Even If

 It took 2 years to complete the paperchase to adopt Claire.  That is a long time to dream.

In my pre-adoption mind, I imagined my little girl standing proudly in a high school cap and gown.  I imagined sending her off to college, and even dreamed of a wedding on some far off day.

More near term, I dreamed of reading books together in the hammock and being able to reference our shared literature in daily conversations.  I pictured visits to the museum, or hikes to historic sites.  Maybe sharing a mother daughter Bible study with stimulating interactions that help us both stretch our understanding.

I really do know better than to create an imaginary child before adoption, but somehow, my mind seems to, well, have a mind of its own.  As much as I try to keep an empty slate for a real child to fill up, little expectations find a way to lodge in my thinking. 

One such idea was that if God had healed Claire's heart, He would surely heal her mind as well.  I wasn't even conscious of this idea being present until we started trying to do some "normal" things that most young children can do easily.  Little tugs of worry started pulling on my heart.  When the first evaluation was done at the adoption clinic in Birmingham and I watched the testing proceed, those tugs got harder.  When I saw the scores and heard the doctor talk about oxygen deprivation and brain damage and very low developmental levels, my dreams were shaken and my heart came to a virtual stand still.

I had a lot of thinking to do.
Surely God didn't heal her body just to let her brain stay broken.  (But His ways aren't always the same as our ways.)

"Oh the depth of the riches and wisdom and knowledge of God!  How unsearchable are his judgements and how inscrutable his ways!"  Romans 11:33

The more I thought, the more I remembered that God loves Claire, and all of us, just as we are.  He doesn't love us for what we can do or for how much we know.  He just loves.  Sometimes He chooses to use the skills He has placed in us to accomplish things that bring Him glory.  Other times, He chooses to use those that the world would call foolish or worthless to bring even more glory to Himself. Often, He uses our weaknesses to display His greatness.

So I changed my expectations and my prayers.  Instead of asking God to just make Claire be all better, I asked Him to change my heart so that I can love her and see her through His eyes.

Oh, I still pray daily for restoration of the parts of her brain that have been damaged through lack of oxygen, exposure to powerful medications, and years of being in a hospital bed.  I believe God can heal.  I believe that brains can form new pathways to carry information. I will continue to work to provide treatment and care that offers the best opportunities for development.

But, I will also work to trust that God is ALWAYS good.  His choices are always best.  I will love my sweet girl whether she ever learns to put her clothes on in the right direction, or whether she can ever figure out how to run or jump.   If she can't do the things that most people take for granted, I will find something she can do to celebrate.

When great waves of fear sweep over me as I discover that she can't button her own pants, or trace a line with her finger no matter how many times and different ways we try, or she can't  distinguish the big puddles from the road they are on even when I'm trying to get her to stomp in them with her new rain boots,

 I will remember
 that God is in control of each and every outcome.
 He will direct our paths, and HE IS GOOD.

Joyful Day

A rainbow behind the piano promised a great beginning to a new day.

And, it has been such a nice day. 

I'm a bit surprised because they have been so difficult lately.  I really wasn't expecting so much ease and closeness and fun.

Lydia stayed with Claire this morning while I went to the doctor.  They actually PLAYED with the dolls and horses.  Later in the afternoon, Claire demonstrated her new skill by playing with me.  So much fun!   Thanks, Lydia.

My trips to the doctor give us one more thing to have in common.  Claire carefully examines my "pokes" and wants to know how many bottles of blood the doctor took. She likes to put band aids on my "little ouch" just like I put them on hers.   She has told and retold the story  that I'm having a picture with the "big circle camera"  (MRI)  tomorrow, and she is "all done"  and doesn't need to go with me. She joyfully sings out, "Mommy's turn."   See how much I'm willing to do to bond with my child.  :-)

Playing at the park convinced me that I couldn't put off seeing the doctor any longer. As Claire gets stronger, I need to be able to keep up with her!

We had to go out to get more diapers this afternoon, and decided to shop for Colten's Christmas gift.  Of course, this brought up a whole lot of discussion about each of Claire's friends being "far, far away."  At one point she started yelling, "STAY IN CHINA!" over and over.  I was tired of being sensitive, and yelled back, "NO, stay in America with Mommy and Daddy."  She was startled for a moment and looked at me with those big eyes. Then she giggled and started chanting, "Stay in America. Claire stay in America."   
She was very happy about it.

Then we talked about how the presents were going to get to Colton.  Apparently, if I'm following her trail of English stepping stones, she thought we were going to deliver the presents ...and that she would be going back to China.  Telling her she had to stay with us always was reassuring rather than depressing to her.  At least it is for today.

We made pizza for supper.  We just had so much fun, working easily together.  When I got out the flour (we use a couple of different kinds) I said, "1 cup of this kind, and 2 cups of this kind."  My precious imp pointed to the bouquet of flowers in a vase on the counter and said, "I want this kind flour."  Then she burst into giggles. 

Yes, those are green beans she is arranging on the pizza.  Don't laugh.  It was good!

A delicious work of art.

At bath time she revisited everyone being "far, far away."  When she ran out of friends, she switched to brothers.  But, when she named Ben, I said, "No way.  Ben is close."  She started giggling again. "Ben is clothes," she said, pulling on my sweater, "big, big clothes."  We giggled our way through a whole lot of people being close, or clothes, until Kelly came to see what was going on and added "close" the door to our fun! 

I'm so thankful for all the friends and strangers who are praying for us as we do the work of becoming a family.   I know God is answering your prayers because we are able to keep moving forward through the tough days, and can celebrate the joyful moments when they come.  I am so blessed to be Claire's mommy.

The Dance

Changing seasons are another reminder that what we see today will be different tomorrow.                     

 

Kelly likes to use the analogy of a roller coaster to describe adoption.

I experience it as more like a dance.  You know, those Jane Austen type dances where the characters are spinning about and getting passed from partner to partner and you never quite know who will end up close together and who will get whirled to the opposite end of the room. 

From our first meeting, Claire has come in close, then realize what  was happening and pull away.  Sometimes she would literally push us away.  Other times, she ordered us, "over there" while pointing across the room. 

The dance is different now.  There are no Chinese nannies to run to.  She is dependent on us, and is forced to come close to get her needs met.  Sometimes she comes reluctantly.  Other times, she gets willingly close and then backs off suddenly  for a time. 

The circles keep whirling.  Large ones, small ones, quick ones and some that are so very slow.  Every day it is the same old dance, and every day it is brand new.

This morning was a good example.  The night was difficult. In addition to  several nocturnal  trips to the bathroom, her breathing was noisy and sometimes labored.  When daylight finally came, we were both still exhausted.  She crawled under my covers like usual, but when I put my arm around her, she pushed it away.  I scooted up next to her to warm her chilly back, and she shoved me back.  She wanted to be comforted, but didn't want me to touch her.

Everybody stay back!

It is a confusing dance indeed.

Later, when I tried to give her a hug, she told me I was "poo-poo" and not to touch her.  As we discussed the boundaries for talking to people, she talked about wanting to go back to China.  I think she is starting to experience some of the classic symptoms of culture shock.  She wants to go home.  A little later in the discussion, I asked her if she would like to talk Chinese for awhile.  (I can't say much, but I have been using Rosetta Stone Mandarin for two years.  I figured we could say a few things.)  Her reply startled me a little, "Chinese, I don't know."  

And the fact is, I have never heard her say anything in Chinese.  She refused to answer people who talked with her while in Taiyuan or Guangzhou.  When we went to the Chinese market, she just stared at the people who tried talking to her.  I really don't know how much Chinese she does remember.  If she has retained some of it, she isn't going to let on right now.

Since she was homesick today, I got some dumplings for supper.  She was excited and shouted, "Yes, dumplings!" in the loudest voice I've heard come out of her yet.   But, at supper, she ate one dumpling and then wanted the other (not Chinese) foods we had.  A similar thing happened when we went to the Chinese restaurant.  The food is authentic.  She ate a little.  The next day, I offered her some of the leftovers for lunch, but she refused them. Instead, she wanted leftovers of things I had cooked.

I'm confused by her ever changing behavior.
I think she is too.
So we keep moving close, laughing, singing, connecting--and then pulling back, avoiding eye contact, refusing connection--until some activity causes us to look at each other again and the love wraps around our hearts and lets us know that this dance will get better if we don't give up.

 Love never gives up, never loses faith, is always hopeful, and endures through every circumstance. (I Corinthians 13:7)

I Can't Do This, or What in the World Was I Thinking!

Okay.  We have been home almost 6 weeks.  I know the drill, and I'm right on schedule with feeling overwhelmed and depressed and wondering if I have ruined our lives.  It is all part of the process.  Wish I could skip over this stage, but I expect the only option is to keep pushing forward without giving much attention to the feelings.

Claire told me yesterday that she wants to go back to China.  I get that.  Even though we loved being in China, we were so ready to go home after a couple of weeks.  You just get so tired of everything being different.  You want to walk in your kitchen and get a glass of water without having to think about it.  You want communication to be simple.  You just want to return to normal. 

So she is sad.  She misses her friends.  She grieves for the mamas she had in China.  I have to remember that her anger at me isn't really about me at all.  She wants to grow up like any kid, and be able to stay with the mama who gave birth to you and loves you.  I wish she could have that, too.  Somehow we will have to make the best of what we have. 

She just wants to be where everything is familiar. I understand.  I so want my life to return to normal, too.  I'm tired of sleeping on an air mattress and being waked up multiple times a night.  I want to read a book.  I want to go to the bathroom alone.  I don't want to go to the bathroom a dozen times a day with Claire, feeling frustrated each time because she can't seem to figure out the sequence for going, wiping, flushing and washing hands.  She still finds it fascinating to crumple the used toilet paper into a tiny ball before dropping it into the toilet, no matter how many times I tell her not to play with the dirty paper.  She still stands up and starts walking off the toilet before she has finished.  

I can't imagine what she thinks I'm collecting these samples for!  I'd be a little leery of someone who scoops poop into bottles with tiny spoons, too!

I never realized that going potty was such a complex procedure.  It now consumes a large part of each and every day.

I'm tired of having a child in front of my feet whenever I take a step.  Somehow Claire manages to push between whatever I'm doing and me.  If I'm brushing teeth, she is dead center in front of the sink and gets angry when I try to move her.  If I am doing dishes, she is between me and the sink, or cupboard, or dishwasher.  Our poodle wasn't even this annoying!

I can't say that I miss this big creature, but he could at least entertain himself for a while with a toy.

Repeating the same sequences over and over drives me mad.  Yes, Claire, I will sleep right here next to you after I go take a shower.  Yes.  I will brush my teeth first.  We have said it at least 50 times every night for 6 weeks. When will it sink in?

I wish there was a quicker way to make her feel safe at night.  Perseverance, mommy.   Eventually she WILL understand that you aren't going to disappear.

 

I wish we could eat a meal without a trial.  It would be nice to eat what I want without having to worry about whether Claire will eat it, and whether she has the exact same thing as I do.  And, just once, I'd love to finish my meal without having to follow her to the bathroom and wipe her bottom.  It really spoils my enjoyment of dinner. 

Part of the depression comes from spending too many exhausting hours with doctors.  Our pulmonology visit felt like a daylong nightmare.  They wanted Claire to hold her breath, to blow, to inhale and exhale.  She can't do some things and she refused to do others.  The only time she was able to hold her breath was when the doctor was trying to get her to take a couple of deep ones so she could listen to her lungs. 

It is so hard. I know Claire is scared. She doesn't understand a lot of what is going on. The parts she does understand usually hurt.  They couldn't get a vein again.  My little girl is getting tired of being a pincushion.  When Claire sits silently watching the needle while the nurse leaves the room crying, you know things aren't going so well.

My back hurts.  I injured it doing disaster relief in Vermont a year ago.  It was getting better but I hurt it again.  Having to lift Claire onto the exam tables and carry her when she refuses to walk into a room for testing has caused a lot of pain.  Bending at odd angles while dressed in a lovely lead outfit to hold her in unusual positions so doctors could view her trachea didn't help either.  Wonder if we get a discount on that series of x-rays since I did so much of the work?

I don't think the mutual pain all these doctors visits are bringing is helping us enjoy each other much.  I'd like to go to the park and play on swings, not go have more x-rays, tooth fillings, blood work, and hours in waiting rooms.

Sharing a warm cup of tomato soup after our long day at the doctor helped lift our spirits.

Tomato face smiles are the best!  Teddy bear just arrived and couldn't have tomato soup yet.  She was a gift from the x-ray folks who admired Claire's bravery.

We are both tired of the hard work of communicating.  We are both tired of doctors. I sometimes feel like things will always be like this.  What if she stays at the "developmental level of a  two year old" forever? The doctors at the adoption clinic in Burmingham pointed out the evidence of oxygen deprivation and explained the possibility of irreversible brain damage. What if they are right?  What if she never learns to read, or write?  Or worse, what if going potty by herself doesn't happen?  What if she never figures out how to put her clothes on by herself? What if she doesn't learn how to play with a toy and I have to spend the rest of my life trying to show her what it means to play?  What if she never learns how to walk down a stretch of sloping ground?  Will I be holding her hand and coaxing her to take another step when she is 20?

STOP.

Exhaustion and runaway thoughts are never a good combination.

Jesus, I need YOU.  I can't do this.

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (II Corinthians 12: 9-10)

Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. (Romans 5:  3-4)

HOPE.

Yes, that is the promise I need today.  The brain damage, the hospitals, the doctors, the medicine, the potty training, the sleepless nights are not the whole story.  The future is in God's hands. He is good.  He is powerful.  The future He plans is the one I want. It is best. 

So for today, I will choose to live in hope and enjoy the moments when Claire is stringing beads for matching bracelts, or dancing to the tune her puzzle plays, or baking cookies with me. 

Pumpkin Cookies by Claire.

I can't do this. 

But I do remember what I was thinking. 

I was thinking about God and His amazing love.  I wanted to be like Him.  Just like Claire imitates the way her daddy stands with one hand on his hip, or crosses his feet when he puts them on the coffee table, I want to love like my heavenly Father.   And, because I'm doing the thing He asked, and loving a child He loves, HE will provide strength and wisdom to get us through the hard parts.

Ben is the Brother, I am the Little Sister

Big Brothers are supposed to be annoying! If he passes by without bugging, Claire will chase after saying, "Toot, toot,"  which is the sound Ben makes when he gently tugs her pony tail.

Trying to be as tall as Ben.  Yes, she is actually smiling. That is the look she makes when she knows you are trying to take a picture.

Folding Ben's laundry is fun.   And Ben is even kind enough to take it too his room before he refolds it all.     Claire's technique still needs a little work.

Wearing big shoes is so funny!

See how Ben is sitting--imitate.

Drinking Earl Grey with Ben. It doesn't matter how it tastes as long as it is what Ben likes. Ben looks pretty good in the bead necklace Claire made for him, don't ya think

So Tired

The absence of new posts here does not mean that nothing is happening. It means that each day and night is filled with so much that I can't even keep up with processing it in my own head.   It means that Claire demands my attention all day long...today she literally started wailing at the top of her lungs anytime my attention wasn't fully on her.  Yup, wailing when I went to the bathroom, wailing whenever the phone rang (sorry to anyone who called today) and hollering if I talked to someone else in the house.   It means that my nights are broken into short snatches of sleep between her waking to go to the bathroom, waking just to see if I'm there,  and trying to crawl onto my air mattress with me during the night.  I will let her stay if morning is only a couple hours away, but she twists, turns, flings her arms and generally leaves me feeling a little beat up--not a restful way to get through the night--so I am putting her back in her bed multiple times a night. I'm on a mattress only a few feet from where she is sleeping.   Eventually, she is going to settle down and start sleeping through the night---right?

I'm also weary from our trip to Birmingham.  Anytime I stay in a hotel is not a good time for sleep.   Spending an entire day doing medical stuff is exhausting.  Not even a lunch break.  Kelly ran to McDonald's to bring back some food to eat between doctors. While we don't have results back on most of the tests, the things we did learn so far are a heavy burden to my heart. Developmental and IQ testing sort of matched the suspicions that were growing in my mind--but I was really hoping to be wrong.  I hated seeing those numbers in writing.  I'm struggling against the temptation to worry--okay, panic is more like it--but am endeavoring to leave my fears with my heavenly Father and trust that He knows what He is doing.

A little reminder of God's care for the details came when we got a check in the mail from friends to help cover some of our travel expenses.  Then, some unknown person paid half of our adoption clinic fees.  Just when I was wondering how we were going to manage with the septic tank giving out, the medical bills coming in, expenses for Dan at college, and the changing car scene after Ben's accident a couple weeks ago, God reminded me that He has all of it.  I don't need to worry.

Thankfully, after half a day of practice with pretend phone calls, Claire mastered the "be quiet" routine.  Good thing, because the next call was one of the doctors.  I had asked that they review the MRI results to see if Claire's other organs were visible, and if they were positioned correctly. If the heart is in reverse, it is possible that other parts are misplaced as well.  The good news is that everything but her heart seems to be where it belongs.  The bad news is that the spleen and liver are enlarged.   Of course, this means we need to schedule appointments with  more kinds of specialists and have more tests done.  Glad I'm remembering that God has all these details and I don't need to worry. 

A little music, no matter how out of tune, brightens any day.

A big red leaf will make the table pretty and helps us all be cheerful.

A picnic lunch with "my sister."   It was good learn where Jenny is staying now, but it continues to be difficult not to worry about the choices she is making. 

These two don't appear to have any worries of any kind.  Wish that hammock could hold one more so I could take a nap!

Hospitals

There are so many thoughts related to grief and God and adoption floating in my head. Children's grief often comes in really intense spurts at the most unexpected times.  I'm sure we will continue to process this in new ways for a long time.   I just can't seem to find enough time to sort any of my thoughts  out and put them down. By the time Claire is sleeping I'm ready for bed myself.

However, so many friends have been praying for us as we entered into the big medical week that I need to do a quick update before I collapse.  This is Saturday and I get to sleep in my own bed while Kelly takes a shift on the floor next to Claire's bed.

Tuesday we went to the dentist for x-rays.  Claire gave us a few determined "no's" about getting them finished up, but she cooperated when she figured out that I could be more stubborn and persistant than her.
She was very   happy with her prize though.  The glasses are white inside and turn pink when exposed to sunlight. 

Wearing them upside down helps keep them on her teeny tiny nose.

Wednesday we spent the whole day at the children's hospital meeting with Dr. Shores.  She won't be our cardiologist long term because she is not going to be working at Children's after the holidays.  However, she decided to see us when she had an opening so that we wouldn't have to wait until December to get in.
Lots of tests, wires, and "stickers on your tummy" kept us occupied.  The ultrasound took a couple of hours. It got really difficult to keep Claire still. She kept telling me to "put your shirt on,"  "drive the car,"  "go in the house."    After all that time, the ultrasound only raised more questions.  Which means that we got to plan more adventures.

Thursday we spent all afternoon answering questions for pre-anethesia.  Nothing happens quickly. You wait in line to get in the parking lot. You wait in line to register.  You wait for an elevator.  You wait for your appointment.   I really hate hospitals.

Friday we had to be there by 8:30.  No food or drink after midnight.  Claire did not understand why I wouldn't let her eat. I did my best but our language skills just weren't up to helping her understand information she did not want to hear.

Check in  was annoying.  They put me down on the paperwork as Claire's "legal guardian."  I told them I was her mother but they weren't buying it.  It took some discussion--yes, I was ticked--but we finally got them to "let" me be her mother.  Then I discovered that they had marked her as "Hispanic."  I told the woman she wasn't Hispanic and she replied, "Don't worry none, honey.  Latino is on the same line.  We got  you covered."  

Take a deep breath. Count to ten.  Remember that stupid people can't help it...

We finally got her to understand that Chinese people are Chinese, not Hispanic or Latino.  Sigh.

We went into the MRI waiting area. There was no one to check us in for about a half hour.  When someone did arrive, we were given papers to fill out.  They had all those questions we spent all day on Thursday answering.  Oh well.  Do it again.

They were running behind.  We didn't get in until 11:30.  During that time people came into the waiting room with their McDonald's bags.  Claire and I walked in the hallway. When we were able to sit back in the waiting room, an accident victim was wheeled in right in front of us. A very bloody accident victim.  Not a great way to help my child not be afraid.

Finally, they took her back.  I got to go with her.  She was awake while they put on the stickers and wires, the face mask and the "squeezy on your arm."  Then she was out. I hate seeing her unconscious and  attached to medical equipment.  I really hate it.  I left when ordered, reminding them to get me so that I would be there when she woke up.

It took 2 1/2 hours.

There was a shift change or something.  No one got me.   When they told me I could come in, Claire was sitting up in a high-sided metal crib in a room with other children in various stages of recovery.  It looked just like an orphanage. And, her mommy wasn't there when she woke up.

The nurse had given her a soda to drink.  Claire hasn't had soda.  She hates things with bubbles.  When I got to her she was making weird little sounds between a burp and a cough.  I told the nurse I wasn't in the habit of feeding my children poison and took the drink away.  Claire didn't want it, but she thought she had to drink it because the nurse gave it to her and told her to drink.  That stupid nurse tried to tell me that Claire had specifically asked for a Sierra Mist.  I could have strangled her.  She didn't even know that my girl doesn't speak much  English, certainly not enough to ask for something she has never seen before. 

I dressed Claire and the nurse had me sign a paper for discharge.  She called the doctor who was supposed to check Claire before we left and I heard her tell him that she looked fine. So, she was released over the phone.

Then the fool woman--sorry, I was out of respect for her profession by this time--told me to leave  Claire there and go get the car.  My baby had already waked up thinking I was gone.  I wasn't walking out again.  I picked her up and carried her.

Oh my, she is heavy to carry out of the hospital, down a block, across the street and through a parking garage.  My back is still feeling it.  But that is okay.  She  didn't need to be left to be afraid again.

It didn't help my attitude toward hospitals when I got to the parking garage and discovered that the nurse didn't give me the parking pass.  I had to pay  for a full day of parking even though patients with appointments aren't supposed to pay.  My admission paperwork and my discharge paperwork wouldn't suffice to prove anything.  I had to have the piece of paper with the parking word on the top. Oh well.

We made it home.  Claire continued with the weird sounds all the way home.  I think she had swallowed way too many bubbles on top of all the drugs.  I know her throat had to hurt from the trach tube, too.

She vomited for a couple of hours, but by evening she was bouncing around again.

She kept recounting the bits she remember.  Today we continue to go over the story.

"Doctor, stickers on your tummy, clip on finger, squeezy on arm, bubble fish on face, poke hand, ouch.
Go to sleep. Big, big circle camera take a picture heart.  Mommy sit chair. Wait a minute, wait a minute.  Claire wake up.  Doctor bubble water, tummy ouch. Mommy drive red car, house."

Then she repeats the part about mommy waiting.  She checks to see if I went anywhere or if I went to sleep.  She is so glad that I just waited and looked at the door until she was awake.

I really hate hospitals and people who are so stuck in "procedures" that they forget that they are taking care of real people.

But, I love my sweet, brave girl.  She has more courage than anyone I have ever met. I'm continually amazed at her ability to face the unknown and the uncomfortable with such grace and cheerfulness.

P.S.  We don't have any information from all this testing.  The doctor will be calling me in a week or so.  In the meantime, we are headed to Burlington ( Uh...that would be Birmingham.  I wish it was Vermont, but that just isn't going to happen anytime soon.) to the adoption clinic for another full day of testing and evaluation. Hope I can be as brave and cheerful as Claire!

Giggling hard while bouncing on her "horsey."

Excited about getting ready to go shopping for new clothes because she has grown 2 inches taller and gained 2 pounds.  The other clothes don't fit so well anymore.