the great divide

sometimes it's just too hard to write.
sometimes it's just too hard to feel all the feelings that surround zoe. (my name means 'life' in greek). it's like a metaphor. i mircro-scape of how hard life is. and when i say hard, i mean deep and rich and intense and painstakingly beautifully hard. hard in a way that i would cut off my arm for it to be easier for her, but wouldn't change her for the world. hard in a way that i feel like i'm watching out for her life more than living my own sometimes. hard like i find moments when all my muscles are tightened and tensed and my breath is held and i have no idea why and i have to remind my self to let go.

there is just so much there. so much love. so much ache. watching so much struggle. seeing growth, yes, but also seeing the reality perhaps more acutely after a month of separation.

most of her time now is spent with her 'brain cousins'. other kids with autism and a lot of helpers who are trained to work with kids on the spectrum. this is her first weekend home after moving to the residential program at her school. in 2 weeks she'll turn 20 years old. i have patients that are 20 years old. the differences there span decades.

i picked her up on saturday (was it only yesterday?). we had big plans. we went to a big free outdoor concert where her favorite band was headlining and we were backstage with our VIP badges because we are friends with the drummer. she was with her siblings and her best friend listening to her favorite music beside the stage- it was magical.

today was different. we went to a late lunch for her cousins birthday at a loud restaurant on the water. it was overwhelming for her. i sat beside her and my time was focused on her, helping her order, rubbing her back, answering questions, asking questions, navigating her inquires to her cousins, re-assuring her of peoples where-a-bouts when they went to the restroom. i love zoe with all my heart. i didn't mind doing it, but i was reminded of how consuming it is, and while i'll never really know, it feels like she is starting to see this. to notice that she needs more than other people do.

from there we went straight to another outing. a friends open-mic night. there were a lot of people there, and her friend the drummer was there too. the expectations were perhaps misaligned, or at least her expectations were exaggerated. she wanted to sit with this guy all night long and chat one on one. but no one wants to do that at a party and she just couldn't get it and it required a lot of laying down the law from mike and me. poor zoe was in tears. i was a balled up muscle knot forgetting to breathe, and we ended up leaving early because of it all.

for all her banter and constant chatter, she never tells me how she really feels, how she really is. i don't get to venture inside of her world except what i assume from what i see. my interpretation from observation. she talks more than most people i know but says less than most people content-wise. but in the car she started crying and mumbling to herself and finally she said, "i don't belong anywhere! i feel like an alien or an ugly goblin."

my leaky bleeding heart broke open even more. too much. too hard. all the feelings.

i know what she means. she lives between two worlds. the last month she spent getting settled in a world surrounded by a lot of support. a world that is made for people who think more like her, who move at her speed, who get her and who are either born like her or have chosen to work with people like her. the world she has been in today and yesterday is a world that moves fast and loud and doesn't look back. it doesn't lean in to support or wait or explain, there aren't a lot of people around for help.

i think tonight under the setting sun in the cool evening air of late august at the end of her 19th year, zoe's heart broke a bit too. i think her tears were not about not getting to talk to her drummer friend longer, they were tears of longing to bridge a great divide. i think she wept because she is starting to feel in a guttural way, that fitting into the neuro-typical world is really hard and takes a lot of work and that she's not quite there yet. i think she wept because she wants so badly to belong and have it not be so hard. and because it's not fair, because it just shouldn't be so hard, because it isn't for other people and she didn't ask for this. i think those tears were from a place of knowing that she actually does like where she has been for the past month and that even if she doesn't love the food, she does fit there well for now. and it's hard to admit that.

on the car ride home i told her that she is not anything like a goblin or an alien, that she is a wonderful beautiful person and that she belongs with us, her family. that she loved and has value as she is. i told her that i thought it must be so hard to go from a place of so much support at her program, to here for the weekend with so much activity and just us. (she adamantly denied it being hard and said i was wrong).

the same things that i'm pretty sure made zoe cry, make me cry too. i long to bridge this great divide. i look at our future and i don't like the options. i want to blend our worlds. i want her to be happy in my world, but i think she's happier in hers. what if it's always that way? what if she needs that level of support?

let go. breathe.

i have to remember. this is where we are now. she has a place to be with really good support. a place where she is learning and getting out in the community and having fun and sounds so happy. this is just her first weekend home. this is a process. this is part of the hard. life is full of longing. and life is full of beautiful.

and she's off!

and just like that, she's off.

there was a time when i thought of course she'll leave home. every one leaves home. it's normal. it's what happens. what people do. they finish high school, they go to college. they start their own life.

then not-normal became our normal. and i wrote about it for years. and i wondered what our future would look like, and by future i usually meant next week because any further was terrifying. and breathing the thought of her not leaving home, not going to college, felt like giving up on my baby and i wasn't going to do that, not in a million years.

but then not-normal began to feel normal, and i wrote about that for years. it took a while to fit into new skin but it happened slowly, when i wasn't looking. what mattered shifted and looking far ahead became really important and next week became pretty predictable, and not leaving home became probable, and college faded far away and letting those things go changed from giving up on her to being okay with where she is and who she is and supporting her through her rocky life road.

in the middle of all that, i had to step way outside of myself and see that she is her own- not an extension or reflection of me. she is fearfully and absolutely wonderfully made, a perfect unique creation, like no one else i know. in the middle of all of it i began to see the complete privilege of loving her and knowing her, poking out of the pain and challenge of parenting her and her autism.

i've watched as her friends since birth have gone on to college, after years of hitting milestones that my zoe didn't reach. i've watched as her own siblings have lapped her. but zoe has her own path, her own place.

i didn't think this day would come. i really didn't.

yesterday i got her ready for dorm life.  i packed her bags and bought toiletries and a shower tote and washed new sheets and towels. today we dropped her off at her residential program. it's not college, it's not even high school. it's better. it's where she needs to be to learn the skills she needs to learn, in an environment that can support her in the ways she needs to be supported. i'm so excited for her. the  best part is, she is excited.

i've learned to be very okay with what is and with not knowing what is next. and i'm deeply grateful for the provision of where we are now. i thank God for opening doors for zoe, for making a way when there didn't seem to be a way. for hearing the literally cries of my mother heart in a bathtub in uganda a year and a half ago, wondering what we could possibly do to help her.  cries that were answered. the overwhelming, never-ending, reckless love of God!

these past few days my mind has been full of pictures and stories of zoe's years, and my heart has been moved with tears and aches by the deep deep love of God and others who have cared for zoe and our family over the years. who have walked through the messes and the victories.

this moment, this day, this is a victory for zoe!