Great Expectations, Part 4: Community

We're in hospital again, having finished surgery number 2 for FuXia this year.  There is much to ponder, much to consider about parenting children from hard places who have special needs.  Meanwhile, this is my first chance in some time to pause and consider again the expectations I had going into adoption and how they've been redefined.

An adoption journey tends to foster community.  Friends and family take interest and former draw in close to cheer you on your way.  Your community of worship takes interest, perhaps, and supports you in a myriad of ways.  You begin to make new friends by way of adoption and, if you choose, blogging.  If your child has special needs, you often meet new friends through that process.  We even met new friends through the foster home where our children first lived!

It can be overwhelming, this community, in its numbers, and at the same time it can be so quieting to know in a hard or dark moment the friends who pray and the friends who share in common and the friends who hope; there is much hope, too, in being able to pray for others.  When we came home from China the first time, and our entire Sunday School class surprised us with the makeover they gave our home, we were overwhelmed.  How do you say "Thank you" for a gift that plays out as support on a daily basis even now, four years later?  Come to think of it, how do you continue to live and speak in thanks four years later, when that same group of people are still asking how they can love and pray for and help your family?  It is a humbling, if not bewildering, experience.

I don't know if it's the Southerner in me, or if it's the sequential way in which we train ourselves to view life, but that moment of arriving home to our beautifully remodeled house in 2008 was a once-in-a-lifetime moment.  It's the kind of moment that tempts you to surmise, "That's what it was all leading up to," or, "That's when everything came together."  It seems like the perfect moment, the apex, the best.

And then the need continues.  That moment, or the one when people helped build our porch, or the one where our yard was landscaped, or the one where different friends shared financially, makes the dailiness of our ongoing journey seem unfaithful, almost.  Why on earth would anyone spend a month of Saturdays and a good chunk of hard-earned money, to make our home easier to live in, or our adoption feasible, if the complications of our life are just going to keep spilling out?  It offends some sensibility deep in me that obviously has little to do with grace.  I have not embraced the freedom of hope enough to breathe through this living and giving without wrestling with guilt over not being able to provide everything my family needs by myself.  There are times when I reflect and give thanks deep within for the gifts we've been given and the manner in which people continue to ask how we are doing, and then suddenly I will find myself struggling with embarrassment over the fact of our evolving medical journey.  Why is that?  Is it that I'm afraid someone will feel compelled to send money, and I need to be in control of not letting that happen?  Do I feel that we somehow, having struggled with our beliefs and faith as we adopted, should have had smoother sailing as a reward for our risk?  Is it that I like to have attention when I'm joking or story-telling (again, in control), but not when there's a real need I can't fix?

What a wonderful giving and breaking gift is Community!  This life with my husband and my boys is not episodic, and though we will embrace and rejoice over the once-in-a-lifetime LOVE our community has repeatedly shown us, somehow, ridiculously, we'll still wake up tomorrow with needs and fears and bills!  And yet, our Community loves us each day, and prays, offering fellowship and down-time, herb planters and date-nights and spontaneous apple pie deliveries!  Every day brings encouragement and new hope.

What on earth is this!?

It is love.  Love for our neighbors as much as ourselves, lived out by friends and family, lived out knowing that life does not encapsulate neatly, and that giving and loving is not such a linear thing.

There is not so much a once-in-a-lifetime moment.  It is living the lifetime together.  I had no idea it could look like this, and it challenges my pride and my understanding of faith.

Great Expectations part 3--doctors

I never expected to have to become such an expert on my children's bodies.  I still trust that we are blessed to be near as good a facility as Vandy Childrens Hospital, and we have received excellent care from many talented folks there.  At the same time, I am so glad to have answers for YoYo's care that I could not get before now.

I had no idea it was possible to be so thankful for the wisdom and compassion of a doctor who knows.  We had a long day at Johns Hopkins last month with YoYo, starting with his outpatient cystoscopy, leaving recovery to visit a pediatric GI, grabbing lunch in the cafe, and returning to the urologist's office for a final consult.  YoYo was a great sport throughout, patting my back as I teared up and said, "God brought you here to rescue you before Baba and I even knew you--He took care of you until we could bring you home."  Dr. G marveled at YoYo's mobility; apparently, most children with his condition are only able to walk with assistive devices, if at all.  He marveled at the odds YoYo has beaten, and his next words were humbling.  

"You know, here we have all kinds of sophisticated equipment to see children in utero, and when a child is seen with hernias like his, with everything exposed, the pregnancy is terminated.  But they don't have all that equipment in China, and those children are born, and they get the chance to come here and we get them fixed up as best we can and they have a life.  This child is a gift from God."

"They get the chance."  That's another post for another day.  I am thankful beyond what I am clever enough to say for my two sons, that they were given a chance to live.  I am thankful I get the chance to be their mother.  And I am thankful for good doctors.

Here's a video of Dr. VB, FuXia's orthopedist, discussing arthrogryposis and his philosophy of treatment.  While I don't expect you to watch all three parts of it, it's worth a glimpse, if you like, and I thought it worth posting.  What I treasure most is a moment when he describes the turning point in a patient's treatment, when a child who has screamed in pain in clinic at his hands comes back and seeks him out to eagerly share the latest accomplishment or achievement, be it walking or kneeling or straightening a leg.  And he begins to cry as he thinks about it, musing that, "These children teach us so much."

That is a man of peace.  That is the doctor I want for my child.

Great Expectations, part 2--Teach your children well

Yesterday, I was excited to see familiar faces at Shriners.  Several tables were pulled together in the cafeteria, teeming with families who came to arthrogryposis through adoption.  The fellowship of, "Ohmygosh, I KNOW!  We get that at our house, too!" is a mighty one.  So much talk centered on adoption issues with children in various stages of treatment.  It was so energizing...and challenging...and saddening...all at once.  

Treating and managing AMC, arthrogryposis multiplex congenita, is a marathon.  The rude awakening is the day you and your child realize that the miracle of walking does not signal the end of the pain and surgery.  You each have to find ways to pace yourself, and as always, adoption becomes a big variable.

In our first year of AMC treatment, here are the things I did not expect to have to teach our adolescent:

--It is okay to cry out when the doctor hurts you.  It is okay to say, "Stop."  

--It is okay to cry or tell me that you hurt.  I want to know.  I want to take care of you.

--Wake me if you hurt or need to toilet at night.  I will come.  I want to take care of you.

--It is ok to wake me up at night.  I will not be angry.

--It is ok if you have an accident at night.  I will not be angry.

--It is ok to throw up.  I will not be angry.

--It is ok to tell the doctor you hurt.  He will not be angry.  

--It is ok to be afraid. 

--Even if you don't walk, I still love you.

--Even if you have a crooked body, you are beautiful.   

--It is ok to be angry with me.  

--If you fight when I carry you, you will fall and get hurt.

--If you fight when I carry you, I still love you.

--It is not okay to hit me.

--If your body hurts, I still love you.

--Your wheelchair is not the reason I don't spank you.

--You are fearfully and wonderfully made.

I never expected to have to give an adolescent child permission to hurt.  We are working on communicating pain using the 1-10 scale, and he seems embarrassed to admit to anything over 5, as though he has failed.  He tries to give the doctor the answer he thinks the doctor wants.  We practice making lists of questions for the doctor, and we ask them, even if I already know the answer.  I outsource walking and exercise battles to our PT, because then his anger and pain don't become baggage or weapons in our relationship.  I resist fury and choose to be glad when he admits, "I don't believe you," because then I at least know where I stand with him, and he has talked about it and told me the truth without fear.  Each facet of that last sentence represents an emotional milestone. 

I never expected to struggle over whether a wet bed was an act of revenge, a nightmare, an attempt to control at least some aspect of one's body, anxiety, or lack of sensation from anesthesia.  Suddenly, I find myself back in a position of reminding my 6th-grader to toilet every blessed few hours--a thing I haven't had to do since the first few months after we got home, when he was still adjusting to not having toilet times dictated.  Is he trying to make me be responsible for his toileting, or is he fighting his own body?  

There are other moms in this boat.  One did not expect her daughter to still need permission to say she hurt after two years being home.  Another did not expect her son to be surprised at her presence when he was in hospital--he thought he was a bad kid in China, because the "good kids" got visits in hospital.  Another was completely surprised when she heard, "We wet the bed at night--after it got dark, nobody was there to hear us call for help."  

So many of our children are model patients, but the reasons are sad, perhaps tragic.  The high pain thresholds are from years of learning that nobody will come and tears are futile.  The fear of beatings for vomiting, wetting, or crying are real fears, because many of our children have seen and felt terrible things.  The avoidance of eye contact is because they've heard they are worthless, again and again.  

Each time we cycle through the same battles, I am reminded that the survival instinct is one with deep and primal roots, and the child who has lived starvation and poverty and misery, the child who has lived without hope of love or medicine or lack of pain is a child who has years of unlearning to do.  Each time we cycle, we are a little farther than the time before, and we are a little closer to whole.  I am thankful, in ways I did not expect, for the power of Love to uphold and restore and heal.    

Great Expectations, Part I--Family

Last Thanksgiving, a strange thing happened.  Someone showed me an online listing of waiting children from China.  

You know what happened next.  The wish that is never too far beneath the surface, the desire for a little girl, stirred, and of course I saw a picture and blurted, "She has arthrogryposis!"  I couldn't believe how mild her condition was.  In the arthrogryposis spectrum, FuXia is sitting pretty; most of his challenges stem from lack of treatment in early childhood.  This little girl's arms and hands aren't even visibly affected.

I began to imagine what it would be like to begin again.  I told Shane that if it needed to happen, God knew what we needed--medical bills, tax rebate, miracle wad of $30K for another adoption, a different house.  The list was impossible, but so was the idea that we'd receive an anonymous gift of $25K for FuXia's adoption in 2010--and that SO happened!  

With December, we received several gifts and cleared all but one medical account.  As we checked into RMH two weeks after Thanksgiving, the IRS called--at 10:30 pm--to approve our rebate.  I began to wonder.

The next morning, I learned FuXia needed more fixator hardware--this month's surgery.  Bone will be cut, and following that phase, another surgery will remove the fixator.  FuXia will likely need a pelvic osteotomy this summer with a different kind of fixator to correct hip dysplasia--surgery to install, surgery to remove.  And yes, that does come to five surgeries in a year.

Days later, I learned YoYo also needs a pelvic osteotomy--a more intense one.  He'll have tissue expanders to create skin for scar cleanup, and he'll have what's called a "midline reconstruction."  He has to gain 5 pounds--our greatest annual gain so far is 2.5 pounds--and we have to learn more about his heart murmur.  He takes a new antibiotic 3 times daily to combat the bacterial overgrowth that's a result of his short gut, and he has to avoid simple sugars (table sugar, fruit, sweets, juice).  We're waiting for samples of his fancy smoothie drink.  I can't imagine what it will be like to try to keep him immobile for six weeks while his devices do their work.  

I'm eager to get started on these things, to move through them and marvel at the what life holds for my boys.  That means the idea of another adoption is a dream deferred for now.  Not only am I at my limit for traveling to the specialists the boys need, but I'm also stretched to be aware of the boys as people, in a parenting sort of way.  When Shane's working late-night rehearsals for a show, the routine is homework, cook, feed, bathe (both need help with this), toilet (both need help), dress (help), antibiotics for all, tuck in, add pull straps to FuXia's AFO, prayers & kisses.  Getting ready for bed sometimes takes over 2 hours; bathing alone involves putting chair and stool in the tub for FuXia, carrying him to the toilet, helping him undress, carrying him to the tub, setting up his shower supplies, cleaning his pin sites afterwards and drying him, helping him get his pjs on, carrying him back out of the bathroom and into his chair, emptying the shower of chair and stool and rinsing it down, putting YoYo's floormat in, getting YoYo in and set up, and prepping YoYo's ostomy supplies while he showers.  It is so easy for the teacher within to check things off a list and not be aware of where my little people are living and feeling and hurting or cheering.  The parenting part of parenting, as opposed to the caregiving part, becomes deliberate--it takes work--and I really have to be aware of that, because meeting physical needs without interacting relationally is no better than institutionalized care, and we're trying to grow people.

I'm realizing, in this, that this is our best for now.  I can still say, without hesitation, that I love this life we have as a family together.  I love my boys, I love my husband--I am blessed with so much joy, though the work is h.a.r.d.  It's good--and we are the four of us right now.   

Great Expectations-an Introduction

As a recovering teacher, I feel it necessary to preface the next few entries with a word of explanation.  My mind has swirled as I've imagined what this year will look like.  Expectations are changed entirely.  That is not a complaint.  At the moment, it's a status.

I thought YoYo was on a steady path, and once we figured out his kidney infections, we could set his development to "cruise."  Instead, we're investigating a heart murmur and anticipating summer hospitalization while shifting his diet to combat bacterial overgrowth.  Wow-that's an altered expectation.

We knew FuXia would have an external fixator.  We didn't know it would mean this much travel or losing control of much that he worked for--and he has at least 2 surgeries before this phase is complete.  Waaay different expectation.

While our adoption rebate was sufficient on paper to rid us of nearly all non-mortgage debt, the time that lapsed before we received it saw us amass over $ 4,000 in medical expenses (unrelated to FuXia), and we lived on credit cards we'd held in case of emergency.  In the end, even with added interest and enough financial gifts from friends and family to cover nearly all our medical bills, we are clear of half the level of debt we originally expected to put behind us.

2010's changed expectation was the all-time winner--we didn't expect to repair a rotten foundation 5 days before leaving for China to adopt FuXia!

I'm dealing with flux.  It messes with my head.  I don't know anyone else as divided between right and left brain as I am.  The artist in me feels the pulse of a child-centric home, values the unstructured side of my husband and how it allows him to father so well, and doesn't care if I go to bed with dishes in the sink.  The list-maker in me wants to reduce the number of things to maintain, is obsessed with organizing medical supplies/schedules/insurance, and resents the recent intrusions of field mice.  

When I was teaching, I once took a personality test.  The high schoolers took it, and it was neat to see them react to the results.  Our learning services teacher, who orchestrated the whole thing, shook his head when he gave me my results.  "I don't get it.  Usually, it's not a big deal to see a kid so evenly spread out across the spectrum, but as you get older and mature more, certain tendencies and pathways are naturally supposed to become more dominant.  You don't really have a dominant pattern."  I actually teared up.  I had hated taking the test; I couldn't stand the "either-or" situations it presented, because all I could think of was how things don't fit into boxes like that or how nobody responds in the same manner every single time or how everything represented such a Western mindset.  UGH.  I kept answering, "It depends," in my head, and those words were never an answer options.

So I'm fighting myself, with a needle and thread in one hand and a label maker in the other.  I'm looking at my house, my artspace, and the way our boys are evolving, and I'm finding changed expectations.  I'm going to do in writing what I do with sewing or knitting.  I'm going to spread the words all out on the table, like so many charm squares and yarn, and I'm going to look at every single thing and touch it and turn it over.  And when I stack it all back up and shove it onto its shelf, I'm hopeful that even if it doesn't make any more sense than before, at least I'll have looked at it and named it.  Naming every living animal was, in the Biblical telling of creation, one of the first tasks given to the people made in God's own Image.  I wonder if that was to make Adam feel safer, like a stakeholder or someone of worth within his environ--if part of his identity, or his conceptualizing of his identity, was bound up in naming the identities of and caring for other living things.

Expectations are legion, and I'm going to name names.  I'm actually looking forward to the idea--much more than I would anticipate making resolutions.

Goodbye, 2011

This year was the most demanding year of my life.  I'm fairly certain I can say that without exaggeration.  I am compelled to look over the year, both in thanks and in awe that we all survived!

January--We started on the road, driving on our 17th anniversary to Philly.  At Shriners again a week later for FuXia to have his tenotomy.  Then YoYo had a kidney infection and ER time.

February--FuXia stood and learned he would be able to walk! 3 out of 4 weekends were trips to Shriners--and they started flying us and covering travel costs.  YoYo took the whole month to recover enough to look like himself again, and he got the flu.

March--FuXia took his first steps at the parallel bars during PT.  From then until September, we went to PT at least 2-3 times weekly, and he got his AFOs.  Shane was diagnosed with Meniere's Disease, and has since not recovered hearing in the left ear.  YoYo was accepted into CPA and we received financial support for that!

April--We stayed in Philly for most of the month while FuXia did a PT intensive program.  By the end, he was spending a lot more time in the walker.  YoYo watched way more TV than he should have, thanks to hours on end in the PT waiting room.  And my computer crashed.  We also filed our tax return, expecting a fully refundable adoption rebate of $17K+.  Didn't know at the time we'd have to wait 8 months to receive it.

May--We became chicken farmers!  And then Dr. vB blew us all away when he said our treatment goal with FuXia was for him to be able to walk without a walker at all.

June--We had one visit to Philly, and YoYo went to day camp.  I had lunch with a Mom-friend, and she said my family had been through hell in the year previous.  Hahaha!

July--We had a vacation and got to stay with the GOURS! YAAAAY!  After we came home, YoYo got infection number 2, went into seizures, and ended up in hospital for the weekend.  We came home on a Sunday, and 12 hours later, a TV crew showed up at our house with a country singer to film a reality show and landscape our yard.  That was one weird month.

August--FuXia walked into school, and it changed everything.  YoYo started kindergarten, and he thrived under the guidance of an incredible teacher.  Shane and I had A DATE-we went to U2's Nashville concert.  And we celebrated our one-year anniversary of being a family of 4.

September--The most normal month of the whole year, capped off with a visit from the Gours!

October--We were guests at the Nashville Shriners Circus.  Our TV show premiered, we made the front page of the Williamson Co. section of the Tennessean, and we tried to prepare for FuXia's external fixator.

November--Travel in earnest to Philly began again.  FuXia's surgery to get an external fixator.  We were welcomed graciously by the Weaver family for Thanksgiving.

December--Two visits to Philly for FuXia and a second surgery scheduled.  A huge visit to Johns Hopkins for YoYo, where he had an exploratory surgery and I learned so much more about his body before we talked turkey about surgery to come for him in 2012.  We finally got our tax rebate the day before Christmas Eve.  And both sets of parents and my sister (Yay!) came over Christmas Break.

So here it is, 2012.  You're here.  I already know I can count on you to hold two surgeries for FuXia and one or two for YoYo.  We'll have a lot of travel together, you and I.  Just know you don't have to try to out-do your brothers 2010 or 2011, okay?  I respect your potential, and I'm just trying to wrap my head around how to even navigate a personal goal.  We'll stay in touch.

And 2011?  Goodbye.  Thank you for stretching us all.  You were very adventuresome.  Now please go home.

Lovely feet

FuXia's knee has improved steadily over the course of fixator treatment.  This stage is called "distraction," and I marveled at the irony of potentially having to distract my son from the pain it would cause.  Remarkably, he's had little pain from the fixator.  Most of his discomfort has been related to the shrinkage of his new muscles from disuse--it is incredible how quickly our bodies can grow accustomed to walking every day, and how intensely they can complain when they are denied that exercise.  Each time we've attempted to stand in the walker, FuXia's quads bounce like rabbits and continue to spasm long after he sits back down.  I am hopeful, though, because his body adjusted to walking inside of 6 months of treatment after years without ambulation.

Post-op fixator

We may well be finished with the distraction phase before our next visit to Philadelphia.  Surgery January 25, and we'll hear what happens next.  I am learning the difference between the times that a lack of forthcoming information is because the doctor's plan is dependent on FuXia's responsiveness to treatment and when it is because he just forgot to tell us what to expect.  This is a frustrating lesson to learn, but I hope I am getting better at discerning.

2 weeks after surgery

When FuXia came home last year--has it really just been sixteen months now?--we wanted so much to let him feel valued, to help him find his identity and place within our family.  YoYo's first preschool teacher, one of the most old-school Southern Saturday-hairdo fixin'-a-ham-for-Thanksgiving women I've ever known, spoke gently to him, "You are fearfully and wonderfully made."  I cried the first time I heard him say, "I am fearfully and wonderfully made," and I knew he held that in his heart with joy each time he said it.  One of our favorite times was bath time, and he would dance in front of the bathroom mirror wearing nothing but his pouch, delighting in himself and declaring himself wonderfully made while he was laughing at his nakedness!  We hung a long mirror on his wall next to his changing station, and each time we cathed him, he would watch the mirror and watch us care for him.  How could we find this for our FuXia?  

3.5 weeks after surgery

Seems the answer is the same--we weren't the ones to find a verse for YoYo, and it was a dear friend, Lao T, who wrote to FuXia the day before the fixator was installed.  FuXia was feeling particularly talkative that day, and he mentioned how he would like to go back to China with his walking legs and see all the same places he was before he could walk, as well as the places he couldn't go in the chair.  That night, Lao T emailed from China.  He said, "Have courage.  Trust in God working through your doctor.  'How beautiful are the feet of those who bring good news!'  I know someday you will come back to China...I know it will be painful for a little while, but for the rest of your life you will have beautiful feet.  I know God wants you to have that.  Have courage."  FuXia read his email out loud to us, and his entire face was full of his smile.

5 weeks after surgery

How beautiful indeed are those feet, and what good news it is, that a child cast aside because his body was twisted has a chance at walking, a family filled with love, and a head slowly filling with dreams.  What good news is hope!