Trudging Through the Mud

Life at the moment feels like when you’re trudging through thick mud. You’re getting somewhere, albeit very slowly. Every now and then an obstacle is thrown in to intensify the challenge and you continue because you have no other choice but to force your way to the direction you need to head in.

You look to your sides and the paths of others seem relatively struggle free, if anything they enjoy their terrain joyously with flashing rollerskates on as you wish your shoes didn’t have holes in. The holes let the mud in and start to fill your boot, your socks get wet and the mud adds weight to your already dragging, aching feet.

Honestly. This last few weeks feels like it has added about 20 years age to me. My whole body aches. I’m not getting a lot of sleep. It is either interrupted by crying child, or by my own nightsweats/night terrors.

I woke up today a bit disorientated because Amy isn’t here. She’s at respite. I feel relieved that I don’t need to do the whole lifting, fighting to dress her, cleaning of entire bedding set etc like every other day, but I feel a grieving feeling, and a guilt that she isn’t here. I feel bad that I can’t just do it all myself and that I need that additional help. I rang to see how she is, and she is fine. They said that yesterday was a different story – she was inconsolable, very agitated. Her behaviour lately is so up and down. Since she had that big seizure, and the few weeks running up to it, I have seen a big change in her. She is either almost sedate, non reactive, non sociable, a bit “out of it”, or she is angry… literally ripping her hair out, cutting her face, thrashing around screaming. It’s exhausting to watch, and probably more exhausting being her.

I’ve been struggling to get her the care she needs. The unreturned phone calls, the constant leaving of voicemails, the paperwork, the appointments we’ve missed or had to rearrange. To put it bluntly, it feels like people simply don’t care. We are changing GP. They declined one of her prescription requests the other day, and when I really needed an appointment for myself they couldn’t offer one. I just hope that this next one isn’t somehow worse. Amy has a controlled medication and loads of other ones and I usually need to collect a huge order once every few weeks. Some of her medicines come from hospital because our last GP refused to fund them. So like is usually like one big treasure hunt for meds you don’t want her to need, and also are not sure of the long term effects, or even if they are presently effective.

Whilst I had her yesterday her athetoid (involuntary) movements were uncontrollable. Her arms were like propellers and her mouth movements were reminiscent of seizure activity. I know that she is frustrated – she can’t verbally articulate her wants and needs, so to get her message across it can often come out in the form of lashing out – hitting, kicking, scratching and pinching. Trying to anticipate her needs causes me so many different emotions – frustration, sadness, hope, desperation, exhaustion, so many things. i hope that because we are only 4 years in that one day it will get easier. I am already working on getting her some bigger, and more relevant PECs symbols and though at times it seems futile as she won’t always register them, I guess if we don’t try then things will never change.

I have tried lately to pull myself out of my shell, to try and be my own person more and cultivate some new interests. I was already growing veg (mainly for guinea pigs) and going on lengthy dog walks… but I started rock painting, and also geocaching. The rock thing is getting me down slightly as it seems to be an amazing bonding hobby for parents and their able bodied children. I am still going to try and get Amy interested but right now the awareness just isn’t there and she is quite reliant on music or videos to soothe her. She loves being out and about, but we shall see how we go. I will try to collect some rocks and see if she will help me with painting them. Crafts and baking etc seem to not interest her, but I suppose she wants to do things that her motor skills DO let her do, she knows her limitations and she knows what she likes. Seeing people post how excited their kids are when they find the rocks, or when their rocks are found makes me really happy, but it also shows what we are missing. I noticed lately on our travels that children are starting to stare at her more. I guess the developmental gap is showing, and she is too big to be mistaken for a baby in a pram. I find the best thing to do is to try and open a dialogue with them “Amy, that little boy is looking at you, are you going to wave hello?”. I hate doing it, but I need to bridge that gap and teach people that just because someone is different we do not distance ourselves or stare.

The geocaching is harder because my phone battery dies so easily haha! It is however very exciting when you do find one.

I feel a bit like a tree that has been uprooted from the ground, and my feet are trying to reroot so I can ground myself and feel like part of the earth again. No matter where I go or what I do I feel entirely detached, almost like an alien observing the human species. I can interact with these people, I can forge polite conversation, but then I retreat to my internal monologue “they don’t get it. they don’t understand.”, “you’re annoying people, you’re pointless”. Seeing people park in disabled bays without a blue badge is enraging me… seeing ignorance and lack of compassion in the world is something that affects me deeply. I wish it didn’t, but it does.

You know when you’re a child and you do that thing in your classroom chair when you tip yourself backwards? Eventually you tip it just that notch too far and give yourself a shock… I feel like that A LOT at the moment. That jumpy, on edge feeling that something bad is about to happen. The calling an ambulance thing last week has triggered this, I have never been so scared and shaky in my life… and yet I know there are people out there who do this everyday for someone they love who has medical issues. I keep panicking that someone I love will get suddenly ill, or worse. And I want to constantly know everyone is okay because I cannot bear the thought of something happening to them. There are a lot of incredible people in my life who deserve nothing but happiness, love and success, and yet they are daily having challenges thrown at them. It just isn’t fair and I wish I could help. I feel so powerless to fix so many things that aren’t right in our lives.

I’ve tried improving my diet. I haven’t launched into a full blown diet as that will set me up to fail. But I have gained a lot of weight and am trying to make positive steps to improve. I have lost 7 pounds now in 2 weeks. I’ve taken some “before” photos in the hope that in two weeks I start to see a difference. I think I do already but the main point is to get more energy and feel better in myself… I’m no longer about trying to look amazing… it doesn’t work with my current eczema, anxiety and eye problems! Haven’t even been able to wear eyeliner in 3 days which is unheard of. I am also planning on some voluntary work. The school wanted parents who can help parents of newly diagnosed children, and the idea of making those early and confusing dark days for people even a tiny bit easier fills me with hope. So that will be good. My self worth is shot not having a “real” job. I miss the busy office, I miss the adult conversation and the banter (hate the word banter), heck.. I miss the money!! Carers barely get paid at all, there are no sick days, no holiday, and making plans you can commit to is hard… you just never know what could happen even an hour from now sometimes. It’s lonely, and it’s physically and mentally exhausting.. as I have found to my detriment this week as I have burnt out.

I referred myself for help the other day… it’s a self help thing that I think is linked to the NHS. I did it once already to help me with the grief from the miscarriages but I wasn’t in a place where I could try to fix myself. A few nights ago I had such a vivid dream. I was surrounded by people I know and they said “cez, we have someone here who would like to meet you”, and from behind them stepped out this beautiful little girl. She had long blonde hair, a frilly top, and leggings. She looked so alert and full of life. “Hello, who is this?” I asked. When suddenly, in the pit of my stomach I started to feel sick. “This is Millie.. you never did miscarry… we didn’t think you would be able to cope with another child so we put you to sleep and gave a csection… she has been raised by others for 3 years”. My heart pounded, I felt weak, I almost fell to the ground. The dream then cut to me lay on the grass with the little girl. “Mummy. Why do stars come out at night?” she asked. I pondered with her, trying to think of a child friendly way to explain the world and how it rotates. I smiled to myself at the inquisitive nature of children and felt thankful that I could help her learn about the world.

And then I woke up. Covered in sweat, roasting hot, heart pounding. Another dream about the lost children. I feel tearful thinking about it now. It ignites the hospital flashbacks of the csection, being wheeled a long rapidly in a hospital bed watching the ceiling tiles fly by. It was only half 4, I take myself to the bathroom to calm down and realise Amy’s feeding pump is alarming. I go to fix it and she is lay there wide awake and smiling at me. Life is good. She is alive and well, I can go back to bed for a few hours.

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(pictured is my amazing daughter. Who I am lucky to have)

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Click the link to see my latest post for Firefly

Dear Specialist

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,
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To the Lady who Heckled us Needing the Wheelchair Bay

This won’t be a long post but it is something that has been popping into my head constantly since it happened yesterday

So as a family we had enjoyed a day out at a wonderful seaside resort.. celebrating the 80th birthday of my amazing grandma. Going out with a child can be hard work.. going out with one who has a disability can be much much harder. The amount of planning and packing involved is considerable. I knew we were making the trip over a week ago and I had been worrying about it pretty much constantly since the plans were made.

I realise this might sound irrational but there is so much to think about. How will we get there? Should we drive? Should we get the train? Would she be able to handle the train? Does it have good wheelchair access on the trains and at the stations? Will she be okay with a two hour journey or will this cause a meltdown? And so on.

In the end we decided it would be best for all if we got the train. The train there was fine. It was the train back that is still causing me anger and grief. We’ve had numerous train journeys in the last year with varying success. We’ve had times where lifts weren’t working at stations and we’ve carried the wheelchair up many flights of steps, we’ve had journeys where people look disapprovingly at our daughter’s need for an ipad. I am somewhere in between shouting at these people, explaining why it is necessary and that we aren’t just lazy, and saying nothing. These days I opt for the latter and silently bubble with rage within.

We were getting the train home after an actually very successful and happy day when the train conductor began to urge everyone further down the platform. He was looking right at us wondering why we hadn’t budged. We shouted over “We need this wheelchair carriage”

To which a lady in the crowd retorts “don’t we all?”

I can only assume she thought our daughter’s wheelchair was a pram and not a wheelchair. Well lady.. you would be hard put to try and get one of these bad boys in mothercare! £2400 worth of biomechanically engineered, posturally supportive, heavy bit of kit provided by the local wheelchair services. My daughter has severe quadriplegic cerebral palsy… in fact if she had looked closer she would have seen that we actually have a feeding pump and a big tube routed alongside the wheelchair. We also have several bags for we must take numerous outfit changes, many electronic toys, spare feeding buttons, lots of medications and all sorts of things that you would probably not even consider when planning the average day out.

The lady in question had two perfectly able bodied children. I’m not saying she hasn’t had a challenging day. But what I am saying is why can’t people think before they speak?

She probably doesn’t even remember shouting that out to us but me being the emotional anxious wreck that I am… I am dwelling on it a lot. I didn’t let it spoil my day but it did make my blood boil.

Luckily thanks to the wonders of the internet and social networking.. invisible disabilities and much more are getting the awareness they deserve. For all she knew it could be myself with a chronic illness. My mum actually suffers various chronic illnesses and some days they are debilitating for her.. other days she copes like she did this day. To look at her you would think her to be just like everyone else but the truth is she can be in a lot of pain. She will smile through it and put on a brave face… but you haven’t seen behind closed doors. Just how you haven’t with our life.

We have seen our child go to surgery, we have seen her have seizures, we have had to learn to tube feed, we attend weekly physio, we have a while set of processes in place to ensure she doesn’t get curvature of the spine (scoliosis) or hip displacement which could result in agonising surgery. She most likely does not have that for her child. If our situation were not a challenging one we would not have been awarded a blue badge so that we can park so we have space to assemble the wheelchair. To that lady – have you ever had to do any of these things?

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Our daughter does not need sympathy… she has an amazing quality of life, she is a happy and bright girl. Her physical limitations do not define her as a person but we do ask that people respect that some people do need a little extra space or access. Accessibility is an unnecessary hindrance as is people’s bad attitudes. She does not judge you, so don’t you judge us.

The man at the station was so kind and understanding. He helped us onto the carriage, he offered us the wheelchair ramp, he helped a man using a wheelchair onto the train. He was a credit to the company and the antithesis of this vile woman whose thoughtless remark cost me my good mood. The wheelchair carriage enabled us to have the space needed to ensure our child was safe and happy. We aren’t just lazy parents. We don’t take advantage or lie. We are playing the cards we were dealt and accessing the community just how EVERY person should. Show some respect.

Think people. Think!

I should also mention that on this same day we encountered many individuals who were enamored with our little girl and were so lovely and kind to us. Unfortunately though, those people don’t always get a post dedicated to them. I will write a post some time about the lovely people I meet. Also – This blog is intended to be about any topic… I know i have done a few posts about my daughter now, but I just write about what I feel like at that moment.

(The picture I included is taken from this particular day out where we took my grandma to see “illuminasia”… our daughter absolutely loved it too)