Beginnings and Endings…

Right – first up today, I am proud to announce a change of name for the blog.  The Frost Family Blog seemed fine when I started this blog last year, but in keeping with how my contributions have turned out – I have now decided that Fair Words Butter No Parsnips is a title that suits my thoughts and feelings better!  Plus it is a phrase that I inherited from my late Nan – Frances Savage.  It made me laugh when I was a child, and as it turns out, seems to suit my life quite well these days!

This morning, as I was dropping Jack off at school, I noticed the deputy head walk towards his car, all suited and booted and carrying flowers.  Now usually the staff are quite casually dressed so it did make me wonder for a split second what was going on, and then I remembered.

When Jack was born I quickly had to become accustomed to a new way of life.  Life that isn’t like your average new parents usually is.  Jack was in and out of hospital lots during his early years, and a result sometimes I met other parents in the same position as myself.  One of the first was the Mum of a (then) little girl called Rhian.  Rhian was a couple of years older than Jack, and was a beautiful, blonde, delicate looking girl with a rare syndrome.  Her mother had another daughter previous to Rhian who had the same condition and who had passed away early in life.  unfortunately the doctors had indicated to the family that the condition wasn’t genetic, and so they went on to have Rhian, believing that all would be well.  unfortunately it wasn’t.  Like Jack, Rhian had the same sort of prognosis, but nobody could really say how long she would live.  With Jack they said he wouldn’t survive to term in my womb, then he wouldn’t survive birth, then he wouldn’t survive beyond two years and finally he wouldn’t survive childhood.  As you know, he’s now 15 – and still here in all his glory.  We don’t know how long we have with Jack – just the same as Rhian’s family didn’t know how long they had with her.  Over the years I have met more families and we have all really been in the same boat, and over the years I have watched as these precious angels have all gradually slipped away.  Up until a couple of weeks ago they were 3 of the “original clan” left.  Rhian, Jack & a fine young lad named Nye.

Rhian died a couple of weeks ago.  I believe it was known that she was at the end of her short 19 year life, and that her death was expected.  Not for one moment does it make the shock and grief any less I imagine.  I can’t really think about the day that we lose Jack – so I only have a slight inkling of how her family must be feeling today – the day of her funeral.  My thoughts are with her family.

 

A New School Year Begins….

First of all I have to apologise for not writing an update sooner than this!  I could swear that I created a post via my iPod and published it here a couple of weeks ago, but for some reason it’s disappeared!  Technology is sometimes not all it’s cracked up to be!

Paul and I had a meeting with the manager from Continuing Healthcare a couple of weeks ago, also Jill, who did Jack’s original assessment – which went on to be refused.

I have to say neither of us were looking forward to this meeting – I had certainly had enough of meetings in the last few months, and the summer holidays had given me some breathing space, so to know that the new school year was going to commence with yet another meeting was not a prospect I relished.

To cut a long story short, we were given an apology at the meeting for the way we have been treated by all the agencies concerned with the one big mess that is Jack’s transport to school, and we were asked if we would consent to Jack’s case going back to panel in the next couple of weeks.  Since the last meeting, letters had been sent and received detailing the severity of Jack’s seizures and in light of this, CHC wanted to see if they could put Jack forward once again.  We agreed.

If Jacks case in unsuccessful again, CHC have proposed that they will pay for a carer to be trained to come at 8am to our house and help me get Jack ready for school, to wait with Jack at home while I take M & H to school and then to travel with Jack on a bus/taxi to and from school.  The carer will be trained how to deal with Jack’s seizures.  The problem is…they are having trouble finding a carer!  The last I heard, the manager was going to contact various Home care agencies to try to source someone, but as she admitted herself, it was going to be no easy task!  Jack’s school was approached too, but they refused to supply someone, and baring in mind that they provided an escort for much of the last school year, I can understand why they have refused.  If  they are seen to be providing escorts for Jack – paid or not – then they will have to be seen to be providing it for anyone else in Jack’s situation.  Totally unfeasible.

At the moment, and until the escort/carer matter is resolved, I am transporting Jack to and from school – as well as my other two children.  The first week was quite stressful, but I have the timings down to pretty much a fine art now.  unfortunately fate let me get settled and organised and then decided that Jack should start having a few seizures here and there!  Fortunately these moments have struck when I have been parked up, but I dread to think what will happen when a seizure occurs while I am stuck in traffic in town…you can just picture the scene can’t you – nose to tail traffic…no where to stop or pull over…no one to administer oxygen to Jack.  It will happen, it’s only a matter of time and I live in dread of that.  But I have the funny feeling that when it does happen, I will suddenly gain the strength to announce to all agencies concerned that I am no longer putting Jack or myself in that situation, which actually is life threatening for Jack, and that I won’t be transporting Jack to school anymore.  Therefore – Jack will no longer be attending school.  I just hope – to be honest I pray, that Jack will pass the next CHC panel, which I believe is this week sometime, and then something will be put in place pretty as soon as possible.  If not, then we still we get a carer as opposed to a nurse, but when that happens will be anybodys guess really……when someone decides they want the job!

So, when I know more, I will post more…but until then please keeps good thoughts coming our way and keep everything crossed that we soon get some good news.

First day of a new month…

I don’t about you but I cannot believe it’s May already! The year seems to be flying past…which actually isn’t a bad thing really consider how rubbish the first part of the year was.

However…onward and upward.
I can’t say that I wasn’t upset about the outcome with the Continuing Care panel…but then I always knew they would refuse Jack…told you before…not pessimism but realism. Just seems that it was all such a waste of time…meetings, phone calls etc and all for what. Nothing. We are still where we were at before all this kicked off. The way I am looking at it is that I never asked for any of this fuss…Jack’s school and the Transport Dept were the ones making the noise about Jacks travelling arrangements. Therefore, they can sort it out between them. I’ve had it up to here. They can kick up as much fuss as they want about Jack having fits on the way to school…they don’t give a crap if Jack has one when it’s just Jack and I driving in the car and I have to pull over and deal with it BY MYSELF! No one gives two figs about that! Anyway, I have come to a decision about the travel situation, but am not at liberty to divulge information currently. You will read it here in due course. Meanwhile the pen pushers can go find someone else to upset.

As for Mister Jack, he’s doing well all things considered.  His seizures make him incredibly tired….after a couple he can sometimes sleep for a good 12 hours – sometimes more.  However, his smiles show me that he’s still loving his family and loving his life – and even loving our crazy dog Ruby, so that in itself gives me reason to get out of bed every morning with a smile on my face and urge to rush in and see my boy.

Matthew and Hannah, my younger children, are a joy.  They are very busy with school and their hobbies of Karate (that’ll be Matty) and Dancing (Hannah).  Although at times they run me ragged, I feel so privileged to be their mother.

Well, as I write this, Paul and his brother are outside re-building our garden shed (they have been moving it to allow for the new greenhouse), so I had best finish now and get the children some lunch. 

Have a lovely Bank Holiday Weekend!

Some Very Welcome News…

Today I had some very welcome news. Jacks school has a shop in the town centre, and over Easter they are making some improvements. One of these will be an installation of a Changing Place. This will mean that Jack and others who are unable to use normal toilet facilities will have somewhere to be changed in dignity. These toilets have hoists and changing benches in them as well – to help carers like me who do a lot of lifting! It might not be a big deal to some, but to me – and to Jack too – it means that we can actually go and do some shopping in town without having to cut our trip short.

Also, second piece of good news (don’t faint with shock), it seems that Motability is reducing the deposits they charge for WAVs (Wheelchair accessable Vehicles). We have been looking for a decent car for a good couple of years now, and the cars we have all looked at and thought “you know what, that’s really nice, and it doesn’t stick out like a sore thumb” have all had silly deposit requests….usually between 10 – 12k. Now though we have managed to save up enough and have rung one of the conversion companies who convert and sell the car we like, we have been told the deposits have been slashed down to, in our case, £7000! This is wonderful news obviously! We have a demo booked in a couple of weeks, but I get a horrible feeling Jacks chair is going to be too cumbersome for the car in question – but we shall see. If so, then we will end up with some sort of van like vehicle – which we soooo didn’t want. Just for once, we wanted a nice family car that we will enjoy driving – not something big and bulky that looks like a van with a ramp on – which the other cars we have test driven have essentially been. But we shall see what happens in a couple of weeks.

Should I dare to hope…?

As you know from my last couple of posts this year so far has sucked with a capital S. Apart from death and personal issues, the department that deals with Jacks transport (and the school nurse) decided that Jack could no longer travel to school without a trained escort travelling with him. The reason for this is Jacks seizures. I’ve written about them before I’m sure; he stops breathing and scares everyone witless. He needs oxygen and a drug called Stesolid to be administered if needed – and you have to be trained to give both. To cut a long story short (as usual) Jacks regular transport was withdrawn and Jacks school released one of his learning support assistants to be his escort – she is trained and she knows him very well. However – this was always going to be a temporary measure until a referral to Continuing Care was made. Continuing Care are responsible for taking Jacks case to panel which will hopefully provide funding and a nurse to travel with him on his journey to and from school.

Today was my meeting with a lady from Continuing Care – her name was Jill (Hi if you’re reading this ). Together we discussed just about every aspect of Jacks life; medical needs, condition, communication…you name it, we discussed it. Jill will now visit Jack at school, talk to the school nurse and to Jacks teachers about Jack. She will also visit Respite and talk to them, and will then present her findings to panel on 19th April sometime in the afternoon…so…and here’s where you lot come in…lots of positive vibes to be sent our way please. There are no guarantees with this meeting, and being eternally pessimistic I am not holding out much hope….maybe not so much pessimism and realism! There are other avenues we can explore, but just for once it would be so nice if something could just get done without any bloody brick walls being shoved in front of us. Hell yeah it makes for an interesting life, but it doesn’t do wonders for stress levels I can tell you.
Apart from that all’s ok, Jack is growing up so fast it’s scaring me…he’s such a young man now.

Jack on YouTube

Just thought I would post a video that I made of Jack and I a couple of months ago.  It tells the story of Jack from the very beginning – and it’s amazing to see how quickly he has grown up!  I still can’t believe that in August he will be 15.