Awareness

For the nine months I was pregnant I went to every doctors appointment and ultrasound anxiously awaiting to hear those three precious words, "everything looks fine."

I ate right, avoided anything that might not be good for the growing baby, and felt guilty when I wasn't exercising.

We sat in the ultrasound room at 20 weeks waiting to find out the gender of our baby, but more importantly that each organ, her precious beating heart, her growing brain were all working good and they were. We no longer had to fear heart troubles, or other fatal conditions. We were all set.

So when we learned about Scotlyn's diagnosis of Albinism at around three months old we were dumbfounded. How did this happen? What did this mean? Neither of us, or any of our family members had ever known someone with Albinism. 

We grow up hearing about autism, ADHD, we might know someone who knows someone who is deaf, or whose parent has a mental illness, but Albinism? Not in our family and not in the schools we went to, or the towns we grew up in. So, I get it. I didn't know either, but now I do and I want you to know too.

I recently received this message from a lady that stirred up a lot of thought conflict in my head:

"So many people have never seen an Albino up close and personal. It is human nature to stare or even be a bit rude. Not that it was necessarily intentional. I've known casually a few "mostly" albino people. Beautiful people. And I asked my questions as a teen. Asking helped me understand and I totally get it now. Beautiful photo, too! I'd love to see how beautiful she is now. Oh! there's an old movie titled "Powder" that involves an albino boy. It's a sci-fi leaning movie but many of the reactions to the boy are true to life."

Although the message was intended to be kind it showed how much is unknown about this condition. You wouldn't call someone with  cystic fibrosis, "The Cystic" or someone with downs syndrome "The Downs", so why would you call a person with Albinism "an Albino". Sure, you might refer to someone with diabetes as a diabetic, but that condition doesn't ostracize people. It doesn't cause endless comments on appearance and it doesn't carry with it an entourage of subhuman or supernatural beliefs. Furthermore, Albinism is a genetic condition, you either have it, or you don't. There is no such thing as "mostly" albino people. 

One of the problems with movies like Powder, or the Da Vinci Code is that they portray people with albinism as villains, or with super powers which only ostracizes them further. The belief that people with Albinism have superpowers fuels problems, in places like Africa, where people are being murdered for body parts because of a belief that people with Albinism hold some sort of magic.These are people. People that could be your neighbor, your friend, or your child who are being slaughtered with machetes over a belief that a genetic condition can cure ailments or disease. People with Albinism are just like you and I, except with less coloring and maybe worse vision. Awareness has to be the goal in order to debunk these portrayals in Hollywood movies and around the world so these people can grow up to feel beautiful and normal and not fear social stigmas and stereotypes or worse, fear for their lives.

So, I ask you. Be aware of your language, of your intentions, and of the global bigger picture because the only magic she has is the ability to light up a room.

Oh The Comments

When Scotlyn was born she had high levels of jaundice, so they sent us home with the instruction to place her either in the sun, or in front of windows in the sun. Now, five months later and a diagnosis of Albinism under our belts, a condition that causes the skin to not produce any melanin, we have strict instruction to keep her out of the sun. In fact, she has a whole wardrobe quickly filling up with full-body UV swim suits, hats, sunglasses, and soon a daily dose of head-to-toe sunscreen. I imagine we will get so good at spooning out tablespoons of Banana Boat, and lathering it between each finger and in the crooks of her ears, that it will become as ritual as brushing our teeth.

So, when a lady at the drug store tells me that my baby, is the whitest baby she has ever seen, but will probably be the first teenager out suntanning, I just smile. It doesn't end there of course. She continues on about teenagers and tanning and as I walk away she turns to her friend to share whispers and stares at my fair haired baby. This scenario happens almost every time I am out with Scotlyn, but it's a different store and a different woman. Their comments make me uncomfortable because they bring with them a fear that my daughter will have to grow up hearing how white her skin is and her hair is over and over again. I try not to let my mind play out these situations which may or may never happen, but today I can't help it. Maybe she's on the playground and the little boy wants to know why on the hottest day of the summer she's wearing a long sleeved shirt and sneakers instead of sandals, or maybe she's sixteen and the girl in her class wants to know what she does to get her hair that white. Today she is less than a year and I just want to buy my vitamins and go home. Scotlyn might grow up to have low vision and not always be able to perfectly see you, as is the case with most people with Albinism, but she will always hear you, so I'd like to tell this lady, the little boy at the playground, and girls in her class, to please choose their comments carefully.

What I wished I had known that day is that the next time I would return to that same store, with a pocket full of dread, is that I would indeed be met with more comments. However, this time as I was leaving the store it was the unmistakable tone of an older gentlemen shouting my way, "Hey Miss". When I turn, I recognize him from the card isle where I gave up trying to find the perfect card, trying to balance a basket full of baby items in one hand, and Scotlyn in the other. I had to stop and put everything down, so that I could hold Scotlyn by both arms and let her bounce, her new favorite past time. He continues talking as I strap Scottie into her car seat, half ignoring him, trying to get her out of the sun, "It's so nice to see the love you have for your daughter. I can tell your a good mom, so good job, they don't stay that age for long and I miss mine." The comment took me off guard because it wasn't, of course, what I was expecting to hear and at that moment I realized [it] had happened. The one thing I hear over and over again from parents with children with Albinism. That on this day we were normal, just like any other mother and daughter out buying diaper cream, and leaving without remarks of whiteness, but instead a lasting impression of love.

This post was featured on The Mighty, a website dedicated to spreading love and awareness. Check out the shortened edited article here.

Handpicked

Albinism, in Canada, affects about 1 in every 20,000-40,000 people.

The news of this statistic has impacted me in a lot of ways. It means that Scotlyn will most likely be the only person she knows in her schools growing up with this condition. It is what will make her not only visibly different, but her low vision will mean she will be unable to read social cues, witness stares, and possibly be subject to social exclusion, in the form of turned backs, which I have learned is a form of new bullying.

When we learned that with each pregnancy there is a 1 in 4 chance of each child having the same condition the first thing I planned to do was find out what we could do to avoid this. We learned that there are two options, amniocentesis after conception with a plan to terminate the pregnancy if the baby was affected and a costly 20,000 dollar option, in which they remove and test the eggs before implanting them IVF style, to ensure the baby doesn't have or carry the condition. Albinism is a recessive condition meaning each parent must carry the gene and the child gets one gene from each parent to be affected. Immediately, we dismissed the idea of terminating a pregnancy, as they call it. We told our family that we would, of course, be blessed to have another baby as sweet as Scotlyn. IVF, if affordable, seemed a promising and interesting thought. And then I had another thought, and if I'm being honest, it was more of an after thought after speaking to and reading about other families with children with Albinism and it was this:

By choosing to not have another baby like Scotlyn, what message does that send to her? Sure, the next baby, if they have Albinism, will too live a life a little harder than some, but what if the next baby also has Albinism and Scotlyn has a sibling to share her experiences with, so that she's not the only child in her school with glistening white hair and a seeing cane. Not to mention, Albinism is a visible condition and with that there are social implications, but what the child on the play ground who might tease or taunt Scotlyn won't realize is that they too someday might be met with a hidden genetic condition just as life altering like heart disease, or diabetes. That they, like Scotlyn, or any of us, aren't the perfection of health and will too be faced with difficulties in their own journey through this life.

Scotlyn might be the only kid in school with porcelain skin and hair the color of a honey snowcone, or she might not, and I think we will leave that up to DNA & a high power to decide because who I am to handpick a baby when Scotlyn was so perfectly handpicked just for us.

HPS & Self Advocacy

When we first learned that our baby girl had Albinism, Google, of course, was the first place I turned for answers, support, or anything else to normalize and navigate what otherwise felt like very uncharted territory. So, when one of the things that popped up was HPS: Hermansky Pudlak Syndrome my heart and my mind started racing.

Hermansky Pudlak Syndrome is a disorder characterized by Oculoctaneous Albinism and can cause problems with blood clotting which leads to easy bruising, as well as prolonged bleeding and can cause people to develop lung disease which causes scar tissue to form in the lungs and once this happens it can be fatal.

You know where I am going with this.

I needed to know that Scotlyn did not, unknowingly, have this and those answers would lie in genetic testing. A referral to genetics was put in, I did a phone interview outlining our family histories, and was told the wait would be over six months. So, imagine my surprise when less than two months later they called saying they had a cancellation and that we could come in the next day.

We were there.

After the usual reflex tests, eye exam, and explanation of the genetic process of how this condition came to be and what it means for our next pregnancies we were told that they were not going to do genetic testing on Scotlyn because based on the diagnosis from what doctors could see that there wasn't a need to confirm it with "expensive" testing.

I brought up HPS, which they were familiar with, and we were told that symptoms of this present early, that she appears healthy, and not to be concerned. I left feeling disheartened, but like most people decided I had to trust the doctors.

After coming forward with my initial post I was contacted by other parents, some within Canada, who said she should absolutely be tested and there is no way to know if she has HPS just by looking at her, so I did some research and they were right.

This is when I learned my first true hard lesson on Self Advocacy. I called the genetics nurse, who has been our liaison, who proceeded to tell me that HPS and Oculoctaneous Albinism are not related and there was no reason to test. I tried to correct her and explain that they are indeed connected and explain the importance of testing, but she wouldn't budge. I could hear it in her tone, I was that over bearing parent. After we hung up with a promise she would email the doctor and see what she says, but that they probably wouldn't get funding for the tests because they weren't necessary, I sent her a strongly worded email with resources proving my claim. Within minutes, I had an email back saying that she was wrong and that she was sorry and had emailed the doctor. This felt like a small victory. Someone heard me. 

We are now waiting to hear back from the genetics doctor in Red Deer, Alberta to see what she is willing to do for us, but in the mean time I have connected with a member of NOAH (National Organization for Albinism and Hypopigmentation) who has told me that is possible for testing by doing a simple blood test and she will help me get it done. We have also been invited to a BBQ for the families in Alberta living with Albinism which I am so excited to connect with everyone and learn from them!

The stars are all aligning.