Discrimination Faced by People with Albinism

In a few of the emails we’ve gotten from Kofi, our representative in Ghana for our adoption, he has noted when describing Samuel that ‘he is an albino and finds himself dejected by society’. And, another time he wrote in a different email ‘Samuel being an albino, is dejected both at home and outside, hardly to find friends. Africans have a culture or custom about these types of kids in the society’. I’ve been trying to figure out why? Why would they 'deject' him because of this? I mean, I can obviously come up with a few lame reasons in my own common sense, but nothing concrete. Then the other day I came across the following fantastic article that really shed a lot of light into my question of why. The answers are very sad, but at least I now understand it a little more. Here is a short excerpt from the article:

Discrimination faced by people with albinism
http://www.copperwiki.org/index.php/Albino

People with albinism often experience social difficulties. As children they may be stared and pointed at and even teased and bullied, mostly due to ignorance. Since most people with albinism look vastly different from their families their sense of isolation is heightened.

They are also the subject of sympathetic looks and are treated as if they have severe disability or are ‘dying of a horrible disease’ rather than a genetic condition that does not affect their minds.

The color of skin has been a sensitive topic in all cultures throughout the ages. The issue is more heightened in people with albinism of African descent as they bear no resemblance to their race and their skin and hair resemble Caucasians. In many African societies, albino children were killed or abandoned at birth, or were denied breast milk and subjected to harsh conditions. They were even offered as ritual sacrifices. Albinos were thought of as cursed, a sign that punishment would befall the family. In Jamaica too, albinos are considered cursed and are therefore degraded.

Albino children were often regarded as illegitimate children, and their mothers suspected of infidelity with white men. Due to this discrimination, many albinos remain uneducated or drop out of school and end up in poverty.

There are also many myths and superstitions surrounding albinos that exist to this day, especially in Africa. In Zimbabwe, it is believed that having sex with a woman with albinism will cure a man of HIV. This caused a number of rapes in the area. In Chad, albinos are eliminated through secret practices by some ethnic groups as an albino birth is considered ‘false’, i.e, an albino is not a real person. They are also supposed to be associated with witchcraft and people avoid them in order to avoid bad spells.

In Tanzania, there has been growing media attention to albino killings. According to a myth, albino organs possess mystical powers. This is fuelling a demand for albino organs, particularly genitals, limbs, breasts, fingers and the tongue. To counter this problem, awareness days such as the National Albino Day have been created to dispel the myths and superstitions that surround this condition.

There was actually a story in the Des Moines Register last week about this last paragraph. It highlighted a woman with albinism in Tanzania who is literally fearing for her life because of this false myth that albino limbs/parts are magical. Here is the link to that article if you want to read it:

http://www.washingtonexaminer.com/world/10000-east-african-albinos-displaced-in-hiding-after-rash-of-killings-report-says-77362402.html

The lack of melanin involved with albinism can occur at varying degrees. Samuel’s skin is dark brown, his eyes look brown from the picture, and his hair orange-ish. However, some Africans with albinism can have it to such a degree that their skin is milky white, their hair white, and their eyes blue. It’s been quite interesting to learn about this condition. It has given me another way that I can be praying for Samuel, and his emotional comfort as he goes through the rejection and trials from having this condition.

My Encouragement

I found the following posted on the blog of a family who recently adopted a little girl who is HIV+. I’ve printed this out and have read it over and over whenever I need to. It keeps my perspective in the right place.

Jesus Calling:
Expect to encounter adversity in your life, remembering that you live in a deeply fallen world. Stop trying to find a way that circumvents difficulties. The main problem with an easy life is that it masks your need for Me. When you became a Christian, I infused My very Life into you, empowering you to live on a supernatural plane by depending on Me. Anticipate coming face to face with impossibilities: situations totally beyond your ability to handle. This awareness of your inadequacy is not something that you should try to evade. It is precisely where I want you-the best place to encounter Me in My Glory and Power. When you see armies of problems marching toward you, cry out to Me! Allow Me to fight for you. Watch Me working on your behalf, as you rest in the shadow of My Almighty Presence.

Adoption Update

Samuel had his full-out medical about a week and a half ago, with complete blood work. Last Monday we received an email that his bloodwork showed up positive for sickle cell anemia (another genetic disorder). This was pretty shocking, but I am at the point now where nothing surprises me (really) in Ghana adoption. Jake and I had not considered accepting a child with special needs up to that point (and having sickle cell would put him into that category). Right after I got the email I started looking up sickle cell anemia and quickly found that it is a life threatening disease, with many complications, especially when untreated. I started reading through all the ailments and things that sickle cell patients go through, and my knees went weak and I just couldn’t look at it all anymore. So, I just began to pray…God, would you still have us adopt him? How will we do this? Is Samuel still the one, or is this our cue that he is not the one for our family? I think I literally prayed about every 5 minutes that day because it was about every 5 minutes that I started feeling overwhelmed and just wanted to cry.

As I was at home, Jake was at the office also looking up sickle cell anemia. He called me mid-afternoon with an interesting thing that he found. He said that with severely malnourished children, a test for sickle cell can actually be a false positive. Because of the trauma malnourished children already have on their red blood cells, they can look similar when tested to sickle cell. But with a nutritional & proper diet the anemia could be corrected if it was not sickle cell to begin with. You following me so far? I started thinking about this, but then came to the conclusion that we are not doctors, and that Google is probably not the most professionally sound resource for medical advice. :) But, nonetheless, Jake continued to think positively about this piece of information that he found. I went to bed with a lot on my mind.

The next morning I got up and checked my email after awhile. And, I saw an update from Kofi (our representative in Ghana for the adoption) regarding Samuel. To be to the point, Kofi said that he was absolutely shocked that Samuel’s bloodwork showed positive for sickle cell because he said he has shown no signs or symptoms of the disease. This was very key to hear, because there are a lot of bad side effects of sickle cell. Among many other things, one of the main side effects is that afflicted persons would have what they call random ‘painful crises’ in which all of a sudden the body is in severe pain, and the afflicted person must be hospitalized for pain management. Samuel has never had anything like this (per Kofi), and has not shown any of the other signs/symptoms (and there are a lot!). Jake had even found on one report that a child untreated for sickle cell would normally not make it past the age of 5. Sickle cell disease is a genetic disorder that is present from birth, and it is unfathomable to me that if Samuel has it that it hasn’t shown up in the form of symptoms at all. In fact, Kofi went on to say that Samuel has always been ‘fit’, plays with the other children, etc. and hasn’t had any health issues. Kofi did mention, however, that Samuel is very malnourished. He said that Samuel’s mother is very poor and can only get them about 1 meal a day (and I am sure a meal size there is not what we think of here). Kofi ended by saying that he believes the positive test was caused by malnutrition alone, and that with proper diet, it can be corrected and is not sickle cell. This lined up with what Jake had found out about the false positive test. Kofi then said he would talk with the physician who did the medical to discuss it further.

So, we sat on all that for about a week, and then on Monday we heard from Kofi again. He said that the recommendation is for Samuel to eat more fruits and some local blood tonic and that the positive test was nutritional related. It still didn’t seem clear to me why they would diagnose him with a death sentence of sickle cell, if it was actually only anemia from malnutrition. But, we also know that the medical expertise in Ghana is not exactly as advanced as it is here in the U.S. I am just wondering if they are quick to diagnose this sort of thing as sickle cell since it is a common disease in Africa (it affects 1/3 of Africans). Or maybe they really can't tell the difference between cells with sickle cell, and those with anemia alone? Who knows? In the end, Jake and I ended up coming to the conclusion that all of these things mentioned above are pointing to it being a false positive test. Of course we can’t be completely sure, but we are at peace with the decision to continue to pursue the adoption of Samuel. And, if he does end up having the disease, and God continues to lead us to adopt him, then so be it.

One thing that I can tell you is that I have a great peace about all of this. Because I am not trusting in the opinion of the Ghana doctors, I am not trusting in Kofi’s comments, and I am not trusting in the decision making of Jake and myself. I am trusting 100% in God. If Samuel is the one that He has picked out for us to adopt, then it will be. And, if Samuel is not the one, then I know God will lead us out of Samuel’s direction. That’s all I know.

Proverbs 3:5-7
Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.

Lotsa Pictures

Where's Jayla?

Here I am!

Grandma made me some homemade baby legs! You like?

Yaw was quite the hit at Thanksgiving! JJ and Jayla made up for lost time and played with Yaw all morning. Yaw's been really busy with school and basketball, so JJ and Jayla haven't gotten to see him much lately.

Playing catch.

Jayla loves to poke, hit, and inspect Yaw's face.

Snugglin with Yaw before nap time. We all joke that Jayla is in love with Yaw. She can say his name now and will ask me a million times a day 'where's Yaw?'

Doing some yoga...or something like that.

Everybody shows Uncle Eli some wrestling moves.

Jayla gets some smooches from Uncle Eli and Grandma.

JJ and Grandma play UNO. As JJ puts it - "Somebody wins, and somebody loses."

It isn't a family gathering without some Wii bowling!

After Thanksgiving it was off to Kansas City for a tournament. First order of business at the hotel is always to jump on the bed!

I really need a camera that takes action photos! Sorry for the blurries!

Doesn't it look like fun?!

And here is a video....don't worry it's not another dribbling video! :) It's a shooting one this time!

It's Beginning to Look a lot Like Christmas

You may have caught in my post last week that we actually put up our Christmas decor the day before Thanksgiving. I am sure this is a no-no in many households. :) But, since we head out to a tournament to Kansas City the day after Thanksgiving, I just have to come home to Christmas instead of thinking all weekend about how I would rather be home putting up the tree! I tried to capture every moment last Wednesday when the day of anticipation finally arrived!

Getting mentally prepared for a day of decorating!

Last year while strolling through Walmart I came across some super cute mini trees that were pink and blue. They were absolutely irresistible! The thought crossed my mind that we could start a tradition of JJ and Jayla each having their own tree in their room to decorate each year. And, so, last year we started the tradition and added to it that each year they could pick out an ornament for their tree. Here is JJ hanging up the ornament he picked out earlier this month on his blue tree:

And here is a close-up of the ornament he picked out - a fireman dog!

You may remember that JJ also was a fireman for Halloween….so apparently he really likes firemen this year.

And, here is Jayla contemplating hanging her ornament on the tree:

And, then, the alligator tears when she realized that she didn’t want to hang up her ornament, but she wanted to hold it instead (the tears are a little hard to see here, but trust me they were there!)

JJ and I tried coaxing her that it would be fun to hang the ornament, but she had her own agenda, so we had to hang it up for her later once she forgot about it and left it on the floor. :) Here is a close-up of her ornament, which JJ picked out for her this year:

A doggy diva! Quite fitting don’t ya think?

Of course, you’ve also got to sample the decorations to make sure they are up to par!

And here is JJ’s finished product (notice JJ’s socks in this year’s picture):

And Jayla’s tree (last year and this year):

After all of that excitement I then announced it was time to put up the big tree in the living room, and suddenly my helpers ditched me for an Elmo movie!

Then, I corralled Daddy to help me for awhile….that was until JJ and Jayla discovered their Christmas books that I had stored away last year. And, then all of my helpers ditched me for an Elmo Christmas book!

Don’t worry, I still got ‘er done!

And, my two favorite JJ quotes from the day:

(pointing at the fireplace) - “Mommy, why did you hang those boots up there?”

(and, once the big tree was up in the living room) – “Mommy, that is the BIGGEST BIGGEST tree I have ever seen!” (and his voice got louder and louder as he said it)

Happy decorating everyone! :)