A Funny Thing Happened on the Way to a Cure

Not funny, funny, but funny strange..
I became a mom-nurse.
According to Jillian, there is room for improvement in my needle sticking.
And since I was never very good at math, I get confused on the angle of sticking.
But we have learned to laugh through our tears.
and
Carry on.

Do You Really Want to Know????

Timelines. Life Lines. Picc Lines.  Blind Spots.  Blind Landings.  What do these words have in common? These words tell stories in my life.

When I want to write, or should I say "must write", it is usually the same way a song writer might have just a couple notes stuck in his head and he doesn't know where they are going until, after hundreds of replays, they become free and create a song.  

I have a blog because I must write, and the sad part is I usually find lots of other things to do, plenty of other noise in my head and I tune into it because it helps me ignore what clamors to be said.

I avoid the writing because the writing makes it all too real and unavoidable.  As long as the words are just random and unrelated and bouncing around in my head, they do not become the song or the story I have no choice but to acknowledge. 

However, ignoring the words does not give me comfort.

 Then there comes a time when there is no peace to be found by keeping the words to myself.   The song creates itself, and the story, even if terrifying is a story worth telling.  Or, at the least, there is the hope that by releasing the story, some of it's energy will leave me.

It may come as no surprise (now) to know my first elective in college was titled, "Asian Women Studies".  I can't remember why I chose it, but it surely was not because I thought it related to my life in any way.  At that place and time, I didn't even know an Asian woman to call friend.  Yet I read all the books, took all the notes, and did a final project on Women in China, specifically the new One Child Policy.   I took it all very seriously for no other reason than a grade.

I never considered I was learning something destined to impact my life almost thirty years later.  I never considered it was so much more than a grade from a professor. My limited life experiences gave me such limited vision, I could not even imagine what was to come to me.

When my third daughter was born twelve weeks premature, I learned about living with huge uncertainty, I learned to trust the unknown, and I learned survival mode.  I was completely centered on keeping one small being alive and not in any way aware I was being prepared for other times where survival mode ability would be important for, well, survival.

A few years later I entered a business involving educational toys and software, for my own benefit, never seeing that I was learning how easily I could teach my own children and not seeing the coming change of homeschooling and how it shifted the focus of our family from seeking acceptance from the outside world to creating our own social system within our home.

Many years later, a Letter of Intent, a beginning piece of adopting through the China Waiting Child program, asked me why I felt qualified to parent a child with special or unknown needs, and I realized I had been preparing for this all along.  It was easy to believe I could do it because I had been on this path for so long.   

Everything made sense.

And then it didn't.

Suddenly my life felt like a train speeding down a track, knowing the bridge was out, but unable to slow down.  I'm still on the train, but we are stuck in slow motion free fall..

I have a child with a chronic disease.

I have a child with constant pain and anxiety, for whom all pharmaceutical mixtures have failed. 

I have a child who struggles to eat a bite of food, who can no longer read, and suffers from tremors, and a long list of other symptoms no 17yo wants to deal with.

I have a child who knows that no matter how bad or scary her symptoms are, going to the hospital will not help her.   

I have a child with Chonic Late Stage Neurological Lyme Disease.  

The politics of this disease are as scary as the symptoms.  The politics are the reason we have to travel seven hours for her to receive appropriate care.  The symptoms are the reason we live in a heightened state of fight or flight.

In rare moments of calm, I understand all the ways I was also prepared for this experience.  When Cami and Delilah came home to us from China, I learned about trauma, sensory issues, the effects of heightened or lowered cortisol levels.   Everything I learned through adoption has helped me understand at least a little the daily hell Jillian lives through.  

And even while I understand I have been preparing for this my whole life..... I do not feel ready.  I do not feel worthy.  I do feel thankful for the little rays of sunshine God placed in our family to help ease the suffering simply by being six year olds..

But.....

We are barely getting through the days here.  And it is taking every ounce of energy in every cell of my being to hold us all together.... even though I know ultimately I cannot do even that.  

I am trying to breathe.  Trying to ease the tight ache in my chest.

Trying to find the niche I had carved out in survival mode but I seem to have lost my way.

I'm searching for peace.

I am trying to crawl out from the blanket of depression, anxiety and fear.  I am searching for the light.

And I do not want to consider what I might be preparing for now................ 

God of the Empty Spaces

I've heard many definitions of what God is, what He does, and I've known Him to be both very close to me and other times seemingly unreachable.


Over the past few months, I've come to understand that to describe the God of my imagination is to put God in a box, to diminish Him 


 I have also started to understand that when I think God is not near, it's merely my point of view, limiting my ability to know God in that moment.


My blog has been silent.   


I have felt like I had little to say.   


I didn't want to admit life was too hard to describe, or that there was no good lighting for photographing my days.  I did not want to reach out from the darkness.   It became common to feel locked alone and silent.


Did God foget about me?   Not at all.    I just forgot to recognize Him.


The  other night, reading in my bed, I saw something written by C.S. Lewis, and I smiled because  He pointed out exactly where God is.


He wrote about those times when we don't  think we can walk another step, but we do.....when.we walk into another room and smile another smile, and give something from our heart to someone who needs it, that is God.


When we are at the breaking point and ready to give up............. but we don't, we keep going just a little longer, a little further, that is God.  


When we hear alot of bad news, but still we hang onto the slip of a hope and we carry it around with us, like a child with an old beloved blanket, that is God.


God is in the Empty Spaces.


In the Impossibilities.
In the getting out of bed when we thought we couldn't.
In the finding smiling patience when we thought we wouldn't.


God is in those place, all those Empty Spaces,
where WE never planned to be


when we keep on moving, speaking, believing in a better day
that part
is 
God.

Obstacle as Journey

Posting again after such a long break, makes me feel I should offer some explanation.  I have none.  Only life.   The day to day business that doesn't seem noteworthy when seeing one day at a time, but becomes something bigger when seen as history.

So I guess we have been busy making history, making memories, discoveries, and changes.  

L (23) is still in Australia.  After working as nannies, house painters, and boot models, she and D saved enough money to buy a very cool van (imagine a small house with wheels) and head into the Australian Outback.   Even though she warned me she would be without internet contact most of the time, her one post about coming upon a 17 foot crocodile and being in the most remote part of the world she had ever seen left me anxious to hear she is back in civilization.  I miss her.  I want to sit on the couch and talk about recipes and websites and art.  She will be back one day and I will be here.

K(21) is in Recovery.  Glorious, wondrous, miraculous, one-step-forward-one-step-back, recovery.   It is a rocky and beautiful road.  There is such joy in receiving him back into the family, watching relationships grow again, reaching for a hug and finding he is really there.  It's living a second chance, everyday.  He is working now with his dad, and those days of male bonding are helping make up for lost days, and months and years.  Trust still walks on a tightrope and none of us are exactly sure how to handle some situations.   But we carry on.  And I keep believing if he can stay clean, eventually we can figure all the other puzzles out together. 

J(16) has finally found medical help.  She has suffered for so long with unrelenting pain, anemia, migraines, and many other seemingly unconnected symptoms.  We were sent to one specialist after another and no one could help her, even though they were all eager to run all their tests on her and give her their medicine.  We spent a year in disbelief that no doctor could do anything to help her pain.   Finally, after what we think has been possibly nine years of fighting infection, she was diagnosed with Lyme Disease.   She has begun treatment which includes herbal supplements, vitamins, antibiotics, and special dietary changes.   We are amazed at the change in her in just this short time.   I don't want to celebrate too early, but I think she is responding very well and her body has begun to heal.  

Cami (5) started kindergarten with me in May.   She is learning so fast.  She began reading right away, as if she just needed the key to unlock the mystery.  She also loves math.  She is willing to do any work I ask of her, sometimes willing to work longer than my focus can last.  She loves our Monday morning trips to the library, now with her own library card and bag of books.  She goes to gymnastics two days a week and never forgets to say her prayers.

Delilah (5) had her birthday in July.   On that day she enjoyed her first trip to Build a Bear.  Afterward we had cake at Grandmom's and she opened her presents.  Grandmom gave her an amazing "Queen of Atlantis" dress up costume.  I don't think she took it off for two full days!  Delilah is an incredible swimmer and she might be part mermaid.  She tells me it's true.  She also goes to gymnastics and I am thinking she might enjoy a dance class in the Fall.

Mark is busy with plenty of work this summer.   With long strings of days where the temperature reaches above 95 degrees, it's a touch time to work outside.   But we don't complain.  Having work is always good.   

I am trying to stay cool mostly, in between taking the girls where they need to go, stocking groceries, learning to cook gluten-free and keeping our house in some mild form of disarray.  I'm enjoying my Artist Trading Card swaps and other paper and altered art.   On these hot afternoons I like to set the girls up at the kitchen table with paints and paper, markers and glue, and we make art for hours.  

It's a special season in my life and I want to soak it all in.   There is a quote in Zen philosophy that says, "The Obstacle is the Journey".  I try to remember that.   Of course we have challenges, we have struggles, and stress that sometimes makes the day feel like mine field.  Six of us living here now means there are many relationships and at any given moment someone may be on top of the world, and someone else nursing a bruised ego, and in another room someone telling me they are hungry.   I try not to enter into the "journeys" that do not belong to me.   I try to remember that every obstacle along my path is a chance to grow and learn.  I try to hear the voice of God.  I may not always be sure I hear Him clearly, but His fingerprints are everywhere.

And with this short update, you have my word, I will begin to write again.

Trees Are For Climbing

Tree climbing is a rite of passage for little girls I think. I remember being proud I could climb any tree as high as any boy in my neighborhood.


I remember sitting in a tree feeling so hidden by the limbs and leaves, enjoying watching the world go by from my private place. I really thought no one could see me, and often I was right about that.

I remember two large Mimosa trees in my grandparents yard. I think when God created trees, he made the Mimosa especially for children to climb! The large, sturdy trunks and limbs needed just a sprinkle of imagination to become ships or forts or castles. My grandfather told me a few times the Mimosa trees were not healthy and should be cut down. I think he left them standing longer than he wanted just because we played in them so much. And I'm so glad he did!


My childhood is full of great memories involving trees, so when I saw my girls climbing a tree for the first time in our backyard, I knew I wanted to capture the moment. And I can see in their eyes they have discovered the magic too!


Now in this quiet moment, reflecting on their fun, I'm called to remember the children who do not have trees to climb and the ones whose bodies do not cooperate with their dreams and so they can only imagine climbing.


I am thankful for the joy my girls shared with me outdoors today and I am prayful for the children living a different story. May God have mercy. And may I never forget them and never stop trying to relieve suffering, wherever it is found.

What are Sisters Made Of?

Everytime someone asks me if Cami and Delilah are sisters, I cringe a little inside. I cringe because I know what they are really asking and I know what they will say when I answer, "Yes, these two are sisters".

They will then want to know if they are REALLY sisters.

Deep Sigh. Sometimes I just say yes and move on. I don't feel I owe the world a genetic background check just because they are curious. Sometimes the trail of questions jumps the track and people want to know if my girls are twins. They aren't the same age or the same size, but I find people generally don't look much further than the fact that they are Chinese. That is not enough to make them twins.

Most of the time I try to keep these encounters short and as sweet as possible, guarding first the feelings and comfort of my children, and then the questioning adults. There is no reason my girls unknown family tree needs to be brought out and examined just because someone who thinks all Chinese people look alike has some time to kill.

Recently I started thinking about the sisterhood of my two youngest girls. What people usually don't know is that not only are they sisters to each other, but there are actually four sisters in our family, along with one brother. All these relationships are unique and usually they go unnoticed and unquestioned.

The relationship drawing the most interest seems to be the youngest duo dancing a tango to their own music, making it up as they go along. Watching their dance has been one more unexpected fringe benefit to adoption. It's been one more chance witness a miracle unfolding in front of me! I'm thankful to be their mom with a front row seat.

When siblings are born into a family, they come as small helpless babies that might make noise, but they don't move around alot. For Cami, gaining Delilah as a sister was a sudden jolt into the reality of having a noisy and fast moving person taking up lots of her space, touching all her things, and claiming her most treasured possessions.......her mom and dad! Cami was 3 and Delilah was 2 years old on that hot, steamy afternoon in the Galactic Peace hotel in Hohhot, Inner Mongolia when Delilah limped into our life like a colorful, somewhat frightening, sometimes magical character in a fairytale. (The limp was a surprise. She had been in a bike accident just days before we arrived. Her foot was caught in the spokes and it was by the Grace of God that she suffered no worse harm) If you've been in China or seen the traffic, you know the lives of the bike riders are constantly at risk!

Below is a photo Cami, Delilah, and mom and dad, taken just a few minutes after we met our newest daughter.

And a bit later, this classic photo shows that Cami might be just a little stressed. The poor child she is playing with is our guide's precious little girl. How do you like this for an adoption poster-child? LOL! Can't you just feel the love!

Anyway, my point of writing is to describe the sister relationship and how it evolved. Cami had been well prepared for her little sister coming home. At least I thought she had been prepared. Look back, it's striking to remember she was only three years old and had heard her first word in English only about a year earlier. I will never know what she really expected.

Yet somehow both girls had an instinct for becoming sisters.

Becoming sisters is wearing matching pajamas and brushing your teeth while making faces in the mirror.

Becoming sisters is sitting side by side on a bus, unable to speak the same language, holding hands instead.

Becoming sisters is sharing mom's lap, sharing a bowl of noodles and a bottle of water.

Becoming sisters is sharing sleep and bubble baths and a stroller.

To be fair, it was not all rainbows and unicorns during those first weeks. Without language, toddler girls pull out rather primitive means of settling their differences.

We went to a family cookout soon after coming home from China and one of the little cousins later told her mom she could tell which girl was which. She said, "Delilah has the black eye and Cami has the scratches on her throat". Please see Exhibit A posted below!

But still, they held hands. They identified as sisters, as one of a pair, of part of something special. Before our second adoption, I spoke with an attachment therapist and she gave me a couple incredibly helpful bits of advice:

She said, "Treat the girls as one unit. Bathe them together, feed them together....if you kiss one, immediately kiss the other". The therapist indicated that both girls would be watching (very closely) to make sure they were equally loved.

And then she told me, "Never leave them alone with each other".

These words were the most practical and helpful advice I received while planning our adoption.

The weeks rolled into months and our life shifted and changed and we were molded into something entirely new. We were also beaten and pounded, by work, by exhaustion, and we stayed in survival mode for a very long time. We were, and we remain, a work in progress.

We were and we are also becoming........something new..... 

Cami was not always pleased with her little sister. Cami keeps her world in order. Delilah was like a hurricane.

One amazing quality Delilah brought to life was imagination. We didn't realize how little pretending Cami had been doing until Delilah burst on the scene..... part princess, part power ranger, and always in costume!

True, authentic, and healing play began even before the scratches and bruises had healed. And everyday now they play from morning to night. Playing is a good way to become sisters.

Since we were treating them as a unit, for the first six months or so, the girls were not separated. I remember the first time I took only one of them out. Delilah had an eye appointment and I let Cami stay home with her big sister. I had not given much thought to how significant this separation was for them. It was touching to see them come back together after that hour apart and hug and kiss as if they had not seen each other in years. And they still react the same way, even today, after every separation.

Not only are they sisters, but they realize they were not always sisters, and I like to think they have some awareness of the huge and beautiful forces that moved mountains and more in order to bring them together.

As I watch them playing now, rolling out play dough cookies for the Queen's birthday, I am in awe of their communion, the way they fit together, perfect puzzle pieces, in spite of, or because of all the ways they are different.

I don't claim to know how it all happened, but there is something I know to be true.

These girls became sisters. And it was more than a coincident, the way we have all ended up altogether.

A Million Miles in a Thousand Years

Every once in a while I stumble upon a book so vivid and alive I am forced to read pages more than once, crawl out of bed in search of a pencil for underlining, and tell everyone who will listen about the things I have learned from reading.

"A Million Miles in a Thousand Years" by Donald Miller is just that sort of book. 

The subtitle of the book is, "What I Learned While Editing My Life".  Donald Miller shares with readers the experience of editing his life for the sake of a documentary movie.


And he shares something even bigger.  The truth is that as long as we are alive we can edit our life, we can tell a different story.  Let that soak in.  It is exhilarating to imagine how we might begin today to alter history by taking the first step towards changing our future, and even more importantly, the future of our world and the way life turns out for others! How much change? How many others? Each one of us will find our own answers if we are willing to awaken and fully participate in the precious gift of our life. 


Miller writes, "I thought about heaven, about how if we were shooting a movie about heaven, at the airport, we would want to shoot it there, and how in the movie, people would be arriving from earth and from other planets, and when the angels picked us up, they'd put us in their cars and drive a million miles for a thousand years...and it would be miserable....until we got to where we were supposed to stay......"


He continues, "I wonder if that's what we'll do with God when we are through with all this, if he'll show us around heaven, all the light coming in through windows a thousand miles away, all the fields sweeping down to a couple of chairs under a tree, in a field outside the city......."


"And we'll sit and tell him our stories, and He'll smile and tell us what they mean........I just hope I have something interesting to say".


If you enjoy thinking about life and considering the impact your choices and actions have on the lives of others, this book will feed your imagination.  If you have a desire to create a new story with your life, one that you would be proud to tell God or anyone, then this book will be food for your soul!

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