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.