the antithesis of every neurologist we’ve ever met. She has a gentle bedside manner and limitless patience when it comes to getting Lily on board and compliant during our visits. She never makes me feel stupid for asking questions, and she takes extra time to make sure that I understand everything well. She is a treasure and I absolutely adore her.
“Hi, Lily.” She greets my daughter with a warm smile and ushers us into Lily’s room. She shakes hands with Peter and me, and then gets straight to the point.
“We aren’t seeing a lot of difference with the pattern or the location of Lily’s seizures on the EEG. The MRI report isn’t ready yet, but preliminary findings are negative for abnormalities.” She sighs heavily. “While I’m happy that there is nothing overtly wrong with Lily’s brain, it doesn’t help us solve the puzzle of why all this is happening. I know how frustrated you must be.”
She has no idea, but I appreciate her acknowledging the effect it has on us as a family, and not just Lily as her patient.
“We will know more in a couple of weeks, when you come back in for the follow-up. For now, I’d like to keep Lily here for another twenty-four hours, so we have a basis of comparison between yesterday’s EEG and today’s.” With that final comment, any hope I had for progress is dashed. She takes a few minutes to play with Lily, making her giggle with delight, and then moves on to her next patient.
Once again we are left with more questions than answers. I’m really starting to doubt that there will ever be answers. Peter packs his things into his overnight bag and kisses Lily on the cheek as he heads out.
“I have to work tomorrow, so I won’t be able to see her until after six,” he reminds me.
“It’s okay. Paige is going to swing by tomorrow, and I’ll call you when they discharge us so you know whether to head here or back to the house.” I’ve got it covered. I always do.
“Bye-bye, Daddy.” Lily smiles and then turns her attention to me. “Mama, snakes,” she says, pointing to the electrodes on her head. When I look up, Peter is gone. That’s how it happened in our marriage: one minute my eyes were on Lily, and the next he was gone.
gotta figure this out
O ne thing about being the mom of a child with special needs: you get to see the world in a way few others do. I’ve watched other parents take for granted the way their children catch a ball or swing from the jungle gym. I watch their children and see the things that Lily has to go to occupational therapy to learn how to do. Some of those things will never be options for Lily: the jungle gym, a bicycle, even a swing without a harness. Until we can get her regulated, the risk of Lily having a seizure and falling off is too high.
For now we work on things in small steps, fun games with hidden value. Today Lily and I are curled up in her hospital bed, working on motor planning with the iPad.
Fruit Ninja
is my weapon of choice. In clinical terms, we’re working on bilateral and eye-hand coordination. In layman’s terms, she’s learning to hold the iPad with one hand while she slaughters fruit using the pointed index finger of the other. I’ve learned to appreciate the little things. Most people would see a kid playing a video game; I see the triumph of Lily enjoying a game that other kids her age also like. We’re just conquering a frenzy level when there is a knock on the door.
“Ms. Hunter? Lily?” A wisp of a woman enters, pushing reading glasses up the bridge of her nose as she reads Lily’s chart. I’ve never seenher before; it sets my nerves on edge that a stranger is scouring through the doctor’s notes.
“Hello,” I reply warily. “Can I ask why you have my daughter’s chart?”
“I’m Patricia Nix.” She grins, unaffected. “I’m a social worker here at University Hospital.” She reaches out to shake my hand. “I’m here to make sure that your family is connected with all available
“Hi, Lily.” She greets my daughter with a warm smile and ushers us into Lily’s room. She shakes hands with Peter and me, and then gets straight to the point.
“We aren’t seeing a lot of difference with the pattern or the location of Lily’s seizures on the EEG. The MRI report isn’t ready yet, but preliminary findings are negative for abnormalities.” She sighs heavily. “While I’m happy that there is nothing overtly wrong with Lily’s brain, it doesn’t help us solve the puzzle of why all this is happening. I know how frustrated you must be.”
She has no idea, but I appreciate her acknowledging the effect it has on us as a family, and not just Lily as her patient.
“We will know more in a couple of weeks, when you come back in for the follow-up. For now, I’d like to keep Lily here for another twenty-four hours, so we have a basis of comparison between yesterday’s EEG and today’s.” With that final comment, any hope I had for progress is dashed. She takes a few minutes to play with Lily, making her giggle with delight, and then moves on to her next patient.
Once again we are left with more questions than answers. I’m really starting to doubt that there will ever be answers. Peter packs his things into his overnight bag and kisses Lily on the cheek as he heads out.
“I have to work tomorrow, so I won’t be able to see her until after six,” he reminds me.
“It’s okay. Paige is going to swing by tomorrow, and I’ll call you when they discharge us so you know whether to head here or back to the house.” I’ve got it covered. I always do.
“Bye-bye, Daddy.” Lily smiles and then turns her attention to me. “Mama, snakes,” she says, pointing to the electrodes on her head. When I look up, Peter is gone. That’s how it happened in our marriage: one minute my eyes were on Lily, and the next he was gone.
gotta figure this out
O ne thing about being the mom of a child with special needs: you get to see the world in a way few others do. I’ve watched other parents take for granted the way their children catch a ball or swing from the jungle gym. I watch their children and see the things that Lily has to go to occupational therapy to learn how to do. Some of those things will never be options for Lily: the jungle gym, a bicycle, even a swing without a harness. Until we can get her regulated, the risk of Lily having a seizure and falling off is too high.
For now we work on things in small steps, fun games with hidden value. Today Lily and I are curled up in her hospital bed, working on motor planning with the iPad.
Fruit Ninja
is my weapon of choice. In clinical terms, we’re working on bilateral and eye-hand coordination. In layman’s terms, she’s learning to hold the iPad with one hand while she slaughters fruit using the pointed index finger of the other. I’ve learned to appreciate the little things. Most people would see a kid playing a video game; I see the triumph of Lily enjoying a game that other kids her age also like. We’re just conquering a frenzy level when there is a knock on the door.
“Ms. Hunter? Lily?” A wisp of a woman enters, pushing reading glasses up the bridge of her nose as she reads Lily’s chart. I’ve never seenher before; it sets my nerves on edge that a stranger is scouring through the doctor’s notes.
“Hello,” I reply warily. “Can I ask why you have my daughter’s chart?”
“I’m Patricia Nix.” She grins, unaffected. “I’m a social worker here at University Hospital.” She reaches out to shake my hand. “I’m here to make sure that your family is connected with all available
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