Mollywood: From Will’s Point of View

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I would like to start this by saying as a young teenager I was not only scared but ashamed to admit Molly was my sister, I would as soon as “disabled” or “retard” came into the conversation, like every other subject, avoid it. That was my guard I created for myself. If I had no input there would be no output and therefore no outcome. As I have grown, thanks to the journeys and friends I have made along the way, I have became more confident to speak on this subject. Molly has changed my life, she has been the shadow to my Peter Pan! When Rob and Tom were getting up to whatever they were me and my Molly were always together. Weekdays we had with my Mam I briefly remember but Weekends with my dad and Emma I will never forget. Until I got older and the gap got wider, people would always tell me I was Molly’s protector but to me I was always just her big brother, the hardest thing has been watching her decline. I don’t think I ever really thought the more I grew the less Molly would. As my shadow it was hard to watch her go from such a beautiful little girl to a woman who has no function or say over herself, still beautiful regardless. I do believe this has affected me more than I know but at the same time I think “Get on with it Will!, Molly has to go through far worse”. When I think of memories, one sticks to mind. I had to pick up Molly from school one evening and when I got there she was surrounded by a puddle, I could see kids laughing. Molly had weed herself, I ran and grabbed her and we walked home, that will never leave me because I know how hard it was for me as a fully functional minded person to be in that situation, I always wondered what was going through Molly’s head? Because that would have scarred the best of us! I have so much to tell you about our Molly! Because as the story seems go down and out she has never not made me smile or laugh, she has made me see the beauty life has to offer, one smile from my our Molly means a million smiles from anyone else so for that I will always thank her. I can be 100% William with my Molly and I know how rare that is! X

PTSD

October 2019

Well who would of thought that I would be diagnosed with post traumatic stress disorder, I naively thought that was a disorder relating to soldiers so it is ironic that recently I said “call on your army”.

I have been struggling to think and at one point couldn’t even bear to have the radio I couldn’t bear any distraction at all. I was certainly overloaded and not sure how much more I could take before I completely lost it.

So I gave in and went to my GP and asked for help, I already have counselling so the next step was medication, I was at this stage prepared to try anything. I had been offered it before but had always declined. This time I was happy to take it!

Within a couple of weeks I felt less anxious and could concentrate better. Slowing my thinking became more positive and although the situation hasn’t changed and most likely won’t I was coping with everything again.

So pleased I am feeling better and can look to the future again. An acceptance of life the way it is that has brought me peace.

There is no going back I have to fight on…..

Luv C x

Call in your ‘Army’…..

Well it’s been a turbulent couple of months, a turbulence I have dared to rear it’s ugly little head!

Mental health warning signs, I am hyper vigilant to them naturally, no one could go through a mental health sectioning experience and not be!

‘Mother knows best’ is so true no one can see what we see and I have been having flash backs relating to Molly’s pre and post section which have literally shook me to the core (Adrenalin is a weird thing you know)

An adrenaline rush is one of the body’s vital defense mechanisms. A stressful situation will trigger the release of the hormone adrenaline, also known as epinephrine, into the bloodstream.

Any way that said as a parent you have to “keep on keeping on”, call in your army, social worker, community learning disability nurse, provider of care, Psychiatrist, everyone and anyone who can help! Even when you are unsure what’s going on best be curious and honest and get your concern out there and most importantly off your chest, you can‘t and shouldn’t try to shoulder anything like this alone.

Safe to say my army is aware.

Molly has had a few physical issues cold, ear infections etc recently and her mental health is due for review soon. Her physical health needs to improve before the Army can assess her – that’s just how it works…..

Staff have supported Molly to lose over 2 stone in weight now since discharge so that is very positive and she does look so much better for it, only 2 more to go Molly!

Molly is back with a group she used to go out with prior to her becoming ill, so lovely to see her rekindle old friendships and of course get her routine back.

Just a little update which helps me track progress and also to reflect back upon.

Luv C x

Penny for them….

Penny for them, what I wouldn’t give to know what is inside your pretty little head, what do you think, what do you see, how do you feel?

For me I mostly want to know are you ok, are you happy and do you feel safe?

I am you voice and your advocate – am I doing ok, do I do everything the way you want it done?

I hope I can read you like a book but I never know for sure, I can only try and pray I do, I try to walk in your world and to make it as good as it possibly can be.

Short and sweet message to my Molly

Happy Bank Holiday all!

Luv C x

Abandon……

Once a year it is recommended that we ‘abandon’ go on holiday, leave life as we know it, take a break. This year I was lucky enough to be abandoned in Juan Le Pain on the Côte d’Azur with my dear friend Catherine and her lovely’s daughters Jess and Lucy.

As my flight approaches London I started to feel a little different, I have obviously missed my family but not sure I have missed my life. Having true time out and abandoning your routine gives you space inside your head, hey I have space again!

I am learning not to feel guilty for looking after myself, this in turn helps me cope with whatever life throws at me, it’s all about being resilient I feel.

Coming into land soon so will continue one I get updated on my girl Molly and how her week has gone… back to life back to reality, now let me see.

This is actually the 1st holiday in years that I have not had to worry so much about Molly as she now has her own place and is being cared for 24/7. Still had some worries naturally, we all do but this holiday certainly had far less than usual. I have read two books, ate beautiful healthy food in amazing restaurants whilst resting my feet in soft white sand – yes, sometimes eating Shirley Valentine style…. I have attempted yoga every morning, except today (packing to do), swam daily either in the pool or sea(not exactly swam – more of a dip tbh). The sun has shone from daybreak until setting every evening and the temperature was just perfect.

Au-revoir Juan Le Pains

Full house….

The third tenant moves in next week, great news let’s hope the move goes well for her and her family!

It’s not the easy road to take but a forward thinking one in giving our children the loving push for independent living.

Met the neighbours at the weekend – they are a breath of fresh air – so lovely 😊 instant connection, another box ticked!

Molly, what can I tell you? More good days than bad, we do church on Sundays, I see her every weekend, she is going to more social events – not sure what she makes of it all but good that she is trying her best and having a go…..she has lost her first stone at slimming world and I must thank the staff team for their support and keeping her on track!

Me – I still struggle leaving her on Sunday’s but by Tuesday I am back in my work mode and accept I just have to get on with it. I truly hope in time it will get easier, stressing is draining and no good for us at all. I am getting better at keeping on keeping on in fact I am becoming a pro!

I have said this before but I would like to reiterate how much I wish Molly could express her feelings and talk to me more. She hardly said two words over the weekend and thats hard, it doesn’t mean there is a problem but would I know if there was? She is complex but I love her – end of.

Molly will be 23 on the 14th June I hope she has a wonderful birthday and pray she settles more and more with everyday that passes.

CPN visit today went well, seeing Psychiatrist later in the month and hoping the antipsychotic medication dosage can be reduced at some point soon.

It’s almost 10 month since Mountview was purchased and it’s hard to believe how far we have travelled to get to this point. The future is unknown but I want to get more comfortable with it all now, start taking life less seriously, less striving more chilling, more fun. That would be nice…. 🙏🏻

Luv C x

May I …..

It’s almost 3 months since Mollys discharge date, we had a new tenant move in two weeks ago and the third will join them early June, ‘Full house’ wow!

I have spent the weekend will Molly who is doing so well, she has lost 10.5 pounds now in weight and finding her feet now in her new routine. No tears this weekend, I loved every minute I spent with her, she is often my rock and I wouldn’t know what to do without her….. not a lot else matters, this is our life and all we know and as of now I feel excited about the future and pray the journey ahead is smooth, also knowing that if it isn’t then we are ok and can cope with that too, that we know what we are heading for and how to deal with the ups and the downs.

Couldn’t be prouder of Molly, normal life is such a challenge for her, little by little I am giving her a loving push to be the best she can be.

I attended an Expert by Experience panel this week and what I learned was that no matter what age, race, gender, circumstances these patients are relying on this system to support them, find the best solutions, ensure actions are carried out and that the patient/person is at the centre of all decision making. Giving back from my experiences truly felt amazing and hopefully will help with a rippling effect!

As I continue to advocate for Molly I feel a shift toward another ‘why’ which will be to support others experiencing either being or potentially being sectioned under the mental health act.

19.05.2019

After a 48 hour shift (including two sleep overs which were good, slept like babies) I have arrived home to an empty place and began to unpack from the weekend. My weekend starts tomorrow – a day to reflect and pull myself together in acceptance and try and understand that although Molly has her forever home will she ever understand that ? Will it ever get easier to leave her? Have I done enough and made the most of every precious minute? Do I portray the real me who constantly tries to be brave and feels tired of waiting for this all to feel natural. Can I accept that this is the way we will always be and can I learn to accept that the road we take is the way forward. I stand strong in my faith that all things work for the good in those that know we all have a Heavenly Father who knows every hair on our head and knows what I need before I ask.

My prayer tonight is to bless the girls in Mount View, the staff and their families, give us the wisdom and grace to support this project in everything we do Amen.

Luv C x

Thank you to all who read and support this blog.

Let’s start living…

Those were my last words on the previous blog and to be honest I meant it but today I don’t really know where to begin.

I am living of course and I do try to do my best but there is always the day that comes and knocks you off your feet again and yesterday was one of them! My Molly wanted to come home, she broke down and cried.

Today as I reflect I feel very angry and upset – why has everything got to be so hard?

When Molly my 22 year old (who realistically is so so much younger) cries and tries so hard to be brave, fear explodes inside of me. I drove away from the house in tears and full of rage, feeling ‘woe is me’ not pretty but good to be real and feel! (So they say)

I think” I know best” but I know I don’t always, I search for answers which maybe I won’t find.

  • We took some flowers and eggs to Edenwood, could that have stirred something inside her, did I unknowingly make a big mistake?
  • I didn’t stay for the weekend as I have done for the past 2 month
  • late transitioning of the 1st new tenant.

ASC – your turn now:

You should again look at your processes – you don’t realise that you are making decisions around budgeting without fully considering the people you are impacting. You can go to work then leave for the weekend while others are left to pick up the pieces – I am sorry but in my opinion and experience you act too slow – be it policy or government to blame I believe you could try harder, Mollys lessons learnt was probably a tick box exercise to appease me – by the way it didn’t.

My lesson learnt this weekend it to NEVER forget that trying to spontaneously do normal things (just by default) doesn’t work, always stand by and do what you know works and if changes have to be made then make every effort to plan and prepare, explain in ways your child understands, do not assume it’s ok and give family and staff as much information as possible so they take on your experience as their mother/father who would ultimately die for them. I don’t think Molly has fully understood what was about to happen and now we all suffer the consequences – planning is key – always and it’s mandatory not an option!

As parents we can only live and breath if they, our special children are content – happy and accept that it is for the best that they don’t come home….

or is it? – inner voice – please shut up and give me a break!

Right gonna get up now and keep on keeping on ..,.

To all of you battling out there sending 🙏🏻 and ♥️

Luv C x