Between Two Worlds

Much like a comic book heroine, these days I operate in two different worlds with two distinct identities.

In the first frame, I’m much like many other working moms you know: juggling the hectic schedule of an active eight-year old with demanding clients, deadlines, conference calls and meetings. Some days, the circus culminates in a semi-comic frenzy of small details suddenly remembered, mishaps narrowly avoided, the denouement a later-than-preferred bedtime, 9:03, not nearly 8:30, a sigh of regret but then another acknowledging all of the balls not dropped, relishing the sweet goodnight of a content child. A good day. Others are more calamitous: the client who needs curbing; the child who needs deprogramming; the dinner not yet thought about, much less made; the bag for 6am trip tomorrow not yet packed (and it’s 10pm); the e-mails requiring answers filling up my in box. Not enough hours in the day, and not enough energy to tackle it all. The contagion of stress not escaping our goodnight rituals. A sigh of resignation, exhaustion at not being able to handle it all–at least not well. These are the flip sides of the world I’m mostly inhabiting these days.

But then there’s my other world: The one where I’m the mom with the sick kid, the one who dropped that first world to live fully in a completely different one–one with doctors and twice-a-week hospital stays and overnights and blood tests and medications and consultations with other doctors, therapists, and healers. Two weeks after contracting H1N1, my daughter, E, was diagnosed with ITP, a rare blood disorder in which her body’s antibodies kill off its platelets in alarming number and voracity. So in December 2009 I unwittingly got a new job: full-time caregiver. It’s the hardest job I’ve ever had–even more challenging than parenting (that’s #2)–but one I wouldn’t have outsourced to anyone.

It became my mission to help E find her way back to good health, and nearly two years later, the prognosis is much more promising than ever. I’m ready to quit this job for good–and her progress has made that seem plausible now.  But as with many autoimmune diseases, there is no one, sure path to recovery–in fact, her doctor won’t even use that word, since most chronic ITP cases at best go into remission vs. a full recovery, only to come back weeks, months or years later, sometimes inexplicably. So while her results have been excellent, surprising even, it will be years before we’ll know whether this return to good health signals an end or just a pause in a longer tale not yet written.

These days, though, I spend most of my time in the first world with brief forays in the second. Once a week I take E for her shot at her pediatrician; every night I give her a pill; at the recommendation of a different doctor, I mix vitamin D and acidophilus into her milk; and once a month we go to the hospital where her levels are checked, medication is adjusted, and I discuss her progress with her specialist, an amazing doctor who deserves the credit for her dramatic turnaround. And there are the consultations with school, discussions with friends and colleagues inquiring about her progress, and other moments where World #2 meets World #1. At these times, I recall that there’s something different about E, and I feel the dissonance of being between two worlds, the regular-working-mom world and the caregiver-with-child-with-chronic-illness world. It feels dizzying, a confusing array of facts and priorities and opinions and conflicting obligations–and sometimes I have trouble reorienting myself to get back to my center, the place where I can easily navigate what matters most and what my next move should be.

Undoubtedly, to a significant degree I have set the spinning in motion. Very early on in her treatment, I advocated that E be treated like every other kid as much as possible–a reorientation, too, from her first year with the disease. It’s not a denial–it’s more of a steadfast sallying forth that I’m advocating, for both of us. We cannot, will not, let this stop us. She cannot, will not, succumb to defining herself as a “sick kid.”  Much of second grade was spent recalibrating her behavior–dealing with the psychological aftershocks and raising the bar on expectations so that she would be held accountable for her actions, just like any other kid her age. While I believe this is the right approach, there are times when my worlds collide and I’m left wondering which world I’m in and who I will need to be tomorrow.