Tuesday, 31 May 2011

Livvys Smile

Let me take you back just over 12 months ago....I was in hospital with Seraph. We had been in a couple of months and Seraph was about as sick as a child can get. I had spent Christmas and New Year in Intensive care with her, had kissed her as the bells struck midnight not knowing if I would ever see her open her beautiful eyes again.My family was miles away and I missed them and also had no support...it was a lonely worrying time.
I communicated with the outside world via text and mobile internet (where would we be without our phones!!) but all the same it was pretty lonely.

So imagine this.....one of the nurses comes over with a very box which had just been delivered for Seraphina and I. Inside was a HUGE Tatty Teddy shaped helium balloon for Seraphina and a box of chocolates for me!. Anyone who has ever been in hospital will know that chocoalte is a MUST to get through each day when you have a sick child...to say I appreciated it was an understatement.Seraphina adored the balloon..to start with she just looked at it but when she was stronger I would pull it down towards her and she would bash it with her little fists, laugh and get generally very excited. It helped to make her smile again after she had had so many nasty blood tests etc while in hospital.
 The card said with love from Livvyssmile. I didnt know who this was but I was SO grateful that someone had thought of us. The card also had a picture of the most adorable little girl on it, I presumed this was Livvy...so however sent this was a Mom, like me...it was nice to feel that connection with someone and gave both of us a boost during this horrible time.

Months later I was to learn more about Livvyssmile . It is a charity that was set up in honour of the daughter of a couple called Sara and Alan. Olivia (or Livvy) passed away at the age of nine.She had suffered with Rett Syndrome a horrible neurological condition which eventually as you know Seraph was diagnosed with also.
These wonderful people set up this charity solely to continue the legacy of love and laughter Livvy brought to many.Sharing  the warmth of their daughter by creating smiles for special needs children and their families.

They run various lovely events throughout the year Fun days at a donkey sanctuary, karaoke parties even RC racing events.
Thier website is http://www.livvyssmile.co.uk/   please go and check it out and support this wonderful  caring charity.....you'll be so glad you did.

Monday, 23 May 2011

Biting the Bullet...

Im writing this post not even knowing whether it will make any coherent sense or indeed if I will even publish it.More from a need to write things down...to let them come tumbling out randomly so that I can see them.

Im set out on a journey to find who I was a while back, as I mentioned in a previous post Iseem to have misplaced 'me'somewhere.
Well Im finding more and more the need or desire to do things I used to do years ago...writing, throwing pots on a potters wheel,taking photographs like I used to do and developing them,Painiting huge canvases with oils, singing and playing the flute.
I have never really realised how much being creative was a part of me and equally how much I had stifled it with the demands of being a parent.My life has been so wholely consumed with being a mother and caring for my children that I havent 'cared' for myself at all.
I feel so very selfish saying this and...yes...I admit it....guilt ridden. I dont know if I dare post this as I know many wonderful inspiring parents of children both special needs and not who seem to cope fine without doing this. But for me....its not enough

Please dont get me wrong, I LOVE my children  and they have taught and still teach me lots every day but....
I sat down and realised that if I died tomorrow....I haven't left a mark,nothing would be left behind.
....and I want to make a difference.

I have always told others that God has a plan for their lives, something that only they can do, a destiny to fulfill and that I DO believe....for others.Its much harder believing it for myself.
When a few years ago I asked someone in the Church what Gods plan was for my life they said I was already doing it...being a Mum.
But I feel incredibly restless...and I think now that if i was fulfilling totally what God had planned for me then I wouldnt feel this way..wouldnt have the ''There must be more than this...'' line going round in my head.

For me now something is missing...I want so much for God to use me,in some small way to bring hope to someone elses life, I want to make a difference.I dont know how and I fear being judged for wanting that on top of my family but I cant help it.God made me to be a mother but I believe he made me to be ME too with all my dozens of faults and lack of confidence.The only skill I have is a willing heart..I pray that God can use that.

Well thats how I feel .....will I bite the bullet and post it??

Wednesday, 18 May 2011

Home again and the ' 'T ' word.

Once again we ae home after a spell in hospital.As usual Seraphina seems to have picked up a bug so as I type she is currently napping and has a high temp and runny nose, poor kid never seems to get a break.

We seem to be going through a phase of being in hospital monthly and this last stay with abdominal distention was pretty nasty for her although we know at least whats causing it. Seraphina has been diagnosed with Chronic intestinal pseudo-obstruction which basically means that her gut nerves are giving out the wrong signals and her bowel swells and gives all the pain and discomfort of an obstruction when there is none there.
We have come home with yet more medicine and a rectal tube to use when she blows up with gas which should releave the presure and means we can 'manage' her at home for longer unless she needs IV fluids.
Long term she needs a third stoma - in her bowel- to relieve pressure that way...not something I am looking forward to becasue bowel surgery for Seraphina is always a major deal as her gut DOES NOT like being touched and does all manner of scary things when it is messed with.

Me? well Im exausted,totally and utterly,mentally and physically.
I have reached the end of my strength time and time again and felt that I just could not continue,have felt broken but i have carried on. My faith has been tested to the point where I have felt like I am hanging on by a thread.....but am I ? or is God hainging on to me keeping my head above water and providing the means to carry on this journey....and what a journey its been so far....!!!
Over the last few months particularly I have felt like giving up. I have felt the whole 'why Seraphina and why me?' thing in the past.If I am honest I still do from time to time but in Church recently the person preaching was talking about forgiveness.At the time I was having an 'angry and God day' and the preacher said ''you cannot forgive until you see the bigger picture''. Well, this got me thinking....I was angry at God for inflicting my girl with rett syndrome BUT in this case I cannot see the bigger picture - not in this life anyway so I have to look at God in order to forgive.

In the New Testament we see a picture of God through his Son Jesus.Someone who feels what we feel,is human and yet without sin,full of compassion and kindness.We also know that His wisdom is beyond all understanding.With that knowledge of Gods personality I cannot believe he would do something cruel so.....I need to TRUST  that when I do see the bigger picture I will understand why. The 'T' word.
Trusting anyone is something I struggle with a LOT...trusting God? I am being put into situations again and again which require this...Im working on it :)

Wednesday, 4 May 2011

The great debate...

I have become so stressed about making this decision  that I have decided to use the motto 'If in doubt,blog it out' to get my thoughts organised in some (hopefully) coherent fashion.

Before I continue I need to tell you that my experience with 'professionals' involved with Seraphina so far has been distinctly disappointing.We have had to fight for every little thing involved in her care,trying to get a chair other than her wheelchair to sit in  has been a long drawn out  affair spanning 18 months or more (still havent got one)Speech and languge therapy has been almost non-existant ..I have been waiting for 5 months + for a list of 'first words' to try and teach her!!, Dentist...2 years and still waiting.
When she began to lose skills at 18 months I had every answer from 'paranoid mother' 'you arent stimulating her enough' and ' shes probably working on other skills, give her time'...........cant you see where I am heading here and why I have such a mistrust of the breed in general??

Well now I have to make a decision, one I am agonising over as I so desperately want to make the right one for Seraphina and me.


We started the assessment/statementing process once before,just over 12 months ago for nursery but it was halted on the advice of the Disability service as she had been so poorly and had changed so mcuh from the initial assessments that it was pointless and she wasnt up to nursery.

So the process has now been started again and we have to have all the assessments done again.
In our area there is a choice of 2 SN schools.One of them wouldnt have Seraphina anyway I have been told as they cater for more able bodied children mainly Autistic spectrum and then we have the other one which is closer but has no PMLD class (profound and multiple learning disability..what Seraph is classed as).It would be the latter I would have to send Seraphina to.

I know, and this much I am clear on, that I could not send her to school full time. I am told she would not get one to one and therefore she would be in a class of up to 12 children.
 The IDS lady said she in favour of a SN school ,that they have much more equipment for special needs children...but if she has no one to one to help her access it then its pointless in my opinion. The schools last OFSTED said that they found it was very easy for PMLD children to be ignored...hmmmm :-S

I have considered Flexi-schooling, which is as follows....she would spend part of each day at an SN school and the rest of the time being home-schooled (I trained to be a Teacher anyway)

The alternative to that is to completely home school. From a completely selfish point of view it would be nice to 'have a break' (we have no respite as I didnt want to send her to a hospice and from a carer point of view...not that we have ever beeen offered one...I would want someone who I trusted and who had prior knowledge of Rett Syndrome and with similar life values as my own..tall order I know lol).

I need to know that wherever she is educated she is loved and safe and stimulated at her own pace...and Im not convinved she would have that in full time school.
However on the flip-side, if I am honest,I dont know if I have the stamina to home school full time.Right now I feel rather burnt out with all the bad nights for example today I have been up since 3am..I hope that doesnt sound selfish? I just think that maybe having so little sleep then doing a days 'schooling' with Seraphina, keeping house and looking after another 5 children may be too much??? I dont know, maybe I am just wimping out.
At the moment we are doing roughly a half day school every day..at her pace and for which I am keeping extensive records of her progress.I am doing this all ad hoc as we have no input from anyone as to what to teach so we use the touchscreen and ipad working on recognising letters and numbers, matching,songs, messy play..that kinda thing.

What stuff should she be learning and what would she be expected to learn at home???

So you see (hopefully) my problem...I dont want to feel like I have let her down or failed her in any way but at the same time I have this image of her in a classroom with everone bustling around around her and her just sitting there on her own, not knowing whats going on, unable to tell anyone...the thought is heartbreaking.

But I need to make a decision soon..well by tomorrow actually as I have people coming out to make their first 'assessments' of her...I just dont know what to do.

All feedback welcome :)

Tuesday, 3 May 2011

''All Change''

We live life in the fast lane, a technological age where advances are being made all the time, Xbox, Wii,Playstation 3,ipod, ipad, touchscreens, fast food,'on demand' TV and films and even a shop where you can get loans in advance of your paycheque!
Everything organised and promoted as 'must haves' to aid us in the increasingly fast race known as 'life'

I used to be uber organised,always fitting everything I needed to into one day - hated it if when meeting people they were running even a couple of minutes late.I was one of the twonks who, after pressing the button at the pelican crossing, then dashed out at the soonest break in traffic as the lights took 'too long'.
I have my first 5 children and found that to start with I couldnt get out when I wanted to, they didnt 'fit in' with my life.Oh how I laugh so much when on the baby programmes the newly expectant couples announce 'having a baby wont change us, it will have to fit in with our life'.I wonder if thats still their view 6-12 months post birth??
Over time I became quicker and more organised again and settled happily into a routine.

Then Seraphina arrived....'' All Change!''. This little girl has changed my whole outlook on life.You cant hurry with a big heavy wheelchair,medicines,oxygen and feed pump and...Seraphina doesnt like quick or noisy.

Instead of rushing round like a mad thing Seraphina has taught me to wait. Sitting for hours by hospital beds or in waiting rooms.She has taught me to be still, cradling her in my arms in the wee hours till she finally shuts her eyes.
She has shown me the importance of the simple things,things with her child-like understanding and enthusiasm give her so much pleasure, like butterfies,the patterns the sunlight throws on her bedroom walls, bubbles, the wind in her hair and music.
She notices and loves things I wouldnt have seen.In the garden her eyes found a tiny but brilliant blue patch of gentians, so easily overlooked by anyone else amongst the weeds (yes,my garden needs a makeover! ;))...So I photographed them for her :)
She has taught me so so much, shown me patience I didnt know I had, cultivated in me a love for her that is so strong and given me the gift of seeing things through her eyes,taught me to to value the God given simple things.
God knew and had this covered ! :)

''Im telling you once and for all, that unless you return to square one and start over like little children, you're not going to get a look at the Kingdom, let alone get in.Whoever becomes simple and elemental again like this child will rank high in Gods Kingdom'' Matt 18.2

''All Change'' though not without its saddness and pain, has been in lots of ways one of the best things to happen to me. Thank you Seraphina, for all you have taught and are teaching me still. I love you to the moon and somewhere over the rainbow....always xxx

Sunday, 1 May 2011

My girls

Just wanted to share a couple of pics I took today.The sun was shining and Seraphina was SO pleased to be out int it.
THIS is the reason I go on about Girl Power 2 cure and RSRT, this smile is what keeps me going , making people aware of Rett syndrome and in so doing praying that we will one day have a cure.I want to see my girl run and play with her sisters, I want to hear her talk SO much and say the word I never got to hear her say...Mama

and this gorgeous picture is of my four beautiful girls together.

I LOVE my girls xx