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Centrepiece Online | Fall 2009
Endpiece: CP and Other Acronyms
by Jenny Gower Lemker '99
"She has CP. And CVI." I say to strangers who notice and comment on the striking difference between my genetically identical twins. CP. Cerebral Palsy. CVI. Cortical Visual Impairment. Benign acronyms that in no way convey the journey, heartache, and triumph that led to these diagnoses, this simple way to explain away all that is different about my Katie.
There are other, less common acronyms. I learned we were expecting twins at my 20-week US (ultrasound) when my husband Erich (an MD) and the US tech simultaneously exclaimed, “there are two in there!” XX. Girls. MZ. Monozygotic. A marked size discordance. TTTS. Twin to Twin Transfusion Syndrome.
Weeks of bed rest melted into a deceptively easy delivery followed by Katie’s sudden medical deterioration and transfer to the NICU with a pH of 6.67, a level of acidotic shock considered non-survivable in adults. Pressors. IVs. PIC lines. PDA ligation. Catheters. Seizures. Renal Failure. Anoxia. Ninety percent probability of death.
Survival. My sick little Katie-bug just wouldn’t die.
Months later in a haze of EI (early intervention)—PT, OT, ST, Vision Therapy—breastfeeding x 2, and sleep deprivation, I found myself contemplating a lecture by Dr. Milton Riegelman during my semester in Strasbourg on The Myth of Sisyphus by Albert Camus. How I relate to this “futile laborer of the underworld!” Day after day, I, too, feel as though I am “ceaselessly rolling a rock to the top of a mountain whence the stone would fall back of its own weight.”
I push my boulder, my Katie, through long difficult feedings, through therapy sessions, through sleep cycles disrupted by sensory dysfunction. Each day I invest miles of effort only to see millimeters of progress. Each morning I wake up and begin the cycle anew. The anxiety weighs heavily—am I doing enough? Are Katie’s sisters getting the attention they need to thrive? My husband? I set aside the heaviest angst of all: Is this worth it? Does it matter?
Lest you begin to feel sorry for me, I should be quick to point out that Camus’ Sisyphus defied the futility of his labor with joy. Do not pity me. Envy me.
At night, as the blissful near-silence of three sleeping daughters, the whir of the dishwasher, and the sounds of my husband pouring a glass of wine envelop me, I reflect not on the tragic reality of a daughter who may never walk or talk, but on a life enriched. Visions of my three perfectly imperfect daughters bring a smile to my face. Their unique relationships with one another, while vastly different from the quintessential identical twin bond I originally envisioned, are a delight to behold. Katie’s sisters love her desperately. Their tenderness with her bears foreshadowing, I believe, of compassionate adulthoods. This, too, makes me smile.
I stand in awe and gratitude especially before the tremendous friendships ushered into my life as a direct result of Katie’s difficulties. I would, and will, walk to the ends of the earth in hopes of
giving my disabled daughter a “regular” life. If I could, however, go back and change her rough beginning, would I? I’m a little glad I don’t have to face that choice.
My husband and his glass of wine join me and my musings in the living room. I share with my husband our three-year-old Lilly’s newly professed mermaid aspirations, and the obsession of Katie’s twin, Penelope, with relocating the remote control and wireless mouse to the washing machine. We laugh together at our developmentally “typical” daughters’ delicious ridiculousness, and recall Katie’s precious giggling laughter, which fills the deepest core of my heart with joy.
I stand before my mountain, behind Katie in her wheelchair, my husband and healthy daughters by my side, and I feel momentarily fulfilled. “The struggle itself toward the heights is enough to fill a man’s heart. One must imagine Sisyphus happy.”
CP.
CVI.
LOL.
The Centrepiece regrets to report that Katie died at home, in her sleep, in September, as the issue was going to press.
Jenny Gowen Lemker ’99 is a full-time mom in Fresno, Calif. When not changing diapers, she can be found presiding over the local twins club or summiting literal mountains with her husband, Erich, and daughters in nearby Yosemite.
Centrepiece
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