Ever heard that term?
My question is for how long, day-in day-out, month-in month-out, year-in year-out… forever? Still I learn everyday how different the autistic world is and that if you can’t stick to the plan there are going to be consequences, mood changes and anxiety levels will rise until a safeness comes and that feeling of reassurance which washes over you like magic and then hearts stops pounding and order is resumed.
I feel what she feels and there isn’t always anything I can do to help, it is disappointing, upsetting and inevitable.
Keep pushing through is all you can do. Making a world of sameness and routine is not an easy task but when you lose it for whatever reason just do your best and pray that tomorrow goes to plan for their sake and yours.
Yesterday was better, Watchtree is a great day out and inclusive – being different is truly embraced!
Well well where to start? I saw Mollys psychiatrist tonight and you know for a moment there I thought I needed her more than Molly.
No one truly understands the impact of a journey like this on the wider family. I know I personally have had to accept missed opportunities, accept rejection, sometimes accept defeat, accept I need help, accept I can’t keep on keeping on and accept this journey has cost me in mind body and soul.
If I flip the situation – it is directing my path, it is empowering me and is making me less worldly and more spiritual, more appreciative, I believe I have been called to take the hard road, to help others, to be selfless, patient, kind and strong! There is a cost but this is not ‘all for nothing’ there will be a happy ending……
I have made a difficult decision to cut my hours at work and only work 3 days a week for the next 3 months so that I can take more time to work on the next steps and ultimately make it happen!
- Prepare the house
- Find another service user
- Research providers
- Furnish the house
- Apply for care package
- Apply for Power of Attorney
- Apply for housing benefit
That will do for now….going the self directed route leaves all the responsibility on you – can I please just reiterate that in all this time Social Services have offered only one place (and only very recently) the offer was never going to be an option so going the self directed route is in fact our only option.
Not sure I can resume back to my full time normal working hours after the agreed period so I will think about my future once Molly has one – a future that is.
I need the time to drive this project forward and I will do what ever I need to do to make it happen. If at times I feel any doubt I remind myself of my why? Once I made this decision I felt better, I know have made the right decision – off now to cancel a few direct debits – SKY your the first to go………..
“Difficult roads often lead to beautiful destinations”
I think everything is going to be alright.
Faith is the assurance of things hoped for – Hebrews 11:1. If you have been reading this blog you will know I have hoped for a long time that Molly will one day have her own home with the support she requires to live independently. Keeping faith is sometime hard and we can do often lose it.
Hope is not unlike faith in that it is a feeling of expectation and desire for a particular thing to happen. This journey had tested me so much it has made me realise that sometimes the time isn’t right and we need the power of patience, faith, hope and the belief that one day we will receive glorious news.
Glory an important achievement that earns someone great admiration. In this case it is two dear friends who I greatly admire and will forever be grateful because on 31st July 2018 they had their offer accepted on a beautiful home here in Carlisle that will support my darling Molly and two others. When I received this news I shed tears of joy, what a blessing, what a gift!
In the words of the late George Micheal……..
‘Cause I gotta have faith
I gotta faith
Because I gotta to have faith faith
I gotta to have faith, faith, faith’
Still lots to do but we now have our eyes on the goal thanks to Jeremy and Catherine who have always encouraged me to hold on and in truth made this dream possible.
Luv C x
First things first after my fabulous week away tonight I just want to tell you about my girl, so tonight I met up with Molly, the lovely Jean and her husband Arthur at church. Molly looked so well, fashioned by Jean in a gorgeous hippy style purple top, necklace, bangles and a wee touch of makeup. We hugged and kissed, it was so great to see her and even better to see her looking so happy.
She sang her little heart out in church and after the service she turned to a gentleman behind us and announced “I don’t like hot chocolate anymore by the way” I have missed being in Mollywood really!
Back on the ward I left her in tears, never easy, I don’t know how I walked away but you do because that’s how it is when you are sectioned (hopefully not for much longer).
Tomorrow I will be writing about ‘Faith Hope and Glory’ there is good news to share.
I will leave it there tonight, after a long day I just want to sleep and press pause for now.
Nite luv C x