Letter to the Arachnoid Cyst Lady

You may recall in one of my very early posts, I wrote about a website a lady who has an arachnoid cyst had set up. This is my letter to her.

Dear Arachnoid Cyst Lady (don’t know her real name),

I can’t imagine what living with an arachnoid cyst is like. I believe you when you say it is painful and you have had continuous headaches. I wouldn’t insult you by even pretending I could put myself in your shoes. I still, however, do not condone what you have written on your website.

My son has an arachnoid cyst. A large one for such a beautiful little head. We discovered he had it at his 20 week scan. We were asked our views on termination as we didn’t know at that point what quality of life he’d have. I spent hours upon hours searching the internet, looking for information on arachnoid cysts in babies. I couldn’t find a lot. I did, however, find your website. I also found the part were you wrote that if a parent discovers their unborn baby has an arachnoid cyst then it would be cruel of them to carry on with the pregnancy. You actually tell people to get rid of their child as keeping it would be meaner than not keeping it. After reading this, I’m ashamed to say that I considered what you were saying. As I had no other information, I thought what you were writing might be true. I showed it to my partner and we actually considered, based on this, that we maybe should think about it.

A few days later, in the hospital, I said to my partner that I couldn’t end the pregnancy. I didn’t care what the outcome was going to be, but I didn’t want us to choose to end the pregnancy – we would just deal with whatever happened. If he hated us when he was older for allowing him to be born, then so be it. At least we were giving him the chance to have his life.

I’m pleased to say that that was THE best decision we have ever made. Our baby boy is just perfect. He has had treatment for his cyst which has now shrunk significantly. He smiles, he chatters and he is just beautiful. He’s not in pain or, if he is, he doesn’t let it bother him. 

We have a beautiful son and my daughter has a beautiful brother.

So I’d just like to say that although I am sorry for what you are going through, please don’t tell people to get rid of their babies. My son is proof that not everyone who has this condition has the appalling life you write about. 

If anyone else sees that website and then reads this letter, please take heart from the fact that your baby could be just as happy as ours.

From a very happy mummy.

Ethans Escapades

Can I get a big, fat “yaaaaaaayyyyyy”, followed by a fist pump?!

The mighty Seabass has struck again!! We went for his MRI and neurosurgeon appointment today at Alder Hey. The cyst is now a quarter of the size it was and his brain has expanded and filled in the gap. The neurosurgeon is hoping he won’t suffer with his motor skills and it will only be behavioural/memory problems he may suffer from. I don’t care though. Boys are meant to be a bit cheeky anyway, right?! 

It’ll obviously still be an ongoing monitoring process to see how he progresses but considering less than eight months ago we were being asked what are views on abortion were, we have definitely come a long way!! I’m so glad we decided we could never go through with that. It doesn’t even bear thinking about. We are definitely proof that miracles can happen.

The little man spends a lot of his time smiling and chatting. He’s just beautiful.

Checking In

It’s been a while since I have written anything, so thought I would check in.

Seabass is doing really well, now weighs almost 15lb. He’s a happy little boy, always chatting and smiling – never grumpy and only occasionally has a major cry. 

He has a MRI on Thursday followed by an appointment with the neurosurgeon. We’ve had no cause for concern that the shunt hasn’t worked. He seems to be progressing well.

Tinkerbell still loves him to pieces. Always chatting to him and calling him “gorgeous little man” – she loves it when he smiles and his little face does light up when she’s chatting to him. Perhaps not so much when she gets overexcited and sticks her face right in his, but her heart’s in the right place.

There are quite a lot of people signed up to do the National Brain Appeal pyjama walk now and we’ve raised over half of the target amount so far. If you’d like to donate we have a Just Giving page, which you can take a look at here. The page is for everyone taking part, not just me.

I also have another fundraising project in the planning stage for next year. It will be to raise money for Alder Hey Charity who have helped us so much with Seabass. I’m getting the help from some very kind people to make sure it is a really good event. There will be more to follow once I am in a position to give more information. But stay tuned….your support in this event will be very gratefully received. 

That’s all I’ve got to update you with at the moment.

Love to you all xx

National Brain Appeal Pyjama Walk

The National Brain Appeal is a charity that raises money for The National Hospital for Neurology and Neurosurgery. It is one of the world’s leading centres for the diagnosis, treatment and care of patients with neurological and neuromuscular conditions.

One in six people in the UK suffer from a neurological disorder. To help raise money they are having a pyjama party week from 19-27 October. People are to organise fundraising events which involve wearing pyjamas. You can read more about it here.

As The National Brain Appeal helped promote my blog when I first started it, and because it is an important charity to me, I am organising a pyjama walk on 19th October in Liverpool to raise money for them. It is a 7km walk taking the following route, which I have taken from The Guardian’s “Walk Yourself Fit”:

1. Starting at St George’s Hall, walk through St John’s Gardens and turn left into William Brown Street.

2. Turn left into Whitechapel.

3. Turn right into Stanley Street and then left at Matthew Street.

4. Turn right on to North John Street then left on to Dale Street. Walk to the other end of Castle Street, to the Queen Victoria monument on Derby Square.

5. Turn right down James Street and follow the road down to Albion House. Return along James Street and turn left on to Fenwick Street. Continue on to Rumford Street.

6. Turn left into Chapel Street to reach St Nicholas church and gardens. Walk to the opposite side of the Strand.

7. Continue walking along the Strand, past the new Liverpool One shopping and leisure complex on your left. Turn right into the Albert Dock.

8. Take a stroll around Albert Dock and walk back on to Wapping, continuing through Liverpool One bus station into Hanover Street and turn right at Duke Street. Continue and turn left on to Slater Street. Turn left on to Bold Street.

9. At Central station, turn right on to Ranelagh Street, cross at the pedestrian crossing and turn left on to Lime Street. Continue past the train station and finish back at St George’s Hall.I’d love it if you could join in or would like to sponsor us.

We will then add on a No. 10 which will be walking to a pub – just waiting to confirm which one.

If anyone would like to join in, please let me know. Or if you would like to sponsor us online, the JustGiving page is found here.

I will still be organising an event next year to raise money for Alder Hey.