Going out to parties

Last night we were invited to a friends birthday party. How exciting it was that we were available and everyone was well to attend. We had a fabulous night meeting new families, while taking a moment to stop.

Abbey partied for a short while but then fell into a very deep sleep with lots of seizure activity. Our hosts provided pillows and a warm doona for her. We stayed longer than we thought, so didn’t come too prepared.

Given her situation, James and I played the parenting game, Changing of the Guard. Abbey was showing all of the signs for a big seizure, so we could not leave her side. While one of us chased boys, refreshed drinks or food, the other stood/sat by her side. Then we changed, to give the other a break from watching and socialising.

All up it was 4 hours of socialising and parenting. Today we are exhausted. We are noticing our need to have more recovery time to be able to keep going. At times it’s shocking to the brain, where this is taking us. It’s unchartered for us, but we are learning to go with the flow.

Making Friends

Making and keeping friends I am finding harder these days. My time is full with so much administration or meetings. Only last week I spent a glorious 5 hours in an NDIS and medicine review meeting in one day. Sheesh, I really have better things to do.

Friendships are so important. It takes patient, inquisitive, courageous and generous souls to forge and strengthen friendships with any special needs parent.

I salute and appreciate all of our friends. From those I see every few months to those we spend countless messages trying to arrange a friendship date!

If you are a friend of a special needs parent, know we love you immensely. You keep us grounded, we love that you care enough about us to go on this really crappy journey at times. But know we wish we could give so much more.

Photo: today I hope I made a new friend, a gorgeous lady and her son. The boys loved being ‘big brothers’ and I loved chatting to another woman about everything!