26 May 2014

Ichthyosis Awareness Month: Kallie, Jane and Kati's story. "We don't know anybody that is alive that has skin like me. I am extra extra extra special."

One of the best things about my stay in New Orleans was meeting Kallie, her Mum Kati and her grandmother who Kallie calls Gane. They made a two and a half hour trip to see me, and it was a lovely afternoon.

Kallie is a sweet little girl. She and I played Tic Tac Toe (she's better at it than me!), we ate lunch and beignets (or 'begnets' as I pronounced them with my Aussie accent!) and then she and her mum bought tutus (well, Kati put on the tutu Kallie chose for her sister). So cute! People on the street complimented Kallie and Kati on their bright choice of frills. I regret not buying a tutu...

You might remember Kallie's story from last year's Ichthyosis Awareness Month Blog Project. Kallie has a combination of Lamellar Ichthyosis on her face, arms and legs. and Congenital Ichthyosis form Erythroderma (CIE) on her chest and back. She's five now - it's her birthday today! Happy birthday Kallie!

Meeting Kallie makes sharing part two of her story even more special. She has such a beautiful spirit and is very well mannered. She loves purple and wearing pretty dresses (me too!) and is a Disney fan. She's learning to speak Spanish at school. She also loves horse riding and proudly told me that she fed the horses the night before we met. And she's very pretty. Reading Gane's perspective of being a grandmother to Kallie made me smile and get a lump in my throat. The adults who stare at this beautiful girl having fun are heartless. She's a little ray of sunshine and I hope people see that more than they see her skin.

Kallie, Katie and Gane are very close - it was great to see them all talk and be silly together. Gane is her granddaughters' full time babysitter. I could see Kallie adores her, it made me think of the time I didn't spend with my own grandmother when I was a little girl.

I know Kallie, Kati and Gane will be my friends for life. I do love how we rare people can come together like this.

"Kallie is an extraordinary little girl living an amazingly ordinary life in the skin she is in. Her biggest concern of the day is what she wants for her birthday and who she wants to be for Halloween. Oh how I wish it could stay that way.

Kallie will be 5 years old the end of May, and she is growing in so many ways. She has become quite independent. She likes to be dropped off at carpool and walk to her class with her big sister Kennedy Jane by her side. She is learning and thriving at school, where she is appreciated for who she is. There is a Kallie Day planned at her school by a Senior who is devoting her Senior Project to Ichthyosis.

Kallie has learned to say the word "Ichthyosis" and in her 5 year old language she says .."I have scales". Not sure whose word that is, but it works for Kallie. She readily explains that "God made me very special. We don't know anybody that is alive that has skin like me. I am extra extra extra special". And for now that is good enough.

Winter has been difficult for Kallie and a real challenge for us to keep her skin moist and comfortable. Kati (mom) is always researching and trying different approaches to keep Kallie as comfortable as possible. Occasionally, Kallie complains, but for the most part she just goes with the skin she is in.

We are all looking forward to summer and the swimming pool and trips to beach. Summer is much kinder to Kallie. She loves to swim and the salt water really helps her skin. A win win!

Kallie received a Tiny Super Hero cape and Kennedy Jane (older sister) has a Tiny Super Hero sidekick cape. They are both very proud. Kennedy Jane is 7 years old and wise far beyond her years. She steps up and protects Kallie and is her very best side kick.

During Mardi Gras Holidays, Kallie...Tiny Super Hero, Kennedy Jane, the best side kick,

Kati ( Mom), and I (Gane) went to Disney world. We had a marvelous time. Those 2 little girls are very brave and fearless. So I put on my still a kid at heart mode and rode endless roller coasters and enjoyed each bump and sharp curve. While Kallie was focused on the next big adventure people were starring at Kallie. For the life of me I can't begin to imagine what is going through a seemingly intelligent adult's mind nor what they are thinking, when they stare at Kallie. I want to say "if you knew how foolish you look you would stop staring at this very animated child who is thrilled beyond words with what ride awaits the very long line."

Because Kallie is 5 years old, she is not eye to eye with adults so most of the stares go over her head. For me it is very disturbing. As her Gane I want to protect her. But as time goes by, we won't always be there to protect her. So it is my prayer, that in the next few years we can equip Kallie with the strength and aptitude to face those stares with an understanding beyond her years. I trust that Kallie will be comfortable in her skin and the stares will bounce back with a confident smile. I hope Kallie can stand on a platform of acceptance and teach others about people with visible difference and help each of us to be comfortable in the skin we are in.

We all face challenges in accepting our weaknesses and embracing our strengths. Kallie has more than her share. My prayer for Kallie is that she lives her life to the fullest and becomes the very best Kallie. So far she is exceeding my expectations.




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.


1 comment:

  1. I am loving the perspective from other Grandmothers! I feel a strong bond w/ those Mawmies, Grannies, Ganes, MiMis who are blessed w/ the Princesses and Princes in our community.


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