to the boys

i've been thinking about my boys.  thinking about their lives- their extra challenges in being a part of this particular family.  their life with someone who is wired slightly differently.   the one they look to, the one who sets the tone, the one who doesn't always act the part or accept her role as the oldest.  how they have to live with the disproportionate time spent- how they know nothing else.  it's hard and sometimes i get mad for them.  and sometimes i get mad for me.

this weekend we were in north carolina at my parents mountain house.  "we" is me and the kids- mike was climbing mount whitney on the west coast.  so i was on the single parent path- which can be exhausting- especially with those kids who alone seems to need two full time parents.  so i was feeling stretched- i was feeling thin.

the last night we were there, i had put the boys to bed- ok- i had put them in their bed and gone on to help move zoe along.  i found her setting up a chess game (which she doesn't know how to play) and reporting that she was going to play checkers with ama (my mom). but it was her bed time- and i might not ordinarily have cared that much except that i'd found her sitting outside in the full moon feeding the dog dog biscuits at 2 am the night before- so she needed to go to bed and so did i. i told her it wasn't happening and that she needed to brush her teeth, and get her pajamas on and go to bed.

you'd think i'd asked her to eat nails.  she was enraged.  not at having to go to bed- but at me for being the one telling her to go to bed. and it blew up into this nasty mess for her and she couldn't let it go. i however kept relatively cool - for once. but the point of the story is that it took a long time for her to settle out and for me to try to help her shrink it back to reality and in the meantime- bryn had come out of his bedroom and had been asking for me. 

tell him, i'll be there when i can - i told my brother.

a few minutes later i heard- bryn still wants you and is calling for you.

tell him i'll be there soon.

again.  and my reply the same.

finally, i got her to bed and went quickly down to see him- but it was too late, and he was sound asleep.


so this is dedicated to jude and bryn.  really, to all the little brothers and sisters of kids who have needs- special needs- different needs- needs that take a lot of time and energy away from the other kids. it's for all the times you guys get quiet and real good when zoe's having a meltdown.  its for reminding her - nicely usually - that she's alread told you that four times or to stop flapping during the funny part of the movie- even though you're only five.  it's for those forgiving looks and extra hugs and kisses you give me when you know things have been rough. for bringing me your blankies when i have a migraine. it's for driving 45 mins each way three times a week for your sisters therapy - in 100 degree weather - and trying not to fight. it's for all the times you love her and except her just as she is.  it's because you love her and she is who you bounce off of as you become your own people. and because you say things like, " mom, i love you all the way to saturn and then to the moon and then back to saturn and then back again" in your squeeky three year old voice, even though  i never made it down to kiss you one more time that other night. 

favorite things

what i love about that book from my childhood (Alexander and the Terrible Horrible No Good Very Bad Day) is that we all have those days- and most of the time, the next is better and we can look back on it and laugh- so this holds true.

sometimes we need to sing. sometimes if we think of our favorite things......

here's one of mine.

even in australia

today was a terrible horrible no-good, very bad day.

i knew it would be when mike was working until 3am today, and we had to wake up at 6.

jude didn't want to eat breakfast. bryn didn't want to get dressed.

zoe didn't want to wake up and eat- but needed to, to go to the eye doctor.

the traffic was bad and we had to park at the top of the lot.

then came the dreaded eye drops- the dilating solution. 

zoe went berserk. i mean at the mere mention of eye drops she began to panic. her toes curled under and her palms got sweaty. she shut her eyes tight and put her folded in half hands over them and clamped down. we had to physically remove them while the drops went it. she cried. she wiggled her voice. she let out tiny quiet shrieks. she muttered "poor poor meh-" in that awful whine. i wanted to throttle her. i couldn't believe that it was really that bad. that she needed to fall apart. that she could handle getting braces, her teeth pulled, and then collapse over eye drops.

i've never had eye drops of any flavor. so what do i know. but she even admitted that the worst part was the memory of them being put in. the self created drama of it- the anticipation and then the happening of her fear. her loss of control. her inability to refuse. and then the fact that now her eyes won't work quite right for the next several hours. maybe in a sensory vulnerable person- this is torture. probably.

i grabbed her by the arm and told her she needed to stop. this was not successful and resulted in, "don't hurt me!" great. just what every mom wants their kid to say at the doctors office. maybe i should have just throttled her after all.
poor little bryn is trying to behave- but he's bored and wants attention and who know how he's processing all this. so he starts to copy her. the little shrieks and whines- but smiling. now i wanted to throttle him too.

at this point, we were supposed to be in the waiting room, waiting for her eyes to dilate. but we hadn't be able to leave the exam room yet. finally - i was able to corral her out- and opened the door onto the side of my bare foot and almost started to cry myself. as zoe walked past the office staff, she stomped her feet and shouted , "i hate the eye doctor- she's so mean!!"

i was seeing red. steam was coming from my ears. i would have been a great looney tunes cartoon. please zoe. just be quiet. just sit and let your eyes dilate and let me stew in my juices. it didn't seem like it should have been that big a deal for me. i kept muttering under my breath, to myself, "special needs- she has special needs".

when they called us back in- she threw a fit again. she threw her doll, she told the other doctor that she thought he was horrible and she tried to fully shut down and not comply with the exam. i warned her that if not, we'd have to come back.

eventually, i suggested she listen to some music on my iphone and Guster saved the day again.

we went for tea at dr. bombays underwater tea house- but there was nothing there without dairy, so we left. then we went to another place for muffins and i forgot my wallet.

we went to the eye glasses store to get glasses and bryn tried on every pair and got mad that he couldn't get glasses. zoe didn't like any of them- except a two-toned rimed pair with flowered arms- which i vetoed.

at home- we were out of garbage bags and i had to go to target. i managed to come home with out one of the bags and had to go all the way back.

it was 97 degrees outside and i still had to pick up jude and drive three tired fussy children 45 minutes to brain balance for zoe's therapy. i wanted a "get out of jail free" card. i wanted a vacation. i wanted to move to australia.

bryn got a stomach ache- jude was horribly mean to me- and luckily zoe got her brain balanced. the cleaners forgot to clean the dog area- and jude finally admitted that he hates kindergarten and doesn't ever want to go back.

it has been a terrible horrible no good very bad day.

mom says some days are like that- even in australia.

live it full

she died. my patient who was 39. the day i got back from Uganda- but i found out at work on friday. i'm really sad and i miss her. i miss her ability to smile and enjoy life even in pain, even while dying, even while dying young. i had a feeling that it would be like this- that she'd be gone when i came back, and i hated being right. on friday, i signed a death certificate of another beloved patient, and found out a new patient of mine, also 39- died the day before. what do i expect? i do end-of-life care. but somehow, it sneeks up on me. somehow it does surprise me- it does make me sad. it makes me question how i live.

things have been good lately. i write less when things are good- because writing it out helps me- it's my process (and, you know i fear jinxing it). there are differences with zoe- they are subtle but they are good. the way she recovers from things that upset her. the way she's able to be present in the upset- not far off in an unreachable place. she's connecting the pieces- she's picking up things she didn't before. she's a little less sticky- more re-directable.

this sunday in sunday school, she got overwhelmed by the newness- new grade, new teacher, new kids- she felt left out- so she said, "i'm going to disappear." and ran out. she came into the sanctuary and found me-looking like she was going to cry- but she didn't. i whispered did she need me to come out with her, or could she just sit quietly with us. she needed me to talk- so we left the room.

she told me how she felt- how she hated how she felt - how she didn't want to feel this way- and that she wanted to cry- and wanted to know if this was because of her nvld. i told her that everyone feels this way in new situations and that it's normal. that we all have to figure out how to handle that feeling- and that i was proud of her for being so quiet about how she felt because i know it feels bigger to her. that i was proud of her for holding it together- for describing her emotions so well, for taking the time to re-group.  after a few minutes, she wanted to go back to class.  and she did- by herself.  and it was all good.  this is huge! this would never have happened a year ago! there are changes - sometimes i forget to see them.

so i will look at my life more.  i will see the little victories and the big ones- because today i can- and other people can't. because while life is full- it should be lived fully- and because i've seen people- who live it fully, even when it's barely there.

thank you ms. b- you won't be forgotten.

the dancer and the old soul

it's weird to be back. jetlaggy and missing mike while he's at work after so much time together.

we've jumped right back in. bills and mail and messages and the georgia heat. and preparing for school- for work.

and today, my baby jude started kindergarten .  as i held his hand on the walk to school i felt the last five and a half years of connection all at once. recalling his birth - the snipping of the cord- his learning to crawl- to move away from me and return-our years in san francisco and the different quality of the northern light at the playground- the hours of waiting to hear his test results-wondering if he'd ever get to five- and if he'd be able to get to school-and i wanted to turn around and run back home, and run through time.

"it's only kindergarten" mike kept saying.
but not to me. it's more. it's the beginning- it's his life apart- it's his becoming more his own.  he is in many ways, my oldest, although he's five years younger than zoe.  he is someone with whom i can relate- identify with- in a way that i can't with zo.  his experiences remind me of mine- hers have always been so different.

i was teary on the walk- but knew not to be 'that lady' when we got to school. and so i'm teary now. because ultimately i'm so thankful. that he is who he is.  that his health is good.  that he will grow and go on and separate and be his own.

when zoe started kindergarten it felt more logisticy but less emotional.  she transitioned really well. she didn't cry and neither did i.  maybe because she'd been in all day childcare  and i worked full time,so the transition didn't seem as big.  but i think it's also the difference of our experience-our intake.  the way she sees and interacts with the world is different. this is a source of interest and fascination- a chance to learn from each other- but it's also a loss.  today with jude, i was reminded of the difference- of that loss.

for years i felt too guilty to utter the word 'loss' in relation to my child.  how could a mother feel that? but it has been an important piece for me to come to terms with.  the loss of certain things- the gain of others.  the sadness- the greater joy.  it's OK to be honest.

when we were in Uganda- zoe had a moment of pure shine.

we were at a safari lodge, way up north, and a local tribal dance band was playing outside the lodge.  they were in their traditional attire with hand made instruments - gathered around a bonfire.  no guests had come down to watch- so we headed down.  zoe- in her unabashed- unhibited way-with her love of song leading her on- headed down to the dancers and began to shake her little muzungu booty to the drum beat.  she just danced and danced- the little blonde head and the african dancers- no common language- no need to read facial expressions- just the communal love of music- and the common desire to move to it.  slowly people began to gather and watch and participate and after she wore herself out- she went up to bed.  that is zoe in her glory- bringing people together-her love of life.

as i walked with jude to school he asked where zoe was.  i'd left her at home.  he seemed disappointed- and i realized it's because she's his wing man.  he relies on her for those ice breaking moments- to introduce him- to pad the way- to dance the first dance when no one else will.

i'd left her, so this morning could be about him. so that he could have his time- with no competing sticky thoughts- no diversion of attention- which i worry he gets cheated out of.  but i realized that wasn't what he wanted- i'd removed his safety.

"can she come with me tomorrow?"

"yes- absolutely!"

and they can both shine- the dancer and the old soul.