Tuesday, September 29, 2015

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

Sunday, September 13, 2015

Becoming Mom Age

Becoming "mom age", that being the age when your friends start having kids, has taught me almost as much about myself, if not more, than becoming a mom myself.

Before I became a mother, I was that hounding friend telling other mother's to get their babies on bottles to come out for drinks, I was against co sleeping, I was pro independence, my baby would take a bottle and sleep in her crib and lost in my mind was this idea that babies are only as hard as you allow them to be. I was wrong. Once I became a mom, I didn't take any of my own advice I was freely giving out. I didn't know what it really meant to be a parent, to care for something else so immensely, but mostly what I didn't know before becoming a parent is how many women are suffering aching for sleepless nights and crying babies, these women want to get puked on and fight with their spouse about who's turn it is to change diapers. I didn't fully realize that becoming a parent, and even trying to become one, often equates irreparable heartbreak. I didn't realize that the things most women begrudge about parenting others long for and who don't judge you if you bottle or breast feed, or co sleep, or use disposable diapers, they just want the chance to do it.

While I was pregnant and even after I had my baby, friends were struggling to get pregnant, friends lost their baby to heart troubles, friends miscarried, and one friend had a baby that has changed me in ways I wish the world could be changed without having to go through it the way She did. The way that she carried a baby who she knew might not make it, delivered her baby, and spent 21 days loving him.

Carrying a baby inside you for months creates a lasting bond there is no denying that, but the days afterwards are like nothing else. A life that you created is now yours to hold, to love to care for, but for some women it doesn't last. These Mothers are left with empty hearts, empty hands, and empty bedrooms that they had spent forever preparing, dreaming of putting their babies to sleep in.

The experience of learning about these women has reminded me to be grateful. To not get lost in the nights spent up feeding a crying baby, or diaper changes, or fighting with your husband about what chores need to get done. Every time I look at my baby I appreciate her and it's because I know that not every woman has what I have. So, now when I rock her to sleep, or let her sleep in our bed, or comfort her with nursing I laugh at my former self who vowed to be everything I am not and I smile that I am much more attentive and loving and I am cherishing every moment because what I have learned. I'm not perfect. I'm just a mom and I understand more now than ever how lucky that makes me.

Because of Her I told my baby a little tighter.  I've slowed down. I've become a better mom because She lost her son.

To learn more about one moms journey & the impact of losing her son visit her blog here: https://carriedwithlove.wordpress.com