My now-husband, Chayd, and I were high school sweethearts who had just graduated together the year before. We were young, in love, and set to start our lives together. In January of 2012, we went away on a trip to Hamilton Island for my mother’s birthday. It was then I started to have these weird, I guess you could say, motherly instincts I may be pregnant. I was late and not feeling great, so the thought had crossed my mind. Only 17, I was scared so I kept these feelings to myself until I got a pregnancy test when we arrived home. I was right. I was, in fact, pregnant.
I remember sitting on the toilet, looking at that stick, thinking, "How am I going to tell Chayd?"
I walked into the room and placed the stick down on the bed. He looked at the stick, looked at me, and said, "Nah," with a smile on his face. "It’s probably a false negative. Don’t worry, it’ll be fine."
I told him we needed to go to the doctor to get a test to confirm the pregnancy. You see, since we were so young, I was getting all my advice from good old Dr. Google, who told me I needed to go to the doctor. Right then and there, we went to the doctors. We peed on another stick and the doctor congratulated us after seeing the instant results.
When Chayd and I got back in the car, I said to him, "Can you believe the doctor just congratulated two 17-year-olds for being pregnant?"
We both were in shock still and didn’t really know what to do from there, but we agreed we wouldn’t tell anyone until we both felt ready. Around 12 weeks, we told family and friends. Some were okay with the news, others were disappointed and angry at us. Regardless of their opinions, this baby was ours and we were going to love it and raise it to the best of our ability. Our pregnancy was textbook, and Chayd had managed to land a full-time job, while I was working part-time.
Fast forward to the night of August 27, 2012, when I was 35 weeks pregnant.
My water broke prematurely and just like that, we were off to the hospital to give birth. My parents and brother came up with us, and I was so grateful to have their support. Eight hours later at 7:52 a.m., our baby girl, Arliyah, was born at just 4.9 pounds. The amount of love I instantly had for her was indescribable. I remember as they passed her to me, I sobbed to Chayd, "I love her, I just love her so much." I held her in my arms, looking at her incredible locks of white hair. I thought to myself, "She’s just like her daddy."
Chayd and I had super blonde hair as young kids so it wasn’t a shock for me to see how white Arliyah’s hair was. As all the doctors and nurses started coming in to check her, I started panicking, thinking they would have to take her away from me to the NICU. They let us hold her for a few hours and then they did have to take her away. That moment was, back then, the hardest thing I had to do, watching them take my baby girl away from me. Little did I know that was only the beginning of our journey.
Chayd called his family, who lived about four hours away, and they started to make the trip to us.
Meanwhile, I had a shower, freshened up, and couldn’t wait to get to the NICU to see my baby. Chayd helped me walk down those hallways, which I remember vividly. As I walked into the small room, I saw my sweet little girl dressed and wrapped up in a little blanket with tubes in her nose and off her arms. I ran over to her and picked her up immediately, and I didn’t let her go until it was time for the nurses to talk to us about what the plans were with her stay in the NICU.
A couple of days passed. Chayd had gone back to work so it was mainly me and my mom coming and going.
One morning, I went around 5 a.m. by myself to be there for her morning feed. She was doing really well, despite being so small. One of the nurses came in and sat next to me as I tried to breastfeed Arliyah. She asked me if I had ever heard of the [word] albinism. I looked at her and said, "Nope." She said, "What about albino?" I replied in a joking manner, "Everyone in high school used to joke Chayd and I were so fair, we would have an albino baby." She grabbed my hand and said, "I think your baby may be albino. We want to put a cover above her cot, as we think the lights are hurting her eyes."
I didn’t really think too much into it. I was mentally and physically exhausted. I went home that night and told my parents and Chayd what the nurse had said about Arliyah. Right away, they all went into overdrive googling. I remember crying and yelling at them to stop because my baby was fine. There was nothing wrong with her and I didn’t want to hear about this albinism because she didn’t have it.
The next day, my mom came to the hospital with me and the ophthalmologist met us.
I couldn’t be in the room while they held her tiny eyes open with these metal prongs. I heard her screaming from down the corridor. When she stopped, I walked back into her room and picked her up. I knew in that second something was wrong by the way the ophthalmologist looked at me. He said, "I’m sorry to tell you this, Hailey, but your little girl is blind. She is an albino. She can’t go outside in the sun. You need to contact vision services and maybe move somewhere not so hot." And then he walked out.
I fell to the chair, holding my beautiful baby girl and sobbing. My mom comforted me, and I will never forget the look of pain and sadness in her eyes that day. That afternoon, we left the NICU knowing very little. We headed to Chayd’s work, where I met him outside and told him the news. He hugged me and said ever so gently, "She’s not blind. She is going to be just fine, I promise."
That night, Chayd and my dad began researching all they could about albinism.
However, I was in complete denial and just wanted her home. They showed me photos of other people with albinism and dad managed to get in touch with a woman who ran the albinism fellowship of Australia. I didn’t want to speak to her or anyone, for that matter, about it. I was sure no one would even notice she had albinism. I remember thinking that night, "It’ll be fine. I’ll just bubblewrap her and keep her by my side forever. I’ll homeschool her and hide her away from the world."
Twelve days after she was born, it was time for our baby girl to come home. Chayd was now 18 and I was just two weeks shy of my 18th birthday. All I did that day was hold her. Family and friends wanted to see her but I refused. I didn’t want anyone holding my baby. After all, I had to protect her right? I refused help from my parents and even Chayd when it came to feedings, bathing, and changing Arliyah. I needed to do this on my own.
Arliyah was a hard baby. She cried 24/7, barely ever drank her milk, and never slept.
The days were long and the nights even longer. I pretty much stopped all contact with the outside world, lost many friendships, and annoyed a lot of family. I didn’t want anyone near my sweet innocent girl. I finally decided it was time to see a friend of mine and we went out shopping for a couple of hours. I hadn’t told her about Arliyah’s diagnosis because I barely told anyone aside from family.
Arliyah was laying on her back in the pram and there were lights above her head, which made her eyes look pink. My friend yelled out, "Eww oh my gosh, what’s wrong with her eyes!" My heart sank immediately. I covered the pram and quickly said, "Nothing, it must just be the lights." That was the day reality hit and I realized I was now a mother of a child with special needs. I needed to do all I could to ensure she had the best chance at life.
Our pediatrician was fantastic.
He put us in the hospital to monitor Arliyah for two weeks to work out what was wrong with her. He also referred us to a local ophthalmologist, who we saw after being discharged. The appointment was quick. He barely looked in her eyes before telling me she was indeed albino and there was nothing we could do. He told me of all the things she wouldn’t achieve in life, gave me some contacts for vision Australia and guide dogs, and off we went.
I was angry after that appointment. How dare he tell me what my daughter will and will not be able to do in life? I was motivated because I was going to prove him wrong. I would show him just what she could achieve in her life.
After that day, I went into overdrive researching, reaching out to families who had children with albinism, and seeking therapy for her.
The first 12 months were a whirlwind. There were days where all I did was cry and think, "Why me? Why her?" Then there were days when I would do nothing but laugh and smile from ear to ear because I was blessed with this precious little girl. I still hadn’t fully come to terms with her diagnosis. Everywhere we went, people pointed her out. There were comments about if her hair was natural, who the father was, and just overall touching her and wanting to hold her. I would come home crying, angry at the world.
My dad gave me some tough love and said to me, "Hailey, she is going to have this for the rest of her life. You have to find a way to accept it and deal with the comments." He was right. I did have to find a way to cope. I soon realized my way of coping was holding her close to me.
Speaking to other families who have been through the same things was, by far, the most helpful thing of all.
Hearing their stories of how well their kids are doing gave me so much hope. One of the mothers I had been speaking to gave me the contact of an amazing lady who worked with guide dogs. I got in contact with her, and she invited me and Arliyah to come down to a camp where we would get to meet other families with children who were vision impaired and learn about how guide dogs could help us. Arliyah was just over 12 months old by then.
The camp was such an eye-opener. I met some older kids who had vision impairments and were just like any normal child. It made all the difference in the world, seeing how healthy and happy they were.
When Arliyah was 18 months old, Chayd and I fell pregnant with our second child.
All throughout the pregnancy, I knew he wasn’t going to have albinism. I know it sounds weird but I just had this strong feeling, and I was right. Our son was born on August 14, 2014, weighing 7.25 pounds. When he came out, I remember looking at his hair and knowing straight away he didn’t have albinism.
After our wedding that year in May, we moved into our very first home at 19 years old as a family of four, bringing Reagan home a couple of days after he was born. Life was hectic with two kids. Arliyah was an incredibly active toddler who had the most adventurous, outgoing personality and never took no for an answer. She made her own path very young and that path would lead her to where she is today.
Reagan was a relatively easy baby and the two quickly became inseparable.
Life moved pretty quickly with all the appointments and therapies Arliyah had. We soon realized the older she got, she actually did have some amount of vision. She was still classified as legally blind but she could see enough to get around pretty well.
I had always wanted a big family and after two kids, I wasn’t done. Soon enough, we were pregnant with our third child. Because Chayd and I carried the gene for albinism, any child we had together would always have a 25% chance of having albinism. Throughout the pregnancy, I knew the baby would have albinism. I kept saying to myself, "If she does have albinism, then she and Arliyah were meant to do this together."
Nine months went by and we now had a 4-year-old and a 2-year-old.
Mackenzie was born on September 10, 2016, weighing 7.75 pounds with, you guessed it, white hair! The nurses were all so smitten with her. After Arliyah, it was nowhere near as scary this time around. Bringing Mackenzie home was incredible, and the kids adored her. Arliyah was on top of the world to have a baby sister with albinism and Reagan was so excited to be a big brother.
Arliyah was always a bull at the gates, going a million miles an hour and always wanting to give everything a try. Nothing was impossible to her and she was willing to prove to anyone she, in fact, could do everything all the other kids did.
Mackenzie fit into the family perfectly. She couldn’t have been any sweeter.
She was truly the icing on the cake. Life did get more hectic with two kids needing appointments and therapies, but I managed. Soon it was time for Arliyah to start school. This was something I had dreaded from the day she was born. I had been researching schools since she was 2, because I wanted to ensure the school I found could accommodate her, and I had narrowed it down to two schools. The school Chayd and I agreed on was absolutely everything I could have imagined. They went above and beyond to make sure they were set up and ready for her.
In the meantime, Reagan was having a rough time with a few things and needed speech therapy, so adding that into the mix was tricky.
The day Arliyah started school was so hard. I cried and cried and cried. She, on the other hand, was happy as can be. Everyone was finding their feet, as teaching a student with vision impairment was new for everyone. We all had to really work together to work out what she needed and how we could ensure she was able to learn at the same level as her peers.
There were many ups and downs throughout that year. Arliyah needed an eye operation to try and correct the turns in her eyes. It didn’t help her vision, unfortunately, but it helped her focus a little better. That year, there were many falls, running into poles, tripping, and losing friends at lunchtime. It really was rough for her. It took some time for her to even find her place. We were so lucky to have found some incredible people along the way who’ve now become like family.
Along our journey, I really was introduced to an entirely new world.
There are only about 1,000 people in Australia with albinism, so it’s super rare and I wanted to break all the stigmas and the assumptions people have about albinism. Like most parents, you let your kids try out different sports to work out what they like best.
Arliyah was never your typical little girl, let alone vision-impaired girl. She never liked to dress up or play dollies. We heard from a friend about Muay Thai (kickboxing) and although my heart dropped at the thought of my precious girl punching and or being punched, I quickly realized the value of her learning self-defense and how valuable that could be. I spoke to Arliyah about it and she couldn’t contain her excitement. This was right down her all[e]y and we all knew it.
Both Arliyah and Reagan have fallen in love with Muay Thai.
Arliyah trains four times a week, including a fight class. It has pretty easily become a passion of hers and I truly don’t believe she would be the child she is today without it. My children have learned so many life skills and gained so much confidence. Arliyah has a goal and her goal is to fight mainstream fights like everyone else does. She’s had a couple of in-house fights and has done exceptionally.
No one can believe, with her lack of vision, how much of a strong fighter she is. She is the only known child who is legally blind to do Muay Thai in Australia and I think that says a lot about her. Everyone who meets Arliyah comments on her ability to put 100% into everything, never take no for an answer, and never act as though her life is harder than anyone else’s.
That being said, this girl DOES have to work ten times harder than everyone else does just to achieve the same results.
Some days Arliyah screams and cries because she wishes she could see and that life was that bit easier for her. Numerous times, I have sat with Arliyah and we’ve cried together, grieving the loss of her vision together.
Mackenzie is quite different than Arliyah. She is my little princess ballerina girl. She has a huge personality and is the sweetest thing you’ll meet. Mackenzie struggles with anxiety around her vision loss so she’s had to have more therapies and more early intervention than her big sister.
Reagan plays a huge role in this household. He really is a big brother to both girls and helps them, guides them, and describes things to them as needed. Watching Reagan grow up with such acceptance of differences and disabilities is by far the most invaluable attribute a person could hold. For us as a family, learning to appreciate life has been the greatest gift of all.
I sometimes do imagine what my life would have been like had the girls not had albinism.
When you have a baby, you never imagine the possibility of there being anything "wrong" with them so when do you receive a diagnosis, you [are] always going to carry that bit of grief for what you’ve lost. I know there is no way I would be the person or mother I am today had our journey not been the way it is. I truly am grateful for that because it really has opened my eyes up to a world I might not have known ever existed. All in all, the girls are healthy and happy and I couldn’t ask for anything more.
Reagan is currently awaiting an autism diagnosis, Mackenzie starts kindergarten next year, and Arliyah will be moving up to grade 3.
Our journey is far from over. I know there will still be so many bumps in the road along the way. I never could have imagined myself being a mother of children with special needs and having my life revolve around therapies and specialist appointments. That is the crazy thing about life, I guess. You never know what to expect and you really do need to just roll with the punches. If I could share one piece of advice, it would be knowledge is power. Never forget that.
This essay was republished with permission and was written by Hailey Brown from Australia. You can follow her journey on Instagram and on her website.
