Saturday, November 2, 2013

My "new normal" is not what I expected

When Caroline was diagnosed, I understood that everything in my life would be very different from that point on. I made a few assumptions...but life is always full of surprises.

I thought the gut wrenching grief that invaded my being would eventually be replaced by a feeling of acceptance, which I mistakenly equated to a return to some kind of normalcy. That initial debilitating grief did eventually subside. But I've learned that feelings of sorrow are constant, even when I forget they are there. I now know that my heart will continue to hurt for Caroline for as long as I live.

I remember wondering if I would ever feel joy again. What I didn't expect was to experience happiness on an entirely differently level. These moments are brief but they are powerful. Something as simple as Caroline giving me a sweet smile, or sharing a good laugh with a someone I care about, is enough to remind me that life is beautiful no matter how dark and challenging it may seem at times. I've finally learned to live in the moment and just focus on today. I've learned to be fully present with people. And gestures of friendship and support from those around me are crucial in getting me through each day. The good, which is plentiful, certainly outweighs the sad.

I feared my heart would harden, and I worried relationships would change. Relationships did change. I developed stronger and more authentic connections with people in my life. My heart didn't go numb, it actually grew bigger. Caroline taught me the meaning of profound and unconditional love, which in turn, has made me more in tune with the love I feel for people around me. But Rett Syndrome has also exhausted my ability to put up with judgment and insensitivity.The few people who pitied us or were uncomfortable with Caroline self-selected themselves out. No hard feelings.Things have a way of working themselves out.

I thought I would be left with just one identity--special needs mom. To clarify, of all the different hats I wear on a daily basis, being Caroline's mom brings me the most pride and fulfillment. But for many months after Caroline's diagnosis, I could not see myself succeeding or finding satisfaction in any other role. I realized now that I am not defined by Caroline's diagnosis. I can still be "me." I'm still a partner to Mike beyond our parenting roles. I can still pursue my career, which is incredibly fulfilling to me. I can continue to nurture relationships with family and friends. And I can be silly and light. Aside from grounding me, these different aspects of my identity help me become a better mother to Caroline.

I thought I could remain part of the "general parenting world" (for lack of a better word). Instead, I find myself sitting on the sidelines. My only experience as a mother is with a physically disabled child. When the issue of (typical) parenting comes up in conversation, I often feel like a stranger trying to fit in, trying to understand social norms that no longer make sense to me. Priorities and visions for the future are fundamentally different. These paths are certainly not created equal. And I often get harsh reminders that our life is considered far from ideal when I stumble into conversations reminding me that Caroline represents every parent's worst fear. I completely understand those concerns because I was once there too. But it still hurts to hear those things. My protectiveness towards Caroline overpowers my ability to think rationally in those moments.

I've found that I cope better when I tune out society's messages about what happiness and success should look like. For whatever reason, Caroline's diagnosis has brought everything into focus. It's made me more aware, more awake. I like who I've become. I just wish it hadn't come at such a high cost to my Caroline. She suffers and struggles in ways that are unimaginable to most of us. And that's just not fair.