"Mommy" she calls me softly, and I take my eyes away from the kindle page I've been trying to unsuccessfully read for the past 30 minutes. "Why am I not normal?"
My eyes well up instantly, and I blink rapidly before putting on a fake smile and reaching out to push the hair back from her face. "What do you mean, sweetie? You are perfectly normal" I say. But the sentences ring hollow even to my own ears. I know exactly what she means.
"My friends don't have to go to the hospital this often" she persists. She's angry that she missed her favorite chorus class this morning. And that she'll be missing a math test that she's studied hard for. She's mad that she'll be missing "fun friday" at school and a chance to pick a totally useless trinket from the class treasure chest for her hard earned behavior points this week.
Instead, she's lying in a darkened room, on a hard hospital bed, tubes attached to her, monitors beeping, while technicians and doctors stream in and out of the room discussing terms she doesn't understand.
For a kid with a chronic health condition, this is her normal.
I don't know what other parents do when their kid wakes up in the middle of the night complaining of a stomach ache and throws up the food she had for dinner. They'll probably call it a stomach bug, attribute it to restaurant food, and put the child on a BRAT diet for a day until the said stomach bug passes. Not us. We spend the night calling emergency lines for our gastro specialists. We spend the next day in an hospital facility - drawing blood to monitor markers, doing scans, meeting physicians and raking up hospital bills. And we don't realize we have been holding our breaths until we hear a "It just looks like a regular stomach bug, She's fine." This is our normal.
I doubt there's a word I despise more than the word "survivor". Because once you've encountered the dreaded world of cancer, no matter how briefly, no matter how fleeting, you are sucked in for good. We stand on the threshold, feeling thankful that our lives - though interrupted by hospital visits, blood draws, scans and surgeries - isn't taken over by more drastic, dreaded terms. Yet. And it is the "yet" that kills. The anxiety that sometime in the future, we'll have to go beyond the threshold. We'll actually have to enter.
But we shield her from this reality. We shield her from the "what ifs", the "thank gods" and the "nothing mores". We glorify the murky past and embellish the tales of her "miracle"- her survival - the miraculous survival of an infant that was given a date.. like the ones on perishable foods. She knows not to expect to see cheerful baby pictures of hers because there are none. Her childhood is not marked by milestones - it is marked by surgeries and therapies. She's vaguely aware of it all. But it's nothing more than a story for her. But it'll always be more than just a story for me. I am a mom that almost lost her child.
And when I sit in darkened rooms, holding her hand, I force myself to think of that and just be thankful for where we are. I struggle to pass on such feelings to her though. I see her resentment - towards siblings and friends that are lucky enough to not have to go through what she does. But I want her to understand that everyone has a different normal.
For some, it is a healthy life, for some - like her - it is a constantly monitored one.. and for yet others, it is a battle.
It is a lesson that we have to remind ourselves constantly as well. As parents, we are so impatient for her to "just be normal" that we sometimes fail to pause and be thankful how far we've come. And I see her father struggle more than I do with this process. Last week, she came home with her first quarter report card from school. As a child with learning disabilities, these moments are some of her least favorite. But surprisingly, she was excited this time. She pulled it out eagerly and showed it to him. There were some 'A's on the card. It has been a non-occurrence until now and this can only mean progress and hard work on her part. I watched him to see how he was going to respond to it. "Next time, more 'A's ok?" he said first. But he was quick to catch his gaffe as soon as he noticed her smile falter slightly. "I'm sorry" he apologized immediately. And then hugged her and told her how proud he was of her progress, how he's noticed all the extra effort she's put in and how every step is a step in the right direction.
She's a quiet child, that one. And her hug back was the only indication that he'd redeemed himself. That his apology was important.
He looked at me over her head, and we smiled as our eyes met.
We are all learning our normal.
My eyes well up instantly, and I blink rapidly before putting on a fake smile and reaching out to push the hair back from her face. "What do you mean, sweetie? You are perfectly normal" I say. But the sentences ring hollow even to my own ears. I know exactly what she means.
"My friends don't have to go to the hospital this often" she persists. She's angry that she missed her favorite chorus class this morning. And that she'll be missing a math test that she's studied hard for. She's mad that she'll be missing "fun friday" at school and a chance to pick a totally useless trinket from the class treasure chest for her hard earned behavior points this week.
Instead, she's lying in a darkened room, on a hard hospital bed, tubes attached to her, monitors beeping, while technicians and doctors stream in and out of the room discussing terms she doesn't understand.
For a kid with a chronic health condition, this is her normal.
I don't know what other parents do when their kid wakes up in the middle of the night complaining of a stomach ache and throws up the food she had for dinner. They'll probably call it a stomach bug, attribute it to restaurant food, and put the child on a BRAT diet for a day until the said stomach bug passes. Not us. We spend the night calling emergency lines for our gastro specialists. We spend the next day in an hospital facility - drawing blood to monitor markers, doing scans, meeting physicians and raking up hospital bills. And we don't realize we have been holding our breaths until we hear a "It just looks like a regular stomach bug, She's fine." This is our normal.
I doubt there's a word I despise more than the word "survivor". Because once you've encountered the dreaded world of cancer, no matter how briefly, no matter how fleeting, you are sucked in for good. We stand on the threshold, feeling thankful that our lives - though interrupted by hospital visits, blood draws, scans and surgeries - isn't taken over by more drastic, dreaded terms. Yet. And it is the "yet" that kills. The anxiety that sometime in the future, we'll have to go beyond the threshold. We'll actually have to enter.
But we shield her from this reality. We shield her from the "what ifs", the "thank gods" and the "nothing mores". We glorify the murky past and embellish the tales of her "miracle"- her survival - the miraculous survival of an infant that was given a date.. like the ones on perishable foods. She knows not to expect to see cheerful baby pictures of hers because there are none. Her childhood is not marked by milestones - it is marked by surgeries and therapies. She's vaguely aware of it all. But it's nothing more than a story for her. But it'll always be more than just a story for me. I am a mom that almost lost her child.
And when I sit in darkened rooms, holding her hand, I force myself to think of that and just be thankful for where we are. I struggle to pass on such feelings to her though. I see her resentment - towards siblings and friends that are lucky enough to not have to go through what she does. But I want her to understand that everyone has a different normal.
For some, it is a healthy life, for some - like her - it is a constantly monitored one.. and for yet others, it is a battle.
It is a lesson that we have to remind ourselves constantly as well. As parents, we are so impatient for her to "just be normal" that we sometimes fail to pause and be thankful how far we've come. And I see her father struggle more than I do with this process. Last week, she came home with her first quarter report card from school. As a child with learning disabilities, these moments are some of her least favorite. But surprisingly, she was excited this time. She pulled it out eagerly and showed it to him. There were some 'A's on the card. It has been a non-occurrence until now and this can only mean progress and hard work on her part. I watched him to see how he was going to respond to it. "Next time, more 'A's ok?" he said first. But he was quick to catch his gaffe as soon as he noticed her smile falter slightly. "I'm sorry" he apologized immediately. And then hugged her and told her how proud he was of her progress, how he's noticed all the extra effort she's put in and how every step is a step in the right direction.
She's a quiet child, that one. And her hug back was the only indication that he'd redeemed himself. That his apology was important.
He looked at me over her head, and we smiled as our eyes met.
We are all learning our normal.