On the Worst Day of My Life, People Were There to Support Me
My 13-year-old daughter, Cammy, was diagnosed with Rett syndrome on Jan. 7, 2011. It was the worst day of my life. There was nothing anyone could say or do to take away my pain and sorrow. I knew that. My family and friends knew that. So what were the best things said or done for me when we received the worst news of our lives?
First, I gave my sister Joanne the awful task of relaying the Rett syndrome news to others. As hard as it’d be for my family, I asked them not to call me. I’d call them when I was ready. I needed that space. I will always appreciate Joanne relaying that tough news for me.
Next, my father-in-law stepped up to help carry us through by offering to take Cammy to therapy once a week for me. At that time, Cammy had six therapies every week — two physical therapy sessions, two occupational therapies, one developmental therapy, and one feeding therapy — and I’d just given birth to our second daughter. Having someone take one therapy off my plate was enormously helpful. It’s been 11 years since Cammy was diagnosed, and my father-in-law is still taking her to physical therapy once a week. Watching this weekly date develop and continue warms my heart, and it’s a highlight of Cammy’s week to be proudly chauffeured and escorted by her No. 1 fan.
A week after the diagnosis, we were still digesting the Rett syndrome news as more people learned about it. People wanted to know how to help, but I didn’t know how to ask for help.
Then, a woman, Aimee — who was my sister’s friend, though I’d never met her — showed up unannounced on my doorstep with bags of groceries. Aimee filled my refrigerator and told me she’d be back in a couple days to hold my children so I could take a shower and lie down to rest. I will never forget how Aimee showed up like Mary Poppins.
Grieving was a long and hard process for me; I was angry at everyone and everything. As one of the strongest and most compassionate people I know, my sister Kristin said the most perfect thing to me. Knowing that there was absolutely nothing she could say or do to fix this, she told me, “I’ll be your punching bag.” So simple and so perfect. She’s been there to listen to me vent, cry, and celebrate victories. Kristin takes my pain and doesn’t throw anything back except her love.
I’ve learned that there’s no perfect way to support someone who’s going through loss or trauma. Even though I didn’t know how to ask for help, I’m eternally grateful for those who just acted upon their instincts to step up. I remember each of these gifts on a daily basis. There’s always something we can offer to help lift someone.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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