'I love you' doesn't even touch the sides

I am very lucky to have true and real friends.
I feel loved and supported in ways that are hard to express and 'I love you' doesn't do it justice.
I've discussed unconditional love over the last few weeks. My mum and dad give it to me.

It was always made very clear to me as a child, 'I will always love you, I may not always like you or the things you do, but I will always love you.'

I have found and cherished those friends who I love unconditionally and I feel I collect them. Bring them into my life but perhaps in truth they have collected me. Kept me as close as I've kept them. It hasn't mattered how long the gap or that I don't remember certain details. Usually the names of their family, it matters that we care and the certain knowledge that we will do all we can to protect that.

It means that I walk my life with confidence.

Thank you wonderful friends. You are a small and precious group of people who I treasure and value.

Fragility

I visited my uncle this week, he has moved into a new home, much nearer one of his children. He has never been a strong looking man, a small frame in many ways, soft features and a gentle nature.
I know him as a kind and generous man, I don't agree with much of his politics but we have happily skirted around this, we have theatre in common and we have enjoyed meeting to go for a number of years.
Now he is frail, and is doing his best to not show it.

Along with his change, I saw over the time with my mum and dad that they too have become more fragile in many ways. Unable to do as much, unable to see the positives, unable to communicate and unable to see much joy.

My dad asked me to try to stay positive, no matter what happens.

We were all fragile at times, all easily bruised and occasionally the self protection made each of us snap, angry, lack empathy. It was a hard time, it was difficult to see and it was time I'm glad I had.

Holy day of obligation

My birthday went well, I stuck to my resolve and it felt good.
I went to mass, and as uneventful as that used to be, this time I bumped into one of my old teachers and had a nice chat with the man in the pew in front of me while the holy ones went for communion. He asked why I was't going up, right there, I knew, "you're not catholic", we don't ask we silently judge. I was right, of course.

The words have changed a bit since I last went, much more 'with your spirit' and it felt a bit Handmaids Tale. I wondered if I would feel differently, it feels comfortable and safe in church. I know it, I know the routine - I was annoyed they have changed some of the words. The pattern and routine of mass was such a familiar part of my life for over 20 years.

The first reading made me smile, it sounded mystical, something about dragons with 7 heads and more crowns and then the second reading was one I remember hearing, about Mary's visit to Elizabeth. I was amused by the last line. 'And she stayed about 3 months.' So ordinary, so like my life, 'oh we're staying for a couple if weeks. The sermon did its trick, the priest related the Gospel, the feast and the readings to us, to our lives. How we have accepted the struggles since we were Baptised. Umm, nope, I didn't, I don't recall the event, let alone the acceptance of the struggles of life. My mum has lost a son, she lives a burden and she is suffering, we didn't choose this.

Later that afternoon my friend came over, I've known her since I was 11. We know each other well. It was a lovely normal catch up. I recognised how now, that in our 40s life's struggles have been with us both. Possibly in equal measure.

And in the early evening, we went for a  meal at our local Indian and it was good, I sat next to my dad, I helped him, I made sure he ate and didn't spill, I tried to keep him in the conversation loop, but it felt forced. He fell asleep a few times. I wasn't sure how he found it, I was afraid to ask. I look at him and I can't help but see a possible future. How will I manage it, will I let my daughter feed me in a restaurant?

He wouldn't do it if he didn't want to. I know that.

More wheelchair experience

I've learnt not to walk by his side now, one squashed foot later and I know he needs more space than last time.

Wheely bins on pavements are a huge frustration.
parking on a dropped curve,
not cutting back your hedge - please do it
rubbish  - it gets caught in wheels
passing in front of the chair - go behind it isn't that hard

and more
but I'm ranting

Going back to my original home

Not tomorrow, but the day after I go home.
The original one, well nearly.

I had a very happy childhood, I don't have any bad memories from my earliest years. I remember love and joy, space and family. Our dog and seeking attention from my brother and sister and sometimes mum and dad.

I've been told we didn't have a lot of money but I never felt poor or that I was missing out, because I wasn't and I didn't.

My parents gave me that and I will forever be grateful.

Naturally things change, I got older and life became more complicated but that start was the best anyone could wish for. I started off happy and optimistic and that habit won't go away. Perhaps that is why when a few years ago the unhappiness was daily and my daughter was suffering we changed things. I'm so glad we did. Me and my little family took decisive action.

I am happy and content almost all of the time these days.

And perhaps that is why I'm nervous about going home. When did they stop being happy?

Of course we laugh and enjoy life as best we can but there is a deep sadness that remains. It's easy to think it began when my brother died. No parent can truly be happy again after that. That would make sense. And how can you be happy when you have been forced to live a life that is less than you anticipated. My dad, barley able to feed himself, carers in and out of the house, limits on daily activities. Not the retirement they had in mind. My sister, still a stones throw away, bound by her belief that she has to be there, to visit, to listen, to send her children around. The negativity that surrounds their daily grind. I can't look.

Is it wrong of me to want to escape that, to have gone so far away?

It is in no small measure a selfish thing to do, to have gone away. I didn't know when I set off to start a life in London that that was what I was doing. It was the biggest step I'd ever taken. And each year on my brother's anniversary I knew I was so very far away.
I got on with it. I went to work and I had a normal day and I called home. It is a day they let themselves be openly sad. They allow it to fall around them on that day and don't try to pretend and on that day I pretend the most. I pretend that it is any other day, a normal day and it is so far from it.

So I'm going back for my visit, I'm feeling anxious and steeling myself to absorb what needs to be, or take up what I can while I'm there. I intend to listen more than talk, I intend to sit on my dad's bed and listen to music with him. To walk with my mum and the dog, to get my mum to do something new and different and to try and laugh a belly laugh, but not at my mum's expense (cheap shot). I intend to go to mass with my mum and hold her hand. I intend to encourage my daughter to talk to my dad, as best she can. I hope that by doing that, even for just a short time I can bring some happiness into their lives. And as I type that I know I will, by virtue of being their daughter and having come home to visit. And then I will go again and leave a gap.

Reaching out and making connections

Sometimes it doesn't feel like reading about other people in the same situation will help. However, when they understand, are strong and weak, capable and know what it means to fall apart it can be such a comfort.
A complete stranger and their story often helps me feel more normal despite my defect.

Through my recent delve into Twitter Claire reached out

auntymbraintumours.com

Here is my first guest post

It's  her about page... you'll see why we connected

Hi, I am Claire Bullimore

I am the author of A Brain Tumour's Travel Tale and Founder of Aunty M Brain Tumours.

My goal is to raise awareness for brain tumours and support any person who has or had a benign brain tumour.

This blog is here to give my opinion on a number of this that I feel with be helpful to a person who is affected by a brain tumour.

This blog is part of the social media platforms under Aunty M Brain Tumours. People can connect on the Aunty M Brain Tumours Facebook Page or Twitter. There is also a private Facebook Group where you can speak to others and support one another.

Aunty M Brain Tumours was set up in 2011. Social media was only just getting going, and there were very few places to find support online for brain tumour sufferers, or survivors unless you searched the web hard.

Why the heck would I want to get involved with brain tumours?  Well, because being told you or your loved one has ‘a brain tumour’ is a life-changing event, whether it is cancerous or benign.

I was told I had a brain tumour in 2008 when I was only 25. I had a 10cm Intraventricular Meningioma and had to go through surgery to have it removed. I know the struggles that come with this devastating diagnosis and the life-changing effect it can have on a persons life.

Claire's MRI Scan of her brain tumour in 2008

I started Aunty M Brain Tumours on the 23rd May 2011. It was my 3rd Cranniversary. I wanted to celebrate my 3rd year since my brain surgery (craniotomy) and start something new.

I set up a facebook page to connect with others. That grew and I was soon on a number of other social media platforms with over 16,000 followers. In 2013 I was invited to be a radio presenter at a local station which was via podcast and was able to have a show dedicated to people affected by a brain tumour. I interviewed a number of people and you can listen to their stories HERE

To show I am not just talking the talk, I also walk the walk. You can find me in a number of publications raising awareness for brain tumours. Such as The Sun, Choice Magazine, Best Magazine and Bella Magazine.

I went on a UK Book Tour to promote the first book and was able to do this through Crowdfunding. I met so many wonderful people See Photos

I am here to inspire and motivate you. Let’s do this journey together.

Claire

x

time and choices

This is the long holiday, a time to catch up and spend time with people.

Understanding the time line

We've spent time catching up - it's a lovely phrase and a lovely thing to do. Sitting with family, making sure we all know the main events of the last year or so, the big ones to come.
My cousins have been in life for a very long time and I find it strange still to know they are grown up and adults. They will always be my little cousins.

Yesterday we talked of my dad, they have spent more real time with him in the last year than I have. I thirst for their experience and want to know the details. Their perspective. I think it will help me next week when I am with him and when I see him again in all his disability.
I find it so hard to see anything else and part of me is a little ashamed of that.
My excuse - I don't want to see that reflection in my mirror. I comfort myself that that won't be me but I know, logically and emotionally that it could be, different but the same.

I don't say it often, but yesterday in response to a common question about plans, I reminded my husband that both brain tumours have caused issues in an unplanned way, both were not in the routine scan phase, both caught me and everyone else, Drs included, off guard. I checked my little girl wasn't in ear shot when I said it. I need to protect her from unnecessary worry, she's like me that way.

I have a headache today, and my husband has noticed I'm guarding my left side more. When he notices things they feel bigger. I've felt a change in my blood pressure. But then I know that in recent days I've changed my routine, done more exercise, haven't had any drink for a couple of days and started taking my hydrocortisone more regularly. I'm looking after myself and yet I can't sleep well and I'm more worried than before. Too much time to think, too much time to worry and I do.

How long can my current dream last? Anyone's guess.

I cope by making a variety of plans, by putting some money aside so I know I can pay for a stupidly expensive flight and operation if needed. I plan for next year, 2 years and more. I pretend I know what I'll be doing in 10 years time but that always stays vague, and usually - be a Head Teacher. It's a realistic goal and one that keeps me focused on what I think I can do. I'm not sure I want to be there, a big job and stressful. I think I'd be good at it.

Real life keeps me going.

Vision Express

They mean what they say, into a small room three hi-tech machines and within 15 minuets of arriving I've have 4 eye tests to a level of sophistication done that my 9 year old self would have only thought a sci-fi dream world.
I know about eye tests, if you've look at previous posts you'll know. I've been though the horror days of yellow dye and pinning my eyes open.
Yesterday I was a good citizen, I let the new options (more than one) look into my eye and the post graduate who had never seen one in a real patient. I was a teaching tool.
I enjoyed it. 
I felt useful.