Thursday, June 7, 2012

Time To Take A Little Time

Time is an interesting thing. When you think about it, time is how we live and measure our lives. Yes it’s an arbitrary thing, but we do it all the same.

Times in the past…
Times in the future…
Not wanting times to end…
Counting down the time…
Not enough time to do...
Am I spending enough time doing…
Time spent with…
Time without or apart from…

Which brings me to the Time that I want to write about today. Needing to take some timeout. Time (dare I say it) away from your child!
I mean the kind of time to take a rest, a breath, reflect, re-gather, whatever you need to do to keep yourself balanced and on top of things.

I’m sure that even mothers with healthy children need to take a bit of “Me” time now and again. For us Noah’s care is practically 24 hours around the clock. It is physically challenging and also very emotionally draining.

Love this Manifesto, but if only the needs of our kids were that simple

At first I felt like I needed to be there every moment, as I didn’t know when our moments would run out. I also came to find (regardless of what people tell me) that I am not a super woman! I have already learnt that I can endure way more than I thought possible. Hell I could endure ongoing sleepless nights, constantly watching my child arch in pain and endlessly trying to console him, holding him for hours in the only way he will settle. Waiting for that brief 30 minutes of day nap time so I can run around the house like a mad woman and try to do washing, cleaning, medications, tubie stuff, etc, etc. Never being able to leave the house with Noah by myself. Staying up till all hours getting things done. Only to have to face the same exact things the next day and the next….. But I realized quite some time ago that I would wind up a blubbering mess and not the person I am or want to be. We needed help.

Sometimes I feel a little selfish and guilty for leaving him or having someone else look after him. But taking this time makes me a better mother to Noah and makes me the kind of mother that he needs.

It hasn’t been easy trying to find out what services are out there to help in a situation like ours. But as Noah reaches towards the 19 months old mark we are finding more and more balance. I thought I’d share a few of the things that have made this possible.

Lady Lawley Cottage by the Sea
LLC is an out of home respite centre for children with special needs. Including high/complex medical needs. It is a beautiful homelike and enriching place for children to have some time away from home. There are registered nurses on staff, sensory rooms and opportunity to interact with other children. Lady Lawely Cottage has such a wonderful history and was first opened in the early 1900’s. It has such a nice feel about it and has amazing views over Cottesloe Beach. After going there and meeting the staff we knew it was a place we would feel comfortable having Noah visit. Having said that the first few times were really hard. I still can’t help but call up to check on him. The staff there love Noah. They fight over whose going to hold him first when we arrive J

Original Building at Lady Lawley

Gorgeous view of Cottesloe Beach
Noah stays in the Oceanview Building

Last Kisses xoxo

In Home Care
We now ,only recently, have an amazing carer who comes 3-4 days a week. I honestly don’t know how I managed before. She is awesome with Noah and comes to his hospital appointments, therapies, etc. Things like taking Noah for a walk or in the car were impossible before, as it takes two people to manage it. My last solo attempt at taking him to the park ended in him screaming, shaking and stiffening like a board and me making a dash for home, leaving the stroller in the park (Luckily it was still there when Aaron got home.) Now we are not confined to our house. Yippee! Noah even came grocery shopping for the first time! I feel like a weight has been lifted and I am slowly starting to get on top of things. Now I will have more time to coordinate appointments/therapies/activities/researching ideas for Noah and hopefully will have more time to share things on Noahs Ark too J

Kalparrin Mothers Camp
Kalparrin organises a range of respite events for mothers, fathers, couples and other family members. Enabling them to take a break, connect with old and new friends met, who have similar stories and can understand what its like to have a child/family member with special needs.

One of these such events is the Mothers Respite Camp, which is held twice yearly. A few weeks ago I went on my second camp. It was held in a "rustic and rural" setting an hour and a half out of Perth in a gorgeous little village called Fairbridge.

Our group stayed in Middlemore Cottage
The weekend included a huge selection of activities to choose from including: massage, reiki, foot reading (this was really fun), chakra balancing (this saw a fellow mum and myself giggling and sneaking out the door, as we couldn't control our laughter. We were trying to follow along, but then the instructor told us if it "felt" like our partners chakra was sticking out too much to take our imaginary duster and dust it away?!? Ah you lost us there.) There was also journaling, crafts and even a flying fox! As traditional there was decorating tables, dinner, DJ and dancing, with this years theme being All things Magical: Fairies, Witches and Wizards. After dinner there is a big raffle held. Our table had lots of luck and I myself ended up with three prizes!

The experience of Kalparrin Mothers Camp and indeed Mothers/Parent Groups all around the world cant be underestimated. Swapping stories and info is so invaluable, especially in the highly stressful and often confusing world of having a child with special needs. Spending time with these lovely ladies gives me a sense of feeling fantastically normal and also totally understood and acknowledged in the path I have to face. I am already looking forward to the next Camp where my superhero mummy friends and I can talk, listen, learn, laugh, cry, eat, drink and take a bit of time.

It is said that time changes things or somehow makes them better, but in my experience you actually have to change things and make them better yourself. Easier said than done but I am working on it…

1 comment:

  1. Lovely to read that you are taking time to fill your own bucket. How can you give if your own bucket is empty?

    Thinking of you all often xx