ARND.

There's a game I play sometimes.

I fix a drink (usually gin and topo chico with cucumber slices). I swirl around the ice and listen to the clink clink clink. I take a sip and feel the bubbles on my tongue and the bite of gin on my gums.

I finish that drink and I fix myself another one. More ice this time, a little less cucumber.

At this point I am usually feeling a little happy, a little buzzy, a little extra lovely.

I finish my second drink. More slowly this time.
At this point I am feeling a little tired, a little woozy, a little impaired.

I rarely make it past the second drink before I give up the game.

I don't feel good if I drink more than that. I get the spins, my mouth gets dry. I fall asleep easily but wake up an hour later with my heart pounding. I'm not good at drinking a large quantity of alcohol,
so I doubt I'll ever win the game.

The point of the game is to try to drink a specific number of drinks in one sitting. To try to equal the number written on the grainy fax we received in mid-December 2010. To swallow the booze and sit with the effects. To feel what it is like to flood my bloodstream with the alcohol.

To take it a step further and imagine what it would feel like if I was pregnant.

If I was pregnant with YH.

If I was pregnant with YH and I drank the number of drinks his firstmother reported drinking--every night for the first seven months of her pregnancy.

I can't do it.

****                  ****

The thing about prenatal exposure to alcohol is that it is horrifying. The amount of damage that can be done to every major system of a developing fetus is staggering. The injuries can be profound and life-altering--for everyone who loves the affected child.

There is no way to predict how ANY amount of alcohol will impact a child in utero. It's like a tornado, or a freak hailstorm. A wildfire that completely razes some homes to the ground while passing over others.

 Some children may have the "classic" facial features of Fetal Alcohol Syndrome: thin upper lip, smooth philtrum, low nasal bridge, and small palpebreal fissures. Some may also have secondary physical characteristics like "railroad track" ears, "clown" eyebrows, epicanthal folds, bent pinkie fingers, short stature, and microcephaly.

Some children may have none of the facial features or physical characteristics of the disorder. These children carry their congenital brain damage on the inside. They pass for "normal" because they don't look different, but may struggle with social immaturity, impulsivity, learning difficulties, impaired memory functions, global developmental delays, and mental illness. They may become easy marks for people looking to take advantage of them. They may battle addiction and incarceration.

The other thing about prenatal exposure to alcohol is that the damage is irreversible. Once a child's brain has been hurt by the toxins that injury can never be reversed. It can be accommodated for, and supported with interventions and therapies--but it can never be undone.

****             ****

Talking about children affected by prenatal alcohol exposure makes people uncomfortable. Some medical professionals are hesitant to diagnose the disorder because it assumes injury by another party, ie the woman who carried the child. Children who are affected by exposure and who remain undiagnosed are at greater risk than those who are diagnosed, and diagnosed early.

Children suffer because of the judgement and shame associated with the damage caused by prenatal alcohol exposure. Kids with prenatal exposure are often labeled "problem" children. They are talked about in whispers, they are used as central figures in cautionary tales about adoption/foster care. They are assumed to come from bleak backgrounds. They are punished by society for the presumed sins of their mothers.

Earlier this week YH had his last big doctor's appointment, with the geneticist. The aim of this appointment was to get him diagnosed on the Fetal Alcohol Syndrome Disorder continuum. While we wish our beautiful son had never been exposed to alcohol in utero, we are thankful that his firstmother disclosed the exposure when she relinquished him. It is much easier to get a concrete diagnosis with confirmed documentation.

The geneticist did a thorough evaluation of YH's physical features. She talked to me at length about his developmental and birth history. She took measurements and plotted them against the averages for children his age. She went through the diagnostic criteria with me step by step.

Our son does not have Fetal Alcohol Syndrome (FAS). This is usually the most profound level of impairment, often presenting with very low IQs and severe behavioral and emotional challenges. Failure to thrive and feeding issues are also often present in this group. Diagnosis requires the presence of the "classic" FAS facial anomalies.

Our son does not have P-FAS (partial-FAS, sometimes called FASD or FAE). This category includes some but not all of the classic facial features, plus a combination of other developmental and physical growth challenges.

Our son does not qualify for the next category down the diagnostic criteria: ARBD (alcohol related birth defects). This group presents with defects of the skeletal systems and other major organ systems.

The letters that YH walked out of the office with are: ARND. Alcohol Related Neurodevelopmental Disorder. This means that his outward appearance and physical self are not visibly damaged by exposure to alcohol. He is at risk for developmental delays, learning differences and behavioral challenges due to the damage caused to his brain by the exposure. We do not yet know the extent of the damage (his development is currently on-target); we sit and wait for new symptoms and challenges to present themselves.

Because of his "normal" appearance he will pass as neurotypical.
And that terrifies me, for many reasons.
But I am THRILLED to have those letters recorded in his file now, before he turns three.

They will serve as our magic pass into future services and evaluations. They will automatically qualify him for certain interventions.

These letters will not define him, but they will be an important piece of lifting him up. A key block in the very strong foundation for success that we are building for him.

****          ****

It would be easy for me to pass judgement on YH's firstmother for the "choices" she made while pregnant. It is absolutely heartbreaking to think of the challenges YH's future might hold--challenges caused specifically by his ARND. I am angry and sad at his diagnosis, but not at his firstmother.

As I said in an earlier post, I recognize that the information we received in YH's referral is at best an incomplete snapshot of a (very sad) moment in time in his firstmother's life. I cannot pretend to know anything about her daily life or her own challenges and struggles. It is not fair to imagine that her life today, in this moment, is anything like the life described in his referral.

So instead of thinking of her in anger I choose to hold her in peace.

****                ****

At bedtime last night YH wanted to drag out our routine. In addition to reading five board books and singing two songs he wanted me to lie down next to him. He insisted we sing "Happy Birthday" to each member of the family--Miss A, Sweet Bubs, Papa, Mama, the dogs, the cat. He clapped at the end of each round and blew out an imaginary candle.

He wanted to put his nose up against my nose. To take his index finger and trace the outline of my eyebrows, then his eyebrows. My nose, then his nose. My ear, then his ear.

At the end of the day he is the same sweet and silly boy that he was before his diagnosis. He is smart (so smart!) and curious and loving. He is all of the letters in the alphabet and all of the colors in the rainbow.

He's YH.
And he's perfect.

Dr. Feelgood

YH squeezing a teddy to death at our first ever meeting

The seemingly endless march of specialist appointments for YH is drawing to close. We have our genetics appointment later in the month (after which I hope to be able to be a bit more explicit about YH's "risk factors" and diagnoses) and after that the pages of the special "YH Medical Calendar" that I bought unfurl in beautiful blank space until November.

This is a relief for me--and not just because my sweet boy deserves a break. (And believe me, he *deserves* a break). It is a relief for me because of all the parts of parenting that are fraught with potential landmines from my past, interacting with the medical establishment is the one most likely to explode in my face and render me useless.

I have a deep-seated fear of doctors. This is not "white coat hypertension"; this is active purposeful avoidance of medical professionals.

(And hey--some of my favorite people in the whole world are doctors or nurses.)

I can explain to you in great detail the hows and whys of my fears. I am self-aware enough to know from whence this all springs, and I can acknowledge that it is irrational and potentially self-harming to avoid medical care to the degree that I do. I can also spend hours justifying my choices to you.  I can ignore and explain away potential health concerns with the best of them.

I need to tread lightly on this subject, because I do not want to sound like I am laying blame on anyone else for my irrational fears. I do know that when I was a child someone very important to me was chronically ill, and bearing witness to this made me feel helpless. I felt that I needed to be perfect in order to avoid causing this person more pain. If anything was wrong with me I needed to hide it, cover it up, take care of it on my own.

I got really good at hiding things. Really, really good.
And the more successful I was at hiding things the more resentful I became that NO ONE noticed. Nobody noticed for YEARS that I was ill or hurting. 

And then I became a parent and you just cannot live in hiding when you are a parent. My kids dragged all my hidden secret crumbly bits out into the light.

I work HARD to not let this impact my parenting. I *do* strive to take care of myself and to live life in a full and healthy manner for my children. And myself. And if my kids are sick or injured I will tear down walls to get them help from professionals.

But is so hard to confront your fears.
So hard.

****                   ****

 Helping YH get the care he needs has been a type of immersion therapy for me. Before each appointment I grit my teeth and put on my mental armor. I can do this.

Some appointments have been total disasters (pediatric opthamologist) and some have been pretty good (craniofacial team).

Yesterday's appointment went beyond "pretty good", into the realm of AWESOME. I have a new favorite doctor and he's a pediatric urologist.

This appointment was the one least likely to yield any surprises. We found out in January that YH needed surgical repair for a "minor" issue. We knew the ideal window of time to do the surgery was between 6-12 months but obviously that wasn't going to happen for our boy.

I did my due diligence with Dr. Google, researched surgical procedures, trolled adoption forums for related threads, engaged in some self-flagellation with the self-righteous posters over at mother*ng.com.

I was prepared but not enthused for the appointment.

YH and I sat in the waiting room for thirty minutes while I filled out paperwork. I'm getting good at writing "unknown" on all the medical history questions. Unknown. Unknown. Unknown.

YH played *with* another little boy there, which was something new and pleasantly surprising. They pretended to catch and eat little fish suspended in a window of gel on an exersaucer in the corner. Adorable.

The nurse called YH's name (correct pronunciation on the first try! No avoiding it by just calling out his last name!). We walked back to the exam room together and YH started to cry. He is SO tired of being poked and prodded. The nurse was very sweet and went and gathered up every car-related toy she could find and brought it in to us, building a precarious pile on the exam table.

The doctor came in a few minutes later. He got down to YH's eye level and asked if he could play cars with him. They raced and zoomed and made "vroom vroom" noises together for ten minutes before the doctor even began to ask about why we were there.

YH shrieked like a banshee during the exam. The doctor looked at what he needed to look at and then said "I'm sorry I upset you buddy."

He talked me through the repair process, drew diagrams, listened to my questions and seemed to appreciate my google expertise. He told me things look very favorable for YH; his case is moderate and should be fully addressed in one out-patient surgical procedure.

Then he asked me how soon I felt we could schedule surgery without disrupting YH's transition/attachment process.

For real.

This doctor, this wonderful man, was aware enough of the needs of children like YH to know that a surgery could hurt his tiny heart. That the trauma of the experience might damage the fragile bonds of attachment we've worked so hard to nurture.

People, this is a big deal. Not every medical professional, not every medical specialist, is well-versed in  the special needs of children who joined their families through adoption. As parents we need to always be on our guard, ready to educate and advocate for recognition of these special needs. It was a relief to meet a doctor who "got it"--who didn't need my canned speech.

We agreed that later this year would be ideal, and he said "Let's reserve a spot now and we'll check-in as the date gets closer."

And YH and I *both* left the appointment feeling happy.
And it was a good thing.

Glasses!

At the end of our first meeting with YH our social worker expressed some concerns. She said she had been worried about him, about his tendency to fly from one activity to the next. He would pick up a toy and then drop it in favor of another one. He wasn't interested in books and hardly watched videos or television. He liked commercials, but mostly for the music.

She said she had hoped he would naturally grow out of his "busy-ness" but that she was very, very worried about him. She asked what we thought when we observed him--was his behavior what we expected?

To a large degree his behavior was exactly what we expected. YH's risk factors often result in a comorbid diagnosis of ADHD/ADD--we knew ahead of time this was a potential challenge for our son.

And certainly, the first few weeks with him were in keeping with what we had observed at that first meeting. His busy-ness knew no bounds. Each day every toy in the house would be taken out and dropped in pursuit of something new. By 9am our floors were carpeted with toys. YH was always good about helping to clean-up, but the sheer volume of playthings strewn about was overwhelming (I know: first-world problem).

His interest in books slowly increased. We read him the same five board books at bedtime and naptime and he grew to anticipate the rhythms of the words. We have books of trains and cars (his current obsessions) that he would flip through, occasionally glancing at the pages. The books he seemed to pay the most attention to were a series of small board books focusing on different vocabularies (food, around the house, toys, etc). Each page held a single image--BALL. APPLE. PANTS.

He would ask to watch Korean cartoons on the laptop but would wander off after one or two minutes of viewing.

Inattentive. Easily distracted. Hard to keep engaged.

And then.

Then his glasses came in.

And his world suddenly came into focus.

And *everything* changed.

It almost happened overnight. Once he started actually wearing the glasses (instead of taking them off every few minutes) his attention span quadrupled. He started really seeing the world around him, and paying attention to the things that interested him. I can only imagine that prior to glasses his visual world was a blur of indistinct colors and shapes--and now with glasses, he is able to completely rebuild his mental maps.

Now he really watches his Korean cartoons--more than one 10 minute episode at a time. He really studies his favorite books--pointing out things he sees on the pages. Look, a piano! Look, a dog! Look, Little Pookie is a pig!

He has started to put shape puzzles together--instead of just playing with individual pieces. Yesterday morning we did an art project together--something I never would have attempted in life pre-glasses. But he loved it! He concentrated on putting the stamps in the ink and then pressing them onto the paper, in just the patttern he wanted.

When you are parenting a child with irreversible brain damage the ability to positively change his environment--to augment his abilities--is so, so sweet. I know that the glasses were a relatively easy fix for a tiny piece of his larger challenges but oh! What a beautiful piece they are. 

Front Yard.

Our front yard is not beautiful. The grass is patchy and plastic toys are scattered as far as the eye can see. There is a low fence surrounding the yard, built from wood and hog wire. The fence is in keeping with the casual style of our neighborhood--kind of wonky, kind of kitschy, and very friendly.

We spend a lot of time out here. More so now that YH has joined our family. We're out there every day, weather permitting. The fenced in yard has proved a perfect buffer zone for our youngest son. He can play safely within its boundaries, nestled in our "family space". But the view out onto the street, and of passersby, allows him to exhibit his friendly and sociable nature.

Whenever a neighbor, or a hipster on his way to the coffee shop, or a lady walking her dog stroll past YH rushes the fence. He stands on his tippy-toes, waving his little hand furiously and calls out "Hey-la-la!"

If it's a neighbor he recognizes YH will call out again and again until the friend comes over to say hi up close.  If it's a family walking with little kids we usually invite them in to play--all these plastic toys shouldn't go to waste.

YH is comfortable in our yard. He is comfortable having visitors drop by to hang out in the front yard.

He is not comfortable having visitors in the house.

We learned this last week, after the Early Childhood Intervention team came out to evaluate YH for services.

Three very nice, professional women came to our home to test YH's abilities in a range of areas. They were kind and soft-spoken. They liked YH very much, and he seemed to like them.

What he didn't like was having these strangers in our home--which up until then had been almost entirely a "family space".  The evaluation necessitated that the team sit in close proximity to YH. Much of the test was eye contact intensive.

About 30 minutes in I could see that YH was becoming uncomfortable.
He did not like having these people in our home. It was confusing, and unexpected.
He became clingy. He was fussy. He paced restlessly. He left the room and didn't want to come back.

After the team left--amid heaps of praise for our sweet boy--YH didn't want to eat lunch. He fussed when we tried to put him down for his nap and woke up agitated. He sat rigid in my lap and grasped at my shirt with clenched fists. He needed to be near me at all times.

This behavior continued for the next few days, lessening over time--but still noticeable.

I felt like a fool for not anticipating this.

We have been working so hard to meet YH's needs as he transitions to our family. To nourish his little soul in the hopes that a healthy attachment might grow and unite us in family love. To have his health issues diagnosed and treated as soon as possible so that he doesn't suffer needlessly. To get him the therapies and interventions he will need to thrive.

In a perfect world all these goals would fit seamlessly together, united in the goal of lifting YH up higher and higher. In reality the pursuit of several of these goals rub and chafe against one another, causing irritation where they meet. In this case the race to get YH early intervention services before he ages out (in 6 months) rubbed up against our efforts to keep his world small, to protect his "family space" and build attachment.

So we took a few steps back. We met YH where he was at with love and grace, and tried to re-establish the security that he felt was lost.

I realized that I had overlooked something important. I should have told him ahead of time that the eval team was coming, and how long they would be here. Even though he is 2.5, and in many ways living between languages, I need to take the time to explain to him beforehand when something out of the ordinary is going to happen.

I need to take the time to hold him close (if he wants to be close) and look him in the eye (for as long as is comfortable for him) and say "Hey little man, tomorrow we are going to the doctor's office. It will be a quick check-up..." and so on. I need to do this early and often--repeat the sequence of events and try to set expectations. He may not understand the words but the rhythms and the tone of my voice can convey what he needs to know.

I will do this. I have to do this.

Risk and Reward

On Friday morning we had our pediatric opthamology appointment--the one which would determine if we would really and truly be able to set cranial surgery aside. 

Sean went with us. We sat in the busy waiting room for close to an hour before they called us back. There was a small corner of the room which had been furnished with kid sized tables and chairs, a box of books and some puzzles. YH zoomed his toy car all around the space, past the other kids. 

At one table sat a little girl about his age with the tiniest feet I have ever seen in my life. She kicked her wee glittery jelly sandals back and forth as she stared at the pages of a book. She wore a back brace on the outside of her clothes, her eyes appeared crossed and she had several silver teeth. Her hair was in two long pigtails and she turned each page with great determination.

Sean was hovering nearby keeping an eye on YH. The little girl smiled up at him and asked for another book. Sean showed her each book in the basket, and she shook her head "no" at the ones that displeased her and "yes" at the ones that met her approval. 

Of course Sean ended up reading one to her. Of course "one" book turned into four turned into five turned into...a lot.

Geez--the sight of my giant husband crouched next to a tiny chair, with a tinier girl in it patiently reading her stories....just. Just, wow.

Eventually YH was called back to the exam room. I had to cradle him while Sean held his head still so that the nurse could put drops in his eyes to make his pupils dilate. The drops sting so first they have to put in numbing drops. YH screamed and cried--it was awful.

When his pupils were finally dilated the ophthalmologist came in to try and see inside his eyes. She shined a light into each eye (when he wasn't squeezing them shut or burying his head into Sean's shoulder to avoid her) and quickly pronounced him nearsighted. Very, very nearsighted--with a slight astigmatism.

I asked about his intracranial pressure--did it appear elevated? 

No, she said--his optic nerve is fine, not swollen at all. 

So, no surgery?

No surgery.

Tiny glasses?

Yes, tiny glasses.

Oh, thank you universe! THANK YOU!

****                       ****    

The tiny glasses are ordered. They should be here in about 10 days.

We have one more specialist appointment on the books, and another to be scheduled.

The latter will definitely result in surgery--but it is not life-threatening, and it isn't time sensitive. At the moment it doesn't effect his daily life so we can wait a little longer to pursue the correction.

The former will likely result in a similarly permanent change to our sweet boy--the assigning of a string of letters to follow his name. 

Our next specialist appointment is with the geneticist--the first stop in what may prove to be a long road to get our son the services he needs to be the best he can be. You see, our son is likely on the spectrum of a "disorder" which is comprised of myriad different physical, emotional and developmental challenges. Each child afflicted by this disorder has a different constellation of symptoms/behaviors/physical defects--and differing levels of severity for each.

This is a disorder which almost always results in congenital brain trauma. It is a disorder which can leave kids looking "normal" on the outside, covering up their damaged brains, so that they are more vulnerable to people taking advantage of them, less likely to be able to control impulses, less likely to keep pace with their peers, more likely to be labeled "troubled"....the risks of "passing" include secondary mental illness, incarceration, addiction.

It is maddening to parent a child with this disorder because it is so hard to find a medical specialist who can tie together all the pieces--and so the onus is on the parents to gather information, stay informed, and advocate advocate advocate.

This is a road many parents of special needs kids have walked. This journey of needing to be one step ahead of the "experts". 

I have mentioned YH's risk factors--his likelihood of having this disorder--loudly and in clear speaking voice to each specialist we have met with so far. And each one has pointed out that he lacks certain distinguishing physical features, features which used to be key in diagnosing the disorder.

And I push. And I say, yes but he does have "x" which is a secondary physical characteristic. And I say yes, but in my reading I saw several articles discussing how this type of "risk factor" can effect his vision--is this the case for my child? And yes, he is on-target *now* but most kids with this disorder start to fall behind around 3 years old UNLESS they receive intervention/diagnosis...

And I can see the experts silently cursing my access to google. I know they think I'm being overly cautious, overly fixated on something which isn't yet an issue. 

Too bad.

This is my job. It is my duty as his mother to fight for this kid--and I am going to make sure that he gets the diagnoses he needs, and the intervention he needs. 

It is easy to dismiss the presence/absence of one symptom; it is harder to map the galaxy of factors that combine to inhibit my child.

I'm willing to risk the eye rolls and the dismissive responses of the doctors.

The improved health of my son--my son who has the deck stacked SO very much against him--is the only reward I need.

Belly stickers for all.

This morning we had the BIG specialist appointment.
The appointment that was likely to result in major reconstructive surgery for YH.
Surgery that would be scheduled as soon as possible.


I was nervous. So so nervous.
I went out last night with some friends and tried to steady myself with the comforting bite of Hendrick's and tonic.
Didn't work.

I got home and tried to sleep.
Didn't work.

I tossed and turned and battled the "what ifs" until dawn.


YH woke up a little before 7am. I heard him start to moan and I jumped out of bed. I opened the doors to his "room" (an attached flex space in our bedroom) and scooped him off his mattress.
He was bleary eyed and cuddly--my favorite.
We got back into the big bed and he curled in the space between my knees and my chin. I held him in my arms as he began to fully wake up.


He waved his hands and babbled to himself. He honked my nose and kissed my cheeks.
I buried my nose in his hair and apologized for what the morning would bring.

We got up. Ate breakfast.

I stuffed my purse with his favorite toys and books.
I dropped the big kids off at my parents' house.

"Haraboji? Halmoni?"  Over and over from the backseat as we drove away.

At the children's hospital YH grew quiet.
He remembered this place.
He did not like this place.

We made our way to the third floor--craniofacial and reconstructive plastic surgery.
I filled out a million forms.

A baby came in and YH went over to her and gently stroked her arm.
"Ai-po, aegi. Ai-po."

The nurse called us back and YH's tears began to flow.
Just like last time.
The nurses were SO GOOD. They worked around his distress, did their best to get the necessary measurements without making him more upset.


Next came the two PA's. One for the neurosurgeon and one for the plastic surgeon.
They asked questions about his background, measured his head, looked in his ears and eyes.

He stayed on my lap while they were in the room.
He whimpered throughout.


The PA's left and told us they would be back with the plastic surgeons and the neurosurgeon.
We would all discuss treatment plans and surgery.


In the quiet, just the two of us in the sterile room, YH and I played with a toy car. We made it roll up and down the examination table. We made it hide under the crinkly paper.
We put it on the doctor's stool and spun it around and around.


We laughed! It was so much fun!

In the middle of a spin, there was a knock on the door.
YH froze as the whole craniofacial team filed into the room.
He looked at each face. He shuddered.


And then he decided the situation called for fist-bumps.


He walked to each person and held up his tiny fist expectantly.
And each doctor, each stuffy medical expert, bent down to fist bump my boy.


And he smiled. And he laughed.
And it was all ok.


****                     ****


As the doctors talked, one by one, YH walked around the room putting stickers on their bellies. The PA had a pocket full of stickers and she would dole them out to YH any time he wandered by. He took the stickers and carefully peeled the backing off before affixing the image to the dress shirt of his choice.


The doctors said his condition is mild. It is the one type of craniosynostosis that doesn't automatically require surgical intervention.


They said he was handsome. They said if he showed any signs of developmental delays they might recommend a different course of action.


They watched him climb around the room and laugh and interact with their colleagues.


The neurosurgeon turned to me and said "He seems really smart, you know."
A neurosurgeon said my son is smart! 

So for now, we wait. We see the pediatric opthamologist and make sure YH's vision impairment isn't caused by elevated intracranial pressure. We watch for any changes in his head shape. We pay attention to any headaches, dizziness or developmental delays.


For now--we put surgery on hold.


The relief I feel at this news is overwhelming.


 

Breathe deep and let go.

I think I've mentioned before that as perfect as YH is for our family, Sean and I don't believe that his presence in our lives was preordained by a higher power. I know there are many families who do believe that a divine hand united them with their children--and I am sure they find a lot of joy and comfort in that belief.

In our home we believe that a string of tragedies occurred to separate YH from his first family. Through a series of twists and turns, and a mountain of paperwork, we found our way to his side. Where we will remain--lifting him up with love--forever.

I think I also mentioned a bit about my sanctimonious hierarchy of decisions about what constituted an "ethical" adoption. It's an elaborate matrix, and speaks solely to my personal beliefs. Every time I make a sweeping statement about what I believe to be an absolute truth in adoption ethics it can be easily undone by one family's story. I keep my eyes and ears open and make informed choices.

And the truth is that even though I did my due diligence, and worked hard to choose a program that I felt was time-tested and had a high degree of accountability, things did not go as expected. The truth is that even though we set out to adopt a "waiting child" from a country with impeccable medical care, things went wrong for our son. The truth is that even though our son received mountains of loving care from his foster family, the "experts" missed opportunities for intervention/medical care. These missed opportunities led to serious health problems. Health problems that will need to be corrected by major surgery. To be clear: this surgical intervention is separate from the (now minor seeming) surgery we were told he needed back in January.

Luckily, I have a very close friend whose own child faced similar health issues last year. Her son also underwent surgery, and it is only through her experiences that I was able to recognize right away (on the day we met him) that YH needed immediate attention for his as-yet undocumented need. My friend very generously reached out in response to a panicky text message I had sent her and showered me with love and resources.

Through her leads I connected with an online support forum for YH's biggest medical challenge. And it was there, as I sought information and support, that I encountered my first negative comment about our family and how it was formed.

Ouch.

In response to my introduction post, and my raw pleading for information/words of comfort from parents who have walked this road, one person responded, "Only way I approve of international adoption is for children with medical issues. Albeit, even then I am hesitant due to the rampant amounts of child trafficking."

So, um yeah.

Thanks?

I mean I get that this person was trying to express approval at our decision to adopt a waiting child but really? A medical forum--a forum for hurting parents worried about their children--that's where you decide to pass judgement on how families are formed?

I guess it would be easy to say "There is one scenario where I approve of international adoption: waiting children." Except where it's not so easy, and not so clear-cut.

Do you approve of families who adopt a waiting child with a "correctable" special need? (ie: one that is readily fixed through surgery/treatment and has no impact on the child's life moving forward)

Do you approve of families who accepted a standard referral with no identified medical needs who later turns out to have serious health problems?

Do you approve of families who adopt a "waiting child" who later turns out to have been a trafficked child?

Do you approve of families who accepted the referral of a waiting child only to find that the needs of child they took custody of don't match the file of the original referral?

Do you approve of families who adopted domestically, from a birthmother who was coerced into her decision?


I know families who have experienced all of the above. And more.

At the end of the day, I'm not going to sit in judgement of how families are formed. I'm just not.

I'm also not going to sit around and bemoan the unexpected in our own adoption. YH's medical needs are more immediate and of a different nature than what we anticipated they would be. We spent months and months preparing to accommodate and support needs that have yet to present themselves.

And so we start over. We learn about new needs, and new treatment options. We decide to pray, to send out requests to the universe, to beg and plead to a higher power to let our insurance cover his needs.

The next few weeks are filled with specialist appointments. So many! And my poor sweet boy--he can't stand the doctor's office. Can you send some love our way, if you have any to spare?
We're taking love donations.
We'll take all we can get.

In the lab.

We are in the waiting room of the children's hospital lab services.
YH is every child's friend here.
He runs gleefully up to each new face that enters, grinning from ear to ear.
"You're here! Hooray!"

The little girl with the visible mustache.
The pale little boy curled up in a chair, head leaning against the wall.
The brothers--carbon copies of one another. Same beak noses, small chins, brown eyes made large by thick glasses.

It's like a party to YH.

The parents watch him with guarded smiles. Their faces are pale too, but from worry.
Worry about whatever brought them to this waiting room.

A woman enters carrying her son and a large body pillow. She checks in at the front desk and begins to arrange her child and his comfort items in a chair. She does it so matter of factly, in such routine movements--this is not her first time in this space.


She sits next to her son and opens a bag of crackers. YH's ears perk up--he can hear a snack being opened from a mile away. He dances his way over to them and says "Gakka juseo" while rubbing his chest in the "please" sign.


It is a charming performance. The mom asks if he can have a cracker. I say yes. YH carefully accepts the treat and climbs up next to his new friend to eat while happily kicking his feet.


The mother asks me "Is he yours?"
"Yes. He joined our family through adoption two weeks ago."


Oh, she says. She takes a breath and says "My husband and I want to adopt." She is stroking her fragile son's hair as she tells me this. "We don't know how to go about it. We want a daughter. We can't risk..."


She stops.


I tell her there are many ways to add to your family through adoption. I tell her the name of our local homestudy agency. I tell her she can email me if she wants to talk about options. She looks confused. I know that look.


That look says "But if we want to adopt, and we have a home and love to share, can't we just *get* a baby? A baby girl?"


I'm sorry. It's not like that.


*****                *****

We leave the lab with tear-stained cheeks, band-aids aplenty, and a list of referrals as long as my arm. Plastic surgeon. Opthamologist. Geneticist. Developmental pediatrician.

And so on.

He is full of surprises, my youngest.

Things we prepared for seem to be a non-issue.
Things we never contemplated are taking priority.

Nothing to do but hug him tighter. Nothing to do but buy an accordion folder for medical bills.

We're in this for the long haul little man.

First meeting

I do finally stop worrying long enough to sleep--for a few fitful hours. None of us can sleep past 6am so we are up and bickering with each other for an hour or so before breakfast begins. We wrap the million gifts we have for the foster family and social worker and pack them carefully away in subway-proof backpacks.

I try to remember what each task feels like:

This is taking a shower on the day you meet your son.
This is putting on a dress on the day you meet your son.
This is trying to fill in your eyebrows with hands made shaky at the thought of meeting your son.

My mom comes up to hang with the big kids while Sean and I nervously stuff our pockets with "essential" items that we will forget about as soon as we leave the hotel.

Suddenly we are on the street. We are on the subway. We are at the right stop, searching for the appropriate exit. We are stricken.

We are early--about 40 minutes early for our assigned "check-in" time.

We sit in the cafe at ESWS, our placing agency. The cafe employs single mothers; thus helping to support women who choose to parent their children (women who are largely seen as "unemployable" due to their single-parent status). We are nervous and self-conscious as we order iced americanos. We are overly thankful to the barista and we sit and sweat in shamed silence as we sip our drinks.

Finally it is time to check in. Our assigned social worker is busy in appointments all day, so another woman guides us through paperwork. It is so busy at the agency that we are seated in a waiting area outside of a room where a family is meeting their child for the first time. My eyes water as the door to the playroom opens. A tall and beautiful woman steps shakily out--her eyes are damp too but she is laughing. I know who she is immediately--an Australian woman I "met" through the internet. We greet each other and laugh and cry together.

We are led on a tour of the agency.

We are taken up to the floor that houses that baby reception room. Currently there are 50 babies there, waiting for foster or forever homes. About 15 of the babies are sick and are in a separate room to receive extra care. The babies are SO small.

Next we (about 10 families in total) file into a room to listen to a presentation by Dr. Kim, president of ESWS. Dr. Kim tells us about the history of her country, the history of adoption in Korea and the many projects that ESWS runs to care for at-risk families/women/children.

I am trying to pay attention, but in my head I am only thinking about the fact that we will be meeting YH in two hours.

Now one hour.

Our social worker finds us and chides us for not bringing Nana and the kids to the meeting. She leads us to a playroom and we sit nervously on the floor.

The door opens and we see this.

Oh.
Oh.

Mrs. S pulls a package of crackers out of her purse and immediately starts feeding snacks to YH as a way to ease him into the room.

He looks around at us and then dives into the toys. He plays and plays, leaving each toy after a few seconds of attention. I try not to reach out to him, hoping that his ambulatory circuit will bring him naturally to my side. I try to ask Mrs. S the questions I formulated months ago, when none of this seemed like a real event.

Mrs. S answers in paragraphs with sweeping arm movements. I look at her while she speaks, waiting for our social worker to translate.

He is very busy. He gets bored with toys easily. He isn't interested in books. He waits for his Appa to come home each night, and then leads him through his evening routine. Appa, take off your shoes. Appa, wash your face. He loves smart phones and can use a touch screen readily. He drinks a few ounces of water or milk each night before bed and then goes to his room. He lies down and waits for Mrs. S to rub his back until he falls asleep. He is sensitive to the word no, and does better with redirection. When he doesn't get his way he screams. He climbs onto everything, opens every drawer, hides bits of paper int he corners of the apartment. He loves flowers, trees and big dogs. He is attuned to the moods of others and will comfort those he thinks to be in distress.

So many details about his life. And I haven't even touched him yet.

Finally, he wanders my way with a balloon in his hand.

 This is it. This is my son.

****

Later, Mrs. Shin will ask us questions about why we didn't pursue a "standard" referral (ie: one without identified medical needs). "You qualify, right?"
We explain what led us to the waiting child program.
She asks us why we want to parent this boy--she has another child with a similar background/profile who is almost three. This child will be transferred to a government orphanage soon, with no hope for being adopted, because no families have expressed interest in his file. (For the recond *YH* is almost three; this boy's fate could easily be his own).

We talk a bit about how we have prepared ourselves for his potential needs, and the personal connections we have to his "risk factors".

She asks us how he seems to us--developmentally.
I say he seems perfect, exactly the boy I was hoping to meet.

****

In the middle of our hour-long meeting, YH's foster brother calls his father (YH's "Appa") on the phone. YH talks animatedly to him in gibberish. He smiles at the phone and listens intently to his beloved Appa's responses. This is a routine for him; talking to the man he loves best, in a language noone can understand.

Mrs. S asks if we can come back the next day. Mr. S has the day off from work and wants to meet us.
Yes, we say, of course.

I'm watching.

                                                                     Walking to school.


Y'all.
I love our neighborhood school.
I really, really do.

In the national conversation surrounding public education my state is usually the butt of the joke. We are not known for our progressive ideals, for our investment in future generations, for our  belief in science. It can be hard for a transplanted Yankee to navigate the public school system here without wincing mightily.


But.

Our neighborhood school is a sweet little oasis. The facilities are old and the playground has seen better days. And yet the teachers are fantastic. The student body is an almost-too-good-to-be-true representation of diversity. The parents are involved. The principal is steadfast in the belief that "teaching to the test" helps no one succeed.


Each class has their own garden plot where they tend crops that are later harvested for a school-community wide celebratory feast. Kids eat the salad they grew out of bowls they made in art class. A dance teacher comes to visit the classes once a week to lead the kids in expressive movement. There are free after-school activities like Robotics and Chess Club and running club...Each week teachers select new students to be "Peacemakers of the Week".

Peacemakers! I die.



We have been so fortunate with the teachers our children have had. We have also been so fortunate that our children thrive in a traditional education setting. I know that each day my children are spoken to kindly, that they are listened to, that they are praised appropriately. I know that at each parent-teacher conference my job will be to review their accomplishments and to discuss how to challenge them more. There will be no conversations about difficult behaviors, social anxieties, or failing to meet milestones.


I also know these days are numbered. It is likely that our youngest son will have a very different school experience. And I am worried that his path will make me fall out of love with my neighborhood school. That my progressive-hippy parenting ideals will have to fall by the wayside in the face of a system unequipped to handle his needs.


YH's future is likely to hold some learning difficulties, behavioral challenges, sensory issues, social problems...and yet on the outside he will look like any other kid. His special needs will be invisible to the untrained eye and will instead present as defiance, stubbornness, hyperactivity, being just plain weird. He may be delayed in some academic areas and yet excel in others. He may be gifted artistically and in athletics.  On the playground he may gravitate to younger kids because his development is more on par with them.

And so I am watching. At pick-up and drop-off I am watching the way the teachers and staff respond to other "quirky" kids. I am listening to the way they tell a child for the five-hundredth time to stop climbing a tree. I see them run out of patience at the end of the day. I see them react as any human would to a particularly annoying child, one who doesn't seem to "get" the basics of social interaction.

I am watching.

And I see how teachers take an extra minute to talk to me about my daughter's accomplishments, turning their backs to the a-typical child hopping up and down next to the bench. I see how much easier it is to give the good news to a parent than it is to talk about the trials of the day. I have compassion for the teachers. I do.

But I am also building my mama-arsenal, preparing for a battle I don't yet know if I will need to wage. I am getting ready to go up against the very people who have thus far been key players in our community support system.

I can kill with kindness. I can kill with legal-ize.
I can do whatever it takes to make sure my kid is supported.

I am watching.

It's your lucky day!

Internet friends, it is your lucky day!

Today I got to do my emo-sadsack-rambling to a LIVE (freakishly strong) HUMAN  BEING. Which means you, dear reader, shall be spared some of the intensity of entries past.

You are welcome.

Sean will also be glad once he hears this news, as I made the last two days nearly unbearable for him.

 We've been fighting all week and it is 98% my fault.

                                                   Handsome man in beard hat and parka


In times of stress I have the charming habit of lashing out at the person closest to me, the person who I know can see me at my worst and still want to hang out with me. Horrible, right? Instead of seeking solace and understanding from Sean I redirect my frustration onto him.

I am also one of those annoying spouses who picks and picks at a subject until I get a reaction. In an argument I think and process AS I talk and I view silence as the worst kind of enemy. I am prone to hyperbole and I want immediate responses from my partner.

My husband prefers to listen, think about what was said, think about what his reaction will be, take some time to find the best words...and at this stage in the "discussion" I have already freaked out over his lack of reaction and begun to fire barbs at him until he HAS to respond.

I'm awesome, I know.


So last night's "discussion" was about the different approaches we have each taken in preparing for YH to join our family. My approach has been to function as an information gatherer. I have bookshelves full of tomes about his potential special needs, about adoption, about toddler adoption, about adoption and attachment...on and on. I read dozens of blogs, participate in online discussions, and compile lists of developmental pediatricians/occupational therapists/geneticists/diagnostic clinics. I buy toys and t-shirts and I hand-sew bedding for him.


I sit and silently seethe when it looks like I am the only one who is preparing for this child to be a part of our daily lives. I wait for the merit fairy to descend from the heavens and bestow upon me a very special martyr badge. I make an ass of myself because I cannot recognize that just as in our divergent "discussion" styles, my husband prefers to take a more subdued approach to these preparations.


In fact he is thinking about all the same things that I am thinking about. He is planning for our changing family dynamics and putting intentional thought into how best to support one another through the "knitting together" phase of our growth. He is imagining how we will survive sleepless nights, how we will insure our older children get the attention they deserve, how we will work out the logistics of our first trip to the supermarket as a family of 5....


Sean is focused on the practicalities of our daily lives and I am focused on supporting the (as-yet) intangible needs of our future son. What I perceived as being efforts at cross-purposes from one another are in fact complementary pieces of our survival tool-kit.


The knitting together has already begun.


We're a good team.

(even though it took a giant fight to realize it)

Part IV: Third wheel

                         Miss A, Sweet Bubs, and YH. This is as close to a family portrait as we can get.

 One of the most common questions I read on adoption forums is "When should we tell our 2/3/4/5 year old about his/her new sibling?" As with any parenting decision I believe the "right" answer will vary from family to family, but I am certain that for *our* family it was right to tell Miss A and Sweet Bubs early--before we were even matched. My kids have been involved in our adoption process pretty much from the beginning.

Sweet Bubs was totally on-board from day one. Miss A had some reservations. Reservations that she did not hesitate to express to our social worker during our home study visit. Reservations along the lines of not wanting a baby to touch her stuff (cough cough SEAN cough cough) and not wanting the baby to share her room. In fact Miss A discussed these reservations at length with our social worker (who luckily found the little lady to be utterly charming).

Sweet Bubs didn't say much to the social worker but he did say he wanted two babies: a boy AND a girl. He wanted them to sleep in his room and he wanted to help take care of them. And when I read those sentences in our home study draft my eyeballs melted from the cute and I died on the spot.

The day after we were approved to parent YH we received this picture in an email:

                                                                 YH at 11 months old
 
Wow. What a super cute and smiley way to introduce the kiddos to their new baby brother. Since that first update we have done our best to include YH into our family life. We have several pictures of him on display. We talk about what his life is like with Mrs. S and we try to imagine what he's doing at different times of day. We gave the kids a doll to look after until YH joins us. Miss A takes great care with "YH's baby". We interact with our toddler friends and make sure to say things like "Baby J is the same age as YH--he will probably be able to play with you just like this." Sweet Bubs speaks frequently about what he will help YH with in the future: learning to brush teeth, how to put away toys, how to pet the dogs...

Are you rolling your eyes at how sanctimonious and smug this all sounds? Don't.

Here's the thing: I feel pretty confident that both kids are prepared to have a theoretical sibling. Living with the idea of a toddler is WAY easier than living with the actual little body. A little body that runs and climbs and TOUCHES ALL YOUR STUFF (Miss A, you were sooo right to be skerred of that!). I know that as much as we've tried to prepare the littles for our changing family dynamic, there will still be unanticipated adjustments.

What I am most concerned about protecting is the relationship between my eldest children. Since the moment 19 month old Miss A laid eyes on 12 hour old Sweet Bubs they have been best friends. They went through the "princess" phase together, with Miss A resplendent in glittering gowns while Sweet Bubs (wearing his own sparkling sundress) trailed behind her like a handmaid. Miss A potty trained Sweet Bubs (amazing) and Sweet Bubs can make Miss A laugh just by looking at her. Miss A volunteered to be Sweet Bubs' "reading buddy" at school; every Friday she walks down the hall to his classroom where they curl like kittens in a corner and read books to one another.

                                                   Miss A and Sweet Bubs in Maine

I do not ever want their closeness to change. I want Miss A and Sweet Bubs to remain best friends and to retain the secret language they have built over the last five years. At the same time, I am wary of YH being excluded from this fraternal web. I worry about how a child who already has a different first language than the rest of our family, and who is of a different race form the rest of our family, will feel about the tight bond between his siblings. I do not want him to be a third wheel.

I am hopeful that the age difference between my youngest and his elder siblings will help to mitigate any feelings of exclusions. I am hopeful that Miss A and Sweet Bubs are able to envelope YH in their love and to welcome him into their cozy friendship. I am hopeful that by including my elder children in the conversations and decisions surrounding our adoption they will naturally feel a part of the process of welcoming YH into our home. I am hopeful that in turn YH will see how much every member of our family wanted for him to be with us.

Part III: Cue Tom Petty--The Waiting is the Hardest Part

My first child was vacuum-sucked into the world five days past her due date. My second child was coaxed out by a dose of castor oil taken eleven days past his due date. My third child...well, he has no "due date". We are currently in the end/middle/surely-not-beginning? of our wait to take custody of YH. The countdown clock started ticking 13 months ago when we officially sent our acceptance paperwork to Korea.

The super fun awesome (NOT) part of the process is that we have NO IDEA when his emigration permit will be processed, thus triggering our much anticipated "travel call". When we initially accepted his file our wait-to-travel was estimated at 11 months. On Mother's Day 2011 (thanks universe!) we found out the wait would be 14 months. As of today, no one has *officially* said that timeline will also be extended but it sure looks like a possibility to me and many of my fellow waiting parents.

I have done my best to be stoic about the wait. If you asked me what the wait was like, or how we were doing, I probably responded with one of the following chipper phrases:

1. We're so thankful he has more time to spend in his home culture!
2. We know he's being well-loved by his foster family and that's all that matters!
3. This gives us a chance to work on our Korean language skills!
4. I am so grateful for the extra time this gives us to prepare for his special needs!

You know why? Because those are the *right* things to say. Those are the thoughts that my intellectual self has rationally constructed. Those are the bon mots that my brain dispenses in moments of pure panic. Moments when my emotional self takes over and my throat closes up in a swell of despair. In truth when my mouth is forming one of the above sentences, my heart is screaming "This sucks! I hate that I have no idea when this child will join us! I just want him in my home."
I do. I really, really do.

So I've been living in a state of stagnant self-pity for the last two weeks. Everyone in the Korean adoption community expected that January 2, 2012 would bring rapid progress in the emigration process for our waiting children. We pinned our hopes on that day and started researching different flight itineraries and worrying over which hotels were already booked. And I guess we were all getting a little too smug about the prospect of travel...because for the last nine days there has been silence. Now we all sit stunned in front of our computers, alternating between hitting "refresh" on our email, checking adoption forums for news, and then hopping over to our adoption agency website for updates.

And I admit that in my desperation I wished for an email from our program specialist about anything, just something to let me know that she was there and she knew I was waiting.

(Hahahahaha...Oh Nora! How dare you tempt fate that way.)

And so my wished-for email arrived yesterday at 1:43 pm. But instead of telling me GOOD NEWS my wished-for email (now more of a visit from a bad fairy) told me that our son needs surgery.

Surgery.

And so I sit 6969 miles away from him waiting for medical files to be translated, for specialists to be consulted, and for big decisions to be made. I am more helpless now than ever. Instead of feeling stagnant I feel wild inside. This is a real little boy facing real medical intervention and I have no say in the matter. The Korean government is legally his guardian and they get to decide when/where he receives medical treament. His sugery and recovery could very well further delay his emigration process.

I should clarify that my son's medical need is not life threatening, but it does need to be corrected and it would impact his quality of life if left untreated. I should also say that we intentionally set out to adopt a child who needed extra medical support. As it turned out, the child meant for our family had "invisible" needs (or so we thought). We knew that YH would likely need several different kinds of therapies throughout his life and we set about drafting care plans and building resources in anticipation of those "invisible" needs.

And then we were blindsided by a "visible" need.