i started the day writing about quail. about the extra provision of God to the isrealites in the desert and how there can be seasons of not even seeing the quail because we are pretty unhappy about being in the desert. so unhappy that we see provision as an expectation. so unhappy that quail looks like a lot of work and a reminder of where we are, which is in a place where there is no fast food- pre-prepared anything. i was hoping i would land somewhere good at the end of writing as often happens- but i'll tell you the truth....i've landed right back in my life. and to be honest, my life is the last place i want to be right now.
i'm pretty sure that the term 'special needs' was invented by someone who didn't have a child with them and was an eternal optimist. or that 'special' stands for 'Some Particularly Extra Challenging Insufferable and Long lasting' needs. those are the needs we are talking about.
i'm writing this here because i think there are a lot of parents out there who may feel this stuff and never say it. they also may feel this stuff somewhere inside but not allow themselves to even breathe it into a thought- because it feels like betrayal. betrayal of the darkest kind.
the feeling is so convoluted and distorted and sharp and pointy. it's everything all mixed together- it's sorrow and anger and love and hopelessness and hope and exhaustion and fear and poignancy and blessing and terror. it's loss and forever trying to let go. it's acceptance and forever trying to accept. it's hours and hours of tears and what if's and why didn'ts and what now's. it's regret. it's intense guilt. it's lack of understanding. it's ugly and beautiful and awful and good. it's real. too real. it's heartbreaking again, and again, and again. and it doesn't stop. it doesn't stop.
i know that 'special needs' looks like a million things and i'm only looking at one part. i'm looking at autism. and i know that autism looks like a million things and i'm only looking at one girl. but it's my girl. i'm looking at and living with someone who sees and feels and hears and experiences things in a completely different way than i do. it's like living with someone who speaks a different language but neither of you can ever learn the others tongue. you can sign and point and try but real communication is extremely hard.
zoe is smart enough to know that she is different and that makes her feel very alone. and people who are alone often get depressed and people who feel the world differently often get anxiety. and depression and anxiety make everything worse.
being her parent is probably not as bad as it feels to be her- except that you'd rather suffer anything than watch your child suffer at all. this is part of the problem- i feel like i feel it all for both of us.
in the US i was a palliative care doctor. and i taught palliative care to medical students and residents. and a lot of times when i would teach, students would express the fear and frustration of not knowing what to say to people who are at the end of their life. we talked a lot about not saying but being. about being present. about non-abandonment. about never giving up on someone. of being brave enough to walk with someone to the end. because no one wants to feel alone and especially when things are scary. and no one wants to be given up on.
i just went into her room. she'd had a meltdown about an hour ago- over mike taking away her bambi plush toy because she was being mean to her sister. i knew she'd be in her bed. i knew she'd be sleeping, and i was right. so i climbed in bed with her and gave her a huge hug. she told me to get out. i told her no. she said why. i said because i want you to know that you're not alone.
she asked if was crying and i said kind of. she said why. i said i'm sad. she asked if i was sad for her and i told her i was sad for both of us. she asked if i was giving up on her. i told her never.
that's all it can be sometimes. be together in it. the unknown terrifying thick of it and be honest and real and try. it's about the same things we all want when life feels over in someways - we want presence. we want non-abandonment. we want bravery and belief and truth. we want to never be given up on. and that part i can do. at least for today.
thanks for listening.
i'm pretty sure that the term 'special needs' was invented by someone who didn't have a child with them and was an eternal optimist. or that 'special' stands for 'Some Particularly Extra Challenging Insufferable and Long lasting' needs. those are the needs we are talking about.
i'm writing this here because i think there are a lot of parents out there who may feel this stuff and never say it. they also may feel this stuff somewhere inside but not allow themselves to even breathe it into a thought- because it feels like betrayal. betrayal of the darkest kind.
the feeling is so convoluted and distorted and sharp and pointy. it's everything all mixed together- it's sorrow and anger and love and hopelessness and hope and exhaustion and fear and poignancy and blessing and terror. it's loss and forever trying to let go. it's acceptance and forever trying to accept. it's hours and hours of tears and what if's and why didn'ts and what now's. it's regret. it's intense guilt. it's lack of understanding. it's ugly and beautiful and awful and good. it's real. too real. it's heartbreaking again, and again, and again. and it doesn't stop. it doesn't stop.
i know that 'special needs' looks like a million things and i'm only looking at one part. i'm looking at autism. and i know that autism looks like a million things and i'm only looking at one girl. but it's my girl. i'm looking at and living with someone who sees and feels and hears and experiences things in a completely different way than i do. it's like living with someone who speaks a different language but neither of you can ever learn the others tongue. you can sign and point and try but real communication is extremely hard.
zoe is smart enough to know that she is different and that makes her feel very alone. and people who are alone often get depressed and people who feel the world differently often get anxiety. and depression and anxiety make everything worse.
being her parent is probably not as bad as it feels to be her- except that you'd rather suffer anything than watch your child suffer at all. this is part of the problem- i feel like i feel it all for both of us.
in the US i was a palliative care doctor. and i taught palliative care to medical students and residents. and a lot of times when i would teach, students would express the fear and frustration of not knowing what to say to people who are at the end of their life. we talked a lot about not saying but being. about being present. about non-abandonment. about never giving up on someone. of being brave enough to walk with someone to the end. because no one wants to feel alone and especially when things are scary. and no one wants to be given up on.
i just went into her room. she'd had a meltdown about an hour ago- over mike taking away her bambi plush toy because she was being mean to her sister. i knew she'd be in her bed. i knew she'd be sleeping, and i was right. so i climbed in bed with her and gave her a huge hug. she told me to get out. i told her no. she said why. i said because i want you to know that you're not alone.
she asked if was crying and i said kind of. she said why. i said i'm sad. she asked if i was sad for her and i told her i was sad for both of us. she asked if i was giving up on her. i told her never.
that's all it can be sometimes. be together in it. the unknown terrifying thick of it and be honest and real and try. it's about the same things we all want when life feels over in someways - we want presence. we want non-abandonment. we want bravery and belief and truth. we want to never be given up on. and that part i can do. at least for today.
thanks for listening.
