Sunday, November 22, 2009

Guest Blogger: Grandma's Story

Well, you guys are being spoilt this week....3 blogs in a week!

A few weeks ago I promised that there would be the occasional guest blog on here. I knew Mum had been itching to give voice to the thoughts in her head so I gave her the first opportunity.

I've just read her blog post. It caught me a little by surprise. I didn't quite realise that she knew exactly the thoughts and feelings that flow around me on a daily basis. It's not something that I try to dwell on daily or talk about....saying it out loud has a tendency to make things a little more real and I kinda prefer to distance myself from it a little and pretend that my life is normal. And it is normal when I compare it to lots of other similar families.

So here you go. This post was written by Mum (Robyn) and Ayla's Grandma. Enjoy.

I have just finished reading the latest blog entry and all I can say is wow. If that doesn’t give us hope for change then nothing will. The therapy is hard to explain, now we see the results and with the report we gain understanding. What we need to do is find the money to continue, and continue we must. Melissa and Steven put in all the hours of hard work with the therapy, and Ayla endures that therapy. So come on everyone help us to find the way to raise the money needed please.

When Melissa invited me to be her first guest on the blog, my thoughts were not what was I going to write about, but rather how can I find the words to express what I feel without going over board. I hope that I have achieved that.

As Ayla’s grandmother I would like to say that I have been there with her from the beginning, well almost. I don’t think Steven would appreciate right from conception. I watched Ayla come into this world, she was the most beautiful baby and the birth was spectacular. The beginning was hard, as things were not right, but we did not know what was going on. Many months and many sleepless nights for Melissa and Steven led to the diagnosis that they now have. This beautiful child now had a label that makes her different from other children.

Melissa has tried to say what that is like from her perspective and I wanted to say what the flow on effects were like for the extended family, however I struggle to find the words. I have a grand daughter who has to bravely fight for every movement that we all take for granted. I have a daughter who wanted nothing more than to have children without the complications, and to watch them grow and become independent adults.
When you experience grief and loss, you go to a place were no one else can come, not even those that you love dearly. I know that place; I went there when I lost my son. Now my daughter is there, and I want to be there with her, but I can’t. My place is different than hers. I guess what I am trying to say is that suddenly as a mother I cannot take the pain away and make it better, and I want to. I wanted my granddaughter to run into my home, and I wanted to hear her say “grandma, grandma, I’m here!”.

I feel a special connection with my granddaughter, I love her dearly. Beautiful? Oh yes she is, and if you take the time to look into her eyes, she communicates in her own little way. She is so precious and I will fight for her every single day that I am alive to do so.

Last night I watched a program on families struggling to care for children with autism, I work with families like those every day in my job. The support from Disability Services is non existent, as stated on the program. I know Melissa has said that they are good in her area, but I would ask ‘Good at what?”. Not financial assistance towards therapy, not emotional support when you crash. No early intervention centres, actually nothing that I can think of. Many mothers who hit the wall have phoned for support and they are told that it will be a week turn around before they can speak with someone. I had that response when Lis hit the wall, and it is not a nice feeling to know that you’re just a number, and who really cares anyway. Caring costs nothing but a little time and empathy, and you would think for in excess of $70,000.00 per year pay they receive, they could find a little of that. They dump and run on the community, well known fact, even they know that is true.

I feel angry at the system that does not help families and then prevents them from finding the means to help themselves. In this I refer to Melissa’s attempts to fundraise for Ayla’s therapy, damned if you do and damned if you don’t, Melissa never made charity status so that she could offer tax deduction incentives, and to run charity golf days etc

I have saved the best to last. Can you imagine what it is like to arrive at work and find your desk covered in knitted and crocheted items? Well I can, I experience this every week, delivered by my work colleagues, from acquaintances and even people I don’t know. Then I receive phone calls to come and collect a few things for the market stall and I find a whole bedroom full of items that have been lovingly made by 80 year olds.
These 80 plus ladies stand to the side, glowing with excitement that they have created these wonderful items to help my granddaughter. My work colleague’s needle felt flowers during lunch breaks and at home most nights, they sit at their sewing machines before work and after, to make items. Others knit and crochet for Ayla; some have never done craft before. One colleague offered to help make butterflies and asked “how do you do a purl?” I looked at her and asked “are you kidding” she was not. To the Betty’s, Rene’s, Myrtles, friends at work, and all the others (too many to name) I am forever grateful. Thank you Jean for enabling me to have a break from the markets, by going for me once a month. Ayla has touched many people along the way and we all thank you for your amazing generosity.

We take this journey one day at a time, and hope for a little miracle along the way. Money is now low for the therapy, and somehow we have to find the means to continue. We will I know, as my daughter will never give up while there is hope. I think those of you that read her blog, know what an amazing woman she is. I have always known that, but she is tired, and she is hurting, she strives every single day to find the means to help her daughter. It is Christmas soon and Santa may help us find the capacity,
(or the money) to do what we have to do.

Robyn – Grandmother, mother, friend and wife


Lavendilly House said...

Oh Robyn *wiping tears from my eyes* what a beautiful blog entry. I've know it has been difficult for Melissa and Steven but they do a damn good job of 'getting on with it', so I never realised HOW difficult it has been. It just isn't fair. It just isn't.

Robin said...

You said it all "sis".We have shared much with you along your way. Not that we could go there, but we watched and prayed, hugged and loved, cried with you, and hoped the pain would one day subside. You have grown very tall on your journey.Love robin.

Unknown said...

Robyn- What a lovely blog. I feel that I am living your journey along with you each day. Your blog brought tears to my eyes. Each day when I sit at my sewing machine I hope that the items I make can help in any small way and I want you to know that I will support you, Melissa and Ayla all the way

Melissa Luxmoore said...

Thanks Maria! You're a star! And you do a fantastic job.

Ren said...

I have just read your blog and am in tears... Ayla and Melissa are lucky to have you! I have a little girl with severe CP. We are just about to start the ABR journey... the time and money needed makes me nervous, but its the only hope we can offer our little girl, so we will find a way. Thankyou for being so honest- saying what so many are scared to say. That "wall" you talk about- we know it well. We hope to knock it down one day. With people like you and your friends in the world, maybe it will be possible one day.

All the best for all of you! xx

Melissa Luxmoore said...

Go for it Ren. And for the ABR will be surprised what you can achieve. Just do simple things that don't wear you out too much and don't take too much time away from doing the therapy....listen to me (like I don't do everything I just said...). Think of it as a creative journey...Hope to see you at ABR soon :)