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 


Facebook page

Gosh I didn’t realise how much we had neglected our blog. There have been a number of things to celebrate over the last few months and a couple of challenges that we have overcome. It’s not that I forget the blog our Facebook page gets all the up to date stuff! 

If you are on Facebook them please check out our page:


A little round up of the last few months: 

Reedy started having a 1:1 at nursery and he is learning basic makaton to try and overcome his frustration from not being able to communicate. 

We have been for our 6 month post surgery check up, we think he might have been seizure free since the completion of surgery. We are keeping him on meds until at least September because seizures were so hard to stop. We saw the psychologist too and he was happy with Reedys development in light of all the problems and short time since surgery. 

Reed is developing everyday, although his behaviour can be very challenging. So we are seeking support from Honeylands to help with bringing him on and his behaviours. 

Not epilepsy related but reedy has undergone urgent surgery for a hernia in his groin and at the same time had some grommets fitted to see if this helps his communication. A more routine operation but it was a very unsettling day for Ryan and I; evoking all the feelings we had when went for Epilepsy surgery. 

Fingers crossed we will not have to go through much for a little while to give our family some chance to holiday and prepare for the arrival of our newest addition due in June! 

X X x