Asking for help

21 Jul

Yesterday I spent a whole lot of my time on the phone, trying to navigate my way through the tangled web that is the world of ‘Disability Services’. The complexity of this system is really enough to make you want to throw your hands in the air and definitely just not care. I was transferred, I was put on hold, I was told that we weren’t eligible for this and we wouldn’t be able to access that. I did also speak to some very lovely people who would definitely be able to help us but of course there is a huge waiting list so….

It has become clear to us in the last month or so that we need help. We need help in financing equipment to make Matilda’s life better. As I get huger, things are becoming more difficult and a hospital bed which can be raised and lowered has become a need. With the imminent arrival of Matilda’s sister, we will also be needing a new vehicle to accommodate us all. One that is wheelchair accessible would make things so much easier. These things of course are expensive.

It is not an easy thing to admit that you need help, it is very humbling. It is uncomfortable and it makes us feel very vulnerable. With all of that said, we are amazingly blessed to have the very best friends in the world who have recognised our need, who have recognised our own reluctance to ask and who have taken it upon themselves to set up the fundraising arm of TeamTilda purely for our benefit. I cannot really express in words how grateful I am to them for this. It is like a huge burden has been lifted from us.

They have set up a TeamTilda Facebook page  – to campaign for donations and items for a raffle. A poster has also been drawn up to distribute to try and source funds for us. Team Tilda Flyer.

It has only been a few days since it all kicked off yet on Wednesday afternoon, I got the call that Matilda’s new hospital bed was already available to be delivered. A gigantic thank you to Matt for making this happen so quickly. A lovely man from Rehab Hire came and set it all up for her.

She is extremely comfortable and now that I have a single bed set up next to her, I am able to go in to her and not get kicked!

I will admit that I did have a strong emotional reaction to the bed once it was all set up in her room and the lovely man from Rehab Hire had left. It isn’t something that you should see in your 5 year old’s bedroom. But I know that she is comfy and I know that it will make our lives that much easier.

So already we have received such a gift and it seems so greedy to ask for more but Matilda’s needs trump my pride. If you are able to assist in any way, please contact Adam on 0409 888 369, or Matt on 0418 518 790 or visit the TeamTilda facebook page for more details.

Health Update

I am sorry to report that the vomiting does continue. We have learnt to live with it and certainly the new bed has made things so much easier when changing sheets! It is clear to me that Tilda is just not able to tolerate as much feed as she once did. I am going with the theory that as long as she is cheery, with wet nappies and not looking like she is losing too much weight, I am not going to stress over it. There is no point in trying to force her to take more in when it ends up coming back up anyway.

The good cheer is what is important and we have that in spades at the moment. School has returned and she is loving the stimulation and activity. Every day this week, she has come off the school bus smiling and we have a wonderful play in the living room with lots of giggling before her afternoon feed. As long as that keeps happening, I am content.

Much love



3 Responses to “Asking for help”

  1. Adam and cheryl July 21, 2012 at 1:56 pm #

    Wow, the bed looks way more comfy for her, but sadly yes, it does bring a sense of reality. Beaso did well there, good quick result of one of our achievements to be made. And never feel bad asking for help, everyone who reads this is your friend and wants to help you guys… Cos you rock!!!

  2. cally berryman July 22, 2012 at 6:06 pm #

    Sounds a perfectly good idea to ask for help.
    The bed for Tilda is a great idea, she looks very comfy in it.
    Hang in there the calvery will arrive soon with help. XXX

  3. Anne Bunting July 23, 2012 at 9:11 pm #

    Of course you must ask for help – that’s what friends and family are for and it makes us feel as if there is actually something we can to help rather than just leave messages of support. I’ll be in touch but in the meanwhile make the most of the pressure that is taken off you all with the new bed- it certainly looks as if it makes Matilda more comfortable
    Love Anne

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