landing in uganda

i want to write more about the early years with zoe, when we were trying so hard to understand her needs, when we were in that awful place of denial alternating with hyper-concern. when we felt most alone, unclear of what supports we needed or could / should have, when we wanted a diagnosis and feared labels so deeply.

so this is where i left off- part ii- after 'the beginning'.

zoe has the advantage of being extremely cute and charming. she has always been like that. when she was 8 months old, we went to italy for a month. she was still immobile and happy that way, so traveling was relatively easy. everyone loved her- of course it was italy- the most child-friendly of all europe it seems. when we got home, most of my friends had started residency and i was doing the mommy thing. zoe and i started going to gymboree- a little kids play group/gym activity. it's one of those places where you can't believe someone would ever talk in that high squeaky baby voice and sing silly baby songs in front of other people. where parents get to brag about whatever milestone their kid has just reached, where moms can talk about the woes and joys of baby life and kids can smile and stare at each other and watch with fascination as some other big person squeaks,
" i see zoe unnnndeeeerrrr the parashute, i see bradley unnnnnndddeerrr the parachute......" while their moms clap or drum the mat they're sitting on, as instructed.

it felt weird, it felt forced, i didn't fit in, and neither did my baby.

ever week started off with "introductions" and everyone says their name, their baby's name and how old the child is- and what they've done that week. it was 12 weeks long.

"hi, i'm kris. this is zoe, she's 9 months old and she can sit up and just learned to roll over!"
"hi i'm kris, this is zoe, she's 10 months old and she can still sit up and roll over!"
" hi i'm kris and this is zoe, she's 11 months and she can sit and roll over."

it was the first time i'd felt the "yuck" in a while. i didn't know these people. i didn't know if i should explain something-

"hi i'm kris, this is zoe, she's delayed and we're starting physical therapy."
or if i should just ignore it. i just didn't know.

i also didn't fit in with the mom culture part. i was home, but i wasn't a 'stay-at-home'. i was technically a doctor, but had never practiced medicine- so i couldn't say i was a doctor, really.
so i kind of felt like a phony all around.

i say all this, because having a child with special needs, follows you where ever you go- even into the little places. think about when your kid fell and got a black eye and you're in the market and people are staring at you or taking a second look, like who is that mother and what is she doing to her kid? and you feel the need to explain what happened because you're afraid people will think you socked your child. or that if you explain it to a total stranger, then surely you'll seem like you're covering something up.

landing in uganda (see first post 'guess i'll go eat worms') is like that.

it feels like you're underwear is showing - all the time. and it takes a while to get used to that.
at gymboree, at 10 months old, i wasn't there.

i'd go to physical therapy each week and look around and part of me would feel so thankful becaue it could be worse. and part of me, couldn't believe that this was my life, her life. that i'd accidentally joined that club- the sick kid club- that i never wanted to join.

and i would be at home, watching her scream as i put her on her stomach - thrashing her head back and forth- unable to roll over- and i'd know that loving her meant that i couldn't just pick her up or roll her over, but i could sit beside her in her pain and frustration, crying myself often, and tell her that i love her, that she could do it and rub her tiny back.

having children has made me think about God differently.

because there have been many times in my life when i felt like zoe on her stomach- trapped, helpless, angry, hurting- and have screamed out to God, " just roll me over!" "get me out of here!" " i hate this!"

and now i know how much He wanted to, but knew better. knew that what ever i was stuck in, i needed to be there and figure the way out in order to get where i needed to go next, to learn that path. but He has never left me on my stomach and walked away. and that's what matters. non-abandonment.

yet this i call to mind and therefor i have hope-
because of the Lord's unfailing love we are not consumed.
His mercies are new every morning.
lamentations 3: something

i have leaned on this verse many times- i've even posted it before. i like it because of the words; hope, unfailing love and not consumed- and because of 'new every morning'; so most of it. it's a promise- and i hold onto this.

because sometimes i feel like i'm about to be consumed. zoe does too. everyone does, really.

all these 10 years later- life for me, can feels like this- being on my stomach, unable to roll over- it's the same lesson. zoe needed to do it herself, but she needed me beside her. the challenges continue, all the milestones are hard, but bit by bit she gets there. my milestones are different, they're not physical, they're emotional. trickier. and i'm so thankful for the God who sat and continues to sit beside me- present in the struggle.