maybe the past 2 months have been like a mirage. other than a few really challenging weeks in the beginning, our time with emery has been so smooth and she found such a groove of peace and trust within her family. but this week of pain and being poked and prodded and held down and arms pinned straight with no-no's, it shook my baby girl back in time.
most of our day, she plays and laughs and snuggles. she ate a LOT today and seems to be unfazed by her mouth. she even finds ways to play with and climb and crawl with her no-no's.
but when it's time for meds (every 4 hours for oxy and tylenol, every 6 for antibiotics, and every 12 for ear drops) she panics. she screams and flails and fights and as if we are torturing her. i'm sure it makes no sense why the people she trusts most are forcing things in her mouth and ears. she looks at me with horror no matter how sweet and calm i sound. she knows whats coming, and she hates it.
at bedtime tonight, i realized just how deep she is hurting. i gave her all of the her meds and drops before we went up for bed. by the time i was trying to put her pjs on, she was so frantic and irate, i knew it was a pivotal night. she wears double no-no's at night (because she can get her hands in her mouth with just one pair) so her arms are like casts. thankfully, the no-no's keep her from clawing her face and head (which she started doing again this week).
her screams reminded me so much of china. but this time, as she flailed and scratched and cried with all her might, her eyes stayed with me. they were begging me not to leave her. her fragile emotional state wanted to push me away. she kicked and screamed and punched me over and over with her crazy arm no-no's. i knew she didn't want to be held, but she also didn't want me to leave. it's such a strange duo that i've never experienced before. but now i recognize it...the pattern of her wanting me to let her feel and deal with pain in her own way, but wanting the security of knowing i'm there for her.
so i held her loosely, and i let her scream and flail. i didn't hold her down, but i held her enough for her to know she was safe. i could put her in her crib and see if she calmed by herself, or go with my gut and stick it out with her. i felt so deeply that she needed me to stay. i tried a few things, but no matter what i did, it made things worse, so we sat. she screamed. i waited.
and all of the sudden she stopped. she looked up at me like it never happened. she signed bottle and drank for a few moments. she fell asleep instantly on my shoulder. i layed her down in her crib and she snuggled up and went back to sleep.
what was all that about??
regression. she went back to the only thing she knows from her deep past of pain. she knows how to panic. she's slowly learning that i'll be there with her as she heals through it.
it's not easy for either of us.
this adoption thing isn't for the faint at heart. we are parenting broken and fragile warriors. children who have deep rooted pain and fear of abandonment at every stressful turn.
emery and i have so much in common. we want and need help, but we hate asking for it. i would have never survived this week without friends and family jumping in and caring for my kids, bringing meals, visiting us in the hospital, and sending so many messages of love and kindness. so many people i don't even know encouraged me beyond measure this week.
i am truly dreading her next surgery...for fear that we have to step back to where we are right now. what she must endure in the next few months can only be conquered because God has invested more strength in her than i even realize. she was created in a powerful way and all i can do is trust that God will bring us through each of these difficult times in our growth as a family.
although we've still had some thrashing, emery slept surprisingly well last night. she was up for pain meds and it took us a bit to get her back to sleep but that was the only time she woke up! incredible!!
she gets frustrated about eating and not being able to feed herself, but otherwise you'd never know she just had major surgery!! really and truly her recovery after day 4 is so much better than I ever thought possible.
I'm hopeful that with each passing day it will get better!
there are 2 things that have been really shocking to me in our 3 days here. 1st: the physical stamina required, and how much my body feels like it's been hit by a semi. i'm not sure of the percentage of time that i have walked and rocked and carried her in the past 3 days, but i know it's more than i thought humanly possible. for example, i carried emery for 10 straight hours this afternoon into evening. we had times when she was happy...smiling and waving at nurses and laughing at my funny faces...you wouldn't even know she had major surgery a few days ago. she isn't swollen and can smile really well, even with all those stitches.
but, we also had large amounts of time when she was so upset and frustrated today...maybe more so than yesterday. it's totally understandable. she's experienced something so awful and painful, and she isn't allowed on the ground to play, and she's in a strange and oddly noisy place. (oh and the neighbors watch Judge Judy all day long...my brain is melting).
which brings me to the 2nd shocker: something clicked on tuesday, and instead of feeling comforted when i hold her, she has reverted back to china. when she feels pain or hunger or exhaustion, she arches her back and flails backwards and doesn't stop. over and over and over she arches backwards with such force that each and every time i have to hold her with all my might just so she doesn't plummet to the floor. it's horrible. it's soooo very horrible. to see her reverting back and acting like the past 2 months never happened. it's my worst fear coming true. i am praying and praying and praying we will find our way back to where we left off before surgery.
today, she didn't want to be put down...in fact, she didn't want to be held either. she thrashed and screamed for what seemed to be hours. every time i wanted to punk out and put my sweet sobbing girl down to ease my own tortured arms, i remembered what she is going through, and i kept going. 5 more minuets. 20 more. 1 more hour. and so on. if i'm honest, i was (and still am) in so much back pain, i think i might put in for a reconstructive surgery of my own. oh and maybe a left arm transplant :) my body was shaking so badly by the end of the night, i was afraid it would give out. i wish i had kept up with my yoga or lifted some weights in preparation.
ok, enough of my whining. but i needed the back story to get to the good part.
in the middle of my 10 hour stretch of holding (somewhere around 5pm) i was crying because she was crying so much. my heart was breaking at her sorrow and i just didn't think i could take another moment. i asked the nurse to give her meds a little early in hopes that it would help. but it was too early. 1 hour too early. so i tried other things. formula? no. didn't want that. toys? no. didn't want that. diaper change? no. didn't like that one bit.
so i laid her on the crib, my arms shaking. i kissed her forehead as she was kicking me and trying to find a way out of her no-no casts. she flailed and clawed at her feet and my neck and face. my tears dripped on her as i tried to speak softly in chinese over my own sobbs.
suddenly, she calmed a bit. she looked up at me, with those amazing eyes...tears streaming in those sweet asian browns...and she spoke. for the first time.
she said the one word i have been longing to hear since i laid eyes on her. the moment i have dreamed of.
she said "mama".
yes, you heard me. "mama"
i was stunned.
so i said "mama?? did you say MAMA?????!!!!"
slowly, carefully, as if to choose her word with precision, she said it again "ma ma" "ma ma" "ma ma"
then she smiled. so very proud of herself.
if i was crying before, now i was really crying...pure sobbs of amazing gut wrenching joy.
"mama" i repeated with a giant beaming smile
"ma ma" she replied carefully, followed by a beaming smile of her own
over and over.
as if she knew i needed her. she's supposed to be the one needing me, but in that moment...in my desperation...my pleads...my need for her to find peace, she gave peace to me. what a gift from the Almighty, this one. she speaks and it's like an angel singing to my soul.
keeping us overnight for observation. i'm bummed, but better to be sure she's ready and able to maintain. been holding her for 6 straight hours. will need back transplant before the night is out :)
still hoping to be discharged and go home, but it's been a rough morning. emery is very agitated and has been screaming and flailing so much I can't hold her. she finally screamed herself to sleep. uhg. what a hard, exhausting morning for my girl. praying rest will help and we can go home soon. I need a shower so bad...my grease-ball hair could coat a pie pan at this point :)
staying in picu tonight...sweet girl doing really well...higher pain med doses have helped and she's been smiling and happy for the last hour, Praise God!! clint just got here and we are so happy to see him! she's been giggling and laughing with him. hoping for both em and I to get some sleep tonight after clint goes home.
doing a bit better this morning. she finally slept for a full hour. docs are stopping morphine so we can try to get her to drink. unsure if we will go home today or spend another night. heart rate is finally normal when she is resting. she is so sweet and is content when I am with her...the nurses all stay out of her eye line because she cries if she sees anyone but me :) I'm so grateful that she feels comfort when I am with her. i can literally feel her getting stronger. she was awake and calm for a 1/2 hour this morning. even smiled a bit. oh she's just so amazing! what a fighter!
moments of rest mixed with sobbing. baby girl has slept on and off, but even with morphine the pain is still so strong. praising God for each moment of sleep she can have.
we are in the picu (pediatric intensive care unit) right now. sweet girl has done so well!!! palate repair was perfect and the doc was very pleased. she's hardly swollen and looks so good for having major cranial facial surgery!! the nurses have been so amazed by her resilience!
I'm so grateful for each of you lifting our girl up today! praise God for the tiny little warrior He gave us!!
- we arrive at chop at 11:30am tomorrow, surgery to start around 12:30/1pm
- emery and i will stay at chop for 1-3 nights depending on her pain level and ability to drink a bottle. it will take 3-4 weeks for her mouth to heal.
- this surgical procedure is intense, and quite possibly the worst she will experience, as it involves closing the roof (palate) of her mouth. without this palate repair, she would never be able to speak properly. her lip will be repaired approx 6 weeks from now.
- she cannot eat at all tomorrow before surgery and can only have pedialite before 9am. please pray we can survive until surgery without her totally melting down. she becomes frantic and quickly irate when she is overly hungry. i'm sure it has a lot to do with her previous malnutrition.
please join me in praying for...
- a well rested and focused surgical team that will make excellent choices as they are working on such a delicate area.
- no complications from the surgery
- the blessing of kind and compassionate after-care nurses
- powerful pain meds (maybe a few for me too :)
- strength for our little warrior girl as she endures a level of pain most of us will never experience in our lifetime
- emery to allow me to hold and comfort her and share in her pain
- her to feel a supernatural presence
- foster and rowan as they are very worried about their sister
- fast healing. lightening fast :)
we rejoice knowing we are not alone...what would we ever do without such a powerful community of friends and family!
em (as her brothers call her) has palate surgery on monday. we will be in the hospital at least 2 days. i'm more and more nervous each day. when i look at her, i want to cry knowing what is coming, and the pain she will experience.
she's been so much more and more relaxed as each day passes. she scootches around and plays so happily. her number one goal is to catch up with her brothers and try to swipe any nearby toys. she's pretty darn effective at the toy swiping. the climbing. the standing and reaching. in fact i turned around earlier today and found her sitting on a box. on the TOP of the box. she climbed her way up there somehow. i pulled her down, and in an instant she was back up. she's crafty, this one.
we are also rather stupidly making craft show items for next weeks' show. everyday we ask each other if we should cancel. at this point, i've spent so many hours, i just can't cancel. i'm one all nighter away from being totally done...that way i can spend all next week with emery instead of worrying about finishing crafty things. i've even been able to sew in small increments throughout the day when the kids are playing....something i used to do all the time before emery...and its been a pleasant surprise to see i can have 20 min here and there to stitch a few things.
the boys love to help me sew. wait, let me rephrase...they love to "drive" the sewing machine. i always wonder how long it will take for me to get my finger sewn to a piece of fabric because they get a little trigger happy.
from time to time, they like to think of things to make and then see what we can come up with. today it was scrap fabric pants. after we made makeshift (horribly ugly) pants, one little boy decided he really didn't care that much about them afterall, and another little boy decide he didn't want to ever take the ugly pants off. he is still wearing them at this moment. they are hilariously horrible.
i awoke this morning, still dressed from yesterday, making it easier than ever to pop out of bed and start the morning routine including breakfast and pillow hopping on couches and bananas thrown all over the floor I just scrubbed. oh and me leaving my coffee on the floor (where I was sitting with emery when a certain little boy fell off of a couch doing a certain pillow jump and needed assistance). it was after i got distracted after the pillow injury, and after i headed into the kitchen to warm up my coffee, that I realized I had no idea where my coffee was. oh but emery knew. boy did she ever. floor meet coffee. coffee meet floor. i'm sure you two will be very happy together. or at least matchmaker emery seems to think so as she dips and splatters, dips and splatters with her very effective hand dip maneuver.
and my son foster says to me, as he rips off his flanel spider man pj shirt, while throwing a ball that nearly takes out a local lampshade, "mom it's so hot in here, my underpits are sweating!!"
underpits. perhaps my new favorite saying.
i'm shivering and his underpits are sweating. clearly we live in different climate zones. isn't that so true of life sometimes? different climate zones, same continent. one big happy family.
one big happy Sunday morning family. evening church = leisurely morning. kids squealing giggles while daddy does his sleeping spider impression with boys sneaking up for ambush. they never make it. 'sleeping' spider always attacks. they always attempt ambush. it repeats and never gets old. clint makes the best coffee. it tastes better than when i make it. he refills my cup when i'm not looking. somehow Sunday mornings never feel rushed the way midweek does. the way Friday seems to fly by. Sunday feels slow. gloriously slow. delightful and perfect. it makes me wish for a world of Sunday. even if i'm shivering and foster has sweaty underpits. Sunday puts us all on the same continent and we're stuck there. and we love it.
the boys wanted to try out the kids playland. jing liu was exhausted and slept in the mai tai. so this mama had 30 min to wander around ikea without any children grabbing or whining or doing power slides in the kitchen wares section. i gotta say, my afternoon of leisure at ikea was divine. even if by "afternoon," i mean a half hour.
the great thing about this canvas is somehow it made my so-so photo composition look even better! i‘m in love with this photo because of what it means to me…i‘d love for her to be looking at the camera, or smiling, or for the exposure and white balance to be better…but it captures exactly who we were at that moment. i look at it and remember how that day felt. it felt beautiful.
until then, this gem is hanging out on a stray nail from the previous tenants (thank you whoever you are) and looking quite adorable.
the disclaimer portion is now over.
good. i can get on with it.
wait, first things first...
now that my first in a slew of limber stripes is out of the way, good gracious there is a lot to say. i'll never get it all out. especially with the piles upon piles of unfolded laundry.
(seriously, if your laundry is all folded, i will ever applaud you. you are my hero. piece de resistance. i tip my ever un-folded hat to you.)
life feels too exhausting right now. but sometimes that's when i come up with the best stuff.
as of today, i've entered insanity. i started plotting my craft show creations.
12 bundles of yarn and 12 straw wreathes later, i'm realizing some lady needs to carve out time to wrap those babies and then make some outstanding accoutrement flowers to accompany them...and that lady is me. i'm literally giddy with excitement to have a reason to stay up into the wee hours that doesn't involve packing or unpacking or cooking. (at the last minuet on friday i decided to enter the realm of OAMC. i nearly collapsed by the end of the weekend after cooking all night for 2 nights, but on this side of things, i have nearly enough meals for 1.5 months if we plan carefully and eat our leftovers. oh the joy of forgetting how agonizing it was. i might just do it again :)
have i mentioned my 3 year old mr rowan has been all out of sorts since we came home with emery? other than a few sleep issues and irate crying during the first 2 weeks, little lady has adapted so well, it's scary. mr 5 year old foster has also adapted amazingly well. it's as if the change brought out the best in his skill set. he's crazy amazing with her. so patient. so loving. he even giggles when she slobber kisses him on the mouth. now that is love, folks. 'cause her slobber kisses taste like boogers :)
but rowie, oh dear. although i know he loves her, kisses her feet constantly, and plays the most adorable games with her, he has not been in love with his mommy being unavailable throughout the day.
in fact, he has thrown every tantrum/floor-punching/throw-down-knock-out/terror-ridden/ear-piercing scream in his arsenal. at me. at everyone. at life. for nearly a month and a half. i'm out of ways to deal with it. totally out of ideas. loosing my mind to think of ways to move it in a more positive direction. at times, i'm quite sure it will never end. i never known him to be so unhappy for such long periods throughout the day. sometimes it feels like all day. or maybe it feels like all day because it is. as if someone captured my sweet buddy and returned a monster instead. as if his screaming/tantruming is AT me. directly at me. so i know just how much he dislikes the change.
and then yesterday happened. i thought for sure it was a fluke. a mirage. an accident. our day was pleasant. he was pleasant. when he started to freak out, with a quiet word, he calmed. he changed his attitude and the tantrum was over before it started. it was like we went back in time. a cool breeze floated through the house and coaxed us all into wonderment. i decided to consider it an anomaly.
then today. a long day. we were in the car a lot, i was holding emery a lot, in and out of stores, dropping foster off and picking him up from school (45 min away from home). to my surprise, it was pleasant. fun, even. he was delightful and helpful and best of all, snuggly. we held hands a lot. he stuck with me all through the house. all through the stores. all through our lunch at the park. after dinner we were all pooped. we watched a movie together, and he snuggled on my shoulder while i fed emery a bottle. if i had to move or adjust, or reach, he did too. he found his niche. it's not exactly the same, but i think he realized we can still be close and snuggle and be near each other...and emery being there is ok too. it feels normal for him. finally. i needed a few good days like my husband needs a tall glass of ice tea. i needed it bad.
praise the Lord for good days. can i get an amen?
praying tomorrow is another day like today. because we are headed to CHOP for a pre-op appointment and the boys are coming with me.
have i mentioned that foster is very upset about jing liu's surgery? so upset he starts tearing up when we talk about it. he keeps asking if she has to have it. he's so sad to think she will change or look different. so we talk about it. we talk through it. it's a normal thing around here to talk about stitches and anesthesia and facial structure and how things bleed and how things heal. i'm hoping that meeting the surgeon and talking with the doctors will help calm his fears.
we've also started talking about pain. how we can help when people around us are hurting. i want them to know they have an imporatant...nay, vital role in their sister's recovery. because it's true. she reacts to them. they make her smile in a way that lights up an entire continent. in the end, the life lessons our family will learn will be ever valuable to life. to our legacy. all because of one little girl and what she brings to her family. we all bring something unique and special. family members change and mold each other. being present to watch the shift occur in our family is something i will always treasure.
we are less than 2 weeks from surgery.
so i confess 2 things.
(1) upon excepting emery's referral (which is a story i should tell one of these days) i had never seen a baby with a cleft lip/palate in person. a year or two ago, i could have never imagined loving a cleft lip. that was last on my list of needs i wanted. sad, but true. OH PRAISE GOD for the way He softened my heart. what on earth would i do without her?? if i had closed my heart to the option. if i had hesitated longer at the "cleft lip/cleft palate" box on the special needs acceptance list. can i just advocate for a moment? can i just say that if you are scared of cleft babies...if they make you uncomfortable (like i was). get over it. have the faith that your heart will melt when you meet one of these precious lipped individuals in person. because i guarantee you will never ever meet a cuter child. never ever.
(2) when i finally met her in person, oh dear lord. every. single. part. of. her. was my favorite part. i could talk endlessly about how beautiful she is. novel worthy. in fact, i'm sure i'll spend the rest of my days gushing about her. but her lip? nothing on earth could be cuter. i kiss her cleft a thousand times a day because it is so breathtaking to me. she is breathtaking.
upon returning home, i expected to be up in arms when we went places with her. i expected to get the "are they all yours??" question. or the "how much did she cost??" or "are you her real mom?" questions. i prepared my forced smile and cheeky (or snide) replys. but much to my pleasant surprise (so far) we've been met with such sweetness. men, women, young, old have approached us when we are at target...restaurants...the park...and made comments about how cute she is. how lovely. how precious. and i beam.
but today at the park, we were sitting in the grass. miss emery was chomping on a banana. mr. rowie was eating yogurt. several little kids walked by. they stopped right in front of us and stared. literally 2 feet in front of where we were sitting. they started right at her. they glanced quickly at me. i smiled and said hi. no response....the gaze went right back to emery. zoned in on her banana eating lips. they couldn't figure her out. the stare lasted longer than it should. i said hi again, but their stares were so intense that they couldn't hear me. it continued so long, we just went on about our bananas and yogurt. we played and talked. serously. it was strange. uncomfortable.
they are just kids. i'm not upset at them. i am upset for her. for that kind of attention. she deserves to be seen as more than a kid with a cleft lip. because she is so much more than that. so from here on out, i'm praising God for her surgeons. i'm looking forward to the change. even if in my heart i'm dreading it.
and that's enough of my cleft soap box.
back to my kitchen overhaul and glass of wine. oh and somewhere in there i'll fold some laundry.
or maybe i'll just go to bed and hope i fold it tomorrow :)