness or tingling tongue
  • Pain extending to the pysche
  • Pain in throat
  • Problems with fine motor communication skills (coordination) with adults
  • Wasting away of the hope muscle (in advanced or long-term cases)
  • Weak grip on what battle is worth fighting or difficulty completing a phone conversation without interruption (a common complaint)
  • Weakness in patience, self-control, sense of humor and perspective

You may try wearing an attitude splint at night for several weeks. If this does not help, you may need to try wearing the splint during the day. Avoid sleeping on your face. Hot and cold compresses may also be recommended.

There are many changes you can make in the home to reduce the stress on your maternal pysche:

  • Special devices include voice activated toothbrushes, talking-countdown alarm clocks, toxic fume alarms for athletic bags, pre-recorded reminder voice chips for hampers, bedroom drawers, litter boxes, musical intrustments, lunch boxes, homework planners, backbacks, etc.
  • Someone should review the position you are in when performing your home activities. For example, make sure that eye contact is level with the child and not bent upward while lecturing. Your doctor may suggest an occupational therapist (to insure you have not gone clinically insane and that the children’s selective deafness does not have an organic/medical cause).
  • You may also need to make changes in your home duties or recreational activities. Some of the jobs associated with maternal tunnel syndrome include those that involve correcting children and vibrating disobedience. Maternal tunnel syndrome has also been linked to teachers, nannies, coaches and children’s pastors.

MEDICATIONS

Medications used in the treatment of maternal tunnel syndrome include nonsteroidal ethanol such as found in Shiraz and Vodka.  Prayer massage over the marternal tunnel area, may relieve symptoms for a period of time.  In severe cases, spa treatments may be indicated, and include, pedicures, facials, deep muscle massage and Date Night.  Excess shopping therapy should be avoided, and leads only to complications of the illness cycle and lack of financial peace.

SURGERY

Maternal tunnel release is a surgical procedure that cuts into the identity that is pressing on the nerve. Surgery is successful most of the time, but it links with the Witness Protection program, and is viable only to patients willing to abandon the home in order to reduce long term nerve compression and its severity.  Treatment is a final option.  Psychological and medical assessments are required before a surgeon grants reconstruction.  Procedure is irreversabile, and as such, there are few documented cases.

See also: Maternal tunnel release

The maternal nerve provides feeling and movement to the “what I do every day matters” area of the psyche (the confidence, resilience, certainty, perspective, and this-too-shall-pass-and-then-you’ll-actually-miss it) sides.

The area in your psyche where the nerve enters the vision is called the maternal tunnel. This tunnel is normally narrow, so any swelling can pinch the nerve and cause pain, numbness, tingling or weakness. This is called maternal tunnel syndrome.

Maternal tunnel syndrome is common in people who perform repetitive molding of children and youth. Speaking to minors on a regular basis is probably the most common cause of maternal tunnel. Other causes include:

  • Excessive Swearing and/or cussing (in burst of frustration, anger, or anxiety)
  • Directing
  • Assembly line craft tables at volunteer art booths or potluck dinners
  • Pestering
  • Wringing of hands
  • Use of reminders (especially daily task reminders like empty your lunch box, brush your teeth, inside voice, etc)
  • Any transportation task that requires you to drive multiple children to different venues at the same time
  • Sports such as Time Out, You’re Grounded, and No Cell Phone
  • Playing the What-If Game with The Husband in bed at night, instead of Grab & Tickle once the kids are finally in bed

The condition occurs most often in people 30 to 60 years old, and is more common in women than men.

A number of medical problems are associated with maternal tunnel syndrome, including:

  • Stroke
  • Diabetes
  • Alcoholism
  • High blood pressure
  • Hypothyroidism
  • Kidney failure and dialysis
  • Menopause, premenstrual syndrome (PMS), and sterilization
  • Infections
  • Obesity
  • Rheumatoid arthritis, systemic lupus erythematosus (SLE), and scleroderma

During a physical examination, the doctor may find:

  • Numbness in the tongue, lip, throat, larnex, index (pointing) finger, and attitude
  • Weak perspective grip
  • Tapping of the Overwhelmed region may cause pain to shoot from the psyche to the heart (this is called Mamal’s sign)
  • Bending the Family Calendar all the way for 60 seconds will usually result in numbness, tingling, or weakness (this is called Denial’s test)

Tests may include:

  • Electromyography
  • Nerve conduction velocity
  • Skull x-rays should be done to rule out other problems (such as I’ve actually lost my mind).

Symptoms often improve with treatment, but more than 50% of cases eventually require Girls Night Out Therapy.  Successful healing can require a regular regimine of fun outside the home.  Surgery is not recommended.

Avoid or reduce the number of repetitive corrections whenever possible. Use tools and equipment that are properly designed to reduce the risk of injury.

Ergonomic aids, such as talking toothbrushes, stink alarms, reminder software, and attitude braces may be used to improve psychic posture during parenting. Take frequent breaks when lecturing and always stop if there is tingling or pain.

If the condition is treated properly, there are usually no complications. If untreated, the nerve can be damaged, causing permanent weakness, numbness, and tingling.

When to contact a BFF

Call for an appointment with your BFF if:

  • You have symptoms of maternal tunnel syndrome
  • Your symptoms do not respond to regular treatment, such as rest and anti-attitude medications, or if there seems to be a loss of joy in your daily routine

In all seriousness, call for an appointment with your doctor if:

You have symptoms of depression, or any active imaginings/plan to hurt your children, yourself or others.

The thing that is NOT funny about this spoof, is that being a Mamma really can be so stressful that it may be literally dangerous to your health and the welfare of others.

I did my best, it wasn’t much
I couldn’t feel, so I tried to touch
I’ve told the truth, I didn’t come to fool you
And even though
It all went wrong
I’ll stand before the Lord of Song
With nothing on my tongue but Hallelujah!

I give myself a big D- as a Mamma today.

The only reason I don’t Flag myself, is that I still care enough that I failed my sweet and only boy so completely.

The Boy.

Ah, me.  He hurts me.

It’s not his fault.  He’s 12, and it is his job to be every inch the almost indecipherable teenager he is and will become.

Prior to writing this post, I checked out some other blogs on the topic.  I am in good company.

It amazes, but does not comfort me, how many of us had our own Hallelujahs broke at his age and never healed.

Like me, lots of fine voices raise the F word to identify the party that broke us.

The voice.

Or the face.

Or the name.

Or the penis.

Or the betrayal.

Or the hurt that is still such a nemesis that it breaks our own Mammahoods we desperately seek to do sooooooooooo, oh so much better than was done for us.

As for me, that hurt is still where much of the anger lives, I know when I was first broke.  I needed no ritual ceremony to uphold the bloody sheets.

I understand.  I so understand my limits and lids.  I know my triggers ad nauseam.  Frankly, they are not all that interesting.

I know my hurts, and which parent I blame for what like some freaked out list of grievances from Rainman.   Like the scar I got sliding into home when I was in the third grade, it’s all very familiar without inviting movement or healing.

The thing is, it doesn’t matter anymore.

My scars might now scar The Boy.

And if I don’t stop blaming, and beg God for the healing only He has to offer, all I’ll do is play the obscene forward.

And if I don’t stop, when The Boy sits on his therapist’s couch when he’s 19, or 21 or 35, and asserts, “It’s all my mamma’s fault,” then he will be right.

Because the statute of limitations on parental wars crimes done to me is up.

If I don’t find Power through God to FORGIVE and to change my responses, I will do to them, every inch of what was done to me and more.

‘Cause I know what was done to me.

I already paid for that.

I don’t want mine to pay too.

I did my best, it wasn’t much
I couldn’t feel, so I tried to touch
I’ve told the truth, I didn’t come to fool you
And even though
It all went wrong
I’ll stand before the Lord of Song
With nothing on my tongue but Hallelujah!

Lions and tigers and bears?

No…

Medical students, interns, and residents, oh my!

What in the glory is a Fellow (and should I allow her to treat my daughter) and where in the hell is the Attending, anyway?

(See Maternal CoatI Was The Mamma to read more about why these questions became so important to my family in the care of The Oldest Girl.)

Medical students are persons still attending medical school who have yet to earn their Medical Degrees.  In their third year of a four-year program, medical students rotate through the different medical services of the hospital to learn the rudiments of case management and to become familiar with the different areas of medicine so that they can choose their specialization.  Much like a simulation model, medical students are on the floors to get an idea of patient care and to practice writing orders, but they are not directly responsible for patient care. After graduation from medical school, doctors earn their M.D.s, elect their area of specialization and enter a three-year residency program.  The first year of this program is called the intern year.  Interns are primarily responsible for patient care.  During the second and third year of residency, doctors are referred to as residents and follow patient care while being directly responsible for the supervision of interns.  After completion of their residency programs, most doctors begin to practice in their field, like pediatrics, gynecology, or family medicine.  Others decide to pursue advanced training in an area of specialization like pediatric cardiology. Referred to as fellows, these physicians enter a three-year educational program.  Fellows oversee patient care and resident training while developing their expertise in a medical specialty.  Attendings are the doctors at the top of the hospital medical caste system.  They are ultimately responsible for the care a patient receives and directly supervise the residents.  Attendings are not only teachers in this capacity, many also hold teaching posts in the medical school associated with their hospital.  Although the nuances of this medical training hierarchy makes for good television, it also increases the volume of people and amount of repetition and stress with which a family or patient must tolerate.  It took over two days for me to learn the answer to the question I had asked myself during The Oldest Girl’s test. How many cardiologists does it takes to read an echo?  It takes only one, maybe two if s/he calls for a collegial consult as was done in The Oldest Girl’s case.  Not only were all the other doctors who were in the room not cardiologists, they were there as much for their own training as my daughter’s care.

This answer demanded that I ask more questions.  The Oldest Girl had lain on her back crying for hours during the echocardiogram.  Her screams of protest echoed cannon-like in my head.  The number of people in the room did not necessarily increase her discomfort, but it did raise my own.  I felt like a carnival sideshow.  A phantom carney’s voice mocked me, “Step right up Ladies and Gentlemen.  See the world’s most incompetent mom’s inability to comfort her daughter in her hour of need.  Witness her desperate attempts to quiet her with her breasts.  Listen to her voice crack as she tries to sing consolation.  See her doctors’ frustration as they wrestle a tough diagnosis.  Watch the dramatic events unfold as they happen.  It’s all included in the price of tuition.”  Our privacy had not been invaded in the traditional sense.  Nosey neighbors had not peered through the slats of their venetian blinds to catch a moment of impropriety.  It was instead an intrusion of one system upon another, in this case the hospital machinery upon the already strained dynamic of my family.  Again a sense of double reality distorted my attention.  On one hand, The Oldest Girl’s doctors needed me calm and focused.  I was their best conduit of information about her condition, its onset and its progression.  I was the keeper of her history, the only one who could report the events they needed to hear.  On the other hand, the teaching hospital’s system and multiple layers of caregivers taxed my composure and distracted me.  I knew I had to organize a plan to secure as much of my strength and energy as could be safeguarded.  This made me keenly aware that I had to actively investigate my rights to secure my role as a member of The Oldest Girl’s team of caregivers.  I needed a plan to guarantee that only the best, most qualified doctors provided her care, regardless of the medical training hierarchy.  And I had a deadline.  The Oldest Girl was scheduled for a heart cath and possible surgery.  Oldest Girl was fighting for her life.

My fight was to honor hers through the creation of the best possible circumstance I could organize.  The similarity of how I observed the teaching hospital faculty treat family members reminded me of the public school system dynamic I was a participant of, and made me respectful of how carefully I needed to proceed.  I did not want The Oldest Girl to be labeled as the patient with “a problem mom.”  I needed to conduct myself in a professional manner to get what I wanted.  I noticed a direct relationship between the quality and amount of information that was shared with me and the staff’s perception of my wellness.  They talked to me differently based on how tired I looked, whether or not I had showered, how emotional I was and whether or not I was alone.  Given this variance, one of the first things I did was to request to read The Oldest Girl’s medical and floor charts to insure not only that I had access to all information related to her care, but also to check my retention and comprehension of it.  The right to review medical charts is one of the patient/parental rights in fine print, my experience suggested that it is not a popular request.  I was given access to The Oldest Girl’s chart, but with resistance, I had to push to assert my legal right, and even then could only view it with a hospital staff member present.  Reading the chart was an extremely validating experience for me.  Because I was so emotionally engaged in the situation, I had predicted that there were things that I had not heard or understood about The Oldest Girl’s condition.  I was relieved to find that this was not the case upon reading the chart, which helped me feel more focused, and in control.  It helped reinforce my understanding of The Oldest Girl’s medical needs, which were her primary care providers and what the plan for her treatment was.

The redundancy of the chart bolstered my unease with the medical training system practiced in the teaching hospital culture.  It seemed backwards logic to me that the interns with the least experience were directly in charge of daily patient care, while the attendings assumed more of a management role.  I wanted The Oldest Girl’s attending intimately involved with her treatment.  The next step of advocacy I took was to request that only those primary care providers interact with The Oldest Girl and our family.  The caveat, “that’s just one of the things you have to put up with at a teaching hospital,” is not wholly accurate.  Medical students, interns, and residents cannot participate in patient care without consent.  Parents can designate their child’s case a non-teaching one, even in a teaching hospital.  This step reduced the volume of people we needed to interact with on a daily basis and helped to lessen the sense that The Oldest Girl’s room was a high traffic area during rush hour.

I spoke at length with The Oldest Girl’s cardiologist about this as we reviewed the details of her upcoming heart catherization.  He explained that although it was not routine, the team had decided that The Oldest Girl should be intubated during the procedure because of the “unknown” status of her airway.  Intubation is the process of inserting a breathing tube down a patient’s throat so that breathing can be controlled by a ventilator.   The respiratory symptoms that had initially brought us to the hospital had become more severe.  At that time, we did not know if this was due to heart failure, an airway collapse, or both.  Because of this uncertainty, her cardiology team wanted to make certain that her airway was controlled in case of an emergency.  Her cardiology attending told us that if it was determined that The Oldest Girl needed surgery that she would remain intubated until after the surgical repair.  We asked who would be performing the heart cath, intubation and surgery and, were assured that only the best would be doing those jobs.

I did my best, it wasn’t much
I couldn’t feel, so I tried to touch
I’ve told the truth, I didn’t come to fool you
And even though
It all went wrong
I’ll stand before the Lord of Song
With nothing on my tongue but Hallelujah!

I had a title and a job description.  I was The Mamma. (See Maternal Coat for backstory.)

This realization goaded my Midwestern work ethic just about the time another doctor entered the room to join the troupe already assembled.  I was offering The Oldest Girl the comfort of the breast again when the new M.D. positioned herself directly behind me, so that she could get a better view of the already crowded monitor.  Frustration tensed my neck as I finally began to wonder how many cardiologists it takes to read an echo.  The night before when doctors lined up with their stethoscopes three and four deep to listen to The Oldest Girl’s breathing, I was impressed by the volume of care she received.   A shift had occurred since then, however, and the same level of attention felt redundant, oppressive and even voyeuristic in this context.  The stress of feeling like a goalie in a soccer game was more pressure than my already challenged milk supply could withstand. My doppelganger turned to her and said, “Who are you?”

“Dr. Another One,” she confidently replied.

“Do you have to be here?” my doppelganger asked.

“She’s a member of our team,” the eldest, female consultant intervened authoritatively.

“Is she a vital member of the team?” my otherself surprised me by asking.

“I can leave,” Dr. Another One offered.

“Thank you,” my twin replied signaling her dismissal.

“But…” the elder discouraged as her pledge left the room.  Disapproval veiled her face as she muttered something else I couldn’t hear.  An awkward pause perpetuated the veneer of her objection before her attention returned to The Oldest Girl and the answers the echocardiogram screen would provide.

Those answers were not as concrete as anyone would have liked.  The cardiac team was able to determine that it was probable that The Oldest Girl had a heart defect called coarctation of the aorta.   She did not have palpable femoral pulses, and the pictures suggested an obstruction.  One of the cardiologists drew us a diagram as he explained the condition.  He used his pen to punctuate points as he made them to educate us about a coarch (“co-arc”); a narrowing of the aorta that restricts or limits the blood flow to the lower extremities.  He outlined the surgical repair that would be required if this diagnosis was confirmed.  He assured us that the surgery was one that boasted a high survival rate, but it was premature to assume that it would be necessary until an angiogram or heart catheter verified the diagnosis.  The prospect of a heart condition and likely surgery eviscerated the remnants of denial I held about the gravity of the situation.  He then asked us what questions we had.  We asked many.  Among them, I asked if we could control the number of people in the room during procedures.  Disapproval brushed his face as he asserted that one of the frustrations of being associated with a teaching hospital was putting up with those physicians who were in training.  He indirectly judged my dismissal of Dr. Another One as inappropriate.  He argued that inconveniences such as having many people in the room were a part of the package that was balanced by the exceptional facility and treatment options.  However cordial his language, his message was not subtle, he advised me not to tamper with the status quo.

His dictate to play nice really resonates with me.  My entire upbringing socialized me to be nice.  My earliest training reinforced the message my daughter’s cardiologist had just delivered.  These memories include lessons about manners, praise for cooperation and practice following the rules.  I grew up without outgrowing my eagerness to please my parents and teachers and friends.  Marry this conditioning with society’s reverence for doctors, and I felt it was incumbent of me to be good.  He had, after all, just reminded me to be a good girl.  I felt the pull to be obedient and quiet.  Liquid tractability intoxicates.  Unfortunately, it does not inform or guarantee quality care.  However traumatized I felt by my daughter’s illness, no matter how compelling the temptation to follow orders, I knew it did not feel appropriate to subject myself and my family to more stress than necessary, even if doing so did provide excellent opportunities for the professional development of others.  I had just been told my daughter was a candidate for heart surgery and simultaneously counseled to be a good sport.  I not only didn’t want to play; I knew that I could not simultaneously participate and do my most important job.  My already depleted resources could only be invested into being The Oldest Girl’s mom and advocate even if it didn’t feel comfortable, I wasn’t going to blindly follow guidelines that I did not believe to be in the best interest of her care or my family.

The slippery thing about hospital guidelines was to become educated about which were necessary regulations and which were rules of convenience.  Unfortunately, I knew as little about this as I did about heart disease at the time.  One benefit of my eager-to-please nature is that I learned how to be a good student.  Like an anthropologist, I had to study the foreign culture and mores of this hospital civilization in order to understand our experience and make informed decisions.  Like a native tour guide, my first source of information was our floor nurse.  Much like the teachers of a high school, nurses run the hospital and offer the best chance for a continuity of care.  The doctor administers as little of the day-to-day care to his patients as the typical principal provides daily instruction to students.  I discovered there were many familiar parallels between teaching and nursing, a realization that helped me acclimate to my new environment.  Our nurse explained the hierarchy of a teaching hospital.  One of the most ambiguous aspects of The Oldest Girl’s initial treatment was trying to determine who was who in the myriad of medical players that we encountered.  Much like a caste system, she explained the progression from medical students to attendings.

Lions and tigers and bears?

No…

Medical students, interns, and residents, oh my!

And The Mamma better know which is which and who does what!

I’ll stand before the Lord of Song
With nothing on my tongue but Hallelujah

I’ve taken a wee hiatus from the blog thing this week in order to get our family’s Back-to-School legs under us.  Much like motion sickness, we all cycled through our own versions of green under the gills and wobbly knees.

I also carved out some time to read some other blogs.   A Pandora’s Box of an experience, authenticity splatter paints site after site with open process and genuine welcome.  There’s a sacred chord common among them too.   The minor falls aren’t always that minor, but openly and honestly explain.  In many cases, I felt as if the blogger was talking directly to me, like we were sharing a bottle of Shiraz, and she really wanted me to understand.   The major lifts mold hope like clay on the wheel.   I read about what broke the hallelujahs of others, and was stirred by the movement of those fierce hearts.  They write to understand; they write to keep breathing; they write to help us all make sense of life’s density and experience.

Aunt Becky has such a site.  She wasn’t always Aunt Becky, but she will tell you about that when you visit her there.  When you go, carry my admiration and my prayers with you like fireflies  sparkle the night, with gentle whispers to lift her and to craft her Princess of the Bells a new tiara of light.

Reading about Aunt Becky’s journey brings The Oldest Girl to mind.  I now wear a new coat. The Oldest Girl’s illness changed my identity. The story went something like this:

I’m naked and I’m cold.  My infant daughter’s emergency heart surgery and subsequent hospital admission has stripped me of my maternal coat.  You know the one.  That warm, cozy fleece with all the comforts of flannel designed by Denial.  The one I curled up with at night to keep me safe so I could sleep secure in the belief that my family was protected.  The one I held open to catch my two-year-old son’s running giggle dives.  The arms cocooned my pink and wrinkled newborn daughter.  Its deep pockets held Kleenex, Goldfish, and Pokemon Band-Aids, all the medicine I thought I’d ever need to heal hurts.  The hood shielded me from the evening news like a solemn promise that mine would never be the statistical anomaly whose strange lump turned out to be cancer or who walked in the wrong McDonalds at the wrong time, and fell victim to unspeakable violence.  I miss that coat more than the cigarettes, caffeine, vodka, Pop-Tarts, profanity, bad men and other vices women give up to become mothers.  It’s cold out here.  My world feels bigger and more scary now.  I no longer enjoy the luxury of the Denial label.  The Oldest Girl is the one who almost died and, I will never be the same.  My daughter is the one in 12,000 born with a congenital heart defect.

The term heart defect has only two words.  The first, an adjective, conjures the undeniably positive connotations of love carved into the side of a proud oak, a child’s sloppily pasted Valentine’s Day card, Mother Theresa-like character and the center of debate.  It’s the noun that fires the phrase with sinister associations of betrayal, pyromania, Adolph Hitler and dysfunction.  The two words together describe a disease I never thought would be used to characterize my daughter’s cardiac condition.  I knew The Oldest Girl breathed differently than other babies. She snored, hummed and whistled from birth.  My family joked that she snored like an old man after a long poker game and too many cigars.  I teased too, as we had the pediatrician’s assurance that periodic breathing was normal in infants, and that some babies simply breathe more loudly than others.  We all slowly became accustomed to her respiratory percussion, and I repressed my SIDS fears like a movie trailer, a scary feature I would not pay money to keep me up nights.  On the Monday of her one-month well-baby visit, however, neither her pediatrician nor I liked the way she sounded.  Three days later, we were in the Emergency Room of the University teaching hospital.

The Husband and I walked our five-week-old daughter into the trauma center with unspoken confidence even though we were at parental DEFCON-4.  Though neither of us said so to the other, each of us held the same conviction.  This trip was merely a scary formality to confirm The Oldest Girl was completely fine.  We knew it was a good hospital.  The banner that touted, “Voted A Top-100 Hospital,” on their pedestrian walk-way proudly confirmed our conviction.  The Husband, a firm believer in the religion of modern technology, held my hand as I snuggled The Oldest Girl close to my chest.  The triage process was simply tedious, not painful.  The staff we interacted with seemed as interested in our insurance information as they did our daughter’s condition.  Nothing in their manner suggested The Oldest Girl’s condition was critical.  The physician who initially examined her seconded our pediatrician’s tentative diagnosis of tracheal malacia.  This doctor explained that the strider, or noisy breathing, The Oldest Girl experienced might be caused by an under developed trachea that was more soft or “floppy” than its cartilage should be.  We were assured that if this was the case, it was a grow-out, developmental condition. She ordered a chest x-ray and explained that The Oldest Girl would be placed on a monitor and admitted for the night for observation and further evaluation the next day.  We accompanied Oldest Girl to radiology with a sense of relief.  Experts and the best equipment possible were put in place to help us monitor her breathing.  If the worst happened, if she in fact stopped breathing, help would be immediate.  Even the doctor’s report that the x-ray showed that she had an enlarged heart, and that a pediatric cardiologist would consult on her case did not daunt our blithe expectation that we would be going home the next day.

The cardiologist who entered our room the next morning seemed to share this expectation.  As he wheeled in the machine to administer The Oldest Girl’s echocardiogram, he promised that we could rule out that she had any cardiac issues in ten minutes.  Forty anxious minutes later, during which I futilely sang to comfort my daughter in an attempt to quiet her screaming discomfort and outraged frustration, the cardiologist said he had to call in one of his colleagues to consult on The Oldest Girl’s case.  I’ve seen too many reruns of ER and Chicago Hope to miss the implications.  It was then that I began to split like an ameba during cell division.  I was in the middle of at least two experiences.  First and foremost, there was the numbing reality of Oldest Girl’s condition.  Secondly, there was the distracting interface of being immersed into a hospital culture with which I had little knowledge.

This sense of doubling only increased when the consult entered the room.  The next three hours were a blur of my attempts to console Oldest Girl while the pediatric cardiology team assessed her condition.  At no one time was there fewer than three doctors in the room. All the while, Oldest Girl screamed and screamed and screamed.  She was tired and anxious, in a strange environment, and did not want to lie on her back, her least favorite position, one more minute dammit to hell.   All the while, the doctors surrounded the monitor and spoke their code to each other, “I can’t see.”

“I can’t get it,”

“If she would just,”

“There it is,”

“Coarch?”

“Did you feel femoral pulses?”

“Her color isn’t good, she’s grayish.”

“Look.”

“See?”

“What if her duct just closed yesterday?”

Meanwhile, I serenaded Oldest Girl, I climbed into the crib and curled her into my side, I breast fed her, I held her in almost every conceivable position, including one that was almost upside down and I attempted to sooth her with my mama words and voice. We were told that her response to the test was not a good match with the team needs.  In order to get a good reading, Oldest Girl had to be calm and relatively still.  Frustration began to wear on everyone in the room, an occupancy that grew to an alarming six-doctor level at one count.

The sheer volume of white coats in the room heightened my anxiety as much as the test itself. The simultaneity of demands for my attention danced in kaleidoscope neon.  I was dizzy with their patterns:  The Oldest Girl’s needs, my own foreboding fear, and the mysterious medical vernacular that decoded her prognosis.  I was as saturated as a diaper in a kiddy wading pool, but these waters were deep and the undertow menaced.  It was a startling moment of maternal epiphany.  As inadequate as I felt, as viscerally engaged as I was in my experience of The Oldest Girl’s illness, I was the only mother in the room and Oldest Girl needed me.  This infused me with a sense of purpose.  I had a title and a job description.  I was The Mamma.

And even though
It all went wrong
I’ll stand before the Lord of Song
With nothing on my tongue but Hallelujah!