A perspective on the world of disability from a mother and an educator. Follow my blog!

Wednesday, 2 July 2014

Something simple.... isnt.

I have so many things to be grateful for, and so many things to cause concern. Life is nothing more than a balancing act- this past year has taught me that. All things in moderation. I'm getting back on track slowly with balancing it all and I think a lot of the is down to realising the ebbs and flows of living with disability and chronic illness in your daily vocab.

Over the past month I have had affirmations that have been desperately needed. Apparently I'm a positive, glass half full, silver lining kind of person and I know that I need to be reminded of this. Don't we all need to be holding onto hope & showing gratitude daily? 

Apparently I am a 'go-to' friend, a shoulder to lean on, the deliverer of hot soup. Shouldn't we all be there for each other in times of need?

It wasn't easy making it all the way to winter holidays and in fact in the last week of school we saw no less than 4 specialists with another still to come. On the last night of school we were invited to the 18th birthday party of a close family friend. As they live in a neighbouring town we offered for them to get ready here. Having 9 people getting ready for a party, the disruption to routine, the noise, the general fatigue- it all made it so abundantly clear as to why we have such difficulty doing 'normal' activities. I can't describe the chaos that was our house for 2 hours while we all dolled ourselves up for the evening. Something as simple as going to a party requires an inordinate amount of effort.

Not only was the preparation difficult, but the dinner was as well. How to explain to my big girl that the party was not for her, even though she is still riding on the high of her own 8th birthday a fortnight ago? It breaks my heart to see her tears when I tell her she can't get everyone's attention and sing 'Love is an Open Door'. While she is the most generous and giving person I know, sometimes she just cannot see beyond herself.
https://www.facebook.com/pages/Story-Book-Cakes/255637067809968?fref=ts
The most amazing cake made by a darling friend at Story Book Cakes.
Swapping stories with amazing friends.
My little Viking and my gorgeous middle girl exploring the magic!


If the preparation and dinner were hard, we paid double the following day. Such an exciting event is so emotionally draining that the next day often leads to an inability to be her generous & giving self. If it's been particularly bad there can be almost no communication at all. I learned early in my career as a special education professional that communication IS behaviour and behaviour IS communication. My girl is telling me so much, by not telling me anything.

It's in times like these that I really rely on that innate positivity - my silver lining inner monologue. I become her go-to person, her deliverer of soup for the soul. I could have a big ol' pity party for one about how this isn't fair, how we can't do all the things 'typical' families do. Instead, I work hard everyday to acknowledge the joy she brings to the world, and to my life. It's a choice. I'm tired, fatigued, worn down, resigned, but always filled with joy -  because of her.

The next two weeks of holidays are about sleeping in, chilling out, learning to ride bikes, baking, spending time with friends, breakfasts in bed, building puppet theatres and mud kitchens. I'm looking forward to lavishing attention on my girls & connecting with my Bear.




1 comment:

  1. It would be lovely if you could leave a quick comment saying where you're from & why you're reading!

    ReplyDelete