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Parent Advocate

Posted by jael on Oct 20, 2010 in Education, Parenting, Spiritual Journey

Please.

Please, please.

Please, God.

Oh, God!  Please!

(Read Maternal Coat to find out why I’m praying.)

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

The efficacy of this treatment plan would soon be tested, as the results of The Oldest Girl’s heart cath were not good.  When the cardiologist returned to our room, he confirmed that she did have coarctation of the aorta, and that surgery would be required.  He explained that her blockage was so severe that the red blood cells were literally lining up one at a time to pass through it.  Because of the severity of her condition, he told us that emergency surgery would have to be performed that night.  Even though the events of the preceding days had prepared me for this eventuality, the impact of his announcement hit me like a hard punch in the solar plexus.  It took me to the mat and simultaneously stripped me of my title as The Oldest Girl’s primary care giver as swiftly as it demoted me to a helpless bystander.  There was nothing I could do for her.  I could not protect her from this, I could not take her place, and I couldn’t even stand by her side as she went through it.  The resident who consented us for her surgery was painfully clear, anything could happen and there were no guarantees.  The walk with The Oldest Girl down to the OR was the longest mile I have ever traveled.  At its end, I had to pass The Oldest Girl off like a baton to a stranger in surgical scrubs.

I don’t remember a lot about what I did while we waited.  I know I prayed, paced, yelled at my husband at least once, and frantically cleaned the room we had to depart in our transfer to Pediatric Intensive Care.  Each moment that passed further eroded my calm like acid rain.  My breasts ached and leaked, spilling their tears of grief for our absent girl.

Tears of relief were the next shed when The Oldest Girl’s cardiologist returned to our room to inform us that her surgery was a success and that she had come through it strong.  The next fragile 24 hours would determine if her victory remained unchallenged by complications.  The Oldest Girl never looked more frail or beautiful to me than she did when I was finally reunited with her in PICU.  She looked as vulnerable as a sparrow lost in the rain.  Tubes instead of raindrops fell from almost every part of her.  Her full head of dark brown hair was her only unmolested spot.  It had been freshly washed.  I could still smell the sweet scent of the Baby Phisoderm.  I gratefully drank in that healthy, familiar smell as I stroked her clean hair, and kissed her with my mama’s voice to assure her I was by her side once more.

I have joyfully remained at that same post since that day.  The most bitter of cups has passed; The Oldest Girl has recovered.  Hallelujah!  The experience stripped me of my rank as well as the regulation maternal coat issued to each mother after delivery of the placenta.  I am a civilian lost in a world without order.  Children die of cancer in this land. McDonalds playlands become killing fields and my daughter may need additional surgical intervention if her repair does not grow with her.  I have to learn how to accept these atrocities and still get myself and my family out of bed each morning.  I have to gracefully balance this reality with the Cheerios, apple juice, Gogurt and graham crackers that I serve them every day.  It’s my job.  I am The Mama and I have work to do.

Mama is my elegant and simple title.  What I did not learn during two natural childbirths where I crowned two perfect heads and delivered two babies of rainbow-dimming beauty, I learned through my daughter’s experience at a teaching hospital.  It was her salvation and my watershed.  No matter how much of a little girl I still sometimes feel, I am a mother now.  I imagine every mother must have her own moment of maternal epiphany when she realizes in startling Technicolor how her life has been transformed by becoming a mother.  For some moms it’s the first time their child raises her arms to initiate a hug.  For others, it’s when she screams, “Push higher, Mommy!” from a swing at the park.  A fortunate few experience it from the first moment their newborn paints their stomachs with birth gunk.  For me, it was when I dismissed a doctor from my daughter’s hospital room.  That order was not issued from my evil twin as I first had suspected.  She was not my doppelganger; she was The Mama in me, my best self.

That was the moment I learned that no matter how many other people were in the room trying to help The Oldest Girl, I was her mother.  I learned that parental advocacy is essential in a teaching hospital whose dual purpose is to treat and to educate.  This is not a Dateline exclusive report.  The Oldest Girl’s hospitalization was a success.  We are the fortunate beneficiaries of doctors of exceptional skill and dedication.  The very doctors that saved her received their training in teaching hospitals similar to the one in which she was admitted.  Her rescue and recovery endorse the merit of that training.  I am grateful for it.  I am also aware, however, that its momentum was more than I was comfortable with at times.  Clinically speaking, The Oldest Girl’s case had a positive outcome, but there were glitches.  At least two of these were significant enough to have had serious implications.  In both of these instances, I would not have known to intervene had I not actively followed her care.  I learned that important information is contained in a child’s medical chart that may not be directly shared with parents.  Parents should know they have the choice to read it.  I learned that attendings are not necessarily the ones who perform treatment procedures, including surgery.  Interns and residents are trained how to perform them on patients under the supervision of attendings unless otherwise restricted by a patient or family.  Parents need to decide if they are willing to have someone practice on their children.  I was not.  I learned that a family medical treatment plan is necessary to insure a family’s wishes are honored in the event the family member cannot be present.  Parents can contact hospital patient representatives to get information about how to create such plans for their children.  I learned that a serious hospitalization of a small child is a stress without a comparable metaphor.  Everything about the experience robs parents of control.  It also thrusts them into a strange culture without a map.  I learned that there are advocacy steps a parent can take to mitigate some of the daily pressures of the teaching hospital world and help to guide their journey.  Experience taught me that taking them was not only worth the risk, but rich with reward.  I actively helped The Oldest Girl recover.  I’m The Mama who brought our “Ladybug” home.

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

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