Category Archives: breathing

Thank you, Mothering.com

audio-tape

In 2005, there was no Facebook.

In 2005, there were no smart phones or tablets or ways to send audio and video to anyone.

In 2005, if you were like me: alone with your preschooler and your baby and your empty house and almost no friends with children, the only way to connect to parenting wisdom, camaraderie, and a stolen moment of sanity several times a day was Mothering Magazine’s online forums. They were called the “Mothering Dot Commune,” and, for me, they served the purpose that smart phones and social media and texting serve now. They were, in a lonely world, a lifeline of support and connection. I relied on them for everything from pregnancy support (August 2005 Due Date Club!) to toilet training ideas to vegetarian recipes. I was steeped in gratitude during my pregnancy with my second daughter, but never more so than after she was born, when a regular user of the site who I’ll call Shanti helped set the course of my parenting in a way I’ll never forget. Continue Reading…

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Ten Gifts I Didn’t Deserve

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In the years I’ve spent as a parent, I’ve been humbled hundreds of times. Sometimes one of my daughters has a proclivity the other lacks. Other times, the health challenges of one make me see the relative good health of the other as anything but a given. Most often, though, I am humbled by the ways I see the challenges of other children and families. The things I took for granted always, always, reveal themselves to be as symptoms of my own ignorance. I could make the list below almost endless, pages and pages of gifts that no one is guaranteed but that I — somehow, luckily — was given. I will never take them for granted again. Never. Continue Reading…

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Twelve Years in Music

music-tools

I’ve loved music since I was a very little girl. My parents owned a record store before I was born; their music collection was spectacular, including every emblematic song of the 60s with rare gems thrown in. My earliest memories of their records are of the Beatles’ “All Together Now,” with its b-side of “Hey Bulldog,” a song so dark that it scared me. I can picture the green apple on the record label. I can picture the carpeted floor beneath me. I can remember the spot between the couch and the record cabinet where I sat and carefully edged the records out of their sleeves.

Like most people, my most powerful musical memories take me right back into the moment, bringing with them the smells and images and sensations that were present when the memories embedded themselves. In his fascinating book about music and the brain, the late neuroscientist Oliver Sachs wrote, “Music, uniquely among the arts, is both completely abstract and profoundly emotional. It has no power to represent anything particular or external, but it has a unique power to express inner states or feelings. Music can pierce the heart directly; it needs no mediation.”

These ten songs represent powerful piercings of my heart over the last twelve years of parenting my daughter Sammi, which was — as mothers of medically complicated children know — a more physical, spiritual, and emotional journey than the one I’ve shared with my older daughter. Of course there is powerful music to remember with her, too, but this music below served as survival tools in unique ways for Sammi and I. Perhaps these tools will help others, as well. Continue Reading…

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This Is the Worst Book Ever

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I got the CD-ROMs in the summer, and I opened them in November.

I’d asked the hospital to send me my daughter’s unabridged medical records only when I’d realized that it was as simple as filling in a form and sending a check. I did it before I could chicken out. I did it because I could. I did it because I was starting to jumble the facts in my head, because even though I didn’t want to sue anyone, I wanted those records before they got lost or deprecated, before their systems changed, before the years of my daughter’s misdiagnosis and unnecessary treatments got buried under other things, both in the hospital filing cabinets and in my soul.

When they arrived, I realized that they were not a box of papers, as I’d expected. They were on a handful of CD-ROMS: one for the notes and chart, and five for medical imaging: chest X-rays, CT-scans, EKGs, echocardiograms. I held the imaging CDs in my hands and wondered: was there a video in here of my daughter’s heartbeat? If she’d died, would I have wanted to hear it? Would I have wanted to play it as I fell asleep? Continue Reading…

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In Their Season

“I wonder if the snow loves the trees and fields, that it kisses them so gently? And then it covers them up snug, you know, with a white quilt; and perhaps it says, ‘Go to sleep, darlings, till the summer comes again.’
― Lewis Carroll, Alice’s Adventures in Wonderland & Through the Looking-Glass

I. Swaddle

It is a sunny afternoon, and for once, my newborn daughter is sleeping soundly, peacefully if not quietly. The wheezing, gurgling sound from where the tissue of her larynx flaps against itself surrounds her perfect, gorgeous face — it says cchchhhh sssccchhhhh ssscccchhhhchhh. But her eyes are closed, and I pass her from friend to friend in my living room, easily, with no drop of her head or arm stuck in someone’s armpit. This invention, I say to myself, is freaking brilliant. I need ten more, just in case. Continue Reading…

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