About

 

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This is the story of Sophie Rose. My beautiful four year old daughter. My little ray of soul shine.

Sophie came to us with many things…purity, innocence, courage, wonder, curiosity, joy and lessons to teach.

She also came with a little something extra…Kabuki Syndrome and Asperger’s.

Like many kids her age, Sophie enjoys being read to, playing in the park, camping, going to her wonderful Montessori daycare, painting, jumping on the trampoline, playing with her train set and cars, spending time with her Nana and Papa, listening to music and dancing along.  She  just loves life!

Unlike most other kids her age, Sophie has 12 medical specialists (down from 19!) and four therapists. She works hard to achieve things that come naturally to most children.   She has had more doctors appointments in her few short years than most of us will have in a lifetime.  She has had to undergo  surgery, hospitalisations, multiple blood draws, X-rays, hearing tests, EEGs, speech therapy, physiotherapy, horse riding therapy, occupational therapy, social skills therapy and more.  Her weeks are very busy!!!   Sophie has low tone, delayed fine and gross motor development, social delays, speech articulation issues, immune issues, issues with her endocrine system and various food intolerances.  Her therapy and medical needs will be ongoing….this is a marathon, not a sprint.

Despite Sophie’s many challenges, she is an absolute joy to be around. She works hard at all her therapies, but also just adores spending time doing “normal” things with our family, like picnics on the back lawn, beach adventures and trips to the zoo.  Life is not always easy for her, or for us, but we feel blessed to have her in our lives.  She has taught us so much, and we would not have had the pleasure of meeting so many wonderful people if she had not come to us.

I’ve been meaning to share our story for a long time, and for many reasons…to keep a record of our journey, to connect with other Mums who have children with special needs, to share our struggles and our triumphs, to perhaps give some hope to Mums out there on similar paths.

Enough dilly dallying…let’s get this thing started!

ALL POSTS CAN BE FOUND ON THE “HOME” PAGE OF THIS BLOG

 

4 thoughts on “About

  1. Hi Kath!

    My name is Hannah Benjamin and I am reaching out to you because my company Trende just did a feature on a young woman named Jordan Reinman who found out she has Kabuki Syndrome only a couple of years ago.

    I would love to share this video and editorial with you that we did with Jordan and hope that you will share it with others you believe will be inspired by Jordan’s story. She is an amazing young woman.

    Here is a link to Jordan’s full video and editorial: http://www.trendeing.com/june.html

    Thank you for your time and I hope Jordan’s story inspires and encourages you.

    Sincerely,

    Hannah Benjamin

    Like

    • HI Hannah – I hope this comment gets to you because I’m not any sort of expert with WordPress and I’m unclear as to whether you will get a notification that I replied to you. I first became aware of Jordan Reinnman a couple of years ago, when she joined a facebook support network fro people with Kabuki Syndrome. She has been such an inspiration to me, as at that time she was the first adult I knew of who had Kabuki syndrome and who did not have intellectual disability. My own daughter is not intellectually impaired, and I had never been able to imagine what it might be like for her as she grew older. So I have followed Jordan’s story closely and been in contact with her via facebook. She is indeed an inspirational woman, and this piece you have done is absolutely exquisite. Thank you so very much for sharing ❤

      Like

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