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.

The Right Fit: Finding a Dayhome

I had so many mixed emotions when my year at home with Scottie was coming to an end. I looked forward to clothes not covered in yogurt and a steady paycheck again, but I knew I would struggle to adapt to a full day without my baby. In her first year of life, I had not only never left her overnight, but I had never not been there to put her to bed. At most, I snuck away for a couple of hours on Saturday morning for yoga and a tea with a girl friend feeling guilty and rushing back to relieve my husband. I felt that because I nursed she couldn't survive without me even though she was well into eating solids and taking a sippy cup. It was a co-dependence we created together with a cockily newborn who would only stop crying when she was nursed, my imagination that this had never evolved, and the guilt I felt at the thought of leaving her.

When it came time to find a Dayhome I thought one in our area would be best and when I read an ad online I cried and felt it was going to be the perfect fit. Four days in, Scottie wouldn't eat, she refused to even sit in the high chair there, she wouldn't allow the sitter to put her down, and when I picked her up afterwards she clung to me for an hour looking like all life had been sucked from her. The sitter spoke of her frustrations and the other children's frustrations. I felt sorry for her and dreaded dropping Scottie off every morning for fear she would ruin someones day when she brought so much joy to ours. Then she came home with bruises behind each knee and we were told it was from kicking wanting out of  the high chair. It finally hit me. The ad I cried over wasn't a sign it was meant to be. Scottie was overwhelmed with two many children and not enough hands. Whether it's her low vision, her year at home most days with just me, or something else entirely, she needed less overt stimulation and more structured play.

Luckily, we quickly found somewhere new and putting all our eggs in a new basket I brought Scottie on a Monday morning feeling so anxious that someone else wouldn't be able to handle my baby who was so full of life and happiness at home. My heart raced and I felt on edge for two days waiting to go pick her up and hear the words that she wasn't eating, wouldn't be put down, and more frustration. It didn't happen. Scottie began to thrive. When I picked her up she smiled, blew kisses bye, and sang ba-ba-ba the whole way home. She was sitting in her high chair AND eating, she wanted to be held the first day and with each day it got better and better. She was being her silly old self and most importantly she was being loved by the new Dayhome provider and by the kids.

I feel guilty for not seeing the signs of her unhappiness sooner, but I figured all babies first weeks in someone else's care might cause the same outcomes. Sometimes you need to trust your instincts, but even more often you need to listen to your baby, do your homework, interview at least a few people, and find the right fit. I'm so happy that we have.

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.

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.

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