What I Was (Not) Thinking

In the fall of 2010, my younger daughter began kindergarten on a dairy-free, egg-free, soy-free, wheat-free, nut-free, vegetarian diet.

In late October, she got to add eggs back into her diet on a trial basis, and I learned how incredibly, incredibly useful eggs can be in managing a diet as challenging as hers. When we added back eggs, it made it possible for us to make these ridiculous — and I mean ridiculous — “pizzas:”

everything-free-pizza

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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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Forget It, Or Don’t, Or Hold It Lightly

swallow-my-sunshine-chairIt was December, 2013, when we had that awful conversation, the doctor and my husband and I.

It was cold out, and my body wasn’t ready for it yet. That’s why my chin was quivering as I sat in the upholstered chair next to the window, cradling one phone while my husband stood alert in the next room with another extension in his hand. It was cold outside, and I didn’t have my winter metabolism running by then, so my hand shook. It shook so much that the paper in front of me was blank the whole time. I never wrote anything. At the end of the conversation, when the doctor’s excitement oozed through the phone because the missing piece might really fit in the puzzle this time, my paper was blank and my toes were tucked under my bottom in the chair, holding me tightly into the space where I was curled now, so cold, so cold because I was near the window, the winter window, on a frigid day. That’s why I shook. That’s why I shivered.

But actually, it turns out, it was November. Continue Reading…

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Do Not Undo My Work

sunshine-dont-undo-my-work

All around the country, parents are furious.

Some of them went to great lengths to have their children. They went through infertility treatments for years, day after day of injections, procedures, medications and mood swings and worry, meditating on the child they saw in their dreams. They held their breath through much of their and their partners’ pregnancies, that child’s existence suspended by threads in their hearts. They held their partners’ hands through every ultrasound, every test, every kick and wiggle. When their children finally arrived, those arrivals were the most hard-won battle they’d ever faced.

And those parents are wondering now if, one afternoon, a storm might blow the windows of their houses in, eliminate their access to electricity and running water, coat their walls in mold and make that child, that blessing they begged for, sick. And that they might be holding that child in their arms on the roof, waiting for relief that spells out that child’s survival, if it comes. And those parents, imagining the roof, the cold, the squirming frightened child, are angry.

Some parents knew their child was waiting somewhere for them, if not in the cells of their bodies, then elsewhere: in a foster home, in a pregnant woman not ready or able to care for a child, nearby or across the state or across the world. Those parents waited for years — through paperwork, through interviews, through false starts and second thoughts, through faith and desperation, until one day that baby or that toddler or that teenager joined them in their living room, forever, making them a family.

And those parents are wondering now if, one afternoon, they’ll receive a call from their child’s school about an active shooter in the area. They’ll wonder if every door will be carefully locked, if every student will be safe, if their child — their sought-after, destiny-made child — will be inside, or will the call come at recess time? They are wondering where the nearest gun shop is. They are wondering where the nearest guns are. And those parents, imagining the classrooms of frightened children, imagining their frightened children, are angry. Continue Reading…

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They’re Not Here Anymore

sick-baby-tired-mama

It is early 2006. The woman holding the camera — a small digital camera with a flash, the only camera she has — is taking what someday will be known as a “mirror selfie,” and people will take them with their smart phones, which, in 2006, almost no one owns.

The baby in the photo is being held securely in a ring-sling, a native-style baby carrier that holds her snug against the woman’s chest. She is asleep, making a raspy, wheezing, wet sound which precludes the woman from doing the following:

  • talking on the phone
  • hearing anything on the tv
  • coping with anything but the most crucial, immediate needs
  • thinking

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