VEPTR Expansion #3 and Thanksgiving Wrap Up

Lilly successfully underwent her third VEPTR expansion surgery on Tuesday the 20th this week.  She and I drove to Philly from VA on Sunday afternoon--stopping briefly to visit with Justin, Lita, Joshuan, Abby, Delaney, and Elly on our way north--checked into the Sheraton University City Hotel that evening ( no rooom at the Ronald McDonald House, unfortunately).

Monday was our usual pre-op day with a clinic visit with Dr. Campbell, X-rays, lab work, and a screening visit at the anesthesia resource center.  Different this time was an additional clinic visit with Dr. Carrigan to follow up on LIlly's weakness and lack of flexibility in her right hand that we discovered over the summer. Dr. Carrigan is a hand surgeon who works with Dr. Campbell and he had recommended the EMG test Lilly undewent in October.  Dr. Carrigan was happy with the treatment Lilly has been receiving for her hand in her OT visits, and will followup in 6-12 months to make sure things are still looking good.  Overall, the day went smoothly, and Lilly and I were done in time for a late lunch in the cafeteria and an afternoon at the Please Touch Museum, an awesome children's museum just a few miles from CHOP.

We indulged in Chinese food for dinner and did homework in our hotel room before proceeding with our usual pre-op bath and wip down with the special antimicrobial wipes thay provide for us each surgery.    Our show time for Tuesday wasn't until 1pm, so we made plans to spend the morning doing school work, sipping apple juice, watching movies on the iPad while Mommy exercised in the fitness room, sipping more apple juice, and then walking to downtown Philly to a Barnes and Noble bookstore to see Nana's new book, Agenda 21, on the shelves for the first time.  We bought a copy for Dr. Campbell as well.  How exciting!  Then we walked back to the University/Hospital district of town just in time to get our car from the hotel and get ourselves to Surgery Reception at CHOP.

I was excited to meet another VEPTR mommy in the pre op area--we had "met" on the VEPTR family Facebook page and her daughter has been at CHOP for about 10 days due to an ongoing infection.

Our wait was smooth and pretty speedy, and by 3:15 Lilly and I were headed back to the OR where I was again allowed to "suit up"and hold her while she breathed the gas from the ask to help her drift off to la la land.  Lilly comments contstantly that the surgery seems so very fast to her because she ggoes to sleep and as soon as she wakes up, it's over!  Not quite as fast for mama, but this time actually was pretty speedy.

I got to finish reading Agenda 21 in the waiting room--a wonderful distraction from the business of waiting--and Tom and my other 3 kids arrived just as I was finishing up the book.

Lilly woke up ravenous and spunky.  She devoured everyone else's dinner since the hospital didn't uet show her in the system and we couldn't order her a dinner tray.  She was happy to see her siblings and was feeling pretty good--other than being itchy from the morphine--thanks to good pain meds.

After Tom and the other kids departed to finish their drive north to Grammy's house, our night was spotty--hospitals simply aren't a place to get good sleep.  She was itchy and had tummy aches.  The next morning we dealt with nausea and pain and continued hives and itchiness.  She wanted to go for walks and play in the play room, but her nausea made both of those things short-lived.   We were thankful for the zofran the resident ordered for her, and by 3:00pm, we were discharged and ready to do battle with Thanksgiving traffic to get to Grammy';s house.

The drive, usually a little over an hour, was closer to 2 hours, but we made it.

So good to be in a place where I could rest and decompress.  LIlly quickly settled into playing with Isabel and her cousins Peter and Naomi, and it felt good to be with family.

Our Thanksgiving was wonderful--as always lots of delicious food and many many people with whom to share it.

Yesterday, we enjoyed a beautiful day to get out an dhike at a local park called "ringing rocks" where the rocks make beautiful tones when struck with a hammer.  We had more good food with a few of Tom's siblings' families who weren't present for Thanksgiving dinner.

Later today, we'll pack up and head home.  I know Lilly and I are both ready to get into our own space and our own beds.

I am ever so thankful for the wonderful care that LIlly receives at CHOp, for the love and care of family, and for the grace of God that washes me afresh each day.

Lord, Deliver me from my Irritability

This morning, the sound of my 6-year-old virtual twin girls giggling in the back of the car on our way to our weekly occupational therapy (OT) appointment was a welcome reminder of the joy of family, the blessing of two little girls from the same heritage getting to grow up as best friends and sisters forever.

Our morning had gotten off to a rough start and my mood had been sour--initially irritated by childish behavior--and then deflated as I steeped in the guilt of allowing my irritation to turn to harsh words.

You see, we have been spending two hours each week doing OT--Lilly for some issues with lack of flexibility and weakness in her right hand, Isabel for her deficits in gross motor and visual motor coordination.  This chunk of time in our week has been a sort of mixed blessing to me. 

• The services the girls have received is top notch and the results--especially for Isabel--have been astounding.  She is making wonderful progress in so many areas.  Their occupational therapist is wonderful, thorough, caring, and knowledgable. 
• But (as you might have gleaned from my previous post), time has been my most treasured commodity in recent months and these many Thursday mornings spent sitting on a hard chair in the OT waiting room has felt like an unjust imposition on my selfish heart.  Each Thursday I find myself feeling annoyed that I don't have a morning to just stay home, catch up on housework, and drink an extra cup of coffee.

So, this morning as I drove, I was wallowing in mommy guilt for having raised my voice at Isabel as we got ready to get out the door.  She had come to me, as she often does, to ask whether she had gotten her shoes onto the right feet.  This is something she almost never got right when she first came home from China.  These days, nearly 9 months later, she gets it right about 75-80 percent of the time. 

When she doesn't get it right, however, she dissolves into a pitiful floppy puddle of whines and moans on the floor.  The fact that the shoes are on the wrong feet might baffle me, but it doesn't upset me.  It's the whining and stomping and sudden physical limpness that does. 

And this morning, I got annoyed.  My voice was not pleasant.  OK, I admit it.  I sounded REALLY mean.  Poor Isabel just froze, then cried harder.  Lilly, on her way down the stairs to the front door, stopped, stunned, to quietly peer through the banister at me.

Just moments before this incident, the girls and I had been sitting together over breakfast reading about Moses receiving the ten commandments. We had looked at the passage in Galatians 3 that discusses our captivity under the law and the hopelessness without Christ. Our little devotional had encouraged us to confess our sins--and I had led out in prayer as an example to the girls by asking God's forgiveness for those times that I get impatient or irritated with my children and speak words that are not kind.

And then this.  I immediately sought Isabel's forgiveness for speaking harshly. She granted it freely through her snotty tears. 

I am in need of better strategies to guide Isabel to successful independent dressing. 

I am in even greater need of better strategies to help me with mommy irritability.

Above all, I am in desperate need of grace.  Both showing it, and receiving it.  And the transforming power of the Holy Spirit in my heart.

 Moments after Isabel had granted forgiveness and we had finished getting the shoes on the right feet, Lilly felt compelled to chime in "but Mom, you just prayed about that. And you still yelled."

Yes, my sweet child, I did.

Praise the Lord that He gives grace feely and shows what it looks like so clearly through His laying down of His life.  He doesn't yell harshly at me when I mess up. 

May I give it as freely, laying down my frequently unrealistic and selfish expectations more often.  And may I receive it more freely when I stumble.

Above all, may my children learn more from how I recover from my mistakes than they would from any attempt at perfection.

Life Undone.

This blog post has been rolling around in my brain for several weeks now.

Lately, weeks can go by with such speed that I sometimes find myself bewildered at what month it has already become. 

Indeed, I cannot believe that my last blog post was nearly two months ago.

(In case you've been hanging and wondering about Lilly's infection all this time--my apologies, since that was the last thing about which I blogged--she's doing fine...infection free after a month of antibiotics.  God is gracious and merciful.)

And hence, the reason for the title tonight.

So much.  So fast. 

EmailCarpoolsCalendarsHomeworkMealsGroceriesMedicalAuthorizationsEducationalConsultationsLaundryVacuumingPianoLessonsTidyingDishesDrivingPracticeWalkingDogRefuelingCarWipingCountersMoppingFloorsScrubbingToiletsExercisingDoingBibleStudyPhoneCallsMedicalAppointmentsOTAppointmentsDentalAppointmentsSwimTeamBandPracticeChurchChineseSchool....andit'sMondayagainalready?

I have always been the kind of person who likes things to be in order.  When I was little, I used to get so upset by my brothers (much to their delight) when they would sneak into my room and ever-so-slightly shift the positions of my little Holly Hobbie radio and my little porcelain kitten alarm clock (before the days of clock-radios, before the days of digital clocks, and WAY before the days of cell phone alarms) that I had so perfectly aligned on my night stand.  I used to pack my school book bag the night before and have my clothes laid out for the next morning.  I used to have to-do lists that always got completed and enjoyed the sense of accomplishment and relief when things were *finished* and I could simply relax and do something just for fun. 

Order, control, and completion are things I have had to surrender in this current season of life.  Surrender does not come easily to me.  It is part of my pride complex--self-sufficiency, capability, organization, achievement--all things that I have historically allowed to sort of define me and give me confidence and a sense of self-satisfaction.  Surrender, for me, was the enemy--a mark of failure.

Surrender, however, I must.  Despite my 4am alarm clock, my detailed calendar and to-do list, and my best intentions, I am met at the end of each day, bleary-eyed, with life undone:

Dishes still dirty (or at least clean ones not yet put away).

Laundry un-finished (we'd have to all go naked all day for that to ever really happen.)

Those 10 extra pounds un-lost=clothing unflattering, uncomfortable.

House-cleaning incomplete. (again, we'd have to all move out).

Books stacked on the night stand un-read (most ironic thing ever--one of those books is entitled "Margin" and discusses the need for white space in our lives).

Emails unread or un-addressed.

Correspondence unsent.

Phone calls not made.

Even worse:

Conversation with my man unfinished.

Prayers unthoughtful.

Thoughts unclear.

Emotions uneasy.

Spirit unrefreshed.

All of this is not to somehow say that I am ok with things being undone, that surrender means giving up my goals, that having order in our home and our family life and in my soul is not a worthwhile pursuit.  By all means it is and I will continue to press on toward that end. 

What it does translate into, however, is this: Instead of *self* satisfaction in what I am able to complete and accomplish, I am learning to find *satisfaction* in God alone.  I am learning that it can be well with my soul even when life is somewhat undone.

I am learning to seek discernment early in the morning for the day's priorities so that, at days' end, the  things that are undone are the unimportant. 

 Bless the LORD, O my soul,
  and all that is within me,
  bless his holy name!
 Bless the LORD, O my soul,
  and forget not all his benefits,
 who forgives all your iniquity,
  who heals all your diseases,
 who redeems your life from the pit,
  who crowns you with steadfast love and mercy,
 who satisfies you with good
  so that your youth is renewed like the eagle's.
(Psalm 103:1-5 ESV)

So beyond me.

Today was one of those days that reminds me that, even when I might feel as if I have some semblance of control over our days, it's really truly out of my hands. 

Today, day 17 since Lilly's expansion surgery, she began to run a fever. 

This whole week, we have been a little suspicious that something might be brewing.  Her incisions started looking a little funky early this week and started even having a bad smell (which reminded me of how they smelled when she had her last infection).  She also began having more pain, night terrors, and a bizarre itchy red rash (some like hives) all over her body, mainly on her legs, sides, and back.

Not liking what we were seeing, we had some blood work done on Wednesday and I kept the doctor's appointment for her on Thursday that I had almost cancelled when the doc late last week was able to put in some referrals (for other issues that have come up recently with her right hand function and strength and possible neurological problems) for us without actually seeing Lilly.

Of course, the day you go to the doctor is the day that everything looks great and they wonder why you are sitting there in the doctor's office...

• The blood work actually didn't look terrible--white count was normal and CRP was slightly elevated but nothing like how high it went during her last infection and could totally be attributed to recent surgery. 
• Her incisions actually began to look better because we had removed her funky steri strips and placed a fresh dressing over the incisions.
• Her rash was nearly gone.

So, of course, the family practice doc we were seeing (and Tom and I as well) were really no longer concerned about infection.  Ready to move on into the rest of our week--which included back to school orientations for all of the kids & Jared's marching band's first football field show--as well as get ready for next week--which holds big things like 4 kids starting 10th grade, 7th grade, 1st grade, and kindergarten as well as Chinese school for 3 girls on Sunday afternoons. 

(Oh, and not to mention my starting in my new role as a Core Group leader for Community Bible study, and Tom and me beginning to get the ball rolling for co-hosting/leading a new home group from church, and continuing to do my marathon training--only 5 weeks to go!--and hoping to up the intensity of all of my workouts now and maybe shed a few of the stubborn post-adoption, post-surgery pounds that are ignoring my attempts at self-discipline in eating and intense fitness regimen...and hoping to maybe even start teaching spin classes at a gym again...and...and...and...but I digress...)

Today, however, concerns quickly picked back up.  Lilly's sleep patterns have been all over the map this week. This morning, however, when she slept till 9:30am, barely touched her breakfast, wanted to be carried to and from the park and barely played at the park, and then just wanted to be held after lunch, I knew something was up. When she complained that her head hurt and her shoulder and arm hurt and she felt warm, I began the obsessive-compulsive temperature-taking. The first two times I took it this afternoon, it was normal. Then it began to climb. Highest today hasn't been too high...101.7...but anything above 100.4 is of concern when dealing with possible post operative infection.

So, making this long saga a little shorter...after talking with Doctor Campbell, we filled some remaining refills on her oral antibiotics from the last infection and started her on them this afternoon. She should start to feel better in a few days, and hopefully can start school on time without missing a beat.  Now we wait and pray that this infection has not made its way to her hardware, where antibiotics are ineffective. 

In the category of brutal transparency:  Did I mention this is not how I had planned to spend our Labor Day weekend before schools starts?  And did I mention that not only do I feel immense concern for Lilly but also pangs of mother guilt when Isabel suddenly feels the need to point out every scratch and owie she might have on her legs or arms and whimpers and whines when I carry a weary and feverish Lilly around but can't pick her up too?  I might also add that feeling so very out of control and inadequate for such circumstances just makes me want to eat chocolate--or maybe have a glass of red wine--and that's really not what will make those stubborn pounds slip away.  Clothes fitting too tightly doesn't enhance my mood at all either. 

Yes, it's all beyond me.

Thank the Lord He's got it all in His hands and nothing takes Him by surprise.  Earlier today, when Lilly's tylenol had kicked in we walked to the park.  On the way, she wanted to sing together.  When she asked me what I wanted to sing, the only songs I could think of were "When I am afraid, I will trust in you," "Our God is so big..." and "Jesus Loves Me."

Indeed, "they are weak but He is strong." Personalizing it a bit, I am weak, but He is strong.

The name of the LORD is a strong tower; the righteous run to it and are safe.   Proverbs 18:10

6 months as a family of 6

Six months ago, in a government office in Zhengzhou, China, it started like this:

From cautious and hesitant, to terrified, to seemingly relaxed and happy--all in about 45-minutes' time.

Then, a matter of days later, our brood of kids looked like this:

And we were all happy--thrilled that our journey to Isabel had finally come to its fruition, thrilled to be home after the long adoption trip, thrilled to begin a new journey of grafting in a new family member and establishing 3 new sibling-relationship-dynamics. 

As grueling and long as the adoption process can be, and as emotionally and physically taxing as the adoption trip itself can seem (especially when you leave the other kids home), I knew at this moment in time that our harder work was still to come.

The true journey for Isabel to grow genuinely comfortable, relaxed, and at home in our family, naturally, is an ongoing process.  One that refines each of us uniquely.  One that requires grace and patience and flexibility and stamina.  The end result is beauty; like many things in life worth doing, however, the process is not always easy or fun.

I recently read a blog post by a blogger that has a way of capturing the truth of life and emotions with humor and great writing.  You can read her post here.  I cannot come close to capturing the truth of adoption with the degree of humor and insight that Jen has done.  But I can completely relate to the different "stages" that an adoptive family goes through in that first year.  And I am happy to tell you about our family and how things are going six months later...

It is amazing to me that we have been a family of 6 for 6 months already.  

The first half of Isabel's six months with us was primarily spent at my side, helping me around the house, playing with me while the others were at school and work, running errands with me, and simply soaking up one-on-one mama time.  The afternoons were my easiest time of day because, once the girls got home from school, Isabel was completely engulfed in their world of play and fun and I was freed to do housework and cook dinner. 

Then came summer.  Which, if you are a regular reader of this blog, you know has been quite full with vacations, camps, trips, medical visits, and summer fun.  This has been 3 months for Isabel to spend with her siblings and friends in the neighborhood, get comfortable in a pool, play outside a lot, and spend time with extended family.  She did well with a week of Vacation Bible School at church (in the same group as Lilly) and did some semi-private swimming lessons (again, with Lilly) at our neighborhood pool.  Summer is more chaotic with less routine, and Isabel has had to learn to cope with lack of structure...not easy for her as she prefers the predictable.  Our many road trips have taught her about the permanence of our home--we always come back to it when we've been away--and the older kids' overnight camps have taught her about the permanence of our family.

Through all of these months, we have been catching Isabel up on her immunizations and seeing a developmental pediatrician to assess her global developmental delays and determine what might be the cause of them.  Her doctor is quite thorough and ran a battery of genetic tests (all normal) and ordered an MRI of her brain (which she underwent yesterday with no sedation--what a trooper) to see if there are any clues.  If the MRI is normal, then we have to assume her delays stem from environmental/nurture factors and proceed from there.  Otherwise, aside from being emotionally immature and physically uncoordinated, she is physically healthy and behaviorally pretty normal, for which we are thankful.

I also spent time in the spring working with the school system to get an IEP in place so that when she starts kindergarten in less than two weeks there is already a plan in place and her teachers will already know of her needs and delays.  Isabel has been talking about school excitedly since the spring--watching Lilly get onto and off of the bus each day and do her homework made her excited to do the same--and she is still looking forward to kindergarten this fall.  I am eager to see how she does with the separation initially, and with the adjustment to classroom routines and a completely English-speaking environment.   We have school supplies, a back pack, and new shoes...so in that regard, we're ready. 

Isabel's English is coming along...especially her receptive English (understanding what is said to her).  In fact, tonight as we headed out for our family date night in the car, it dawned on Tom and me that she actually gets Tom's jokes sometimes now (and, like her siblings, rolls her eyes at them!)  Her expressive English (what she can say) is a not quite as developed, but she can carry on a pretty good conversation and tell some stories in Chinglish.  Today, she carried on an imaginary conversation with her friend, Yuan Yuan (the 12 year old whose family adopted her and was part of our travel group when we adopted Bella), on her toy cell phone, most of which was in English ("hello? what?  What you say? Why?  Where' your mama?")   I'm sure that being in a school setting with only English being spoken will help with the expressive language...can't wait to see. 

Isabel's early years are, and always will be, a mystery to us:  Abandonment in a rural village of Henan Province at around the age of 3, for unknown reasons. Developmental delays identified upon abandonment.  Living for the next 2+ years in an orphanage, with an intervening short stint of evenings and weekends with a "foster family."  On her first "birthday" in our family (the date they assigned as her estimated birthday when she was brought to the orphanage), I found myself musing on her early years, wondering who had carried her, given birth to her, and held her those early days and months.  Wondering what could possibly motivate a mother (or, perhaps, a father, or aunt or uncle or grandparent) to abandon their little girl at the age of 2 or 3?  Any number of scenarios cross my mind, and I'm sure there are many more scenarios that would never even occur to me, coming from a foreign culture and background; but we'll never know for sure.  So I am learning to become comfortable with the mystery and preparing myself to have to try to explain this mystery to her someday when she is curious. 

Because of the mystery of her past, however, we face more unknowns in her future.  I am certain that the road to her maturation and development will not be quick nor easy. 

But--here's the joy--the privilege of loving her, watching her gain skills, teaching her many new things, giving her opportunities to develop and mature...that privilege is ours.  Her family.

So here's to the next 6 months, and the next, and the next...may they continue to bring joy even amidst the growing pains, and may we each have eyes to see the long view.

    

Family

Family

Yesterday, just before our social worker arrived at our house for our 6-month post-placement visit, Isabel asked me in Chinese "why did I come here?"  She was referring to coming to join our family, since I had--just minutes before--explained why Daddy hadn't yet left for work since he was waiting for our social worker to come and talk about how things were going with Isabel in our family.

"Why did I come here?"  An interesting question, to be sure.  One that most children never need to ponder or ask their parents. 

So, I turned off my hair dryer (I was actually taking the time to do my hair before meeting with the social worker...summer ponytail on hiatus for 24 hours), squatted down to Isabel's eye level, and told her she came here because we loved her.  We had seen her photo and read about her, and knew that in China she didn't have a mama and baba and we really wanted her to come and be our daughter.  We wanted to be her Mama and Baba.  And so we worked really hard at all the paperwork and were so excited when China told us we could come and meet her and bring her home.

Isabel soaked all of these words up, looking me straight in the eye with a sheepish smile, and leaned into me.  "I love Mama and Baba" was her response. 

Family. 

We have had a lot of time with our families this summer, and it has been wonderful. 

A week at Deep Creek Lake in Maryland with my family was a fabulous blend of outdoor fun, yummy shared meals, late night card games for the grown ups, and just doing life together with cousins and Aunts and Uncles and Nana and Pap Pap and the "grand-dogs" for a whole week.  We had our own "red neck spa"--a blog post in and of itself for another day--but let me just say that spending time picking nits from little girls' heads with your family brings bonding to a whole new level.

Jared and Joshua's night to cook--tacos!  Well done, lads!

We pulled it off--despite the rain--everyone dressed and smiling!

AUnt Ollie and most of the girls...they LOVE their Aunt Ollie!

My girls and me...I am so blessed.

Everyone got in the water--even the dogs.  No wait, Nana didn't get in!



After a week at home to do laundry, recover from our vacation, and finish up Anna's summer swim league meets, the kids and I headed north to drop Anna off for a week of camp at Mount Gilead--a Christian girls' camp in Pennsylvania at which two of our nieces are currently counselors.  The drop off at the camp was easier emotionally for Isabel than the drop off for Jared earlier in the summer, since she had seen Jared happily return home three weeks later and she now better understood the permanence of our family. 

After dropping Anna off, we headed to Grammy and Pop Pop's house in New Jersey, where the kids and I spent the ensuing week hanging out with Uncle Jer and Auntie Em, Peter and Naomi, and Grammy and Pop Pop.  We also got to see several other cousins and other Aunts and Uncles. We had lots of fun doing summer things--like the County Farmer's Fair, swimming at a local lakeside beach, swimming in the pool, shopping for back-to-school shoes, and a fun day of hiking for Jared and me at a place called Hawk Mountain Preserve.  During the week, we got to watch how family cares for family as Pop Pop had knee replacement surgery early in the week--and Grammy stayed at the hospital for many hours with Uncle Jer and Aunt Judi taking turns checking in on them there.  And we got to be amazed by Pop Pop's determination to bounce right back and faithfully do his PT exercises to strengthen his leg.   Most of all, we got to simply enjoy *being* with our extended family, something that many years of military moves all around the world has made scarce.

"Tank-full Tuesday"

Many bloggers use weekly titles like "Wordless Wednesday" (to post photos only) or "Thankful Thursday" (to talk about what they are thankful for). 

I was just struck this morning with the many different things for which I am extremely thankful.  So, in the vein of Thankful Thursday on a Tuesday, it's "Tank-full Tuesday" because I am thankful and the tank of my heart is full of gratitude.

• Jared survived his 3-week stay at SALT--where the boys were challenged physically, emotionally, and spiritually.  He learned a lot, made some good friends, and rose to the occasion for the many challenges they threw at him.  And it's so good to have him home again, bug-bitten and weary as he is.
• Lilly and Isabel are, most of the time, really a lot of fun together.  They crack each other up and when they smile at one another, my heart melts.  Even though we are working on behaviors and attitudes in many areas with each of them, I am thankful these sweet little girls get to grow up together.
• Anna is maturing and is becoming a hard worker at home and a helper at church.  She is helping the preschool teacher for this week's vacation Bible school at church and is really enjoying it.  She is also enjoying her summer league swim team which is a little bit less intense than her year-round team.  She is dropping time on all of her swims and is one of the fastest girls in her age group, which is a nice change from being middle-of-the-pack during the winter season.
• I am thankful for healthy bodies and minds, for an extended period of an infection-free Lilly, for a church family where we are making new friends and hearing solid Biblical preaching, for neighbors who are friendly and fun and helpful.
• I'm thankful for a partner in Tom--for shared love, vision, and commitment.  Even though our lives are so full and time for us to be alone or "date" is limited, I am thankful for the fact that Jared and ANna are old enough and responsible enough (and Bella is comfortable enough already) for us to head out to run quick errands or grab a quick bite together now and then.
• I'm thankful for our families and the upcoming opportunities we're going to have to spend time with each of them this summer.

Tanks for reading!