Two Year Post Surgery Review …..

Via train, to Bristol! 

Was a great trip, we went to see the Neuropsychologist, Neurosurgeon and Neurologist. 

This is the trip in pictures: 


Reed was brilliant, feedback was that surgery was hugely successful and he is seizure free so that is all brilliant. Then there was the BUT!!! ….. 

They were amazing and great banter, amongst other things more technical we talked about Reeds behaviour like “he’s bouncing off the walls” “he is the most extreme we’ve seen” “we’d like to take him home, because he is so cool, but I would be exhausted after and hour”  they asked “Were is your support network” 

And thankfully they are going to write a strongly worded letter in support of much needed help and for our Exeter team to look at our family holistically. Fingers crossed we might finally get the support and specialist setting that Reed and our family needs. 

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Halloween fun run…. 

So we made it through another social occasion… the Halloween fun run…. will go into more detail of my recent parenting appifany soon but for now know we nailed it…… 

Yep, iPad and double, joggster twist Sen, buggy and Annabelle showing us the way! 

These beauties joined us too, Reed 1:1 from nursery T Tia and Bailey her beautiful son. We also met up with some great friends. (safety in number) 

Growing more confident in doing what my children need and turning a blind eye to a few “looks”. 

We had a great time and even got a medal (and lollipop) whooo! 

Hurrah … we did something normal!!! 

We went to a “family fun day!” 

I know doesn’t sound a big deal…. it is a BIG deal! 

We held hands and listened … until there was a, fuck off, huge que for the helicopter! 

So I pulled the “brain injury” card, went to the front of the que loudly comforting Reed, “it’s okay, we can speak to the kind man, I am sure that the other people will understand…. blarr” 

I kinda went into a haze of not being able to see…. thankfully the Devon air ambulance man was super kind and we went to the helicopter! Phewwwe!!!! 

Thankfully the 5th emergency service arrived in the form of Grandad and we bumped into a few people who know us (your presence was a massive comfort -thank you) and all was now more manageable! 

We decorated lollipops and enjoyed darting in and out the rain!!


This is monumental! 

I gave myself a little high five and we left, a whole 35 minutes after arriving! 

Hidden costs of disability!

So over the last few months I have been pondering, as you do, what the actual physical, emotional and financial cost of having a Reed!! 

The physical and emotional stuff needs a little more consideration and occasional perspective… see my personal Facebook page for a running commentary on those shinanigans. For this purposes of this post I am going to focus on the financial cost….. 

So you would think they wouldn’t cost you anymore than any other child, this in my experience is simply not the case!! 

Aside from the relentless appetite I am going to list the things, off the top of my head, from the last three months that have cost me, that perhaps wouldn’t have done if Reed wasn’t Reed….. 

(That’s not to say I want to replace him, but I would bloody love to know how to better support him!) 

6ft fence in garden £700, stop him from climbing over and hurting himself or breaking stuff. 

3x trampoline at each house he goes to regularly £300; to meet relentless sensory needs. 

Sensory toys/weighted blankets/other equipment £260; they might work they might not!

Pram to attach buggy board to encourage Reed to stand and avoid having to sling him or shelling out the £800 for a disability one that is big enough for Reed and Carter to safely be in together. 


That didn’t work! 

Water bill…. for the endless baths and water play…. cost unknown but the kitchen ceiling holding for dear life! 

Neighbours wall being smashed – likely above £100

And to finish off (main motivation for this story) 

1x bottle of shower gel each day £2.20 per day £15 a week

1 x mummies face cream £15.00

1 x mummies shaving gel £7.50

And 1 x piz buin factor 30 light (reminds mummy of holidaying in Marbella pre children and for a split second whilst applying I remember the freedom and possibility it represents) …. luckily Reed knew all this and it’s all over my living room to remind me! 

So without looking through the financial shizzle I just waffled on about it equals a shit load!! 

Off to google selling a kidney to fund the next round…. good job he is cute!!! 

Harsh reality is devastating 

I am fucking sad today, overwhelmed, angry, pissed off and feel lonely …. I DON’T want Reed to have a special brain and sometimes I don’t want a child like Reed. 


There I said it, and now i feel like the shittest person in the world, I will explain, cause that’s what I do best.

There is soooo much I love about him, but I feel like a massive failure to Reed, I want to understand him, support him, learn from him, but most of all I want a magic wand to make him normal, less extreme, better able to cope day to day, I want more time, space to spend with him.

I have three amazing children, a house, a good job, I have some of the most amazing friends, have family nearby, Ryan does all that he can for his children, a car that people would love, regular nights out and time “off”, which is amazing right? 

But I have no husband anymore, I have lost friends, I have to pee in a bucket regularly, I have to spend all my time within reaching distance of my son who for no reason will flip the bench or sofa over or throw a chair or table or toy, who will scratch and hurt other children or adults for seemingly no reason, who I cannot take to the shop, to anywhere unknown, to anywhere he might be overwhelmed, cafe or even on a family holiday. And I cannot help thinking that this wouldn’t all be true if I Reed didn’t have a special brain. 

It’s relentless, it’s lonely, it’s hard work and there doesn’t appear to be a light at the end of a increasingly long tunnel. 

If only he were normal or just a little less extreme, we including His siblings would be able to do normal things together. 

Never thought I would want to be normal, but this is my aspiration! 

But it’s not his fault, Epilepsy and brain injury and any underlying issues are to blame and society. 

Stupid society, I am not an entitled person, but I really thought that social services, medical professionals would be able to for warn parents like us. Give us the support and training we need. 

You wouldn’t become a arctic explorer without training and so why is it that we get none, unless we fight fight fight, I am loosing my fight. 

Each day we get through I celebrate and will of course remain optimistic of a bright future but for today I am angry, sad and lonely in equal measure. 

******** 

Thank you, wasn’t meant to be a sympathy stunt, I just needed to get it out! 

The love I have for him is so strong, just the pressure so intense and the future so unknown. 

A stranger at the gate

This morning followed a particularly difficult night, where Reedy didn’t go to bed till late, which was fairly amusing and I made light of it on social media…. taking selfies and chuckling;


I did enjoy star gazing and spending some 1:1 with Reed listening to his developing language and the way he is trying to put order to his chaotic world. Repeating the same thing over and over:

“Moon in dye, EE waiting”

“AA balloon in dye, granny cat hold booon in dye”

“Daddy White House, daddy White House now, daddy house soon, DADDY NOW!”

For a number of reasons this was a beautiful moment but my heart breaks just a little more everyday.

Finally going to bed at 11 with a nominal dose of melatonin to help him to sleep he was up at 5:30, me having been up for Carter at 3, the 5:30 wake up was not a welcome one!

Pre 9:30 I had stopped world war 3 (several times) changed two poops, “FIX IT” the hoover that Reed “BROKEN”, made/remade three breakfasts due to wrong bowl, wrong spoon and taking out a bin that “STINKS”. (along with all the normal shizzle, dressed although I fear I may have overlooked teeth!)

So when Reed was throwing a table at me in frustration on his quest for cordial with no water in, I broke, screamed at him and began sobbing like Carter; who at the same time was screaming in his cot as I couldn’t rock to sleep as I normally do. Reed had been contented playing but flipped out on Annabelle and she was screaming too.

As I tried to regain composure and work out what I was going to do next to reinstate peace I caught a glimpse of a stranger standing at my back gate clearly unsure what to do next, probably horrified by the noises coming from our house, I sought comfort in that stranger, for a split second I realise I am not invisible which is something I often feel. Especially to the people who are suppose to be close to me.

Not normally one for giving advice, but if you know/hear someone with a child with additional needs your help would never be turned away but would rarely be asked for. Probably for another blog post really, on the whole we are proud and fiercely independent but if you offer and truly mean it/make it happen then you would never be turned away.

The reality of being a single mum to three children, one with complex additional needs is a harsh one. Mostly I am smashing it but there are moments when I just sob!