Amazing Nannies and Claire's Hair

There are so many ways that Claire's nanny's poured love into her life. They are truly amazing. But, this week, I am simply astounded by the fact that they let her hair grow long. 

Claire has very limited self-care skills for an 8 year old. 

She can  dress herself  IF I lay the clothes out in a particular configuration and there are no buttons, zippers, or snaps.

She can brush her teeth IF I put the toothpaste on the brush--and then only the two front ones and the lower left side.   She can't figure out how to turn the brush to get at any of the other teeth.  She mostly just sucks on the toothbrush.

She is making progress in potty training.  She recognizes her need and makes it to the bathroom in time.  She can wipe after urination--except when she gets in a rush and wipes before she stops wetting.  But, she rarely hops off the pot while still going.  I haven't had to mop up puddles for awhile. Hurray!
Frequent loose bowel movements throughout the day still require intervention from an adult to avoid a mess.

She can wash her hands all by herself.  Water, soap, and dry! 

Brushing her hair is still completely out of the question.  When she tries, the brush and comb just end up in a total tangle.  And her sense of style can be pretty...ahh...interesting.

Washing hair is a real pain.  And it must be done daily.
She has large patches of oily, flaky skin that piles up and fills her hair with  sticky "snow" that won't brush out.  She has alopecia areata.  That's an immune disease where the body attacks the hair follicles and makes the hair fall out in circles.  The medicine for it also leaves her hair goopy.

We have given up washing in the bath.  She hates water on her face and struggles to tip her head up extending her neck. 

So, each day, she climbs the stepladder and gets on the kitchen counter.  She lays down while I wash her hair with the sprayer in the kitchen sink. Then we dry, comb, and style.  It takes nearly an hour.

I admit that there are days when I'd like to make her cut it off.  She doesn't hold  still for combing or styling and is very particular about what type of ponytail she will wear. 

Just a tiny trim to remove the split ends.

But, her patient nannies, who let her grow it long and kept it beautiful, inspire me to keep on taking care of Claire's long hair and working to style it so the bald patches aren't visible. 

So beautiful.

She loves on loose ponytail with lots of clips to hold all the stray hairs in place.

While I surely  hope she will learn to do her own hair someday soon, I am also thankful for the hours we spend doing hair.  I couldn't ask for a better bonding opportunity. 

Enjoying Today

We worry about what a child will become tomorrow,

yet we forget that he is someone today. 

~Stacia Tauscher

These last weeks  and months have been filled with all sorts of medical and psychological evaluations.  Lots of the information is not as positive as I could wish.  Many more questions have been raised, and we wait to be able to get in for additional testing that will help us find the answers.

It's easy for me to worry about tomorrow.  Health, and education, and behavior, and attachment all become areas of stress that threaten to make me forget to enjoy the wonderful moments of each day.

So, for December, I am challenging myself to put aside my fears about visual perception, or liver function, or bonding, and just enjoy as many moments with Claire as I possibly can.

So far, I'm surprising myself by finding that there are so many delightful moments that I barely have time to capture any to share.  But, here are a few that have been accumulating on my camera these last few days.

I'm very "big girl" and can put lights on the top!

Don't you think I'm making this tree beautiful?

Latkes with apple sauce--keep them coming.  They are "dee li shush."

Spin the dreidel and get chocolate money to eat.  I'm thinking this is a good tradition.

Claire couldn't have our mailbox be plain when so many in the neighborhood were decorated.  She is very proud of her decorated mailbox.

Gingerbread cookies--sort of like play doh.

Making special muffins for Daddy to take to the office for their special holiday breakfast.

Practicing counting to ten and getting the numbers in order.

Making bead candy canes is hard work.

Proud of my good job.

Green snickerdoodles at Ben's request.

Making chocolate crinkles is messy.

A great time at the Pinelake Christmas party for people with special needs.

A Day for Hatred

My mother heart aches for the mom's who won't see their precious children again.  I am so sorry.  So sad.

Yet there is a greater ache for those children who will also die this year without ever knowing the love of a mother. Every day little children die.  Alone.  Without enough nutritious food.  Without sufficient medical care.  Without ever knowing how special and wonderful they are. Without anyone to mourn their deaths.

Both situations are caused by sin.

This blog explains better than I possibly could why this is a day to hate the sin that destroys.  It is worth a moment to read.

/http://thegospelcoalition.org/blogs/tgc/2012/12/14/a-day-for-hatred/

Then it is worth the time to examine ourselves and determine how we can love more deeply, with less selfishness in a world awash with brokenness.

Lord Jesus, help us be your hands and feet to those who need your love.
Amen

Good News, Bad News, or No News at All

Good News

Our second visit to the Pulmonologist found that Claire's lungs are functioning well.  She has about 70% capacity because the "other" lung has grown to make up for the parts of the lung that were removed.  The trachea is not collapsing as they thought after the first visit.  In fact, our doctor says that the biggest reason Claire is out of breath all the time is because she is so out of shape.  Since no one was sure of her health, she wasn't encouraged to get much physical activity.  We have pushed her to be more active, but have been cautious until we were sure it wouldn't hurt her.  She is also very unwilling to exert herself.  Our doctor's prescription is to run, jump, ride bikes, climb, and play in order to gain strength.  So, if you see me dragging a reluctant child down the street or up the stairs, just know that I'm doing what is best for her, even if it makes her very unhappy.

Supposed to be jumping on the outdoor "pillow" at the campground.

Bad News

Our visit to the Gastroenterologist found that there is liver disease.  Her liver is not producing the enzymes it is supposed to be making.  There is also a hemangioma (abnormal collection of blood vessels) in her liver. More tests are required before we can talk details.  That means more scans and blood draws.  It is so hard to get blood.  Even when they find a vein, it dries up within a few seconds making it difficult to get enough for the required lab tests.  The bruises all over Claire's arms are not from me dragging her around to exercise—they are from the "pokes" at the doctor.

No News

Not knowing is the hardest part for me right now.  My imagination starts to think up possible scenarios as I research liver disease.  I want to get answers fast so we can start making the necessary changes to help my girl get well.  But, it takes weeks and months to get on the schedule for the next test, or to get an appointment with another specialist.  I feel so helpless sometimes—until I take my frustration to my Heavenly Father.  He is sovereign over all things.  His timing is always perfect.  He never wastes suffering.  When I remember that He is the one in charge, peace returns, and I can rest in the knowledge that God loves Claire more than I, and He is working for her good.  The doctors can do what they will, God has Claire in the palm of His hand.  I can trust Him with the good, the bad, and the unknown.

Watching a Miracle Unfold

(It has taken me a few days to edit this post and get it ready to go live.  Reading it makes me shake my head at how things change in so short a time.  I feel like I need to include a disclaimer:  Adoption is not a linear process.  It is more like riding a roller coaster.  The highs are high and the lows go really low.  One minute everything is wonderful and the next minute the bottom falls out.  The pattern with Claire seems to be to draw close, make strong steps forward, and then regress for a while.  It's okay.  Just don't assume that a positive post means we have arrived and don't need your prayers any more.  Moods are like the weather around here:  changing minute to minute.)

I feel like I've been walking around wearing my "totally dumbfounded" look the last couple of days.  I catch myself whispering, "Thank you, Jesus" about a hundred times a day.  I am just in awe of the changes I'm seeing, and my heart soars at the privilege God gave to me when He chose me to be Claire's mother.

I'm sure that most people won't really get why the things I'm going to share are a big deal.  Even Kelly, who listens carefully, still wears an expression that shows how glad he is that I'm happy, but he isn't really sure why these things are making me so glad.  Maybe you have to be with Claire 24/7 to understand.

 To me, it feels like I'm watching one of those time-lapsed photography clips of a flower poking up out of the ground and growing into something beautiful.  I'm just filled with wonder at each little change God brings about.

Frame by frame the changes are coming:

•       She slept through the night in her own bed, in her own room, with me in my own bed in my own room.  Just one night.  But, hey, now I know it can happen.

•    When we put up the Christmas tree, she wanted "four people" to make a picture in front of it to send to Dan "right now."  The tree wasn't even decorated.  She was happy and she wanted her family to share with her.

•       She went to the bathroom by herself.  Really.  She went in the other room alone.  She wiped, flushed and washed her hands all by herself.  (Yes, I was spying—and crying with joy.)  It has only happened once, but I know it is possible.

•        She played with toys!  Real play by herself, not just helping one of us build with blocks, or dress the doll.  She used Dan's old tool kit and spent hours putting in the screws and bolts and sawing the board.  She played with the cash register.  She found an old camera and walked around taking pictures of everything and talking about her shots.  She even went outside without me (YES!!!) to take some pictures of the flowers in front of the house.

•        She colored a paper ear of Indian corn the librarian gave her.  NOT the usual scribbly-scrawls that look like a baby snagged someone's crayon, but real coloring.  Ten minutes of real coloring.  Solid.  Beautiful.  Finished. 

•      She watched a toddler video I checked out from the library.  Not just glancing at it, but really watching, even singing along and doing the motions.  She didn't just look for 5 minutes or less and move on, or zone out and sit with her tongue hanging out and drooling like usual.  She watched for a whole 20 minutes til it was done!  And, (this is huge) she let me go get the clothes out of the dryer without following me because she was interested in her video.  Not only did she have some attention span, but she actually talked about things in the video with me when it was done!

•       While I was cleaning her room today, she got bored.  Instead of following around 6 inches from me, she walked into her room, found a coloring book on the shelf, found her crayons in the box, and went into the living room.  When I finished cleaning, she was busily coloring a picture.  She colored the whole thing.  A giraffe.  A bear.  A penguin.  Mostly in the lines.  Mostly realistic colors.  I don't know what happened to the girl who just picked a random crayon and scribbled big lines over the whole page and said she was done.  I'm glad she has grown.  I'm glad she is enjoying her coloring and is proud of her work.

•        She identified herself today.  "My name is Claire Robinson."  Then she proceeded to go down the list of our family members, noting that the "Robinson" part is the same.  We are the same as her.  She was so happy to identify with our family. 

•        She came up to me in the kitchen, put her arms around me and said, "I love you."  Oh my.  I've heard those words over and over.  She ended all our Skype calls with them.  She repeats them every time I tell her that I love her.  The words are just a routine.  Something someone told her to say to her parents.  But this time, it was different.  There was no prompt, no audience, no external reason to say those words.  She wasn't trying to get anything, or stop me from doing anything.  She hugged me, and allowed me to hug her back.  It was only for a moment, but it sure was a sweet moment.

A miracle moment.  The kind that will carry me through the rough patches.  The kind that makes quiet songs of praise well up in my heart.  The kind that makes me want to shout to the whole world that God is good and He is doing miracles right under our noses every day!

Thanksgiving

There is much to be thankful for.  The biggest on my list right now is that I finally have all the laundry from our trip to Kentucky finished.   When the cabin fills with smoke from the fire you keep blazing to fight off the 27 degree temperature, all the sleeping bags, quilts, and pillows need baths.  

Seriously, I am so thankful for time for a few days of focused family time.  Snuggling together in the big bed while daddy braves the cold to serve us breakfast,  sitting close around the fire, and exploring new things all helped Claire learn what it means to be in a family.

Going away from home, and finding out that we still take care of her and bring her back just like we said, helps build trust.   

It was so nice to spend a few days together.  Dan drove down from Cedarville and we met him at Mammoth Caves.  I didn't realize how much I miss him until I finally saw him again.  It was fun to introduce our two youngest kids to each other.  Claire finally got to see that Dan is real, and not just a computer animation.  :-)

Our little cabin was perfect in Claire's eyes.  We were always only a few feet away from her even if we moved! She was a little jealous when Dan got any attention, but she soon figured out that the best way to get people to notice her was to join in with the rest of us.

 

Getting in the Thanksgiving mood by making an Indian hat.  She saw a picture of Colton on Facebook wearing the one he made at New Day.  Of course, she had to have one too.

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Making Kelly's grandmother's  special green jello recipe for Thanksgiving dinner.  Cooking in the cabin was challenging, but we had fun.

Thanksgiving dinner on the porch where it was just a little windy.  Claire seemed to enjoy all of our traditional food offerings, but she was most anxious to get to the apple pie.  We made that before the trip and froze it.  A little while in the oven and it was almost as good as freshly baked!

The park at the campground gave us something to do while our men folk were exploring the cave on one of the long, hard tours.

The real Yogi was sleeping for the winter, so his statue had to be good enough.

If the boys go up the tree, Claire has to follow.  They will make a tomboy out of her yet.

Ben and Dan trying to teach Claire how to skip. 

A daddy snuggle pile!

It is dark.  It is very cold.  AND, you want me to eat this thing?  Are you crazy?

S'mores aren't really worth the effort.  Just give me the "chocoli" and leave the rest.

Going down and down to the bottom of the Frozen Niagara. Pretty rocks.

Poor boys have to bend over, but Claire follows easily.

A quick stop to buy a book to read at bedtime.