last night i couldn't type because i had aloe covering my right hand, to soothe the rope burn that ran across my fingers, because i have a german shepherd that is still a puppy but weights more than i do. when i took him for a walk last night with my boys, things got a little crazy and i ended up with this friction burn that kept me from writing. unfortunately it didn't buy me enough sympathy to excuse me from cleaning up the cat pee on the rug. it killed! but it also taught me something.
because today it still hurt. it hurt enough that in the shower i could really only use my left hand to wash my hair, and that is hard to do. and that made me think of zoe.
i have taken long with out writing about zoe- not because things have been really good with her- and not because things have been so awful that i can't bear to write it- things have just been. as. they. are. as they tend to be. to have been. to remain. and there in lies the problem, or the trouble, or the pain, or the challenge, or all of the above. i've never run a marathon, but i would imagine that when you are on mile 16 or so, beyond the halfway point, but nowhere near the finish, that you would just be exhausted- but not really want to give a report on things. i would imagine you'd just want some water, and some distant cheering, but having a conversation would not be worth much. i could be wrong, i've never run a marathon.
but having a child with special needs, to me, feels like my entire life has been running mile 16 over and over again, f.o.r.e.v.e.r. it's like mile 16 but with no promise of only 10 more miles. it's mile 16, but you've actually gone way more than 16 miles- you've gone for years- for me now 14 of them. and you are exhausted. and you don't know how to pace yourself, or in what context to place your life. it's not a race- that is obvious, but it is linear- there are goals, finish lines to cross- or so one hopes.
i thought of zoe in the shower for two reasons. one: she still struggles with taking a shower- all the steps, the opening of the shampoo bottle, the strength needed to effectively wash her hair, the overwhelming feeling of discomfort for her with scrubbing her scalp, soap in the eyes, etc. and two: she often forgets she has two hands. really. sometimes i will watch her struggling to make her bed (after being asked 1,000,000 times and finally standing in her room to make sure she'll do it) and she will be struggling because she is only using her right hand.
i will say, "zoe- remember you can use your left hand too."
"ARRRGGGGHHH!!! i ALWAYS forget!!!!!" she'll say.
and then i will be humbled again, and feel horrible that i've been annoyed with her, because if i spent my life only using one hand to make my bed, you'd have to ask me at least 1 million times too. but it is so easy to get annoyed with her because i can't imagine forgetting i have a left hand. it was all i could do in the shower today to stop forgetting to not use my other hand. i have no idea what it would feel like to go through life being that disconnected from your body, almost imposing your own limits when they don't need to be there, she has two hands that work, but forgets she does- how unbelievably frustrating her days must be!
so this morning, i was reading buechner on faith and prayer, specifically, the relationship between faith and prayer. now i think of myself as someone who doesn't struggle with faith. i struggle with basically everything else- and i do mean everything- but believing in God and trusting in God- i don't usually wrestle with. but when i was reading about prayer and healing and asking for things from God, i could clearly see the limitations of my faith. i don't tend to pray boldly. i tend to pray cautiously, politely, like in an oliver twist "please sir may i have some more porridge?" way.
buechner wisely pointed me to that part in the gospel when Jesus heals the kid with what sure sounds to me like epilepsy. and i think that maybe this part of the bible was put in there just for me, today, because the father of the kid, isn't even praying- but actually talking to Jesus in person- and he basically says, "please sir, if you don't mind and if you are able, could you maybe try to heal my son?" this guy speaks his doubt. he appologetically throws it out there-not boldly, not taking risks really, just hoping for some small something.
that totally resonates for me. "so gosh, i know, there are worse scenarios, and i do know that zoe is a true gift from you, but if you have a chance, maybe, could ya, just give me a bit of patience today, because asking you to actually MAKE HER BRAIN WORK SO SHE REMEMBERS SHE HAS TWO HANDS (WHICH, P.S. YOU GAVE HER) might be too much."
i get it. i do.
but what does Jesus say? He says, if you can believe, all things are possible if you believe. and this is where my problems start. ok but REALLY? ok but as a doctor, i HATE when people tell their loved ones that if they had enough faith they would be cured. because i have seen the fall out of this kind of talk. but Jesus doesn't say all things will happen. or depending on the level of your believe you will be healed. He doesn't even talk about healing here- he says THINGS and he says POSSIBLE. and he says CAN and he says IF. He acknowledges the challenge of this- the struggle- the hardness of believing.
but the best is what happens next. the father cries out with tears, "Lord i believe, help my unbelief!" and that was enough. i'm sure he had tears. i'm sure he was crying because in the moment when he was facing a possible solution, a cure, an end to mile 16, to this life long struggle for his son, it came down to his belief. doh!!!! so what does he do? he speaks his unbelief. he asks for help in his unbelief.
and i'm kind of thinking, 'that's allowed?'
YES. and it's like everything else that Jesus says. "I want to help you, come." but i can't, i've done horrible things! "come." but i'll just keep trying to do it all right, to be a better person. "how is that working out? no, I got it, come." bring me your mustard seed size faith- and i will move a mountain. bring me even your begging to have any speck of faith at all- and all things are possible.
wow.
that is what i'm left with. wow.
so what am i doing praying for specks of change, drops of patience, tiny 'don't mean to disturb' improvements? what am i afraid of? i'm afraid it won't work. i'm afraid of mile 16 forever. so i pussy foot around, i assume that i've done something to deserve, i think who am i to ask? i shyly stumble through our life on a shoestring budget of faith, when God says ALL things are possible, and then gives me permission to ask for help in believing that.
and that is what i'm going to do. "please reconnect zoe's brain- i believe you can- help my unbelief!"
"you said all things are possible, i want us to move past mile 16, help my unbelief!" "i believe she can know she has two hands. help my unbelief."
thank you dog for giving me rope burn so i could feel a small bit of what it must be like to be zoe. thank you buechner, for reminding me that all things are possible. thank you Jesus for hearing my doubt, for listening through it, for joining me and holding me and helping me to believe that with you all is possible. so maybe mile 16 won't feel like mile 16 forever.
because today it still hurt. it hurt enough that in the shower i could really only use my left hand to wash my hair, and that is hard to do. and that made me think of zoe.
i have taken long with out writing about zoe- not because things have been really good with her- and not because things have been so awful that i can't bear to write it- things have just been. as. they. are. as they tend to be. to have been. to remain. and there in lies the problem, or the trouble, or the pain, or the challenge, or all of the above. i've never run a marathon, but i would imagine that when you are on mile 16 or so, beyond the halfway point, but nowhere near the finish, that you would just be exhausted- but not really want to give a report on things. i would imagine you'd just want some water, and some distant cheering, but having a conversation would not be worth much. i could be wrong, i've never run a marathon.
but having a child with special needs, to me, feels like my entire life has been running mile 16 over and over again, f.o.r.e.v.e.r. it's like mile 16 but with no promise of only 10 more miles. it's mile 16, but you've actually gone way more than 16 miles- you've gone for years- for me now 14 of them. and you are exhausted. and you don't know how to pace yourself, or in what context to place your life. it's not a race- that is obvious, but it is linear- there are goals, finish lines to cross- or so one hopes.
i thought of zoe in the shower for two reasons. one: she still struggles with taking a shower- all the steps, the opening of the shampoo bottle, the strength needed to effectively wash her hair, the overwhelming feeling of discomfort for her with scrubbing her scalp, soap in the eyes, etc. and two: she often forgets she has two hands. really. sometimes i will watch her struggling to make her bed (after being asked 1,000,000 times and finally standing in her room to make sure she'll do it) and she will be struggling because she is only using her right hand.
i will say, "zoe- remember you can use your left hand too."
"ARRRGGGGHHH!!! i ALWAYS forget!!!!!" she'll say.
and then i will be humbled again, and feel horrible that i've been annoyed with her, because if i spent my life only using one hand to make my bed, you'd have to ask me at least 1 million times too. but it is so easy to get annoyed with her because i can't imagine forgetting i have a left hand. it was all i could do in the shower today to stop forgetting to not use my other hand. i have no idea what it would feel like to go through life being that disconnected from your body, almost imposing your own limits when they don't need to be there, she has two hands that work, but forgets she does- how unbelievably frustrating her days must be!
so this morning, i was reading buechner on faith and prayer, specifically, the relationship between faith and prayer. now i think of myself as someone who doesn't struggle with faith. i struggle with basically everything else- and i do mean everything- but believing in God and trusting in God- i don't usually wrestle with. but when i was reading about prayer and healing and asking for things from God, i could clearly see the limitations of my faith. i don't tend to pray boldly. i tend to pray cautiously, politely, like in an oliver twist "please sir may i have some more porridge?" way.
buechner wisely pointed me to that part in the gospel when Jesus heals the kid with what sure sounds to me like epilepsy. and i think that maybe this part of the bible was put in there just for me, today, because the father of the kid, isn't even praying- but actually talking to Jesus in person- and he basically says, "please sir, if you don't mind and if you are able, could you maybe try to heal my son?" this guy speaks his doubt. he appologetically throws it out there-not boldly, not taking risks really, just hoping for some small something.
that totally resonates for me. "so gosh, i know, there are worse scenarios, and i do know that zoe is a true gift from you, but if you have a chance, maybe, could ya, just give me a bit of patience today, because asking you to actually MAKE HER BRAIN WORK SO SHE REMEMBERS SHE HAS TWO HANDS (WHICH, P.S. YOU GAVE HER) might be too much."
i get it. i do.
but what does Jesus say? He says, if you can believe, all things are possible if you believe. and this is where my problems start. ok but REALLY? ok but as a doctor, i HATE when people tell their loved ones that if they had enough faith they would be cured. because i have seen the fall out of this kind of talk. but Jesus doesn't say all things will happen. or depending on the level of your believe you will be healed. He doesn't even talk about healing here- he says THINGS and he says POSSIBLE. and he says CAN and he says IF. He acknowledges the challenge of this- the struggle- the hardness of believing.
but the best is what happens next. the father cries out with tears, "Lord i believe, help my unbelief!" and that was enough. i'm sure he had tears. i'm sure he was crying because in the moment when he was facing a possible solution, a cure, an end to mile 16, to this life long struggle for his son, it came down to his belief. doh!!!! so what does he do? he speaks his unbelief. he asks for help in his unbelief.
and i'm kind of thinking, 'that's allowed?'
YES. and it's like everything else that Jesus says. "I want to help you, come." but i can't, i've done horrible things! "come." but i'll just keep trying to do it all right, to be a better person. "how is that working out? no, I got it, come." bring me your mustard seed size faith- and i will move a mountain. bring me even your begging to have any speck of faith at all- and all things are possible.
wow.
that is what i'm left with. wow.
so what am i doing praying for specks of change, drops of patience, tiny 'don't mean to disturb' improvements? what am i afraid of? i'm afraid it won't work. i'm afraid of mile 16 forever. so i pussy foot around, i assume that i've done something to deserve, i think who am i to ask? i shyly stumble through our life on a shoestring budget of faith, when God says ALL things are possible, and then gives me permission to ask for help in believing that.
and that is what i'm going to do. "please reconnect zoe's brain- i believe you can- help my unbelief!"
"you said all things are possible, i want us to move past mile 16, help my unbelief!" "i believe she can know she has two hands. help my unbelief."
thank you dog for giving me rope burn so i could feel a small bit of what it must be like to be zoe. thank you buechner, for reminding me that all things are possible. thank you Jesus for hearing my doubt, for listening through it, for joining me and holding me and helping me to believe that with you all is possible. so maybe mile 16 won't feel like mile 16 forever.
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