and it's only 8:17

oh dear.
today did not go well. and it's only 8:17 am.

maybe it feels particularly bad because lately i've been doing particularly well. lately i've been managing my life by giving it up, by letting it go, by asking God to come on in and clean house. and it works so much better than when i'm grappling for control of my life with my sticky little hands.

but today, i guess i forgot.

lately, i've been reading a lot about what is underneath the 'rules'.  about not just how we are to live, but why we are to live that way. and it pretty much comes down to love, obedience and peace and joy.  Jesus said we are to love. everything else flows from this. if we love each other, really love each other, we wouldn't lie or cheat or steal or insult or manipulate or gossip or betray or kill or ignore each other.  and if we felt the love of others, really felt the love, we wouldn't over eat or over drink or over spend or hurt ourselves or isolate. and if we loved ourselves, we would come from a place of knowing our own value, of security, safety, and wholeness.  i think we can't love, really love well, anything including ourselves, until we understand that we are loved first. loved by God. and we are. but sometimes, i forget.

today, i think i forgot.

it's tuesday. we were rushing. the first to leave is mike, then zoe, then the other three.  zoe is, of course, the hardest. it's not her fault....or is it? we had eight minutes to go time. her last tasks- brushing her teeth and her hair- are upstairs tasks, and sending her upstairs is a great risk- a risk that she will never return. upstairs is where her toys are, and her brothers and sister, and pretty much everything more desirable then completing her tasks. and, if she decides to use the bathroom? forget it- she will miss the bus.

so today, at 7:02, i sent her upstairs to finish getting ready. now i know, after 15 years of getting her out the door in the morning, that if i really want her to be ready on time, i pretty much need to be at her side, but see, i don't want to.  i don't want to have to.  i want her to be able to do it on her own.  i want her to grow a sense of time.  i want her to have that internal clock that she lacks.  i don't want her disability to disable my morning cup of coffee.

at 7:06 i called from the bottom of the stairs, there was silence. doh.

i went up. she was in the bathroom, on the toilet, looking guilty, with her hands behind her back.

oh dear.

suddenly memories start flying at me from old, dark places. memories of her at age 9. memories of her in the bathroom, with stuff on her hands that shouldn't be on her hands. memories of sadness, anger, confusion, helplessness, hopelessness, and feeling very, very alone.

i asked her to show me her hands, which she did, and they were covered in spit.
i suppose i should have been relieved. but i wasn't.  what welled up in me was the opposite of love. it was fury. anger. confusion. and it was old, and dark.

this would have been a good time to shut the door and take a deep breath and decide that perhaps today, missing the bus might be okay.  that maybe in love, the right thing to do would be to try, really try, to understand. to be present for her. to accept her. to forgive her weird sensory things that i don't get. to let the big picture dominate. to realize that the bus doesn't really matter, 7:10 doesn't really matter, being late doesn't really matter- but her feeling loved and valued? that really matters.

but do you think i did that? no.

do you think those things even crossed my mind as options at 7:08? no. they didn't. there was a bus to catch and three other children to get up and ready.

so instead, i reacted out of a place of fear, wearing the mask of anger- because anger is easier. instead i opened that awful weapon on my face called a mouth and shouted at her. "you complete moron!!!" while throwing the hand towel at her. "clean that up!!!"  "what is wrong with you???"

oh dear.

there was no love in that. none. all i could think was that somehow she was punishing me. that she was purposely wasting time and doing things that she knew would make me mad, instead of choosing to do what she had to do.

when she came downstairs, she was muttering that she's an idiot and why was she even born, and i was still so mad that i told her to just be quiet and get in the car. something about the freezing cold air cooled me off and i asked her to please, for the love of God, tell me what she was thinking? why there was spit all over her hands???

"because there was too much spit in my mouth and i was on the toilet so i didn't know what else to do with it."

i'd like to say that i just stopped there and said i was so sorry and i get it and please forgive me.  but i didn't. instead i told her that she should have just swallowed her spit like everyone else does. that she needs to be more aware of time and tasks, and that i shouldn't have to worry about her doing things like this. i was basically asking her, to try to understand me. doh.

and then a piece of my heart broke.

it didn't break because of spit and not knowing what to do with it. it didn't break because she lacks any sense of time.  it broke because i forgot to love.  because my words and my tone, hurt this beautiful child, demeaned her, and caused her to question her very worth and value.  and my most important job as her mother is to do the opposite of this. to affirm her, as she is. to encourage her. to support her. to be her safe place in a world that won't ever get spit hands.

my heart broke at my complete failure to love.

when we got to the bus stop i told her that she wasn't a moron, and that i was sorry for yelling that, i told her i loved her and to have a good day (unlikely though, given that start).

"yeah right mom. adios!" and she slammed the door.

life is hard and messy, and i'm really good at messing it up. this is why i try to show up here and "out" myself.  so maybe someone will say, "holy crazy! at least i'm not as bad as that lady!"and then love themselves better. and maybe they will then show up and love other people better, even their challenging child or their hard to deal with boss, or their differently wired husband, or their confusing friend.

the phone just rang.  i was convinced it was going to be the school, telling me that zoe is incapacitated because of her mother's behavior in the morning.  but it wasn't.  it was mike, checking in.  telling me that i'm not that bad. reminding me of forgiveness. and renewal and grace.  i said 'thanks' but then asked him if his mother ever called him a 'moron'. and he said no, which i already knew, but that at least i didn't swear at zoe... (this time).

so that is where i am. where i begin. by saying i am sorry, and asking God and zoe and mike and the other kids, and maybe you, and even myself, to forgive me for not loving well. and then i give it up, let it go, ask God to come on in and clean house again.  but tomorrow morning i am going to get up 15 minutes earlier, have my coffee, and remember to love and be loved, before anyone else is up.

you're 10

you were born with your eyes wide open. your eyes, big and blue and unafraid.  minutes after you were born, you watched me while you nursed and you held my hand. i didn't know back then what would come of you.  what those first months and years would hold and mean and teach.  i didn't know back then what would come of me, either.

life is spent growing us. life is spent unknowing things. life is learning to let go of stuff, and people, and old ideas, parts of our past, and the belief that we control our future. in some ways it seems you already knew that.  you were born with old eyes.

i didn't know that day that i might have to let go of you completely, let go of 'normal' and 'expected', that i would live the lack of control.  i didn't know that i would feel held in the arms of God as i held you in my arms, and feel the tears of God while i cried.

the path we walked down together was unknown, lit by only a lantern, everything obscured except what was in our moment. it felt new and scarey and like we were the only people who had walked it before. but everyone's beginning is like this. our lives are like this. none of us know. we think we do, we think our dreams will come true, our expectations will be met, our ideas will blossom into our reality, we will arrive at where we planned to go.  but really, we are walking beside each other, holding our lanterns, unaware that there is someone next to us in the dark.

for your first few years we examined you.  we put you to sleep with medicine and let you be sucked into a giant magnet to see what was growing inside of your head, to be sure it was your brain and not fluid, or tumor.  we waited for you to do the things you were supposed to do, and we hoped and prayed that you would not do other things- like have seizures or headaches or projectile vomiting. we measured your head everyday while you watched me with those knowing eyes. eyes that somehow put me at ease. eyes that somehow seemed older than me.  we crushed and mixed up a pill everyday to mix with my milk so your brain could develop correctly even though your thyroid didn't work. and you took it no problem. eyes wide open.

i loved you deeply, but i learned to know that ultimately, you were not mine.  that you, like samuel in the bible, you had been given to God.  i learned in a hard way that you were a gift, that everyday with you was a gift- a gift to not take for granted- a gift that may leave me.  i held you tighter, but i held you free-er too. it's funny that we forget this when bad things don't happen.  with out sickness or loss, we forget the life in our life.  we forget how precious we are, the gift we are to each other.  hold on to that for a minute. feel it.  you are a gift.  i'm sorry that 10 years later, i forget...even though...even you.

you used to have a little bomber jacket and white blonde hair and baby teeth. you used to look up at me and say "mo' juice peeeezzzz".  you used to crawl around the kitchen floor in the morning finding and eating whatever was under the table. you were easy to read, you knew what you wanted- a bottle, or sleep, or food. things came easily for you, naturally.  you were ready for things before i was. i often had the feeling that you were waiting for me to catch up with you.

now you're 10.  now you are taller than my shoulder, you can pick me up and i can wear your boots.  you get your own breakfast, take your own shower, you can shovel out the car and start a fire in the stove. nothing about you is little anymore.  and that is awesome and awful at the same time.

these days see i myself all over you and that is the hardest part. i hear me in your voice- complaining too much.  i see me in your eye roll, in your messy handwriting, in your uncapped tube of toothpaste. i see me in the contradiction of your growing confidence and insecurity. i see me in your rush- your desire for the next thing- even when you don't know what the next thing is, even when you like the thing you are doing now.  i see me in your shape of your face, in your love of learning, but your impatience with what you don't want to learn.  i see me in your love of writing and the way you can tell a story, in your sense of humor and you awareness of the needs of others.

but you are becoming your own.  seeing me in you is both beautiful and dangerous.  i can hold you tightly, but i need to hold you freely too- to be you.  but really, you always were- you knew that, you were waiting for me to catch up.

happy birthday sweet jude.

i'll take autism over measles....or saying 'thank you' and meaning it

the other day i read an article in the huffington post called 'i know what causes autism', and after a brief moment of jealousy that i'm not one of those moms who gets to take the impossible challenges life has thrown at her and turn them into a blog worthy of the huffington post- i read it.  and it was really good.

i was expecting another (appropriate) commentary on the absurdity of people not vaccinating their children, because of the fear of their child being like my child. this topic has been in the news a lot now that we are seeing the unnecessary return of diseases that we had figured out a way to prevent.  i love how now random people are smarter than doctors and scientists, and opinions are more accepted than randomized controlled trials.  it's also funny how people talk about wishing there were a magic bullet to prevent cancer, but they can't see that someone once said that about infectious diseases, and immunizations are that magic bullet. but i'm not going to rant about getting your kids their shots, i am going to tell you what zoe said about it after she watched the news and asked me why people aren't vaccinating their children. i told her it's because they are afraid.

"afraid of what?" she asked.

"some people are afraid their kids might get autism."

her reaction was a surprise and an incredible joy to me.  her reaction was unprompted, unborrowed, and directly from her heart.

"well that is an insult to me and my kind! are they saying i'm no good? that makes me want to cry.  that is discrimination. maybe they should get to know someone with autism before they go around thinking that!"

i couldn't have said it better myself. and it wouldn't have meant as much coming from me. but it came beautifully from her own autistic mind.  it showed intellectual connection, it showed emotion,  and it showed self worth, and advocacy.

for people with autism and for those of us who love someone with autism, it raises very difficult questions about the worth of differently-abled people in our society which prides it self on non discrimination as a core value.  people are willing to risk death from preventable infections, and harm to others, because they are afraid that their lives might become like my life? that their perfect child might become like my imperfect one?

wow. ouch. zoe is right.

this is tough for me because i have wrestled and fought with her differences.  i have wished things would change or go away or at least get much easier, maybe a little closer to 'normal'. i definitely have  a love-hate relationship with zoe's differences.  i love her deeply, and i love the way that her mind works. i love that truth trumps all- so she speaks what others are thinking, she can't keep a secret or tell a lie. i love that she still finds humor and real joy in childrens books- 'olivia mooooves the cat, and brushes her teeth and mooooves the cat' - things that my other kids don't even notice because their minds are busy doing what typical minds do, go on to the next page, see how the story ends. i love that she can't help flapping her hands when she gets so excited.  i love that she answers the question on the IQ test "is milk white?" with "sometimes", even though she gets it 'wrong', she's actually right, because sometimes it becomes pink or brown when you add Quick.  i love that she can hear two notes and know what the song is.  i love that she remembers who gave her every single thing that she owns.

but there are other things that i hate.  i hate that it hurts her to brush her hair. i hate that she can't ride a bike and that every single thing she puts on is 'scratchy'.  i hate that she can't remember the order of steps to wash her hair unless she speaks them out loud.  i hate that she has no sense of time and is distracted by everything.  i hate that she can't sleep in a room with someone because she can 'hear them breathing'. i hate that she will likely unravel no matter where we are, if she hears a vaccum.

she is all of these things.
but so am i.
mine are just different.
so are yours.

we all have very loveable, endearing parts, and we all have things that drive even ourselves crazy. we say that people like zoe have 'special needs' and they do. but they also have 'special strengths'.  zoe lives her life in the moment she has been given. in the page of olivia, in the first note of a song that she will play again and again because it sounds good to her. zoe notices things that most of us rush right on past. dragonflies are as impressive as giraffes, moths as worthy as butterflies. zoe has no hierarchy of popular. she can sense who is real and who is not.  she doesn't care if you're the school janitor or the principle, you will be treated the same. she will salute anyone in any kind of uniform, which the guards outside of every house in uganda, loved.

but there have been and there are days when the special needs don't seem very special, instead they seem massive, and i want to poke out my own eyeballs in frustration and impatience.  there have been and are days when i cry because i feel the loss of things, little things like not buying jeans with my daughter, and bigger ones like friends children looking toward college.  there have been and there are days when i am so angry that she demands one on one parenting, when i have four kids.  there have been and there are days when i wonder why?  why me? why her?

and there have been days, when i wanted to fix her,  but i don't have those days anymore.

i am a praying woman. i am a person of faith. i am a person who believes that God allows things, even really bad things or hard things, but then stays with us while we suffer them.  i am a person who believes that we are allowed and invited to say anything to God and He or She can handle it, (because they're God.) so i pray a lot for zoe.  and i pray a lot for me.  mostly my prayer is HELP.  help me get through this day.  help her get through this shower. help her to not feel alone. help in general.

about three years ago i was in kenya at a christian medical conference. there was a time at the end of the week for small group prayer requests and usually i'm the first to raise my hand and even wave it around a little because i know zoe and i need a lot of help.  but this day, in this little circle of people, i didn't raise my hand.  i just sat there and when it came time for me to share my request i started to cry.  and i was crying because for the first time in about 10 years i didn't want to shout help, i wanted to say thanks. thank you God for zoe and for her autism. thank you for who she is, as she is.  not 'thank you for zoe, despite', not 'even though', but as she was- perfectly made.  made to hear and see the world differently and respond to it differently. made to reach people that i will never be able to reach because i'm trying to turn the page and get to the end of the story.  made to teach me something about humility and honesty, and stillness and moments, and reliance on God. made to teach me to question what is broken, and what is whole?

we want perfect, but nothing is.  we want whole, but life is broken, we look for answers but that can lead to more questions, we can grapple for control, but it feels better when we give it up. i've come to accept that life is pretty much impossibly hard, not just for zoe, but for me too. and that i can't do it alone, that i need God and grace and people to show up as His hands and feet.  but now, from that place of acceptance,  i can truly say, thank you, and mean it. i'll take autism over measles.

the fallow season

winter in new england is for me, kind of awful.  it's cold and bleak and barren. it's colorless and uninviting, and so for me, it's depressing.  i wonder why anyone would have settled here once the leaves fell off and the ground froze.  but here i am.  i am here. in winter.  in a season. plunked down and like much of life, asked to be still in it.  to wait. to listen.

i used to think that people grow up.  that we get to an age, a number of years, and we settle into ourselves and our lives.  that we know the routine, we've worked out our deal, we get it.  we've found our place in the world.  but i'm finding that isn't true.  that our lives are about change and seeking and finding and learning and unlearning and really discovering, continually, who we are and who God is and who other people are too. there is no endgame. no arrival.  i'm finding that there are no caps on suffering, and no limits on joy- that life is full of surprises and awakenings- that come in forms of goodness and hardness.

but there are some key things that are available all the time- through the goodness and the badness and the parts of life that just are what they are without needing a label. and those key things, those guarantees are Grace and Love.

grace: unmerited divine assistance given humans for their regeneration or sanctification; an
act or instance of kindness (the dictionary)

love: that thing we all crave and  spend our lives trying to get - through various healthy but often unhealthy ways, that thing we want to know that we are, that we want to share and give out, that we misuse all the time, but that we all have and if we could just open up and embrace it we could stop driving ourselves crazy and ruining things.  (me)

i like to look for God outside.  

i like to feel His presence in the warm wind and hear him in the leaves moving, and in the colors and the smell of the outside.  these days, it's hard to see life and hard to feel God in the way that i am used to.  it's just so cold.  there is just so much snow.  everything is white and gray. and life is up in the air.  kite strings. unsettled. we are displaced. we are wondering what's next.  we are a group of moving pieces. pieces that sometimes seem to be moving in opposite directions. all of this, in this bone cold place. a place of my history, and now my present reality, (at least for today).  all of this with out the broad smiles of home, with out the red dirt that i love and the constant sounds of birds and leaves, with out the smell of burning things. some days it feels like too much.   but somehow, in the new england winter, even though i feel blind to certain parts of God, i can hold on to somethings that don't change.  i can hold on to that truth that i am deeply loved, as i am, by the One who invented love. and so are you. and this is real. and when we accept it and turn toward it, it is life changing.  because how can it not be? I am loved- as i AM.  YOU are loved - as you ARE.  not when we're good enough, not if we're good enough, not if other people tell us we are loveable, not if we even feel it, or don't.  we just are- because God made you and me and like i can't help loving my kids- God can't help loving us.  not only that, but perfectly- that is the way that God loves, unlike how i love my kids, which is way imperfectly.  we are valued for who we are- in our own special, crazy, imperfect, learning and re-learning and trying way. 

sometimes, like these days, it gets old and i feel tethered. the kids want to go home. they keep losing there gloves (the mismatched ones from the used store).  they miss their dog, and their friends and their own beds, and not having to wear snow pants. and i am right there with them. 

but then comes the Grace.  it comes when i'm walking back from the bus stop in the morning and i hear a bird, and the sun is hitting the snow with early morning light that is still soft and gentle, not yet hard and glaring. it comes when i see zoe get on the minibus and ride to an amazing free public school with all sorts of services.  it comes when i see mike shoveling out the car beside the snow fort "eggloo" and i know that home is really where ever we are all together. it comes in singing the same songs in church as we do across the world and getting goosebumps, even if i'm the only one dancing in my seat. it comes in the generosity of family and friends taking us in, sharing homes and winter coats and sending sweaters.  it comes in the uninvited blessing of having a season of stillness.  

the fallow season is the longest here.  a time of dormancy. of the ground healing, preparing itself.  a necessary time before the planting, before the growing can happen. a time of regeneration, of restoring. but there is grace in this, when we enter a time for our ground to heal.  not glamorous, not pretty, full of roots and sticks and rocks and brown things. there is absence even. but out of this time comes the ability to produce. for things to sprout and bloom. for beauty and nourishment.  

so i will be still and wait. i will turn and sit with the Love- let it sink in and warm me.  i will look around, i will listen, i will pay attention and find the Grace.