Annabel Leigh

On November 21, 2016 we welcomed our second baby girl Annabel Leigh, nine days early 7.4lbs 20 inches long, into our family. She is an absolute dream of a newborn who nurses, sleeps, and is so patient, as we care for her older sister Scotlyn. There were many times during my pregnancy when I wondered if Annabel, like Scotlyn, would have Albinism. I tried to tell myself that I didn't care and it didn't matter. Well, it doesn't matter, but there were a few moments during my caesarean when my husband could see our sweet girl, and I still could not, that I anxiously needed to know what she looked like, did she have that tell tale snow white hair. At first, covered in birth, my husband thought her hair had a darker sandy appearance and there was a moment of what felt like relief. It would mean no eye surgeries, no dashing to the car to get out of the sun, worrying the bright lights were hurting her eyes, or diligently applying SPF 100 multiple times a day throughout the year. It would mean no questions about nystagmus, no strabismus, or other vision concerns, no social implications. Then there was the moment and any parent knows the one I mean. The first time you lay your eyes on the baby you grew for 9 months and it is the true definition of love at first sight. Her hair wasn't just white it quite literally looked like it had sparkles. Her eyes, a dark blue, were kept mostly closed sleeping like she just floated down from heaven into my arms. I knew then that she did have Albinism and it wasn't just okay; it was perfect. She was exactly the baby that we were meant to have brought into our lives so beautiful and sound that it created a fear in my heart that she was too perfect for this world.

After losing my older sister in 2008, I dreamed of the day I would have two little girls, close in age as we were, to watch grow together. Scotlyn adores Annabel and even when she refuses to give Kyle, or I kisses she always has a kiss for Anna. She insists on kissing her every night before bed and at times kisses her so feverishly I wonder if our little Bell can even breathe. I always catch myself saying, "I can't wait until.." they can play, and run, and laugh, but I am making a conscious effort to try and slow down and take in these precious newborn moments with our girls before we have any of the real stresses to deal with that I am sure all parents cope with, not just parents of kids with "disabilities". I already know Scotlyn will succeed at whatever she sets her mind to. At not even two, I know her low vision will not stop her and she amazes us with her intelligence every day. My hope now is that Annabel will also amaze me with the things she learns and sees and I am sure she will.

Annabel is now just over two months old she's already rolling from back to tummy and weighs 12.7lbs and is 22.5 inches long. She's growing so fast & continues to amaze us with her sweet gentle spirit.

Expectations

I try to not have too many expectations. With no expectations my mind and heart can't fail me, or let me down.

When Scottie's long awaited ophthalmologist appointment was approaching, the one we waited six months for, I let my guard down. I made a mental list of my hopes and hopes-nots. I told myself she could see well, she probably didn't need glasses yet, and maybe we would have to patch her eyes to help the alignment, but not surgery. I said it to my husband, to my friends, to myself. I didn't want her to have surgery so young. I set myself up.

It's a good thing we trust her Doctor because he said everything my heart feared. Scotlyn, at nine months old, is very, very near sighted. "Very bad, for a baby one even one", the doctor said. She got a prescription for glasses that very day, about -6 in each eye one a little different than the other, but almost the same and surgery "right away, in the next six months" for alignment. The good thing is that her eyes are almost the same strength, so when one focuses the other turns in, but they both do it, which I guess is good.

Glasses. "Finding frames would be the hard part", the doctor said and they were. We wanted Miraflex frames because they bend and are lightweight with no screws, or anything to minimize breakage. I called around until I found a place that carried them and went in very prepared knowing the exact which two frames were for her age group for her to try on and simply put, it was a nightmare.

The first person we dealt with was a ding bat, not listening to our needs, and trying to get my screaming terrified baby to try on every  damn frame they had. Eventually another woman took over who ended up being amazing and brought in two frames in the color we picked and it was very obvious which frame suited Scottie the best. Then, they tried to take measurements and couldn't because she would not stay still and because of her nystagmus.

The glasses took about two weeks to come in and we got the videotape ready only to have Scotlyn pull them off and cry. Then after her nap we tried again and it has been really quite amazing ever since. She will pull them off when she gets tired, but most of the time she leaves them on and she even tries to put them on herself. I think that the glasses do help slow her nystagmus and we have noticed small changes in her vision like not bending down as close to her tray to find her food. We also got grey transition lenses put in and that by far is the best feature. My little moon baby who used to bury her face in me every time we went outside now laughs outdoors and loves walks and playing in the yard. It. is. AMAZING.

We go back in three weeks to report on the glasses and schedule the surgery. I am sure it will be harder on us than her and I sure hope so.

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.

Albinism: Our Journey Begins

Many of our friends and family do not know that our daughter Scotlyn has a rare genetic condition called Albinism. Most people will be more familiar with the term Albino and no, her eyes are not red.

When Scotlyn was born everyone remarked on her white hair, but with my husband and I both being so fair we didn't expect to have a brunette baby and didn't think much of it. What did concern me was her eyes because she kept them closed much of the time. No one, including the doctors, were concerned, so I let it go and we went home.

As weeks went by and Scotlyn got a bit older I noticed more concerns with her eyes including something called nystagmus where her eyes shift in a pendulum motion. The first google search told me what this was, but I dismissed it thinking it couldn't be this "nystagmus" and convinced myself she was still developing.

As weeks passed my suspicions that something still wasn't quite right grew and even though our family doctor didn't have any concerns, I booked an eye appointment for her and everything I had feared was confirmed. Scotlyn was unofficially diagnosed with Ocular Albinism causing nystagmus. Other words brought up from that appointment that hurled into my brain faster than I could digest were possible blindness, MRI, brain tumors, null point, never drive a car.

It was devastating. I had to adjust my expectations of the life I had dreamed for our baby girl. Now all I could think of was all the things she might not be able to do. It took a lonely, long, couple of weeks and even months to start to see the good. That she will do other things, things I hadn't imagined, and would begin to teach me more about life & love than I ever imagined.

After the initial eye appointment, we waited six weeks to see a Pediatric Ophthalmologist who brought us a little bit of peace. At first it was hard to not assume the worst, to google way too much information, and to become overwhelmed. We left this appointment with a  new calm. The Ophthalmologist was not going to do an MRI, he was not concerned with tumors, or blindness. He told us she was only three months old, not to worry, and that he suspected that Scotlyn has Oculocutaneous Albinism; a lack of melanin causing little to no pigment in the hair, skin, and eyes. The Ophthalmologist stressed the importance of sunglasses and told us to come back when she was 9 months old which will be this February,

What I did not know that I know now is that all people with Albinism have vision problems. First, the light is very bright for them, so being in normal to bright lights is very uncomfortable. Their eyesight also lacks detail and the movement of the eyes makes it difficult to process visual information.

We saw a Pediatrician who checked her over and put in a referral for genetic testing, so again we waited. The genetic appointment came and went without offering much as far as new information other than the advice to be diligent with hats, sunscreen, and sunglasses. They said they did not see a need to confirm the diagnosis with expensive testing because of the reports from all the other doctors. This left me a little disappointed because there are two forms of Albinism that have more serious implications and can be fatal and I wanted to rule those out 100% and get them out of my mind, but this didn't happen. I have recently contacted the genetics team again and had to strongly advocate for testing, so I will see what happens soon and write more on that topic later.

Scotlyn is now five months old and is the sweetest, silliest little baby. I do have harder days sometimes when the fifth person on the street comments on how fair she is, or how white her hair is. Sometimes I just want her to be seen for the "normal" baby that she is and not be seen as different. I worry about bullying when she gets older. I worry about what having poor eyesight will mean, but more than all of these things I am so grateful for her and to be her mom.

I came across this interview with another Canadian mom about her daughter with Albinism, who just published the book Beyond The Pale, and it brought tears to my eyes because everything she says I have thought or felt, it literally could be me talking in this interview. She articulates everything so well, please have a listen to learn more: http://thumbnails.cbc.ca/maven_legacy/thumbnails/14/737/nlonthego_20130320_18351_uploaded.mp3