The worst, the best.

One day last week the worst thing ever happened.
YH came up to me distraught. In his hand was THE microphone--the one with his foster mother's recorded message on it. He held the microphone out to me, saying and signing "Help. Please. Help. Please." over and over.

I took the toy and pressed the "play" button.

Nothing.

No words. No Umma's voice delivering her message to YH.

Just a tinny "click" followed by sickening silence.

YH stood before me with tears in his eyes.
"Help. Please. Help. Please."
His little hands smacked together harder and harder each time he signed "help".

I pulled him into my lap and told him there was nothing I could do. Umma's voice was gone. Someone had accidently deleted it; no way to know who.
I'm sorry baby. I miss her too. Should we look at some pictures of her? I'm so sorry baby.

Then I burst into tears as he said "No. No. No." over and over.

****               ****

We've been a family for three months now.
THREE MONTHS.

We are riding the waves of grief and transition as they come--for all of us.

The big kids are grieving the way our lives were before YH joined us. Back when we could be more spontaneous, stay out at the pool later, eat at any restaurant. When it was easy to buckle themselves into their booster seats (no cumbersome car seat smushed in between in the backseat of the Honda Fit). When our days weren't carved into tiny windows of time between meals and nap.

YH is grieving his former life too--his foster family, his first home, all that was familiar. His grief shows up in many ways. Fussiness. Tantrums. Frustration. Constant eating. Crying. Needing lots of physical contact.

Along with the grief there is joy. My Sweet Bubs has found his groove as a big brother--and YH *loves* him so much. YH calls out his name and follows in his footsteps. He repeats every word Sweet Bubs teaches him and copies everything he does.

Miss A also loves to teach YH new things and she claps loudly at his every accomplishment.

YH has started calling us "Mommy" and "Daddy". He draws out "mommy" into at least eight syllables, rising and falling like a song.

That part is bitter-sweet. We miss being called "Umma" and "Appa", but we are happy that he knows he is loved by a Mommy, a Daddy, an Umma and an Appa. (And his first mother).

At three months home we've found a normal, but I don't think it is the normal. I imagine it could take years to get to that point. I do know that I love my little family. I love the work we're doing, and the way we can laugh our way through the uncertain parts.

****                   ****

The day after the worst thing ever happened, I received an email from YH's foster mother. I try to send her a written update (translated into Korean) on YH's growth and development every other week. I know she is worried about some of his special needs, and I want to be sure she knows that we are doing everything we can to help him rise up.

This email was the first response we received from her. She said she was glad YH was doing well and receiving the medical attention he needs. She said it has been hard for her family to be in their apartment without YH. That she was very sad and missed him very much. She thanked me for sending emails and lots of pictures of YH in our home. She asked after the health of my mother, and sent her love to the big kids.

Then she said she was sending three videos to YH--would we show them to him? Three videos: a video message from each member of the family, each telling YH he was loved.

I cried when I watched them (I cry a lot these days).

As soon as YH woke up from his nap, I sat him in front of the laptop and pressed "play".
There was Umma--her face, her hands, her  voice.

And YH's face LIT up. The hole left by the deleted microphone was filled. He laughed and waved at the screen. He kissed his foster family's faces. He turned to me and yelled out "Mommy!" in delight when his Appa appeared on the screen.

And I cried again, but this time it was happy tears. What a gift--and what perfect timing.

It was the best thing ever.

                              (Please forgive my high pitched squeal--it couldn't be helped)

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.

Numb.

The tiny dot in the middle of the frame is me, on my way back to shore

Each day in Maine I take the time to swim in the ocean.

I put one foot in front of the other with purpose as I enter the freezing water. I keep walking even though my calf muscles seize and twitch in horror. I walk out to my waist, letting the icy waves wash over my belly. I walk out up to my armpits, clenching and unclenching my fists.

I swim for as long as I can stand it--sometimes for 20 minutes or more. I swim in a straight line out to the horizon, not daring to look down into the waves or back to shore. I move slowly at first, fighting the urge to gasp for breath as my lungs shudder against the cold. I alternate between the crawl, sidestroke and breast stroke. If I keep my face in the water for too long my chin will go numb and my lower lip will droop. Salty rivulets will run down my neck.

At first the cold is all-consuming. I cannot think of anything but the water temperature--my body won't allow me to forget what an idiot I am for doing this. After a few minutes the fact of the cold disappears, leaving a feeling of being scraped hollow in its place.

My limbs are heavy, but they keep moving. My scalp is taut and my eyes are clear. My whole body is numb--plunging forward through the water. I feel like my brain and the beating of my heart are the only things that matter.

I enjoy this feeling of weightlessness.
I enjoy the feeling of being on the brink of disaster.
I enjoy the silence, and the sun, and the knowledge that there are unseen worlds beneath me.

Back on land I am breathless as my blood begins to warm. I become aware again of the parameters of my form, of each hair on my skin. I hear the birds, and my children, and the sound of the waves hitting the rocks. 

I miss being numb--and that feeling of loss follows me home to Texas.

****                  ****

At home I find myself trying to withdraw into the numb, to avoid the world around me.When I step outside the heat rushes in to wrap my head in fire. It is like living in an oven, the opposite of being numb. Instead of feeling nothing I feel everything: every pore, every wrinkle.

The sweat and the sun serve to highlight physical sensation, and I hate it.

I don't want to be reminded of the mosquito bite on my ankle, or the too-long-hair at the nape of my neck.

I want it all to be erased by the ocean, with only my brain and heart left.

****                   ****

I watch the Olympics with my daughter and sit with the knowledge that only thing I could have medaled in as an adolescent was disordered eating. I roll the desire to be numb, and feel scraped hollow, over and over in my memory. I find its match in the strictly regimented days of my youth, when conquering hunger through sheer will power was my ultimate goal.

I have a physical memory of how triumphant I felt with an empty belly. Of how it felt to be dizzy and shaky and still feel like this was winning. Eventually, I could flip the switch and disconnect my mind and body. I could be numb.

It is scary to recognize that my daily swims in the ocean summoned that physical memory. That now as an adult, who prides herself on being balanced and healthy, my mind and body could betray me. 

Right now everything in my life is turned upside down: my professional life, my role as caregiver, my daily routines....All of it has changed. I can't control any of these changes--and I thought I was ok with that. But part of me is still panicking. Part of me wants to lock down the self-control to get a handle on all that is changing.

****                   ****

The difference this time around is that I am aware of why my mind/body are reacting this way. Why I crave the numbness in the face of the unknown and uncertain. And I am prepared.

I have my support people, I have my friends, I have my group work (which I really need to tell you about in another post).

And I'm going to be ok.

Even in the heat.

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.