16 May 2015

Ichthyosis Awareness Month - Brooklyn's story - "Brooklyn isn't the only one with Ichthyosis. We all get covered in lotion and flakes and we wouldn't change it for normal any day."

This post is from Brooklyn's mum - I really like the deeply personal reflection. She writes about how disability - including Ichthyosis - has changed her way of thinking. She reveals how her life has changed for the better because of Brooklyn. She is very candid in her views about disability before Brooklyn was born - but since Brooklyn's birth, she's realised that disability is not a burden, and Ichthyosis is awesome. Brooklyn is 18 months and has Lamellar Ichthyosis.

Meet Brooklyn and her mother.

"Our Ichthyosis family.

Our family was blessed with Brooklyn in October 2013. We had no idea that she would come out so special, but she did and we are over joyed about it.

I know that sounds odd. Most people see children with disabilities as challenging and unfair. I know I did at one point.

My niece Nichole was born with down syndrome. I was young, around 15 maybe. And this is way before Brooklyn was ever imagined. I remember seeing my brother and his young wife. Freshly married fall apart, then pick their selves up. It was unexpected and in our family, this was a cause of bad habits when your pregnant. Its hard to explain anything to an unwilling and uneducated person. But I believed they knew more about it than any other family member.

My sister in law and I have always been close. So naturally when her daughter was born I felt immediately close to her too. It was hard, I'm not going lie. I couldn't understand what she needed as she grew. I didn't know the first thing about sign language. And then there was that part of me that felt she deserved anything she ever wanted because she was suffering. So, I guess you can say, I thought as any other ignorant person did. I also remember hoping when my son was born that I didn't have to deal with any surprises like they did. How selfish of me right.

My son was born and it spoiled me. Delivery was perfect he was healthy and everyone was happy.

Years down the road, I met my real true love and married, and this is where Brooklyn began. It took awhile to get pregnant, we had to force and work a little bit at it, but it was something we both really wanted. And she was here. The completion of our family.

Her birth was horrible. I still have nightmares of it to this day. Her doctor wasn't in town, it was a dry birth, 3 days in and she finally was here, then she was gone. Of course she just had to be born like that in a small town with dumb doctors. But, with a bad attitude and a foot in people butts we finally got see her. Who ever thought being mean would get you where you wanted to be.
Brooklyn, who has Ichthyosis, dressed up in fairy wings
It was sad, then it was scary, then it was out of control, then finally confusing happy. And I love ever freaking moment of it. If I would have had a normal child... Honestly I don't think I would have loved her as much as I do Brooklyn. Normal is just over rated. Boring. My son, who isnt affected is not normal. Far from normal, which makes him the perfect big brother. I thank God I have Christian.

Brooklyn, who has ichthyosis, and her brother in the snow

But my children are more than the Ichthyosis. It shapes them, it colors them, its their way of life... But, its not them, not completely anyway. I can't imagine a day with out lotion, without flakes, without any of this. I use to hate being stopped by people who are curious about Brooklyn, now I'm excited. Because finally, for once in our family we love being that poor sad little family people gossip about while walking away. Because to them we are those people, but to us, we are stronger, smarted, kinder and more beautiful than anything they can imagine.

We get to do a lot more than any family and we have an excuse. A true medical excuse to do what we want. We get to meet so many wonderful people and connect with them and FOR ONCE, we can say, "I understand what you mean" because guess what we do.

Brooklyn isn't the only one with Ichthyosis. We all get covered in lotion and flakes and we wouldn't change it for normal any day.
Brooklyn, who has ichthyosis,with her brother after a bath

Ichthyosis is awesome. Its hard, challenging and scary. But why would you want to live simple and boring."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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