Today I walk into a Catholic church, straight to the prayer chapel, kneel by the altar, light a candle... and I don’t pray. I weep.
For some reason, on this day, I need to go there. Drawn like a magnet to the tiny chapel.
On this day, I realize, once again, how little control I have over my world. And again, the fear and uncertainty rear their heads and glare at me with eyes glowing like red embers.
My daughter is deaf. Not totally deaf, just about 40% in direct conversation and 80% in peripheral conversation (un-aided). Of course she has hearing aids, which help, but don’t correct her hearing like glasses correct vision.
She is eight. She is smart, and beautiful, and caring, and friendly and imaginative. She is a control freak. Just. Like. Me.
I remember the day she was born like it was yesterday. I had been on bedrest for 8 weeks because she wanted to come early. ((I should have known then, she will never have it any way but hers.))
She did come early, but only 6 weeks, not 14 like she wanted to.
She came out silently. I was screaming and then crying, and she was silent. I thought it was supposed to be the other way around. Or at least, we should both be screaming.
I didn’t get to hold her. Hands in blue latex were grabbing her and putting tubes inside her and pounding on her body, trying to elicit the cry. She was silent.
They took her to the NICU on oxygen and intubated her. The first time I touched her, she had tubes coming out of her body everywhere. I was terrified. I didn’t have control.
A few weeks later, she is home and crying. Finally, she is crying and crying and won’t stop crying and (I know this makes me sound crazy) I am loving her cries. When they wake me I love them. When I can’t get her to stop, I still love them. She is crying and that is beautiful. She is also smiling. And laughing and growing and…
A few years later, she is starting kindergarten. My baby girl with blond curls, a backpack, and blue eyes. “You know what makes blue eyes special?” She asks her grandmother. “Blue eyes can see the farthest. They can see everything, even the invisible stuff.”
Her teacher says she is bright and imaginative, but lacks focus and seems to act out. I dismiss it - her dad and I are getting a divorce, I can imagine that's she having adjustment problems. Half a year in, she leaves school on her own, walking to her brothers’ daycare to check on them. No one notices she’s gone until a crossing guard a few blocks away sees her and sends her back. The school doesn't tell us.
A few months later, she decides to walk home, and accompanies a boy across the street in the opposite direction to home. No one notices except her daycare bus driver who sees her “walking with a strange man” down the street. The “strange man” returns her to a police officer when he realizes she shouldn’t be with him and his son and she doesn’t live on that street. The school calls us this time and I go ballistic.
How could they lose my daughter? What is making her act this way? Why in the world would they not tell me about the OTHER time this happened?
A year later, she is in a new class, first grade, and immediately her teacher begins sending home notes – She “isn’t paying attention”, she “seems distracted”, she “goofs off”, she “failed her hearing test.”
Failed her hearing test. And when she is 6, we realize that she is deaf. What kind of parent doesn’t realize their kid is deaf?
Tests and doctors leave me asking why, which is answered by her 3 week stay in the NICU. Those releases I signed to save her life sacrificed her hearing, and to me, that is a small price to pay.
Now the fight starts with the school, I am an angry cobra in my glory, ready to strike dead the next person who doesn’t protect my child. I am inside feeling as if I have not protected her enough. If I had been better at being pregnant. If my body hadn’t wanted to deliver her early. If I had been there every day after school to pick her up instead of sending her to daycare. If I had stayed married to her dad, maybe none of this would be happening.
She tells her brothers now that she has super powers and they believe her. She bestows super-powers, too, and tells her brothers she will give them the best power of all – the power to be themselves. I smile proudly. I have taught her something worthwhile.
A year later: same story, different year. Her teacher is kind and loving. My baby is now in second grade and has realized she is different. The other kids don’t play with me, she says.
The other kids don’t like me. Don’t send me to school, please, she begs.
And I cry. ((Mostly)) in the car after I drop her off. Because I can’t fix this ((or if I can, I don’t know how)). She gets on ADD meds and that seems to help her focus and impulse control, to an extent.
Third grade and I have fought hard. I am fighting for everything she is legally entitled to as a disabled child. I have demanded that the school provide an FM system so she can hear the teacher in her ears. They provide it, but never actually program it to her aids, so for 3 months she listens to the McDonalds drive-thru off and on, between conversations from truckers on the same frequency.
She has one friend, but she is terrified of tests and of failure and of disappointing her teachers. She has begun to lie, and I don’t know what to do with this. “Be harder on her.” people say. “Discipline. That’s what she needs. Don’t tolerate the lying.” I try the hard line approach, and I'm not sure it works. I know there’s a reason, though, and at night I lie awake thinking about what it could be.
Two weeks ago, on mothers’ day, she makes me a beautiful card. She knows this is my day and she keeps the boys quiet so I can ((unexpectedly)) wake up at 10am. She kisses me sweetly and tells me that she’s going to make me breakfast – honey nut cheerios – and she is being the model child. She knows how: she does this a lot. She is compassionate and empathetic, and loving, and generous… except when she’s not.
Yesterday at home, she has a meltdown. She has done something I told her not to do, and now she is lying to me. I follow the rules of therapeutic parenting. I don’t get angry. I will not tell her by my words or actions that lying is more powerful than the truth. I set boundaries. I ask her to help me fix the lie, I don’t confront the lie. I have many times before, and it doesn’t work. She is upset, she is angry. I tell her I love her anyway, and let her have her space. Eventually she calms and I talk to her. She tells me she loves me and she won’t do it again. She explains her feelings as best she can in eight-year-old terms. She kisses me.
Today she gets mad when I won’t drop her off a block away from school so she can walk with the crossing guard. I drop her off at the front door of school instead and she slams the door and stomps off. Apparently the slamming and stomping continues well into the day and she winds up with a half-day in-school suspension. My daughter, spending her day in the principal’s office. Her dad and I get calls. I am at a loss. My baby is angry and crying and unreasonable. And she is at school. What is wrong with this picture? I hang up with the principal and walk to my car.
This day, with a tornado that killed almost a hundred people and destroyed thousands of lives on its eve. This day, I am minding my own tornado and, again, I can’t control it. I don’t know how to fix it. I don’t know how to be the right mom. I don’t know how this is done, and I am desperate for answers. She has seen me slam doors. She has seen me yell. I blame myself for all of this, but I don’t know how to “fix” my daughter.
This day finds me with keys in hand and tears running down my cheeks, getting in my car, and half –blindly driving to the Catholic church a few miles away. I get out and walk into the chapel. I cross myself and kneel by the candles to light one. Then I cry. Shoulders heaving, teeth clenched, hands shaking, I cry.
What else can I do but give it up to Someone who has more control than I, who can see the end when I am at the end of myself? I am trying to figure this out, but I’ve never done it before. And I’m afraid I’m failing miserably. So I watch and pray and act and cry (a lot).
Tonight I talk to her. She is embarrassed and ashamed. She was yelled at in front of the other kids. She didn't hear the teacher calling from across the crowded gym until the teacher was yelling and impatient and flustered. Bella walks up to the teacher and all eyes are upon her while the teacher tells her she should listen, then singles her out even more by making her sit alone, as punishment. Already the other kids won't sit close to her, they talk about her, they tease her for her big mouth and blue hearing aids.
She is pegged as the trouble maker and she wants to disappear. Bad turns to worse as she carries the shame, with the help of the before school gym supervisor, who tells her teacher that she was out of line. The teacher now knows her shame and she embarrasses her even further by sending her to the counselors office to talk about her "defiance". Bella is quiet in the counselors' office. She won't meet her eyes, she just wants these feelings to stop inside, where she feels sad and alone and like a failure, but they don't, so she deals with it the best way she can. She is withdrawn and quiet until she returns to class and with a clatter, her books fall on the floor and all eyes are upon her again. I can't do anything right! she fumes, and now the safe anger has surrounded her, and she is bound and determined to take back control, so she picks up her books and slams them on the desk, defiantly facing the teacher and refusing to do her work. She cries as she tells me the story, and she says she's sorry she disappointed me. I cry too, and ask if I could make a few suggestions for next time. She listens.
I hope, beyond measure, that I’m doing the right things. And I love on her and her brothers, telling them every chance I get, until they roll their eyes and tell me to stop, and past that point. Because I’m the mom, and that’s what moms are supposed to do… At least, I think that’s what we’re supposed to do.
...More than anything, I feel inadequate to watch over the beautiful and complicated gift of my children. So I turn to the One who gave them to me and beg for guidance. That's what I do today, in this chapel, I tell God I don't know what to do, or how to fix it, and I give it to him. Maybe he knows what to do with it.
For some reason, on this day, I need to go there. Drawn like a magnet to the tiny chapel.
On this day, I realize, once again, how little control I have over my world. And again, the fear and uncertainty rear their heads and glare at me with eyes glowing like red embers.
My daughter is deaf. Not totally deaf, just about 40% in direct conversation and 80% in peripheral conversation (un-aided). Of course she has hearing aids, which help, but don’t correct her hearing like glasses correct vision.
She is eight. She is smart, and beautiful, and caring, and friendly and imaginative. She is a control freak. Just. Like. Me.
She did come early, but only 6 weeks, not 14 like she wanted to.
She came out silently. I was screaming and then crying, and she was silent. I thought it was supposed to be the other way around. Or at least, we should both be screaming.
I didn’t get to hold her. Hands in blue latex were grabbing her and putting tubes inside her and pounding on her body, trying to elicit the cry. She was silent.
They took her to the NICU on oxygen and intubated her. The first time I touched her, she had tubes coming out of her body everywhere. I was terrified. I didn’t have control.
A few weeks later, she is home and crying. Finally, she is crying and crying and won’t stop crying and (I know this makes me sound crazy) I am loving her cries. When they wake me I love them. When I can’t get her to stop, I still love them. She is crying and that is beautiful. She is also smiling. And laughing and growing and…
Her teacher says she is bright and imaginative, but lacks focus and seems to act out. I dismiss it - her dad and I are getting a divorce, I can imagine that's she having adjustment problems. Half a year in, she leaves school on her own, walking to her brothers’ daycare to check on them. No one notices she’s gone until a crossing guard a few blocks away sees her and sends her back. The school doesn't tell us.
A few months later, she decides to walk home, and accompanies a boy across the street in the opposite direction to home. No one notices except her daycare bus driver who sees her “walking with a strange man” down the street. The “strange man” returns her to a police officer when he realizes she shouldn’t be with him and his son and she doesn’t live on that street. The school calls us this time and I go ballistic.
How could they lose my daughter? What is making her act this way? Why in the world would they not tell me about the OTHER time this happened?
Failed her hearing test. And when she is 6, we realize that she is deaf. What kind of parent doesn’t realize their kid is deaf?
Tests and doctors leave me asking why, which is answered by her 3 week stay in the NICU. Those releases I signed to save her life sacrificed her hearing, and to me, that is a small price to pay.
Now the fight starts with the school, I am an angry cobra in my glory, ready to strike dead the next person who doesn’t protect my child. I am inside feeling as if I have not protected her enough. If I had been better at being pregnant. If my body hadn’t wanted to deliver her early. If I had been there every day after school to pick her up instead of sending her to daycare. If I had stayed married to her dad, maybe none of this would be happening.
She tells her brothers now that she has super powers and they believe her. She bestows super-powers, too, and tells her brothers she will give them the best power of all – the power to be themselves. I smile proudly. I have taught her something worthwhile.
A year later: same story, different year. Her teacher is kind and loving. My baby is now in second grade and has realized she is different. The other kids don’t play with me, she says.
The other kids don’t like me. Don’t send me to school, please, she begs.
And I cry. ((Mostly)) in the car after I drop her off. Because I can’t fix this ((or if I can, I don’t know how)). She gets on ADD meds and that seems to help her focus and impulse control, to an extent.
Third grade and I have fought hard. I am fighting for everything she is legally entitled to as a disabled child. I have demanded that the school provide an FM system so she can hear the teacher in her ears. They provide it, but never actually program it to her aids, so for 3 months she listens to the McDonalds drive-thru off and on, between conversations from truckers on the same frequency.
She has one friend, but she is terrified of tests and of failure and of disappointing her teachers. She has begun to lie, and I don’t know what to do with this. “Be harder on her.” people say. “Discipline. That’s what she needs. Don’t tolerate the lying.” I try the hard line approach, and I'm not sure it works. I know there’s a reason, though, and at night I lie awake thinking about what it could be.
Yesterday at home, she has a meltdown. She has done something I told her not to do, and now she is lying to me. I follow the rules of therapeutic parenting. I don’t get angry. I will not tell her by my words or actions that lying is more powerful than the truth. I set boundaries. I ask her to help me fix the lie, I don’t confront the lie. I have many times before, and it doesn’t work. She is upset, she is angry. I tell her I love her anyway, and let her have her space. Eventually she calms and I talk to her. She tells me she loves me and she won’t do it again. She explains her feelings as best she can in eight-year-old terms. She kisses me.
Today she gets mad when I won’t drop her off a block away from school so she can walk with the crossing guard. I drop her off at the front door of school instead and she slams the door and stomps off. Apparently the slamming and stomping continues well into the day and she winds up with a half-day in-school suspension. My daughter, spending her day in the principal’s office. Her dad and I get calls. I am at a loss. My baby is angry and crying and unreasonable. And she is at school. What is wrong with this picture? I hang up with the principal and walk to my car.
This day, with a tornado that killed almost a hundred people and destroyed thousands of lives on its eve. This day, I am minding my own tornado and, again, I can’t control it. I don’t know how to fix it. I don’t know how to be the right mom. I don’t know how this is done, and I am desperate for answers. She has seen me slam doors. She has seen me yell. I blame myself for all of this, but I don’t know how to “fix” my daughter.
This day finds me with keys in hand and tears running down my cheeks, getting in my car, and half –blindly driving to the Catholic church a few miles away. I get out and walk into the chapel. I cross myself and kneel by the candles to light one. Then I cry. Shoulders heaving, teeth clenched, hands shaking, I cry.
What else can I do but give it up to Someone who has more control than I, who can see the end when I am at the end of myself? I am trying to figure this out, but I’ve never done it before. And I’m afraid I’m failing miserably. So I watch and pray and act and cry (a lot).
Tonight I talk to her. She is embarrassed and ashamed. She was yelled at in front of the other kids. She didn't hear the teacher calling from across the crowded gym until the teacher was yelling and impatient and flustered. Bella walks up to the teacher and all eyes are upon her while the teacher tells her she should listen, then singles her out even more by making her sit alone, as punishment. Already the other kids won't sit close to her, they talk about her, they tease her for her big mouth and blue hearing aids.
She is pegged as the trouble maker and she wants to disappear. Bad turns to worse as she carries the shame, with the help of the before school gym supervisor, who tells her teacher that she was out of line. The teacher now knows her shame and she embarrasses her even further by sending her to the counselors office to talk about her "defiance". Bella is quiet in the counselors' office. She won't meet her eyes, she just wants these feelings to stop inside, where she feels sad and alone and like a failure, but they don't, so she deals with it the best way she can. She is withdrawn and quiet until she returns to class and with a clatter, her books fall on the floor and all eyes are upon her again. I can't do anything right! she fumes, and now the safe anger has surrounded her, and she is bound and determined to take back control, so she picks up her books and slams them on the desk, defiantly facing the teacher and refusing to do her work. She cries as she tells me the story, and she says she's sorry she disappointed me. I cry too, and ask if I could make a few suggestions for next time. She listens.
I hope, beyond measure, that I’m doing the right things. And I love on her and her brothers, telling them every chance I get, until they roll their eyes and tell me to stop, and past that point. Because I’m the mom, and that’s what moms are supposed to do… At least, I think that’s what we’re supposed to do.
Oh beautiful Lily! I am praying for you to have to clarity and peace so that you will find the answers you seek! You are a great mom. It takes a lot of courage to admit you don't know what to do now. But somewhere inside, you DO know. :) Clarity will help shed the illusion that you don't. xoxoxo
ReplyDeleteHang in there, hun. Just take it one day at a time :).
ReplyDeleteSounds like a chapter out of my life. My daughter was also born 6 weeks premature and is deaf. She does fairly well with hearing aids, but it doesn't fix everything. No one realized she was deaf until she was in 2nd grade. She would get 100% on her spelling tests, and they were usually rhyming words. She had numerous ear infections, and the hearing problems were initially attributed to the fluid in her ears from the chronic infections. When she finally got her hearing aids, one of the first things I heard when she brushed her teeth that first night was, "I didn't know water made a noise." My heart just ached for her. There are tough times. Other kids are not always kind. When she was in high school, a teacher told me about asking the class a question, "If you could have anything you want, what would it be?" They went around the room and answered, and of course there were the answers you would expect - a million dollars, etc. When they got to my daughter, she quietly answered, "I would like to hear." The room was silent. I have learned so much from my daughter. She is now 25 years old, married, and expecting her first child. She has a BA in Music Performance with emphasis on the viola and teaches private music lessons. You do know what to do and who to turn to. You are right when you say He can help. You really do have to turn it over to Him. Just love her a lot and know that there isn't anything she can't do. Coincidentally, I am LDS and attend the same ward as Janie.
ReplyDeleteWhoever you are, Anonymous, it means so much to me that you wrote this. It helps to know that others have been there and did great... sometimes I get so overwhelmed, not even knowing if I am doing or saying the right things, or if I'm doing it "all wrong". I'm glad your daughter is doing well. That gives me so much hope.
ReplyDelete