Week 2 and up next is Cara, Cara blogs over at Lyla’s angels

A little something about you…. (including your disability!)
I’m a 30 something mum, wife and dreamer. I grew up in Belfast, called Melbourne home for over a decade and now Glasgow is where I belong. I met my husband online and moved to Australia just 6 months after we met. In a previous life I was recruitment consultant then an executive assistant for a not for profit. Now, as well as being mum to my 8 year old and 5 year old, I write stories about our family’s life and I’m an activist for disability rights.
A little something about your child’s diagnosis
My 5 year old daughter Lyla is a little celtic fairie who loves glitter and bracelets. Lyla was born with a rare brain disorder called polymicrogyria and as a result she has quadriplegic dystonic cerebral palsy. We didn’t realised until Lyla was 7 months old that she wasn’t hitting the expected milestones, then our world changed. That’s not really true, the future I had expected changed while our world stayed the same and carried on the way it had been destined to go all along.
What would you wish the world would know about you or your child and or yours/ their Disability?
I wish people knew how much joy Lyla brings our whole family. I feel that sometimes people view having a disabled child as a burden or a wee shame but that couldn’t be further from the truth.  Australia was our home for a very long time but when Lyla was three we knew moving back to Scotland to be closer to our families was the right decision for us and we have never regretted it. Our family is together and that is because of Lyla. She gave us all such a gift and we all feel such immense gratitude that she chose us to be her family.
If there was one thing you’d change what would it be?
I know there are many parents who say that they wouldn’t change anything about their child’s impairment but I can’t say the same. If I could flick a magic switch and take Lyla’s brain disorder away in an instant with no repercussions I would. Obviously in the real world there is no magic switch however if I could wish for just one thing it would be to hear Lyla speak. Lyla is vocal but not verbal and she communicates with a PODD communication book using her eyes and head to indicate yes or no. Her face is so full of expression that as her daddy says she may not speak with words but she says everything with her eyes and her excited, happy sounds. I just wish she could tell me in her own words what she is thinking or what random question she wants to ask.
Do you think having a child with a disability (or yourself) has effected you ? Your family? Siblings ? If so How? If it’s yourself do you see it as a disability the same way as others who have children may see it.
Before having Lyla I didn’t know any disabled people or children. In the beginning I was scared, anxious and tired but 5 years on I can see that Lyla has made me the person I have become. She has shown me how strong and determined I can be, she has taught me patience and she has pushed me to do things I never thought I would including writing and speaking in public. I have a better sense of what’s really matters in life than I did before and I know how important being part of a community is. I don’t sweat the small stuff as much anymore. While her brother is having a different sibling experience than many of his friends, I believe that he is learning to be a more compassionate and accepting person than he otherwise might have been. I can’t speak for Lyla’s grandparents or my husband but I would imagine that having Lyla as part of their lives has taught them so much more about family, acceptance and themselves than they could ever have imagined when she was diagnosed.
What’s the one thing you love about your or your child’s disability? ( Everyone always posts the negative stuff to raise the awareness !)
The cuddles. I love the cuddles. Not many mummies of 5 year olds get cuddles constantly like I do from Lyla. She may need to be lifted everywhere in to her equipment but she’s still light enough for me to do this without hurting my back and feeling her little arms around my neck as she cuddles in makes me so happy. Of course there’s always the chance that she’ll smack me in the eye by accident or grab my hair in a spasm but it’s worth the risk. Lyla’s favourite place to sit is on my lap, she loves cuddling into play with her toys or to watch Mister Maker with me and I’ll enjoy that for as long as I can.
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Come join us next week to meet the another special sen blogger.

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