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!

Reedy is three!!!

Oh my gosh Reedy is three! Wow amazing. He has been through the mill, sadly he has little understanding that it is his birthday! 

He just knows that he has more marbles than ever now. Marbles seem to be the best way to keep him calm and concentrating. 

He has even started counting! 

Thanks to direct payments and generous friends we have all been fighting over an awesome marble run! 

Reedy has been watching his sister Annabelle horse riding for a few months now. We were worried as to how he might behave, but it would seem that with Annabelle leading the way he was a super star. 

We are going to continue to take him periodically. There is so much he will gain from being around these gorgeous animals. 

We had a little party for him at the local soft play, due to his behaviour we darent have many…. 

Busy few days of celebrating our special brained boy. 

No matter how much we try and be happy there is thos undertone of worry, panic and sorrow. Reedys birthday was on Friday but on the Wednesday before he was hooked up to EEG monitors for 24 hours to help us ascertain whether seizures have returned. 

We take these in our stride as there is little we can do until we know the results, which will be soon. We are 99% sure they have returned but there is 1% that hopes they haven’t. 

Ryan and Reedy Just about recovered from the 4/5 hours awake in the night to celebrate a happy birthday. 

Epilepsy keeps trying to ruin us but we keep bouncing back. 

We have come so far! 

Once again a massive break between blog posts, but we have come so far in the last few months. 

12 months ago Reedy underwent a massive brain operation to stop his seizures. We are currently on a medicine wean off Keppra. Although Reedys behaviour is still very challenging he is thriving. 

Here is a video from today. Beaming with pride and adoration….. 

He’s got “Reed”

Once again the blog been neglected! 

What a few months: last blog in April 

May saw mummy start working in a beauty salon, Annabelle up her hours at preschool and Reedy have assessments at Honeylands; Physio, speech and Lang, ed psychologist and eye sight people. 

June Carter Raine Berryman arrived! 

Reedy became a big brother! 

July-no idea! 

August – a few birthdays but mostly no idea! Mostly as reed learned how to climb out of his cot! Cue a nightmare waking schedule. 

September- that’s now! 

So bless him we are almost a year post ‘massive brain operation’ life is mostly great but Reedy is sometimes very challenging in his behaviours. 

Nb this in no way changes the amount we love or care for him! 

He hits out, gets stressed, is excited, sings loudly and a lot and is learning new words…. He randomly shouts out and can get very distressed if for example the birds he had pointed at saying ‘brr’ then do not do as he signs/mimes them to do! 

Yes amazing he is learning to say words and amazing that he is understanding the world around him and amazing he can be understood when he wants things to happen…. But my gosh we get some funny looks. 

Now some childrens behaviour can be explained as “ASD” or “MS” or “Dyspraxia” or a “genetic something” we don’t have anything like that so when he pushes an unsuspecting child or screams so much cause he wanted something that he can have or wants the birds to fly or Carter to eat an ice cream and people stare or pass comment normally we try and quickly explain: 

 That this is Reedy and he underwent a massive brain operation a year ago to try and stop his epilepsy and as a result we are not sure how his behaviour is going to improve and that the drugs her is on …………. Well we lost them at this is Reed! 

So we are going to stop telling them a life story (they don’t normally care!) and just apologise and say oh so sorry he had got “Reed” then who looks silly as they run home to google “reed”! 

#copingwithbraininjury #itsourstory #weloveReedy #dontjudge #learningtoaccept #paretingsurprises #gottagetthroughthis #love #brothersandsister