still is a word that is sitting with me today. still not in the 'be still and know' way. still in the ongoing way- the continuum way- the never ending way.
'this is still my life?'
'this is still where we are at?'
'are we still dealing with this?'
still: adj. devoid of, or abstaining from motion; adv. happening or existing before now and continuing into the present
this is a bowl of oatmeal. if time really is money, this might be the most expensive bowl of oatmeal ever made.
this bowl of oatmeal was made by zoe, although she will deny it. and she will deny it because it symbolizes her growing up. it would acknowledge her ability to do something she would rather have someone else do for her. which is true of most things. i know this girl and i know her well and every milestone she ever hit required a lot of time and assistance and prompting. at the risk of sounding incredibly over dramatic, this is the most painful thing in my life. to watch this girl at 16 completely fall apart over having to make her own oatmeal (with full support, and something she's done before), to listen to her screaming that no one understands her, that she is being pushed out of her comfort zone, that she doesn't want to grow up, saying she wants to swear and break something, is actually worse than physical pain. because it's heartbreaking. it's all the extreme emotions you can feel, but at once. love, anger, love, sadness, love, frustration, love, fear. but the love part is so hard to access. the love part actually seems to magnify the other emotions- because if i didn't love her so bleeping much i wouldn't care so much.
her goal is to outlast us. to push and push and fight and fight until we are so exhausted that we give in and she doesn't make the oatmeal. her goal is to retreat to her safe place- her room - with a world of her own: dozens of LPS toys with giant eyes who can do whatever she says and don't have facial expressions to read and tones of voices to navigate. with american girl dolls who look like friends with their long hair and their clothes and their known stories that don't change. with books that bring worlds that she can access with out rejection. and movies that sooth with their peaceful songs, their familiarity, constancy and 2 dimensionality. i wonder sometimes if that is the world that zoe wants to live in- a 2 dimensional world, because three dimensions is. way. too. complex.
i don't want to take those things from her. i don't want to force her to leave what she finds comfortable behind and demand she enter full-time into a world that i know as normal, but she finds terrifying. i hate that i can't fully understand life from her perspective. i can't feel or hear or see the world as she does- but i also can't change the world to fit into her comfort zone. she has to learn to adapt.
maybe that's part of why i love living in uganda. it gives me a tiny example of life from her shoes. of what it feels like to be on the outside. to struggle with the norms around me. to never really feel completely at home. to feel different all the time.
the problem with parenting all this is that unfortunately, i'm human.
i have a whole lot of other things going on besides being her parent. things like being a parent to three other kids, having a marriage, having a job, having the responsibilities of living, and taking care of, even, myself.
and those are just the external things. the internal parts of being human make parenting a kid with special needs even harder. and this is where the still comes in. to be honest- i get really tired of my life, and i love life. i struggle to not feel the past, and the future with her in each present moment. and in those moments in the kitchen when she's standing there unbrushed and barely dressed, yelling at me that she can't do anything, and i know that to get her to make oatmeal is going to make this go on for another hour (which is a reallllly long time), i become my worse self. i can hold it for the first 15 minutes. i can speak quietly, with encouraging words, i can offer understanding and support. but after that, when none of that works and she only escalates, unfortunately, i join her- worse self in full glory. and from that place- no oatmeal will be made, no strength will be built, no personhood will be encouraged- things only become destroyed.
mike came in the kitchen. of course the parent who hasn't just lived the past 15 minutes is always able to start calm, which can be highly annoying to the parent who is wanting to poke out their eyeballs, and for zoe, it provides another pair of ears to lead down her path of self-pity. so we took a five minute break.
mike told me that he knows. and he does. that it's incredibly difficult and painful and deep and hard and scarey and awful. and as he validated my herd of feelings i cried- because what else can you do when you are backed up against a wall and being smooshed by your life? then i spoke. all those things that i've spoken so. many. times. before. (still). i'm tired. it's unfair. i know she can do it. why can't she just try. what about the other kids. it's unfair to them. she monopolizes all our energy. i won't have her live in our house and play with preschool toys for the rest of her life. she needs to start to own it. we've done so much- it's her turn to try. what do we do?
he told me again that he knows and he held me. just like God does. God, who really knows.
so what do we do? the Indwelling said the answer is: yes. yes you just do it. yes it's hard and unfair and so is the world. yes it's exhausting and time consuming, but this is your life. yes- you love her as i love you even when you're fighting me and running away. yes love looks different at different times- this is one of those times when love is tough- but it still needs to be love, not anger, not reaction, not about you. (not about your life, your worth, your future, your guilt, your suffering).
when i went down to the kitchen she was there and i just held her and she cried. a long hard cry. i told her that everything she's ever done has gone down like this. her learning to roll over, crawl, and walk took hours and hours and years off from careers. it took pushing her out of each of those comfort zones. but i didn't leave her side. i waited. i put her back on her belly and rubbed her back while she screamed. i propped her legs underneath her and put my hand on her feet so she could push off. over and over again. and one day, she did it. i moved her doll up one stair at a time until eventually she could crawl up the staircase. somehow that was easier. she could cry, but not shout angry mean words at me. she could only cry- not pour out all the real frustrations of what it's like to be her. and back then i could believe that maybe, maybe once she'd gotten on her feet, things would get easier. but they didn't and now i know that.
it took another 30 minutes. it took some siblings calmly encouraging her, and the addition of chocolate and sprinkles and finally an LPS toy that could assist her in a 'cooking show'. it had to become a game, but she got it done.
what mike and i realized is how easy it is to avoid loving her like this.
her 'stillness' is contagious. there is a strong desire to retreat from the conflict that ensues from helping her with movement and change. it's way easier to make the oatmeal than deal with the external and internal logistics of getting her to do it.
but. love is hard. the right path is usually not the easy one. this needs to be a season of loving her with a gentle but consistent push. to walk with her through the next big stage of human development. we did baby to child, now it's time for child to adult. we need to create the space inside that will be required of us. we need to give lots of grace to her and ourselves and each other. we need to grow her identity without our identity getting in the way. we must hear the parts inside ourselves that suffer with this, and tend to them, so we don't let them compete with our parenting her. and we need to remember that there are the everlasting arms, sitting beside us and rubbing our backs, or propping our knees up under us and giving us a place to push off from. shedding a tear from that mixed up bag of emotions when someone you love is doing hard things.
'this is still my life?'
'this is still where we are at?'
'are we still dealing with this?'
still: adj. devoid of, or abstaining from motion; adv. happening or existing before now and continuing into the present
this is a bowl of oatmeal. if time really is money, this might be the most expensive bowl of oatmeal ever made.
this bowl of oatmeal was made by zoe, although she will deny it. and she will deny it because it symbolizes her growing up. it would acknowledge her ability to do something she would rather have someone else do for her. which is true of most things. i know this girl and i know her well and every milestone she ever hit required a lot of time and assistance and prompting. at the risk of sounding incredibly over dramatic, this is the most painful thing in my life. to watch this girl at 16 completely fall apart over having to make her own oatmeal (with full support, and something she's done before), to listen to her screaming that no one understands her, that she is being pushed out of her comfort zone, that she doesn't want to grow up, saying she wants to swear and break something, is actually worse than physical pain. because it's heartbreaking. it's all the extreme emotions you can feel, but at once. love, anger, love, sadness, love, frustration, love, fear. but the love part is so hard to access. the love part actually seems to magnify the other emotions- because if i didn't love her so bleeping much i wouldn't care so much.
her goal is to outlast us. to push and push and fight and fight until we are so exhausted that we give in and she doesn't make the oatmeal. her goal is to retreat to her safe place- her room - with a world of her own: dozens of LPS toys with giant eyes who can do whatever she says and don't have facial expressions to read and tones of voices to navigate. with american girl dolls who look like friends with their long hair and their clothes and their known stories that don't change. with books that bring worlds that she can access with out rejection. and movies that sooth with their peaceful songs, their familiarity, constancy and 2 dimensionality. i wonder sometimes if that is the world that zoe wants to live in- a 2 dimensional world, because three dimensions is. way. too. complex.
i don't want to take those things from her. i don't want to force her to leave what she finds comfortable behind and demand she enter full-time into a world that i know as normal, but she finds terrifying. i hate that i can't fully understand life from her perspective. i can't feel or hear or see the world as she does- but i also can't change the world to fit into her comfort zone. she has to learn to adapt.
maybe that's part of why i love living in uganda. it gives me a tiny example of life from her shoes. of what it feels like to be on the outside. to struggle with the norms around me. to never really feel completely at home. to feel different all the time.
the problem with parenting all this is that unfortunately, i'm human.
i have a whole lot of other things going on besides being her parent. things like being a parent to three other kids, having a marriage, having a job, having the responsibilities of living, and taking care of, even, myself.
and those are just the external things. the internal parts of being human make parenting a kid with special needs even harder. and this is where the still comes in. to be honest- i get really tired of my life, and i love life. i struggle to not feel the past, and the future with her in each present moment. and in those moments in the kitchen when she's standing there unbrushed and barely dressed, yelling at me that she can't do anything, and i know that to get her to make oatmeal is going to make this go on for another hour (which is a reallllly long time), i become my worse self. i can hold it for the first 15 minutes. i can speak quietly, with encouraging words, i can offer understanding and support. but after that, when none of that works and she only escalates, unfortunately, i join her- worse self in full glory. and from that place- no oatmeal will be made, no strength will be built, no personhood will be encouraged- things only become destroyed.
mike came in the kitchen. of course the parent who hasn't just lived the past 15 minutes is always able to start calm, which can be highly annoying to the parent who is wanting to poke out their eyeballs, and for zoe, it provides another pair of ears to lead down her path of self-pity. so we took a five minute break.
mike told me that he knows. and he does. that it's incredibly difficult and painful and deep and hard and scarey and awful. and as he validated my herd of feelings i cried- because what else can you do when you are backed up against a wall and being smooshed by your life? then i spoke. all those things that i've spoken so. many. times. before. (still). i'm tired. it's unfair. i know she can do it. why can't she just try. what about the other kids. it's unfair to them. she monopolizes all our energy. i won't have her live in our house and play with preschool toys for the rest of her life. she needs to start to own it. we've done so much- it's her turn to try. what do we do?
he told me again that he knows and he held me. just like God does. God, who really knows.
so what do we do? the Indwelling said the answer is: yes. yes you just do it. yes it's hard and unfair and so is the world. yes it's exhausting and time consuming, but this is your life. yes- you love her as i love you even when you're fighting me and running away. yes love looks different at different times- this is one of those times when love is tough- but it still needs to be love, not anger, not reaction, not about you. (not about your life, your worth, your future, your guilt, your suffering).
when i went down to the kitchen she was there and i just held her and she cried. a long hard cry. i told her that everything she's ever done has gone down like this. her learning to roll over, crawl, and walk took hours and hours and years off from careers. it took pushing her out of each of those comfort zones. but i didn't leave her side. i waited. i put her back on her belly and rubbed her back while she screamed. i propped her legs underneath her and put my hand on her feet so she could push off. over and over again. and one day, she did it. i moved her doll up one stair at a time until eventually she could crawl up the staircase. somehow that was easier. she could cry, but not shout angry mean words at me. she could only cry- not pour out all the real frustrations of what it's like to be her. and back then i could believe that maybe, maybe once she'd gotten on her feet, things would get easier. but they didn't and now i know that.
it took another 30 minutes. it took some siblings calmly encouraging her, and the addition of chocolate and sprinkles and finally an LPS toy that could assist her in a 'cooking show'. it had to become a game, but she got it done.
what mike and i realized is how easy it is to avoid loving her like this.
her 'stillness' is contagious. there is a strong desire to retreat from the conflict that ensues from helping her with movement and change. it's way easier to make the oatmeal than deal with the external and internal logistics of getting her to do it.
but. love is hard. the right path is usually not the easy one. this needs to be a season of loving her with a gentle but consistent push. to walk with her through the next big stage of human development. we did baby to child, now it's time for child to adult. we need to create the space inside that will be required of us. we need to give lots of grace to her and ourselves and each other. we need to grow her identity without our identity getting in the way. we must hear the parts inside ourselves that suffer with this, and tend to them, so we don't let them compete with our parenting her. and we need to remember that there are the everlasting arms, sitting beside us and rubbing our backs, or propping our knees up under us and giving us a place to push off from. shedding a tear from that mixed up bag of emotions when someone you love is doing hard things.
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