Wednesday, 21 March 2012

Tell Your Story

Excited to have friends over to play
Radio Interview

Yesterday was a wonderful day. It started with me doing a radio interview on ABC North and West for World Down Syndrome Day. I was incredibly nervous, but the announcer, Ann, very quickly put me at ease. It was a pleasure to be able to share a little bit of our life with Felix and to raise awareness in our community about Down Syndrome. Many thanks to ABC North and West for giving me the opportunity to speak. Thanks also to Down Syndrome SA for choosing me to be the voice for those in our region with children with Down Syndrome.

ABC North and West -

Down Syndrome SA -

Felix with Sophie and Jacob

In the afternoon, two of Felix's little friends, Sophie and Jacob, came over for a play to celebrate World Down Syndrome Day together. Both Sophie and Jacob are beautiful kids with an incredible zest for life.

Sophie is nearly 3 years old and is a gorgeous little girl. She arrived with a little pink backpack on her back and carrying her handbag. She was wearing blue and yellow ribbons in her hair. Sophie enjoys giving lots of cuddles so Felix was snuggled like he's never been snuggled before. It was adorable! Oh yes; and Sophie has Down Syndrome.

Jacob is 14 months old and has the biggest smiles. He is one of the 50% of babies with Down Syndrome who are born with a heart defect. It has been wonderful to watch as Jacob has gone from a very sick baby to a healthy robust little boy since his heart surgery. Jacob is learning how to clap his hands and can now sit up beautifully all by himself!

It was such a joy to watch the kids play together. They enjoyed sitting in the ball pit together, throwing the balls. There were lots of cuddles and laughter. I didn't see Down Syndrome as I watched them play. All I saw was 3 happy children playing and having fun just like any other children. All 3 of them are so precious.

Sophie enjoyed cuddling Felix
A nice surprise

Later yesterday afternoon, I received a phone call from a lovely lady who does amazing work with those who have Down Syndrome and their families. She called to tell me she was enjoying my blog and had watched the video we made about Felix for World Down Syndrome Day. It is always nice to hear from her, but there was a special reason why she had called me.

She went on to tell me that she had been born with hydrocephalus (the same as Felix), almost 50 years ago. She has had numerous surgeries throughout her life, but it has never stopped her from doing anything. She has given birth to children, had a career and led a full and active life.

If she hadn't told me, I never would have known. I felt so blessed that she shared her story with me. It has been a difficult 24 hours since hearing that the ventricles in Felix's brain are enlarged, so hearing from someone with the same condition who has had such a great outcome was just what I needed to hear. I feel encouraged, and much more hopeful for Felix and his prognosis.

Such precious little faces
Share your story

I feel even more compelled to share Felix's story now. Today I was on the receiving end of hearing someone else's story; a story about hydrocephalus. It was exactly what I needed to hear! I'm hoping that by continuing to write about Felix, I can be the one to encourage someone else who may be struggling with the prospect of raising a child with Down Syndrome.

I would say to all of you. Share your stories with each other. You have no idea how encouraging you may be to someone else who has been through or is going through something similar to you. Whatever life throws at us, it is always comforting to know we are not alone.

Celebrate life; and have a beautiful day!

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