We just want to Be

I have not written for quite some time. Not because we have had nothing going on, mostly because I found it hard to condense it into a small story and not sound bitter and twisted as I write it.

With the move to the new home, we had new things that cropped up which we never really expected. The first and biggest issue was the assisted transport. We had been approved and all was ok until we tried to change our residental address. Without going into details (long and confusing anyway) lets just say that their view was, we moved house, our kids are all fine now and we are not in a position where we need the transport for one. So, as a result, we have been told we are not getting it anymore.

What is prompting me to write today is this utter sadness and possibly even anger at the position we have been placed in now.

If I want to argue the point and get the transport back for my son, I will have to paint the worst case scenario and the “woe-be-me” clarifications in order to make their hearts bleed and hopefully change their minds. Now, I don’t want to do that! I Dont want to plead and cry and pull the “but my kids are disabled” card just so we get back what was so helpful to us. I am sick to the back teeth of having to explain all the “issues” and all the sad and bad things JUST so we can access what we are entitled to anyway. I don’t want to be the victim anymore.

What my husband and I have been working on for 10 years now, the most normal life we can give our sons, has turned on us and bitten us hard. Because we are appearing to cope so well and we seem to be much more able to overcome hardship and are so less likely to go crying to someone and begging for help, we are not even considered if there is something that could possibly help in a big way.

We don’t ask for it because we don’t want to be seen as weak. We don’t go to the shows that are on in town and ask to go in first “because we are special”. We hardly ever use the parking sticker, because we know there are less able bodied people in our shire who will need that park possibly more urgently than us.

We do this because we don’t want the boys to expect that for the rest of their lives, it wouldn’t happen. What hurts though is when suddenly the invitations stop because we had not been “noisy enough” at the various institutions who used to know us so well.

To tell you the truth, I have more important things to do in my days other than tracking down all those people who had once helped us and fill them in on our issues. I use the time I get alone during the day to forget about the problems and the constant worry because it is my escape. I am “on-line” 150% when the children are home. I reserve my right to switch off when they aren’t there. I am not about to chase up someone about something which we might need one day when the need isn’t there yet. My time is precious.

So what did I do about the travel assistance? I wrote my letters, I am waiting patiently for a reply and I am NOT holding my breath for any results. I am over this whole lot and I have gone and applied for a bus pass. If I have to travel to school with them, so be it. I am not going to cry on some strangers shoulder anymore, this chapter is over.

We do not want to teach our children that if you cry and whine enough you will be given it. We want to teach our children that they earn their things and if something is given, it is accepted with grace and paid forward when they can. I will not cry and whine anymore, I will suck it up and work for it. It is generally the only way things happen anyway, you work towards your goals and you will achieve them.

We just want to Be.

With love and support,

Tarja

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1 Response to “We just want to Be”


  1. 1 source 06/06/2012 at 11:24 pm

    Awesome post ! Cheers for, posting on this blog dude. I will message you soon. I didnt know that!


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