Will She Always be Tube Fed

tube_fed_1290_887_60_int_sMy Latest Commission piece for firefly


It Occurred to me Recently

That life is fragile. I know we all know that but I’d say lately more than ever I have felt this the strongest I have ever felt it.

I turn 30 soon. For some reason a lot of people attach a lot of meaning to it and it has sort of become a bit of a stigma. “By the time I’m 30 I want to have…” sort of like an early mid-life bucket list.

My issue though is this. As someone who has a compulsion to overthink, overanaylyse, and ascribe meaning to everything… why do we place so much value on lives when they have ended? When you tentatively click maybe or cant go on a party invite… woule you have that same response if it was to rsvp to a person’s funeral or memorial? If so, why?

Is it because you are in day to day mode trying to juggle different responsibilities? Is it because of logisitics ie childcare or work responsibilities? Would those things apply again if it were a funeral or would exceptions be made and plans in place?

Your attendance to that funeral matters far less than your attendance whilst that person is alive. It’s about making that person know that their life has value whilst you are there to show it, not when they arent there.

Do we care so much when someone is gone because it highlights our own shortcomings? Is it a reminder or the times we werent there so we go to feel better about it? I know not always. But sometimes.

Is it because in a moment of assuming immortality we think there will be a next time? We become so complacent in routine that this time doesnt matter, there will be other times.

I am guilty of all of this myself. I dont say this to call anybody out or make anyone feel bad. I post it probably because lately ive become quite introspective, with that usually comes heightened anxiety and awareness. To think of people leaving their home and to never return because of an attack petrifies me. Those who know me will already know what an anxious wreck I can be… lately this is intensified. I feel a level of perpetual but subdued grief, but simulataneously a level of desperation to have purpose, to feel value, to help people. But anxiety can be debilitating. I can think one thing and do the other.

I can feel an urgency to complete tasks and yet be barely able to move. I can feel a desire to just lay face down in a pillow but be frantically working through a huge list of jobs. There can be a colossal disparity between what i feel and what i do. I hope soon this will change. I have plans, i have value, i have a purpose. I dont want to live feeling at any moment I or indeed anyone around me could die… but I do want to make sure all of these people, including myself know that they matter, hugely.

When upset and unable to process things I tend to end up writing. So here I am. Sat in my old house, empty and moved out of, almost ready to sell.

I am upset today because of what happened in Manchester. Not just that, but the devastating trauma so many have been through at this time.

When I realised Martyn was missing I thought initially “I’m sure he will turn up” and stayed in denial. How could something so inconceivably unfair and awful like this happen.

I didn’t know him well at all. But he definitely touched my life and I will never ever forget the impact he made on me. He made english class in college so much fun. He has a real positive energy and charisma about him. He always looked amazing and he could always make everyone smile.

I remember my surprise at seeing him on come dine with me and tattoo fixers. I remember when he helped his mum sell out her etsy shop. I loved every upload he did about emily bishop, every costume/dressing up event, every funny annecdote he shared from life.

Like i say, i didnt know him well. But he always inspired me to love life more and to have more fun. I am so sorry this happened, my heart aches deeply for close ones at this time. Know that this beautiful person made a big impact on a nervous college girl and will always be remembered fondly. I have not one bad word to say about him. Rest in peace. I hope mariah and coronation street fill your days in heaven.

If i see any fundraising for martyn or indeed any other victims of this atrocity i will put the links here in my blog.

Still Here, Waving Emphatically

Good morning everyone. I have no idea why but I am compelled to write a little post. I don’t have a topic in mind, I just wanted to keep this blog active and assure everyone I am still here. I have been working on a few contracts with firefly lately so I have actually been actively blogging but just elsewhere.

Nothing much to report. Today I have woken up with a hangover… weird thing about that is I didn’t drink. I guess I mean I just feel really groggy today. Got a raging headache. Yesterday we had a family day out in Buxton. It’s a really hilly place in the countryside and yet simultaneously the most wheelchair user abundant place I have ever been. As you know my daughter is a wheelchair user and even taking turns pushing with phil has still rendered me an achey jelly-like mess today. It was a good day, however Amy has been quite agitated recently and we aren’t sure why. She had a bit of breathing difficulty the other day so hospital gave us an inhaler and she seems to be better in that respect.

I am really pleased this morning, left Amy’s ipad at my mum and dads but then remembered the trusty kindle. Not been able to charge it for ages but just found a way with a USB. Not really news that is it.

On the housing front things are looking promising. I have my fingers crossed that in the next week we will have news that will transform our lives. But again, fingers crossed. Nothing is set in stone yet.

Eczema? Still an issue. Actually hurts typing right now. Anxiety? I’m pretty tense and stressed out. What else. Oh and yeah we have a wheelchair van now so that’s great. He’s called Huey.

I will leave this here. Amy’s my little pony episode is ending and I need to get ready. Here is a picture from the weekend. Myself, grandma and Amy. My dad took this. Amy went on her first ever fairground ride that morning.


Complaint About parking

Good morning.
I would like to express my disappointment regarding a conversation I just had with your parking team.
Approximately a month ago I applied for a disabled bay to be put outside our house. We have a very big 3 year old little girl. She has severe athetoid/quadriplegic cerebral palsy. She is completely tube fed and a full time wheelchair user.
Most days we have to park a street or two away from our house and due to the unadaptable nature of our home we have to carry her into the house as opposed to in her wheelchair. As you can imagine she is very heavy and also has medical equipment that she is attached to 24 hours a day. She has dystonia which is unpredictable sudden muscle spasms – keeping her safe whilst carrying her can be very challenging hence our need to be able to park outside our home.
Opposite our house is a busy car garage. They are lovely chaps and keep our space clear. But the visitors to the coffee shop, shoe shop, take aways and school all park outside our house constantly. Sometimes I have to leave my child in the house alone whilst I quickly move the car. This is not safe, but my only option. Even with a blue badge this doesn’t help on our road.
I applied for the bay and attached a copy of our v5, proof of DLA and all of the blue badge details. In saturday I received the forms to apply for a bay. I was exasperated – why should I fill all of this again when I had already spent an hour doing all of this?
Disconcerted and confused I phoned your parking team. The lady was friendly but all I got was the usual “all I can do is..” “I can’t do that…” “what you’ll have to do is…” – basically fob offery. Her only solution was for me to fill out all of the forms again.
Unless you have been a relative to someone profoundly disabled you will never quite understand the level of paperwork involved in ensuring their needs are met. It is unacceptable to ask me to do this again and frankly I am insulted.
Reluctantly I have just resent it all again and spent quite some time refilling it all in. However I am aware that now I have submitted all of it again I will be subjected to another 20 day or so wait. I asked the lady “how do I know that after 20 days you aren’t just going to send all the forms in the post again?” and she couldn’t answer that.
PLEASE do not make me fill this all out a third time. We really do need this bay, we wouldn’t apply unless we were absolutely desperate.
Understand that families like ours do have additional needs and are very busy. We spend a lot of time in and out of hospital visits and various other things – parking should not have to be such a contentious issue. We already see daily how people without blue badges feel they can still park in a disabled bay, or how people block cars in and compromise ramp access etc.
Numerous friends of mine have since spoken of similar issues with the council in applying for these bays saying that they too had to do constant call backs chasing these issues and re-filling documents out. This is ridiculous and needs to change. I understand everyone means well and you are probably all a team of efficient and hard working people – but you need to understand as closely as possible the implications of delaying/losing people’s requests.
Please do not remove my post. I would be more than happy to discuss further if necessary – I have already wasted so much time on this issue that some additional interaction should prove no issue.
I don’t want to have to escalate my complaint or begin writing to MPs, I just want people to fulfil their promises and work WITH us, not against us, understand that my anger comes from a place of wanting an easier life for my family and I, and that your operators should be telling us what they CAN do, not what they can’t.
Thank you in advance,
Kind Regards,
Miss Ceri-Ann Brownunnamed.jpg

Just Checking In

Hello everyone. 

Humble apologies for my lack of posts. As you may have noticed I have been busy with a few commission pieces and aside from that the weeks seem to be passing me by so quickly. It is amazing how fast time can pass. I noticed our local garden centre is selling christmas cards already!

Anyway. Nothing too dramatic to report really. Been quite pleased with how things are going. I had an operation on my womb… It was only minor surgery and keyhole at that. So that has been a relief to have over and done with. 

I leave this here for now. Enjoy these pretty flowers I recently encountered at manor park. I plan to write more posts soon and I hope you are all well. 🙂

What I like about being in hospital with my daughter

Not really a real post. But it half amused me. Badly typed as done from my phone in my sleep deprived state. Picture is from our breakfast routine at home (daughter is tube fed)

I am Feeling angry about the bad stuff like ongoing feed issues, fob offery between different specialists, my little girly not feeling well…

What i like about staying in hospital

– when you get a really nice nurse who gets your stupid humour and you can tell genuinely cares. And they stay and chat and interact with your child. (They still manage to get stuff done too. They just never stop!)

– when the child goes to bed and you get to go to the parents room for a hot chocolate

– the chewy toast that gets brought to you in the morning. It’s basically breakfast in bed! (Ignore the no hot drinks rule and see above). I actually like that toast now. 

– when you feel like youre camping 

– eating chocolate in bed

– people feel bad for you and bring you stuff

– because we are in the sn community we almost always have friends here (that’s kind of sad but weey solidarity and social life)

– everything is really clean and someone empties bins for you

– when you get a cubicle and not an open ward and you set up a home from home

– the handwash doesnt destroy me like it does everywhere else

– it’s like a boring budget holiday where the climate changes rapidly. Actually that’s not good. It goes soo hot then freeezing. 

– the showers here always have really good pressure. And you get clean towels every time. 

– you learn to not have dignity (i snore loud)… It helps you not care what people think. You can also talk freely (and are encouraged to) talk at length about poop, mucous, gastric emptying

– there are different toys to show your child. And because theyre unwell they are sometimes more placid and accepting of new things

– there is water machines everywhere. And plug sockets 

– a microwave meal seems like a treat after chewy toast and constant prepacked sandwiches

– you can rant about ENfit tube accessories and everyone around you understands what the hell youre on about. You even make jokes about feeding pump rage (pumper’s rage)

– you learn new parameters for timing. Here is like an alternate universe where 20 minutes is actually up to 4 hours. You learn patience and assertiveness