What is Oculocutaneous Albinism? (taking it to the next level)

(yeah, I know, it's been about 5 years... stuff has happened, I'll get to it)

About 5 years ago, when I was in process to adopt my now 6 year old daughter Fiona, I wrote a brief piece about albinism, which is Fiona's main "special need".  

She still doesn't look at the camera. Probably plotting something amazing.

I've learned a lot about albinism since then.  Fiona is in 1st grade at school and thriving like nobody's business.  Her spunk carries her where her vision does not.  She is extremely adept at using the technologies provided for her in her IEP (Individual Education Plan), such as her CCTV, slant board and dome magnifier. (some examples linked - not the actual models she uses)

Crazy hair day.  The pink actually made her blend in *better* at school. 
Important note: colored hair spray comes out.  Colored mousse does NOT.  

 She doesn't suffer socially either.  We can't go anywhere in the school, and hardly get through an errand of any kind without someone yelling "HI FIONA!!!"  Everyone loves her (with the possible exception of the mother of the toddler she keeps trying to pick up and walk off with... what the heck, child?)

We couldn't resist.  She LOVES Elsa.

So we have it all in hand?  Functionally, yes.  Fiona is legally considered "disabled", but she is far from handicapped.  She has all the tools she needs to get anywhere in life that she wants to.  And she wants to!  Especially if there's food involved.  The child is a bottomless pit.  

BUT - I love to learn.  I love to deepen and broaden my understanding of things, so settling for "she doesn't make melanin, something about an amino acid" wasn't cutting it for me.  

Shortly after Fiona arrived home, she saw a geneticist at Denver Children's Hospital International Adoption Clinic.  He confirmed that Fiona has Oculocutaneous Albinism (affecting eyes, skin and hair), probably type 1, probably subtype 1A. (the most "completely depigmented" variety)  The test to confirm this conclusively cost thousands, was not covered by insurance, and would basically give us "gee-whiz" information unless Fiona became adamant that she wanted to have (or avoid having) children with the same condition.  

(Interesting fact: both parents need to not only carry and pass on the gene for albinism in order for the child to get it, but it has to be the same type of albinism. An OCA1 parent and an OCA2 parent would have children who have normal pigmentation for their ethnicity, but would carry genes for both types.)

I'm now back in college, taking pre-nursing courses in preparation for starting at Beth-El College of Nursing (within UCCS) next year.  As part of an assignment for Anatomy and Physiology, I read an article (abstract here) published by a Japanese team back in 1989, in which they isolated the root cause of Oculocutaneous albinism.  In it, I was able to learn the actual molecular level mechanisms of OCA.  Frikkin exciting for me!  (That's not sarcastic, I really dig this stuff.)

HIGH SCHOOL BIOLOGY REVIEW

• Enzymes are proteins that do stuff (make stuff, break stuff down, change stuff into other stuff) in the body.
• Proteins are made of amino acids
• Instructions for making proteins are in your DNA

IF YOU LEARNED THIS IN HS, GOOD FOR YOU, BUT I DIDN'T

• When you need to make a protein, your DNA "unzips" in the section with those instructions, they are transcribed, copied, and used as a recipe to gather the amino acids that make up the protein.
• DNA nucleotides (the "rungs" on the double-helix "ladder") are represented by letters.  
• Every 3 letters makes up a "codon", which is the call-sign for a particular amino acid.
• Protein "recipes" start with a "start" codon, and end with a "stop" codon.  

So here's the short of what happens with OCA

In order to make melanin (the brown stuff that gives our hair, skin and eyes color), the amino acid Tyrosine is supposed to go through 3 conversions.  The enzyme TYR (tyrosinase) is responsible for two of those. 

The code for this enzyme TYR in people with OCA has a problem, though.  There is one extra letter - C - stuck in about 2/3 of the way through the instructions.  That not only shifts the whole thing down by one letter, but it also messes up the recipe.  Remember that every 3 letters makes up a codon, which is a "code" for start, stop, or an amino acid.  Well, in this case, the codons are scrambled because they got shifted down one space.  Wrong signals are given this way - and in this case the "stop" signal is given (accidentally) very shortly after this extra C.  Oops.  So the resulting TYR enzyme is short.  Not only that, but the instructions for TYR are supposed to build two copper-binding sites.  The shortened TYR has only one, as the other got cut off.  Oops again.  

(Dangit, Jim, I'm a doctor, not a geneticist! Speak English!)

Okay, okay... Imagine with me that you're building an airplane left to right.  I know it wouldn't happen that way, but stay with me.  

You start building:  left wing - check, cabin - check...  and the instructions end there.  You need TWO WINGS for this thing to fly, right?  Well, sorry, the instructions ended and you only get one.  HAVE FUN!  

It's kind of like that.  

Without BOTH copper sites, TYR doesn't work as an enzyme.  It's useless.  So tyrosine cannot become melanin, and my little girl cannot freckle or tan, and she glows in the dark. (Almost - it's not something you want to wake up to in the middle of the night.  She's the cutest thing in the world, but she scared the crap out of me standing silently next to the bed.) 

So there's a thing you know now.  Isn't biology amazing???  

Should have put this up in September...

*This is a "process so far" entry that I wrote in September, WAY before our home study, dossier, match with our beautiful girl, etc.  It's more detailed than my overwhelmed memory is right now, and I had happy reminiscences while reading it. Enjoy.*

 

Our adoption process really began in earnest shortly after I started my midwifery training.  I am currently doing the academic portion of my midwifery training through Midwife to Be, an online/correspondence program headed by Lisa Aman, CPM.  Midwife to Be, or MTB, participates in mission trips to the Dominican Republic several times a year to both get more hands-on experience with births and to provide needed equipment to the Dominican nurses and midwives.  

After Lisa’s church returned from a mission trip to Uganda, she started working on setting up a midwifery-mission trip there.  The minister’s wife whom they worked with is a midwife at a hospital that delivers 20-30 babies every day.  It is also located near an orphanage run by the couple that serves over 600 orphans.  She said if people were interested in adopting one of the orphans from Uganda, there would be opportunity to pursue that.  

*PERK*  

Adoption?  We’ve always wanted to do that.  There was one problem, however: I could be interested all I want, but I’m only HALF of the parents in this family.  What would Lashi say?  I figured he’d say what he usually says about my great new ideas: no.  Usually, he’s right.  If left unchecked, I’d not only bring home half of the Ugandan orphan population, but I’d also start 3 new businesses, buy a farm and a herd of milk cows and run for office all at the same time, while learning to speak Arabic.  

 Can we say burnout?  

So, I took a deep breath and told him about the trip and the hospital, the birth opportunities, the orphanage and all the little kids – probably very fast and all in one breath, but I can’t remember – and then I waited for his response.  He took his own deep breath, looked me in the eyes very seriously and said, using his finger for emphasis, “You are allowed to bring home ONE child.  Do not even look at twins, sibling groups, anything.  I know they’re cute, but I don’t care how cute they are.  ONE CHILD!”  

I couldn’t believe what I was hearing!  He was ready to take the step and go for it without a big to-do.  I couldn’t even get him to do things he really wanted to without at least some hemming and hawing.

I got to work searching out Ugandan adoption requirements.  Turns out, there were several major problems.  One was the residency requirement.  Though they “sometimes make exceptions”, the Ugandan government requires a 3-6 month residency for foreign couples wishing to adopt a Ugandan child.  We couldn’t move the whole family to Africa for that long.  Lashi has work, the kids have school.  If we left them here, who would take care of them for that long?  Would I be travelling alone?  No, that looked like a problem.  Bigger yet, though, was that I found that many of the children in the orphanages are not true orphans, but children from poor families who cannot care for them, but visit frequently.  I don’t think it would be right under those circumstances to remove them from their family and culture.  There were many other “variables”, such as the time a visa might take, if the child we’re working to adopt becomes “qualified” at the right times, if the US would allow them in, etc.  Too many “ifs”.  

I looked at intercountry adoption in general, using the State Department website and calling all of the adoption agencies in town to get as much information as possible.  I filled quite a few pages in a notebook and printed numerous charts and lists of requirements.  

Many countries had residency requirements that we just could not comply with.

Many others had limits on the number of children allowed in the family.

Even more had wait times that were 3-5 years or longer!

In the end, the countries that “fit”, meaning they were willing to deal with us and we were willing to deal with them were: Russia, China and Ethiopia.  

Both Russia and Ethiopia were fairly stable, but had had some diplomatic issues in the past.  Both required two trips to the country.  Ethiopia has rampant AIDS, and although the children have to test negative before leaving the country, not all cases are caught.  Russia has a higher rate of children with RAD (reactive attachment disorder) after placement.

China looked like a long shot.  The income requirements looked very high: $10,000 per year per family member, including the child to be adopted.  That’s quite a bit if you’re a large family.  Second, the family has to have a net worth of $80,000 or more to qualify.  I was just counting up our liquid assets, and it doesn’t come close.  That worried me.  Third, they disqualify anyone who has had a history of depression.  I was on medication at the time for postpartum depression.  I thought that would disqualify us.   

Turns out I was worried for nothing.  Income includes the benefits package (health insurance, vacation time, etc.) which more than took care of that qualification.  Net worth includes a lot more than I thought: our home’s appraised value, our contents value (based on the insured amount), and more!  Finally, postpartum depression is not a mental illness - which is what China frowns on – it is a situational stress from a temporary hormonal state.  I was also ready to wean off of my medication (as the youngest had weaned from breastfeeding a couple months before), so that was not an issue.  

 Hooray!

Another issue with China is that because we have more than four children, we are allowed to adopt only a special needs child.  Uh-oh! Two of my siblings are “special needs”, did NOT want to deal with that!

Lashi, wanting to make sure we had checked all of our options off of the list, asked me to check out a couple other options first.

What about domestic adoption?  There are tons of children in the foster system that need adoptive homes.  What about them?  I called Denver county, because my mother said they had been so good to work with during my sister’s adoption.  They were very kind and friendly, but the story was clear: all of the children available through the county systems have serious issues from abuse, neglect, drug exposure, severe medical needs, or a combination of those.  At this point in our lives, we cannot risk the well-being of our other children on such a risky situation.  I know lots of kids that were adopted through the system, and their stories are not pretty, their adjustments are not pretty, and many of them never are able to recover from their past.  We just can’t go there.  

What about domestic infant adoption?  We actually had one agency that thought we could get an infant within a couple years: A Act of Love.  (Terrible, un-grammatical name, but I digress…)  They were also very kind, optimistic, and good to work with.  However, they said that about 7-10% of their birth mothers back out of the adoption AFTER the birth of the baby.  That’s a pretty high risk.  Also, quite a few babies are still special needs or drug exposed.

So, the choice really came down to China or A Act of Love.  Act of Love was a sure shot – eventually.  We would someday have an infant through that agency even if there was a lot of heartache and false-starts in the process.  China adoption meant special needs for sure, but we could pick which special needs we are open to!  We discovered that “special needs” in China means anything from serious medical problems to deafness or even a red birthmark or prematurity.  Almost anything can get you put on the “special needs” list.  Even some of the little ones on their “special focus” list, which is for harder-to-place and higher-needs children are all but perfect in my opinion!  The cost between Act of Love and China was about the same.  We decided to give China a shot, and if we did not meet the Chinese government didn’t accept our family’s qualifications, we would still have Act of Love to fall back on, and that was an option we could be happy with.  

During this debate, I looked at the only two China-focused agencies I could find: Great Wall China Adoptions and Chinese Children Adoption International (CCAI).  Both of them seem like very good agencies, but every family I knew that had adopted from China had worked with CCAI and had only the best, glowing reports about working with them.  There was a huge support network here.  Best of all: they were located IN Colorado, just one hour drive from our home.  They also run the only Chinese Cultural center in the country, and were the first Chinese Adoption agency in the US.  After talking to Joshua Zhong, director and founder of CCAI, and having all of our worried alleviated, it was settled:

We decided to adopt a special needs little girl from China through CCAI.

I called Hillary, the applications manager at CCAI, and she sent us the information packet right away.

Our packet arrived within days by mail with a packet about CCAI’s traditional China adoption program (healthy infant), another about the Waiting Child Program (special needs), forms for getting started, an application, schedule of orientation meetings, a DVD highlighting both the agency and their charitable arm that funds orphanages and cleft palate surgeries.  I poured over all of it until I had it nearly memorized.

I spent several days going over the Medical Conditions Checklist.  Because of my midwifery training, I was familiar with many of the defects and conditions that were listed on it, but I still had to look up some of them, like gastroschisis (rather shocking to see the first time), and strabismus.  After that, Lashi and I had to discuss each condition and whether it was something we thought we could (or should) deal with.  We had the options “Yes”, “No”, and “Maybe”.  We discovered that I was much more willing to say “yes” to conditions than Lashi was, but that came as no surprise.  We indicated on our sheet that we are particularly interested in a little girl 0-18 months with hearing loss of any degree.  

I spent so long on the process of filling out the sheet that we didn’t send it in for over a month.  Finally, I submitted both the Medical Conditions Checklist (MCC) and our Family Information Sheet online, which put us in the waiting pool for a child match.  

The very next day a little girl’s profile was posted to the Special Focus list on the website, meaning that she has languished in their waiting files for months with no MCCs that match their conditions.  Had I submitted our sheet earlier, she would have been matched to us.  She was a perfect little 9 month old with [I remove the specifics of her condition here just to be on the safe side of CCAI policy.  Needless to say, very minor conditions as far as we were concerned]– an absolute angel, gorgeous child.  I called Lashi, who was still very concerned about the amount of money that is due early in the process that we would not have saved up for several months yet.  I called my grandparents, Jim and Vera Spain, who very sweetly gave us a loan of $4,000 to get us started on the process.  I called Pam Rodriguez at CCAI, and requested the file for the little angel.  I was told that 20 other families had requested her before us, but we were put in the queue.  Pam said that sometimes the first family ends up adopting the child, and sometimes they go through dozens who all turn the match down.  I could hope, but it was slim. 

One week later, Little Angel was matched to her family.  It was bittersweet.  I was happy for her – the whole point is for the little ones to find their forever families.  But I mourned for the lost opportunity.  She would have been perfect for our family.  I can only trust that there is another little one out there who is the right match at the right time and is meant to be ours.  The other little girl I had been considering was also matched to her family.  [Again, removed her specifics.  She did require more therapy and medical attention, though.] 

Even though CCAI said that hearing loss is very seldom seen, we have seen two children just on the Special Focus list with hearing loss.  Maybe

 I never finished that thought back in September and I don't remember what I was going to say.  I was so focused on the possibility of having a deaf or hard-of-hearing child that I didn't give much thought to the other conditions we had indicated on our MCC.  Just goes to show - God often has different plans than we do and His turn out quite well.  

The Adoption Process so far

Few people are familiar with the process of adopting a child through any means, and the process for those who have done so domestically, or internationally (even from China) through a traditional program is still different from the China Waiting Child program through which we are adopting Xue.

Here's what's happened so far:

Over the summer of 2011, I did lots of research and we made the decision to adopt from China through the waiting child program at CCAI.

Medical Conditions Checklist
In August, we submitted our "Medical Conditions Checklist".  Basically, this is a form with a long list of medical conditions commonly (or relatively commonly) seen in children in China's waiting child program.  You go through the list, learn about conditions that you are unfamiliar with, and check "yes" "no" or "maybe" for each.  Some examples are: cleft lip and palate, club foot (one or both), scars/burns, hepatitis B, hearing loss, albinism and low vision, missing/extra fingers/toes, spina bifida, various heart conditions, paralysis, hernia, gastroschisis, genital malformations, etc.  If you want to see the list or look into adopting a waiting child, HERE it is.
Because of my studies in preparation to become a midwife, I was already familiar with most of these conditions, but we did some extra study and discussed them together.  One of our parent training teachers said at CCAI is that almost always one parent is more gung-ho than the other, or as Lashi and I say it, "He is the anchor, I am the motor."  You really need both to get somewhere safely.

Because we try to be very deliberate and careful with our finances and planning, we made a spreadsheet listing out costs and the timeline in which we could actually pay for the adoption.  We knew that there are financial helps available, but wanted to be able to pay the whole of it if we are not able to qualify for any of those.  My grandparents very generously gave us a loan to cover the homestudy and get us started.

In late December 2011, we submitted our formal application to CCAI and attended an orientation class at their headquarters in South Denver (on S. Holly Circle). 

THE HOMESTUDY
In January and February 2012, we completed our homestudy with our social worker, Lisa Staab.  We filled out extensive questionnaires that covered everything from our relationship with our mother to discipline to our sex life and more.  I would not have been surprised to have needed to record the color of my poo for a month, but that was not one of the questions.  At least we know they are thorough.  When we had completed those, Lisa came to our home and toured it, making sure that it was safe and of adequate size to support another child.  She interviewed Lashi and I together and separately, as well as talking to each of the children.  It's one of those moments that makes a parent hold their breath with nervousness, but the children were themselves and they did fine.  Liam told her about sea urchins and said that he's fine having another sister, except that she'll be "another human to deal with".  Antigone explained our chore chart, Brian said he gets in trouble because he gets "sucked into the TV", Dmitri roared at her and told her about Spinosaurus, and Erik refused to look at her.  Yup, those are my kids!  :)
The home study also includes the clearances from our child abuse records search, letters of reference from friends, letters of recommendation from the children's teachers, financial records, and medical exam reports from our doctors. 

In February we also began collecting and producing the various documents that are needed in our dossier to send to China.

THE MATCH!
Here's where our process differs from so many other processes.  On February 16, I got a call from CCAI asking if we wanted to review Xue's file.  She was designated as a "Special Focus" waiting child and her file was sent to CCAI (as opposed to the shared list, which is viewed by several agencies at once).  We had said "maybe" for albinism on our Medical Conditions Checklist, not really giving the condition a whole lot of thought.  We reviewed her file, looked at her pictures, did internet searches about albinism and talked to a couple doctors, then decided that this would be a good match.  We sent a Letter of Intent (LOI) to China, and were sent a pre-acceptance letter back.  Her file was pulled from the available waiting child pool and is being "reserved" for us until we officially get our Letter of Acceptance (LOA) from China after our dossier is done.

THE DOSSIER
The dossier is the packet of authenticated paperwork that represents us to the Chinese Government. 
It includes formal documents such as our birth certificates, and homemade documents such as our pictures, financial statement, and petition to adopt. There's a lot more, but that's a sample.
EVERYTHING in the dossier has to be notarized, then sent to the Secretary of State of the state in which it was produced, then sent to the Chinese Consulate that oversees that state.  So, because I was born in Oregon and Lashi in Washington, our birth certificates are now in San Francisco getting "sealed" by the Chinese Consulate, while our marriage certificate and all other documents (produced in Colorado) are in Chicago at that consulate.  When those come back, our dossier will be almost done, except for...

POLICE CLEARANCES AND IMMIGRATION
Oh boy, this is an adventure unto itself.  First, we went and got fingerprinted at our local police station.  I will post separately about THAT experience.  Those prints are run through the CBI (Colorado Bureau of Investigation).  When they came back clear (finally), the prints were sent on to the FBI to be checked at the federal level.  That took another month.
Once our police clearances came back, we filled out and sent in our I-800A form (to determine our suitability to adopt from a Hague convention country) to USCIS (immigration services).  They first go over our info, then they will send us instructions (in a few weeks here, we hope) to get a second set of fingerprints done at the state fingerprinting office in Aurora (near Denver).  Hopefully that will be less "exciting" than the first fingerprinting trip.  Those prints then go BACK to the FBI for their own round of checks.  Because... the first ones didn't count?  or maybe our fingers have changed?  perhaps we're in the midst of a crime spree?  Whatever.  Let's just get this thing done. 

WHERE WE ARE RIGHT NOW
Our I-800A is being processed at USCIS.  We have not yet gotten the fingerprint appointment or cards.
Our dossier is almost done.  Our documents are being sealed at the consulates.  I need to fax over additional paperwork today to the San Francisco consulate. 

WHAT'S NEXT?
When our I-797C comes back (the approval of our I-800A), that gets sealed at the consulate, then the whole dossier goes to CCAI.  They will go over it several times, making sure everything is in order.  When it gets the "all clear", it will be compiled and bound in a red folder (one BIG folder...) and mailed off to China.  THEN, it will take a couple months to translate the whole thing into Mandarin.
Then we should get our approval letter (LOA).  After that, visa and travel arrangements.
Currently, the estimate is that we will be traveling to bring our little girl home between October and December 2012.

Albinism 101

Okay, to begin with, I feel that I still know VERY little about albinism.  However, seeing as we are going to have a little princess with albinism very soon, I'm doing my best to learn as much as I can and help my friends and family understand a little about it as well.

WHAT IS ALBINISM?
Many people think they don't know what albinism is because it's usually referred to as "being albino".  I however, feel that albinism is a condition, not an identity.  As much as I love blonde jokes, having blonde hair is a characteristic, not a defining attribute.  Same with many other characteristics or attributes or conditions we may have.
Albinism is a recessive genetic condition that affects vision and often gives the person little or no pigment in their eyes, skin and hair.  Some people with albinism, however, have very normal pigmentation for their ethnicity.
Xue appears to have oculocutaneous albinism, which is the more common type.  (The other is ocular, and affects almost exclusively males, and primarily impacts vision and eye pigmentation, not skin and hair pigmentation.)  Within oculocutaneous albinism (or OCA), there are several subtypes, which are linked to which gene and melanin-related enzyme is affected.  The stereotypical "albino" look, with completely white hair, pink-white skin, and depigmented eyes is usually indicative of OCA1A or "complete" albinism.  This is what Xue appears to have.  (In short, she will make her Viking siblings look downright swarthy.)

HOW COMMON IS ALBINISM?  

In the U.S., the rate of occurrence is about  1 in 17,000 people.  Albinism occurs worldwide, and the rate of occurrence in parts of Africa are somewhat higher.  If the rate in China is comparable to the U.S., then it stands to reason that there are a WHOLE LOT of people with albinism there.  There is a stigma associated with albinism in China, and some even consider it a curse or unlucky.  It generally makes life difficult for people with albinism. 
WILL SHE HAVE PINK EYES?
Nope!  Surprised?  Yeah, I thought that too.  I thought white skin and pink eyes were the definition of albinism!  Turns out no one has pink eyes.  People with albinism have blue, gray or violet-looking eyes, or if they have more pigment, they may have hazel or even brown!  "Depigmented irises" are actually blue!  Beautiful, gorgeous, crystal blue in fact.  :)  That's what my baby has.

So why does everyone say that people with albinism have pink (or red) eyes? 
Have you ever had "red eye" in photos?  That is caused by the light (usually from the flash) reflecting off of the blood in the choroid behind your retina.  Something similar happens in people with albinism.  The sclera ("whites") of the eyes have no pigment, nor does their iris, and when light hits their eyes at certain angles, a similar pink or red-effect occurs.  In normal light, you get to enjoy their beautiful baby blues (or whatever they are).

WILL SHE EVER BE ABLE TO GO OUTSIDE?
Absolutely.  Because of the lack of pigment in her skin, she is unable to tan and will burn quite easily and be at higher risk for skin cancer.  The solution?  Long clothing, hats, and LOTS of sunblock.  I think I'm going to have to find a brand of sunblock that we like and buy it by the gallon.  
Also, because her irises and sclera have no pigment, they let a LOT more light in than your eyes or mine do.  The result is that feeling you get when you turn the bathroom light on first thing in the morning.  TOO MUCH LIGHT!  In a great primer book on albinism put out by NOAH (more on NOAH later) called "Raising a Child With Albinism", they describe it this way: 

"Imagine the brightness of a floodlight that's always on, or the sensation of coming out of a dark movie theater on a sunny day - that is what it's like for someone with albinism."

So, sunglasses.  LOTS of sunglasses.  A family with several children with albinism suggested just having a drawer full of sunglasses.  Inevitably, the little one is going to lose this pair, sit on that pair, get in a fight with a brother and break the other pair, and still will need some to go outside.  She will probably end up with prescription sunglasses when she is older, but we'll take that as it comes. 

One "bright spot" here (oh, punny...) - our living room is always dark.  Even when the sun is shining, it just doesn't have the kind of light that we'd like.  When we were anticipating being matched with a child with hearing loss, we thought that would be a project: getting better lighting in the front room.  Turns out it's just perfect!  I love good news.

WHAT KIND OF TREATMENT(S) WILL SHE NEED?

Because albinism is a visual condition, she will need to see eye doctors more frequently than the average bear.  She will need sun protection.  Other than that, time will tell.  Many people with albinism use special adaptive technologies to help their functional vision.  Many children with albinism use occupational therapy.  Some need braille or use it in conjunction with print.  

In short: We'll see.

SO, OTHERWISE SHE'S HEALTHY, RIGHT?

We believe so.  There is a rare condition called Hermansky-Pudlak Syndrome that causes lung, bowel and other problems.  According to her medical records, she does not have a history of bruising or bleeding, which are common first symptoms of HPS.  

If anyone has other questions, I may have just not thought of them yet.  Please ask and I'll try to find out the answers.  I would like to be as prepared as I can before my little Snow Angel gets here.

In closing, the best resource I have found for information about albinism is the NOAH website.  (National Organization for Albinism and Hypopigmentation).  They have forums, resource lists, and pages for people with albinism and people who just need to write a paper about albinism.  I found that amusing and helpful.

Protected by ADT - NOT by Common Sense

So, I had a brand-new experience today.  For the very first time, I set of a trespassing/burglar alarm.

My 4 year old has therapy on Friday afternoons in an office that is in a converted house.  Several independent therapists share the space.  The parking lot is in the driveway and the front door has a little blue-and-white sticker that says "Protected by ADT."  Until today, I never saw the sticker.

As usual, I pulled into the driveway, which was empty except for my SUV.  That's pretty normal.  We are often the only ones there, and the most traffic we've ever seen there at one time was 3 cars.  I lugged the 2 year old and the baby I watch, along with my purse and bag with my Maternal-Newborn Nursing textbook and laptop out of the car and in through the door, the 4 yr old eagerly leading the way.  The door is always unlocked.  For once, the boys didn't fling the door open, further deepening the doorknob dent in the entry wall.  Dmitri (the 4 yr old) was very proud of himself, and told me all about how he was going to show his "fehrpis" (therapist) his super-fast new shoes.

The office has lots of natural light, especially in the waiting/play area.  I took off the boys' coats and let them go play, then started settling in.  The usual Disney movie soundtrack was playing from the speakers.  I was vaguely aware of a beeping that had been repeating about every 3 seconds or so, but payed little attention to it.  Everything beeps nowadays!

It was about then that I noticed that a light in the further hallway near the therapist's office was off.  It was usually on.  Odd... maybe she's not here yet.  I'm almost catching on at this point...  Wait for it... Wait for it...  Oh wait!  She's in FLORIDA this week!  We don't even have an appointment.  How embarassing...  Boy, that lady in the office there must think we're nuts, showing up... when... Wait, no one is in that office.  Are we alone here?  

Just then, the beeping changed to every second, rather than every 3 seconds.  Things started to add up. (Slow, I know...)  Maybe we ought to leave sooner than later.  Yeah, good thought.  So I told the boys, "Guess what!  Lydia isn't here!  Mommy forgot!  So, we're going to go to the library instead.  How about that?"  My boy, who has sensory processing disorder and ADHD, doesn't take kindly to changes in his expectations.  It takes him a while to shift gears.  We, however, didn't have that kind of time.  I was putting their coats back on and trying to explain why Lydia wasn't coming to see him when the beeping changed into a full-on alarm.  The two boys were panicked.  I tried to be calm as I hurried them out of the door.

I decided, once we were outside and it was quieter, that it would be a good idea to be caught at the scene and explain the mix-up to the police than to be met with an arrest warrant in a month and have it fuss-up our adoption process.  So, I slowly, slowly, got the kids into the car, talking the boys calm again and explaining what was happening.  Dmitri was very upset that Lydia wouldn't see his shoes.  She would be the very last to see them.  We waited a few minutes, and no one was showing up, so I figured it was safe to leave and send our therapist an email, telling her about us showing up by accident and mentioning that a security alarm does little good when your doors are wide open.  Dmitri decided that he could get a book at the library about shoes.  We left.

My feelings of being embarrassed by this were short lived, because the more I thought about what had happened, the less the whole set-up made sense.  Why would the doors be unlocked when no one is there?  People's office doors were open.  Toys, computers, TVs, therapy equipment, files, all unprotected!  I can understand the internal openness IF there are external protections (ie- locked doors and security system), and I can almost accept leaving the front door open IF all internal office doors are locked, electronics are secured, and nothing of value is accessible.  No... even then.  LOCK THE DOORS, people!!!

My parents live in a high-end neighborhood that is regularly cased and break-ins are not uncommon.  Several years ago, they got an APX Security System (now Vivent).  It sounds like it operates much the same, with sensors on doors, a warning period for you to disarm the alarm system, then it does its thing.  BUT - as part of their service, Vivent requires - as I assume ADT would as well - that you lock the external doors when the alarm is engaged.

So now, I'm home, torn between hoping that the police just never paid any attention to the call and that I won't be trying to explain my later arrest to the Chinese Consulate and on the other side hoping that calls and alarms like that are not routinely ignored.  What would be the point, then?

In the mean time, my 4 yr old is still a little freaked out.  When our bread machine's dough cycle finished this evening and beeped, Dmitri came running from the other end of the house, yelling, "The beeping thinks that we're bad guys again!!!"  He doesn't like anything that beeps now.  And as I said before, EVERYTHING BEEPS THESE DAYS!  So I hope he'll be over it in a few days.

I sent off an email to Dmitri's therapist, who, in spite of being on vacation, answered my email in less than an hour.  From her response, it sounds like this was an unusual incident, that things are not normally left open, and I do hope so.  I really do hope so.

PROTECTED BY ADT - NOT BY COMMON SENSE

Don't you have enough kids already?

So, WHY, when we already have five healthy, home-baked children, with not even a breath of infertility, are we considering adoption?  As one friend so delicately put it: "Aren't you two, like, baby-making machines?"  Or as others have said, "Haven't you had enough already?"  Way to be to-the-point.  Most people just swallow their shock, surprise (or perhaps occasionally disgust) and say, "Well, bless your little heart!"  Aw, thanks.

But really, WHY?  We have everything we need, everything we wanted, we have our "hands full" as I hear on every grocery trip.  Why adoption?

Simply put: ...nevermind, it's not simple.  But it comes down to a couple key factors.

First: You could say that we planned this before we planned our wedding.  The details were not what they are now, but the idea was firmly planted 12 years ago.  (This isn't making me sound less crazy, is it?)  The bottom line is - we were told that we probably would never be able to have children.  I have endometriosis, which aside from being a royal pain during menstrual cycles, often prevents or complicates pregnancies, decreasing fertility in some and increasing risk of miscarriage in others - or both.  There was a very real possibility that we would face serious infertility issues.  Needless to say, the issue never came to fruition, but before we knew that, we had decided that if it came down to it, we were both very much in favor of the idea of adopting our children.  I guess it's an idea that couldn't be put to rest simply because it wasn't "necessary" for us to build our family.

Second: Everyone but me thinks that I have a hard time with pregnancy.  I think what it really is is that they have to deal.with.me. and THAT is difficult.  Morning sickness is no picnic, but I've never had it that bad for that long.  The crushing fatigue of the first couple months certainly takes its toll on the family.  If I wake up by 7am, we're lucky, but I'm ready for a nap by 8:15am.  NOT the best thing for a mom with little kids at home (or her poor husband who suddenly has to take on WAY more of the housework and wonder IF there will be dinner - and no, he's not allowed to cook and you'd know why if you let him.)  The biggest physical issues with pregnancy are my joints.  I must produce enough relaxin to supply a whole army of preggo mommies.  My pelvis loosened so much during my 3rd and 4th pregnancies that the symphasis (the part where the two halves of the pelvic structure meet and are supposed to be interlocked) actually separated!  I functionally was walking on a pelvic fracture.  NOT FUN!  Huge pain, and some days I couldn't move.  Thank God forever for Dr. John Davis at Atlas Chiropractic!  I saw him regularly during my 5th pregnancy and didn't have any hip or pelvic discomfort until about 35 weeks!  If I hadn't fallen down the stairs at 7 months, I could have just about called it a "pain-free pregnancy".  Alas, because this is an issue, several people close to me, including my mother and husband, feel that another pregnancy is just inviting mobility issues and the potential of permanent joint damage.  (My husband adds: "I think you are much more easily damaged during pregnancy than you are letting on here." Like I said, no matter what I think, HE's the one who has to deal with me.)

Third: it's traditional!  There are more adopted people in my family than home-baked people.  I am second-generation adopted, along with my two brothers and sister.  My mother and her sisters are adopted as well.  Any little person adopted into my family will be third generation, with plenty of support and understanding.  We make such a fascinating nature/nurture case study.

Fourth: we're ready for it.  We already have experience with children, including children with difficult conditions.  Because of this, we feel prepared to adopt a special-needs child.  What does this mean?  From China, "special needs" could mean anything from a strawberry birthmark (which is considered unlucky) to gastroschisis, a condition in which a large part of the digestive system hangs on the outside of the baby's body through the belly button.  40% of the special-needs children abandoned in China have cleft lip and palate.  This is surgically correctable and many prospective adoptive parents are fine with accepting a child with this condition.  We are open to several conditions, but specifically interested in a child with a hearing impairment (from mild hearing loss to complete deafness).  Only about 3% of the children needing adoptive families in China have hearing loss, but they are harder to place because unlike cleft palate or club foot or even a heart defect, hearing loss is not correctable by surgery; it is a lifelong condition.  For our family, though, it's not a huge deal.  We have many friends and associates who have some degree of hearing loss, from moderate to profound.  Every member of our family uses some sign language.  I myself have been serving as a volunteer interpreter for the deaf at our church for nearly 8 years.  I'm not awesome, but I'm functional.  Hearing loss is not a foreign or frightening thing for our family.


Finally, WHY NOT???  We are a loving family with the means to support ourselves, and we want to bring in and raise a child who is already out there who does NOT have the benefit of that kind of family.  I don't see a reason not to adopt.

Do we have enough kids?  Well yes, we could be (and are) very happy with who we have already been blessed with... but I don't know that you can ever really share your love and life "enough".

Letters to Mei-Mei July-September 2011

Monday, July 25, 2011
Dear Mei-Mei,

Yesterday, Daddy and I went to see the bishop and talk to him about you.  He asked us questions to make sure we'd thought about finances, emotional and spiritual health, and that we had prayed about our decision to adopt.  We had a wonderful discussion, and told him that we have been praying as a family and at the temple.  The Lord has told us to keep going forward - for only when we are moving can he guide our steps.  Our path has shifted greatly from where it started, but I am so glad that it is leading us to you.

Love, Muqin

PS - This evening, your big brother Erik was flipping through books about China, pointing to any young female and calling her "Mei-Mei", and pointing at Mao and saying "No! No!"  Way cute.



July 29, 2011
Dear Mei-Mei,
I talked to CCAI today.  [Chinese Children Adoption International]  We discussed the Chinese government requirements for adoption and they said we are eligible.  I am so happy I could fly!  We are coming for you soon, my sweet daughter.
Be safe until we meet.



August 31, 2011
Dear Mei-Mei,
Last night, Fuqin and I sent in our Family Information Sheet and Medical Conditions Checklist to CCAI.  We are now on the waiting list for you.  If averages hold in our case, we will be matched with you between March 2012 and September 2012.  We are still not beginning our home study until January so that we have time to save up some money for the first phase, but I can work on other things, like parts of the application.


*Note: I have to edit these somewhat because we are not permitted to discuss specifics about a child's profile in an online setting until we have accepted them and been approved to adopt them.*
September 1, 2011
Dear Mei-Mei,
Did I see you today? There is an angel on my computer screen.  The new waiting child profiles were posted and there is [wonderful, perfect little girl whose info I have removed from here...]  I called Fuqin, then called and asked great Grandma and Grandpa Spain for a loan to start the home study right away.  When I talked to Pam Rodriguez at CCAI, she put us on the interested list, but warned us that there are about 20 families ahead of us.  Wow.
It seems like such a long-shot that 20 families would look at a perfect baby's profile and not adopt her, but I have to hope.  I have to believe that if that baby is meant to be my little girl, it will happen.  If not, I wish her a wonderful family and I hope we will find another situation that is that good of a match for us.  I know that whatever happens will be right and that you will be my perfect-for-us baby girl!
I love you, Mei-Mei!  I hope we will see you soon.
Love, Muqin

Bringing Mei-Mei Home: Three Generations of Miracles

(This was my first post on our China adoption blog)

One reason this very, very fertile family is adopting is, simply stated:

TRADITION

To be short, my children are the ONLY blood-relatives I have in my entire family.

My maternal grandparents could not have children the traditional way (grandpa became sterile after having the mumps) so they adopted my mother and her two sisters in 1952, 1960 and 1964 respectively.  Grandma and Grandpa were quite unusual and forward-thinking for 50s parents of adopted children: they actually TOLD their daughters that they were adopted!  My grandparents took a lot of flak for that.  Back in those days, adoption was not nearly as well-accepted as it is today - it was nearly a scandal to admit that a child was not your flesh-and-blood - and most adopted children found out the "family secret" by accident or on their parents' deathbeds.  My mother, on the other hand, always knew where she came from and that her family was her family no matter how she came to be in it. 

20 years later...  My parents married in 1974 assuming, as most people do, that they would not have any barriers to childbearing.  They came to find out, though, that Mom had reproductive problems serious enough to prevent any chance of becoming pregnant.  Today, she probably would have been diagnosed with PCOS and a couple other things, and may have been able to overcome those and bear children herself with the help of a few modern medical miracles.  However, medicine being what it was in the 70s and 80s, these advances had yet to come to pass, so my parents could not have children the home-made way either.

Not to be deterred from their dream of having four children, they adopted me through LDS Social Services (now LDS Family Services) as a 13-day old infant in 1980.  My adoption was contested by my birth father and after a court battle it was finalized in 1981 when I was more than a year old.  Two years later, I became a big sister when we adopted my first brother - also an infant - through LDS Social Services.  I had the privilege of being the first person to enter the conference room with the little crib where my new baby brother was waiting for us to meet him.  He was the most beautiful, fat little thing I’d ever seen, and he was ALL MINE!  My parents had special baby books for my brother and I that were designed for LDS adopted children.  Instead of having pages for “labor and delivery” or “coming home from the hospital”, there were pages for “my first home”, “at the agency” and “my day at court”, as well as several pages for writing about the adoption process. 

I enjoyed being adopted.  Not that I had anything to compare it to, but it was something special about me, something different about my family.  To me, it was an important part of my identity. It was also fun.  I could claim not to be related to my brother when he did something embarrassing.  We joked with my Daddy, telling him that we were all “chosen”, but his parents had to take him!  Dad, as the only home-baked person in the family, was the “different one”.  At school, I had mixed experiences.  Other children were curious about my being adopted.  They would ask me things like, “How did you find out?”, “Were you in an orphanage?” and “Do you know who your real parents are?”  Nothing riled me like that last question.  Of course I knew my real parents!  They were raising me!  It doesn’t get more real than sitting up with a sick, puking child, driving hours every week for piano, softball and karate, as well as teaching, disciplining, sacrificing in every way that a parent does!  I was quite defensive of my family, and militant about people using “correct” terminology when discussing my origins.  “Birth mother” and “biological mother” were allowable terms for the woman who bore me, “real mom” was fiercely forbidden. 

Now, I don’t want anyone to think that I had ill feelings for my birth mother.  Quite the contrary, my parents taught me from the earliest age that the irrefutable evidence of my birth mother’s love for me was the fact that allowed me to have a family with a father and mother, happily married to each other, by placing me for adoption.  My mother told me,

“The greatest act of love ever performed for you outside of the Atonement of Jesus Christ was your birth mother placing you for adoption.”

I believed that.  I still do, and my experiences and acquaintances since then have been further evidence to me that what my mother told me is true.  My birth mother is my angel; a guiding star and inspiration.  My mother, however, is my pillar; my sunlight, and my hand to hold. 

For a long time, it was just the two of us children and our parents; a cute, little Father-Mother-Sister-Brother family just like the Berenstein Bears.  Can’t ask for more than that, right?  Well, Mom and Dad had always wanted a somewhat larger family than that.  It just wasn’t panning out.  While we still lived in Oregon, there was a brief time when they thought another adoption would come to be, but that situation fell through.  We moved to New Jersey, then Pennsylvania, and got a very harsh response to inquiries in those states.  It was not to be.

We lived 12 years in the east, and it appeared that we would always be “just the four of us”.  Then, when I was 15 we moved to Colorado.  My mother became friends with a wonderful lady, Kathleen, who had adopted a daughter.  She and her husband already had 3 home-baked sons and since that time they have adopted three more children.  That friendship led to an acquaintance with local foster families, one of which happened to be fostering a 4-year old boy who became my brother.  The first time he came to our home for a day visit, we all knew that he was meant to be with us.  He was adopted through Adams County, Colorado when he was 5 and I was 16.  Going from the 14-year old being the “baby of the family” to a kindergartener was quite a transition, especially since this particular kindergartener was not yet potty trained, had the language of an 18-month old, and even lower processing skills.  His sweet disposition won us all over, and we determined to help him achieve whatever he was capable of. 

My parents still wanted to bring one more child into the family, so they set about again to adopt someone close to my little brother’s age.  Working with Adams County for my brother’s adoption had been beastly, so my parents sought out different options for the last go-round and finally found my sister through Denver County when I was 18 and a senior in High School.  She was a tiny little 4-year old Hispanic girl with bright, warm brown eyes and an enormous smile.  It was love at first sight.  Something amazing happened the first time she spent the night at our home.  After tucking the little ones into their beds, my mother came into my room.  We both had felt the same thing: the family was now complete.  A hole had been there, imperceptible until it was filled.  My sister did not have the mental challenges that my little brother did, but she had plenty of her own struggles to overcome because of her turbulent past.

While her adoption was in process, I graduated from High School (class of 1999) and met a wonderful young man that summer.  We decided (very quickly) to get married.  Prior to our wedding in December 1999 I was told by my doctor that because of my endometriosis, I was unlikely to ever have children, or at the least would have great difficulty maintaining a pregnancy.  Well, I told myself, that’s just how things work in this family.  Women in my family don’t have babies!  I resigned myself to that fate and had a lengthy discussion with my fiancé, making sure that he was really alright with the concept and reality of adoption.  I figured that was the only way we were going to have a family of our own.  After a lot of pondering, he agreed, although I don’t think he fully “got it” yet.  He hadn’t seen the miracle of our family in action yet.  That’s where God’s timing proved so perfect. 

In December, my sister’s adoption was finalized.  My beloved came with the family to court and got to witness first-hand how my family legally comes to be.  Then, just one week before our wedding, we sat together in the Denver LDS Temple as my sister was sealed to my parents and given beautiful blessings and promises just as if she had been born to them.  He felt the power of the bond that an adopted family can have.  It is something not taken for granted, because one isn’t just “born with it”, it has to be forged, actively cultivated, proven and ratified before God and the law.  He decided then that adoption was part of our future, his future, as a member of this family.  One week later, on December 17, 1999, we were married and sealed in that same room in the temple, beginning our own journey as a family unit. 

Well, fast-forward 11 years…  All of my doctor’s predictions about difficulty in childbirth have come to naught.  We have (with no difficulty) baked-and-birthed five beautiful, healthy, brilliant little people.

One thing is lacking: 

We want to pass on this legacy of adoption to the third generation.