control? let it go

i just found myself researching affordable colleges. the problem with this, is that my college bound kid is in the 6th grade. this is so not about preparation and proper planning, this is about me feeling out of control.

we were invited to a newish friend's house for swimming and lunch. it was going to be a chill afternoon with just our family and her and her husband.  i knew it would be a good thing for zoe- not too much stimulation, not too many people, not a lot of noise, not a lot of expectations.

lately i've become very lax about letting zoe stay home. if there are going to be a ton of people, or it's a new place with new people, or it's loud, or even if she's already done a social event for the day, i will oblige her and let her stay home. but this was a 'safe' event. and it was the only event for the day. and she missed cookie selling and bible study last night - so in my book, there was no excuse.

she didn't want to go. she was on her bed, folded in half like a paperclip, watching a show on her computer. "i can't go! i can't handle it! let me stay home!"

pause.

this right here is the dilemma of my life. the dilemma of having a child with special needs. because by far the easiest thing to do is say, "okay" and walk away. and that is also, honestly, what i wanted to do. it would mean an entire afternoon with out sticky thoughts and with out long side conversations about her disability and with out the repetitive need to appease her with those comments that feel so fake but somehow make her feel in control when she's clearly lost to herself. comments like "thank you for reminding me of those other choices, yes one choice is going to the bathroom if you have to go", or extra niceties that seem to settle her, "zoe, do you mind if i get myself some water? you don't? oh thank you!" but the dilemma is: do you do the easier thing? or the harder thing and challenge her to face the world and then risk the fall out? do you chose 'safe' or do you chose challenge, and support her through the challenge? do you let her take easy or do you try to grow her?

and then your mind goes back to all those places. and you convince yourself that if you hadn't taken that year off and pushed her to crawl, she would probably still be immobile, sitting on the ground asking for everything to be brought to her. you convince yourself that you do know what's best, that she has some anxiety but that anxiety is not really 'legit' and once she gets there she'll see that and have fun. you feel badly about not having family time and guilty that it's easier to not bring her, and so you muscle up with her kindle in one hand and an LPS in the other, and you force her to go.

and then you pay for it.

it started the moment we insisted she come and it persisted until we got home 5 hours later. in between she pulled all her greatest moves. she jumped in circles and flapped her hands, she screamed (literally), she threw her shoes (crocs, but still), she cried, she required several long one-on-one 'conversations'  with one parent, then the other, she didn't come to lunch, and the only thing that settled her down was watching 'go diego go' on their laptop.

"see! i told you i couldn't handle it!" she says. here comes the next dilemma. is this because she is autistic and right? or is this because she's a bratty 17 year old who just wanted to watch her show? HOW DO YOU KNOW?

i know enough about autism (although i apparently forget it often) to know that she didn't 'mean to' unravel to this extent. that her behavior was coming mostly from a place of feeling unsafe and for zoe, feelings are facts. she can't untangle from them. if her internal system screams 'danger' it doesn't matter what the reality is, she responds in high threat mode. the additional problem is, that i'm human. and i'm on the more human end of the human spectrum. i technically 'know' that getting angry at someone in high threat mode doesn't work, in fact, it makes things worse. reverting to pre-school cartoons is what works.

the human part of me really hates this. the human part of me wants her to live in my reality. wants logic to work, not diego. wants a nice family afternoon with a friend at her pool with out all this. but the mom part of me saw her sitting on the couch watching diego and my heart ached for her. no one wants to throw shoes and yell. no one wants to feel out of control. not her. not me.

perhaps i put her in an impossible situation. i took someone already feeling out of control (for whatever reason) and made them go somewhere they didn't want to go, exacerbating their out of control-ness. the problem is leaving her home alone folded in half like a paperclip all day feels terrible and reminds me that most of this is out of my control. but forcing her to leave her bedroom and bringing her on a family event, is not going to cure her. it's not going to make her world less threatening. it's not going to fix a broken family dynamic where she she dominates a lot of life.

it comes down to me feeling out of control. thus the frenzied college search 4 years too early. and this is where i have to be careful.  is this my psyche trying to 'fix' things? i have a college application age kid who has only finished 8th grade. am i trying to do what i would be doing if my life was like i thought it was supposed to be? am i pushing jude to make up for zoe? am i grappling for 'normal'? and am i struggling to find something that feels like control?

that's messed up.  that's where there real damage can come. so i needed to pause. to x out of that website and to let myself feel the sucky parts of the afternoon and the wonderful parts of it.

henry nouwen says that brokenness isn't beautiful, it's the compassion around the brokenness that's beautiful. 

so i pause. to look at it all. and to hold compassion. compassion for her. compassion for my other kids. compassion for our friends who put themselves in places of discomfort because of our situation. compassion for myself. and again, and most of all, compassion for her.

verklempt

i must admit, i am verklempt, and i get to say that because i passed a facebook 'test' that said i was 100% jewish after answering 10 questions. i owe that to all you mensches out there who taught me well- (Frank and Coris families- you know who you are).

i am verklempt because of the response to the picture i posted of zoe yesterday. zoe all dressed up for the tim tebow foundation event- "a night to shine". a night for kids with special needs to dress up, walk down the red carpet and be crowned queen. to be not just accepted but celebrated - as you are- beloved. God's beloved child. as she is, as i am, as you are.

 
















the love and care that came out of people from her entire life and even from my entire life was overwhelming. it was over 150 "loves, likes" and over 30 comments of love and support. people who have known me since i was 5, people who have known her since birth, people who have worked with her, taught her to read, taught her to hike, taught her to listen inside and know herself. people who have prayed for her and with her and me. people who have stuck by her, who believe in her, people who have told her consistently that she is valuable and beautiful and capable. people who don't avoid her differences but welcome them. people who have helped me up off the floor of my life, who have given me hope, who have just listened, who have cried. people  who have invited her into their lives and showed their own children that differences aren't scary or to be avoided but included and learned from. people who only know her story, my story from reading about it here. people who zoe has inspired.


















the list of names is like a collage of our lives- people i haven't seen in years, people from all over the world, people i haven't even met, and people i see everyday. it reminds me that we are in each other lives. we touch each other more than we know. we matter to each other. and we have such an opportunity to help each other and be less alone. it also reminded me that while sometimes our belovedness can be lost behind special needs fronts, so can our loss of belovedness get lost beneath our non-special needs fronts.

sometimes we look like we must feel our worth because we look good, or we at least look "normal". but we so often don't feel our worth. we so often loose our awareness of ourselves as beloved- as we are- because inside, we feel and see our own handicaps that mar our believe that we are loveable.

i've written before that my two fears as a child were that God would "make" me be a missionary, and that God would give me a child with special needs. hahaha. well, here i am with both now true.  why did i fear these things? safety. that is why. one, the missionary thing, was about fearing being in dangerous places, places with less security, less control, more risk. the second, was also about safety and control.

as a child i had a 'bleeding heart'. i felt for those who were different. i thought i was empathizing. that i was compassionate, but what i felt was pity.  i was treating people with disabilities not like they were like me, but that they had my sympathies because they were not like me. i'm so ashamed to write that, but it's true.

to pity is to feel sorry for or compassion for someone suffering.

why was i assuming that people who may look different or be differently-abled, are suffering? and was i assuming that all those with an intact body, clear speech, a smooth gait and no intellectual challenges are not suffering? 

i think my pity was about my own shame and my own fear. 'what if someone sees how disabled i feel on the side?' what if i couldn't hide it, and my challenges or weaknesses or differences, were out there for all to see the moment i entered the room?'

i saw people with differences or special needs as fully exposed and that was terrifying. as i've done a lot of internal work over the past few years, i can see how much of me i hid that i believed was unacceptable. how i picked through the parts that i would show, and tucked away the parts that brought me shame. what if i didn't have that option? how scary is that.

having zoe has changed that in me. i don't pity zoe.  i have moments where i feel sad with her, when i hear and see her frustration and i so wish i could take it away. but i also have moments when i feel a tinge of sadness about something in her that she is not sad about- about her shoulder that sticks up and she can't put down, or her limp when she walks. and what i've learned in those moments is that they're about me not her. that tinge comes from my deep and often hidden insecurities - my interpretation of how i would feel if it were my shoulder and my limp. it gives me an opportunity to pause and inquire inside what parts of me are afraid of exposure? it gives me the chance to reflect on my brokenness, and to see myself and her in a different light. a light that shows we are the same.

some of the most beautiful  or whole looking people, if turned inside out, would look empty or crippled. and some of the most scarred people turned inside out would blind us with beauty. it speaks to our bodily limitations and the possible freedom of our souls. we miss the point, we get it wrong. we look at the frame and miss the artwork.

so God, who knows what is best for me, gave me the gifts of being a missionary and having a girl named zoe. the gift of seeing the world differently and learning to see people differently. to see wholeness and brokenness differently. to let go of safety and control and trust Him. 

but now i'll stop the long speil and the kavetshing and thank all of you menshes for your love and support and bid you shalom.

the camel's back

yesterday i lost it. not out loud. just inside.
it was zoe. again.
it was not that big of a deal. not that out of the ordinary. but it was a straw breaking moment for me.

it was 1 pm and she still hadn't brushed her teeth. it's not that her delayed brushing is this horrible thing or the end of the world - it's that her reaction to my asking became that. something minor and simple, something that should be a regular small part of her day- it becomes this massive monster of a thing.

let me explain the straw-breaking-the-camel's-back-ness of having a special needs family member. the camel's back is perpetually full. battened down. layer after layer. no more room in the inn full. it's packed with all the little holding of things together. all the accommodations that everyone makes all the time. all the put up withs. the things you overlook, the exceptions, the things tolerated that you wouldn't tolerate in anyone else. it's packed with the emotions that go with this. the grief. the fatigue. the gearing up for each something that you know will likely cause a meltdown. the asking of yourself, again, 'do you have it in you', and knowing that the only answer you can give, that you have to muster up, is 'yes', even if you don't. those are the bags on the camels back.

so sometimes it just takes something so small as the tounge sticking out, yelling 'i hate you! no one knows how i feel, can't you see i'm struggling?' refusal to brush teeth in mid-afternoon, that breaks you.

yesterday breaking me meant i indulged in a 30 minute internet exploration of housing options for autistic young adults. i let myself go there. i let myself feel that possible freedom that could come from not living with her. i told myself if things get too bad. if it becomes too impossible. if the other kids are suffering- there could be options.

to be honest, sadly, there aren't many. and the ones that are, are super expensive and located on the other side of the world. i just wanted to know what was out there because sometimes the answer to that internal, daily question of 'do you have it in you' is a resounding 'no'.

today i got up early and prayed. i exercised and mike helped with her morning routine. i let the day be full of accommodation and overlook, and inclusion. she spent the day with me, not off in her room, but next to me.

there was a moment when we were eating lunch, when i was reminded again of why i love this girl so much. on the table was a tiny, lego dog belonging to her brother. zoe loves tiny things so she was holding it while she ate and when she was finished looking at it, she carefully put it on the table and walked it across to join the other lego pieces. she didn't pick it up and move it, she animated it silently to herself, somehow respected it's toyness. maybe that makes no sense to anyone else but me, but it was enough. it was her being herself. her uniqueness on display. her attention to the things that matter to her. it was like i could see into her world for a minute and i loved that.

tonight i found her lying on her bed. i went in and lay beside her and rubbed her back. i could feel the knotted muscles and the curve of her spine and her left shoulder raised and tucked wing-like by her ear. i remembered rubbing her back when she was just a baby, and a little girl and wondering what life would feel like in her body- from her skin. wondering what her experiences would be? what would challenge her, pain her? what would break her heart.  i felt such a deep love for her and i wondered why it can be so hard to forget. to get lost in the bags on the back of the camel. to get lost from my perspective and forget her personhood. tonight, it broke me in a very different way. it was powerful. it was beautiful.

i began to write instinctively on her back, ' i-l-o-v-e-y-o-u'. she said, 'i know you just wrote that you love me, why?' 'because i do!' i said. and i told her. all those reasons - those completely special zoe reasons- her humor, her trying, her toy dog walking across the table, her expressions, her putting up with my failing to see her as she sees herself, my failing to know her behind and beneath all those camel sacs. and as i lay there rubbing her back, all i could think was that i would never, ever want her to go away. that i wouldn't want to miss out on really knowing her-and these moments- these little times that make the weight of the baggage lighter. that make room from more straw.

sacrifice

i used to write a lot. that was 6 years ago. i would sit on my back porch at 5pm, with a cold glass of white wine, listen to pandora and i would write. my kids were 3 and 5 and 11. the homeschool day with zoe was done. the boys had had their naps, eaten their snacks and everyone would play outside or sometimes watch 'noggin', which was fine with me and far enough away from the porch that i didn't hear it. i would run here to write. for solace. i would write because i had a lot to say. i would write because i needed to. i would write because i could.

i. miss. that. hour. truth be told, i miss that glass of wine and i miss pandora's music. i miss that porch and those giant water oaks that shaded it.  i miss those ages when people didn't have 'devices' and didn't talk back and came to me for a hug not with a request for something else to eat. i miss not having to run back and forth to school to pick up kids from sports and play practice. i miss not having house help and not having guards- the spaciousness that comes from just me and my kids.

that hour was a time for me to breathe. to remember. to appreciate. to make lemonade with life's lemons.

right now, i am in the house alone. completely alone. it happened accidentally and it's fantastic. i can't remember the last time i was completely alone, but in sitting here alone, i have realized how much i have missed it. i also realize how constantly noisy my life is.

last sunday the sermon was on sacrificial giving. primarily financial giving. about tithing and giving to others. it was a challenge to think about what sacrificial giving would look like. living in africa, we are surrounded by opportunities to give. we are surrounded by need. my perspective of 'enough' is in comparison to 'not enough', not in comparison with 'more than enough'. we are constantly bombarded with people who have less than we do, and with the knowledge that one latte is someone's daily wage. it's a hard thing to live with. we are all called to tithe and we are called to give on top of that. we do the best we can. we try to listen to the Spirit and be obedient. i'm sure it seems schizophrenic at times, but for me the greater challenge is not having a hard and fast rule about extra giving but inquiring of God and listening. we are also missionaries. we've given up some things to come live here, there has been sacrifice, and people are making sacrifices to support us. so what do we do with sacrificial giving?

i began to pray about it. and as usual, God had a bunch of good things to say. He reminded me that it's not about my money, it's about my heart.  it's about detachment from things. things that i may cling to. it's about trust- and trusting Him not myself to meet my needs. it's about living intentionally not fearfully or defensively.

so i asked if He could please be more specific and as i reflected on what i'm attached to or what i crave and cling to, for me it's not money, it's time. He asked me to look at how i could sacrificially give my time.

now my kids are 10, 11 and 17 with special needs. and there is another one who's 7. now they are big and the house is smaller and they take up a lot of room and a lot more energy. they have these amazing opinions about everything- all of which must be shared- even their opinions about me (not usually asked for). they want to tell me about every single dream they ever had in great detail, they want to share each minute event in their plants vs. zombies game, and they want to recount every tv show they've ever seen, and quiz me on the ages of various actors. honestly, i love them, but 'i don't care!'.  it's painful! they still give hugs but there is a lot more asking for another bowl of cereal or a ride somewhere. but for me, mornings have become the worst. i stumble out of bed after jude has woken me and before i even have coffee i am immediately expected to listen to three people telling me there is NOTHING to eat, and asking the location of lost uniforms for the game that day, or help with a costume for 'spirit week' "but what am i going to doooo? i have to leave for school in 15 minutes!" (i don't know why didn't you figure that out last night when i asked if you had everything ready, instead of yelling 'of course i do!' when you clearly didn't). the noise of life.

sacrificially give your time. give it to Me. give it to them. that is what God said and these days i'm all about obedience because i've tried the other way and it doesn't work. so today i got up at 5:30. that's an hour and a half earlier than usual. i had coffee before anyone was awake. i got myself ready for the day, read and prayed and watched the sun come up- in silence. i figured out breakfast and lunches before anyone was awake. i was totally ready for the chaos- uniforms, spirit week, bring it people! and they did. but it was fine. it was calm (er). it was an opportunity for true giving and in doing that, i was given the gift of stillness, of that sunrise, of a quiet cup of coffee.

people grow and life happens and sacrifices look different at different seasons as i cling to different things and then am reminded again, of the letting go of them. in the sacrifice, the release, is the freedom. and maybe in starting my days like this- i will somehow find my way back to here. back to the porch at 5pm with a glass of wine, beside the banana plants, with my now big children coming and going. to breathe. to remember. to appreciate. to make lemonade with life's lemons.