Trees of Sanctuary

When is it the right time to give up the hope that a differently-abled child could have the same chance at life as a normally-abled child?

When does it become better to give up fighting because the stress I put myself under to get the support for my child is damaging my own health?

How many years should you fight before earning the right to abandon the fantasy that there is support readily available for those who need it?

How do I decide when the lack of support impacts less on my family than the time and effort it takes to actually secure it?

When is it acceptable to give up the struggle for support, knowing full well that any decision I make now could impact on the caring my other children will have to do in the future when I am no longer here to carry the burden?

When is it time to accept that words promising support are spoken, in the majority, by people unable or unwilling to follow them through?

When do the minutes travelling to weekly half hour meetings, that end up as twenty three minutes waiting and seven minutes of meeting, become too precious to exchange for the outcome of the meeting? Or the twenty seven minutes on hold to the government help line become more precious than the result of the telephone conversation? Or the three and a half hours spent filling in a form more precious that its result?

When should I allow the realisation that support of a differently-abled child is all just a matter of money?

When is it time to let my crushing feelings of hurt, frustration and anger put me off fighting for the support my child needs?

How many years do I have to soak up the accusations of my failings, the excuses, the lies, before I have the right to walk away and attend to my wounds?

When is it okay to actively turn my back on a system that could provide hope; when does living without that hope become preferable to coping when hopes are dashed over and over again?

When does living at rock bottom win over the risk of going under?

Last week I was challenged on the lack of information in Jo’s ‘Education and Healthcare plan’, the document I have been trying to get updated for 18 months, the document I was told on authority that could be left for ‘further down the road’. Last week I was told (incorrectly) by an official that it was outlined to me a significant time ago there was no chance of Joe’s placement continuing past GCSE, and that this official (who had not been in a single one of Joe’s meetings) had been present when I had been informed. I do not want to be dragged into this game of proving who said what; I didn’t record any of these meetings so who will believe me? Ultimately it would all be a pointless waste of energy; I can never win this fight. The bottom line is that Joe is being moved on again and I am left wondering whether this time it would be kinder to us all to call it a day, to accept defeat while I still have my family intact and a body which, on the whole, works well. When is it time to say enough is enough, that the fight for support is just not worth it? When is giving up the right thing to do?