Friday, 9 December 2011

....and Christmas came early

As many of you know we have had a tough few weeks. Seraphina s still only tolerating half strength feed, she has lost a considerable amount of weight. We went up to Sheffield again and have had to start another medicine called azathioprine which is an immunosuppressant as well as pushing the steroids up to maximum again as she doesnt tolerate them being lowered.
We saw the opthalmologist this week who again confirmed that she has a cortical visual impairment (although not too bad) and then we saw our local consultant who looked at a lump I had been a little concerned about in her tummy and confirmed it was an incisional hernia (her bowel has herniated through a past operation incision ) so this means another op for my girl to fix it.
Then we had to go to hospital twice with temperatures so that they could check her blood cell count due to being imunosupressed so they could see if she was able to fight off the infection and have medicine accordingly.
Life seems to be a game of ''hospital hokey cokey' at the moment and the other children are also feeling the strain,particularly the eldest three, . their schools have been good reducing the amount of homework they have to complete and we have spoken to them all and prayed together but Its hard when they ask you why God hasn't healed Seraphina completely yet.

I have no answers for that ... my faith is still strong ,but my longing to see my girl healed is too.

Yesterday was one of 'those' days.I was looking at the photos and pictures we had taken only a few days ago ...Seraphinas 5th Birthday.How my heart ached to see her eat some cake, open her own presents,blow out her own birthday candles...speak and run around like any other 5 year old girL
She had spent the morning crying with tummy ache, hadnt been well enough for physio for months and was having more spasms.

I cried out to God ...WHY?? Have you forgotten her ??? PLEASE show me you still care...that you remember my little girls name!!!

I immediately felt bad about my outburst even though I knew that God didnt mind.

For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. Isa 55:8

came to mind and I left it there and carrried on with the rest of the day.David had one of his rare working from home days and we had an appointment in the afternoon.

and then, a couple of hours later....with Gods help my little girl gave us the BEST Christmas present we could ask for


I grabbed my camera phone straight away and tried to capture some of it on film before she got too tired...she had already walked the length of the living room from the hallway and I just got the tail end of her walking here...Im sure you get the idea :-). She had walked with assistance for the first time a few months ago but this was something else!! watch out Christmas tree this year :0) !!!

I know many of you wont agree with this but this is WHAT I believe

God hasn't forgotten her...things may not be panning out the way I thought they would,or hoped they would but he DEFINITELY hasnt forgotten her and I believe this is what he was trying to tell me.

HIS ways not mine....always.

Thursday, 1 December 2011

Tidy your room!

How many times a week can I hear myself shout this up the stairs to my children. Ive threatened no pocket money if they dont get it done.I have pleaded with them to move stuff before I literally break my neck over stuff that has been strewn across the floor.
Ive also gone into their rooms much to their dismay with a bin bag and thrown stuff away when they havent tidied up.

Im having some little trousers made for Seraphina and the ebay person asked for her waist measurment and leg length so I went to my bedroom to find a tape measure. I couldnt find it.
I decided to look in my bedside drawers..I pulled the first one open to be showered with bits of paper overflowing from it...oops, maybe I should tidy this. I pulled it out and masses of stuff fell out the back and onto the next equally overflowing draw and onto the floor where my mountainous pile of books toppled over *blush*...how did the pile get so high???!?

I started to go through the drawers bit by bit and was initially horrified at the mixed up jumble of things I found h broken hair accessory, a scribbled on envelope, a squished lipstick, a toy train, receipts, notebooks, hairbands,a bookmark the list is endless...bits of paper folded up with notes on a chocolate wrapper......ok more than one :-)

Then I looked more closely..each item told a story

The hair accessory was one I had bought and Eve had pinched without me knowing when she was about 4, I still remember her coming downstairs in one of my dresses and high heels with this pearly hair accessory twisted crookedly into her hair which was tumbling out of it one side and sticking up at a comical angle the other side.I was all ready to shout at her for pinching it until she said she was trying to be ''princess mummy''........and she did look really cute.

The scribbled on envelope contained a little tooth and on the front David had written 'To the tooth fairy'' and then it had been painstakingly signed by a very little boy ''J o s e p h'' surrounded by lots of kisses and a drawing of a car.

The reciepts were from things bought a few Christmases ago, things they had been 'desperate' for and I had felt so over the moon at being able to get...I laughed as I read them because  can still hear their voices as they nagged me for the hundreth time and I had already got the things secreted away :-)

The bookmark was from a Christian event I had gone to...I was so desperate for a little brother for Joseph but it wasnt happening even though I had felt God say he would answer my prayer. Someone prayed with me that night and at the end of the night everyone got given a bookmark..mine said ''God always keeps his promises ''............and he did only a month later when we found we were expecting Samuel.

The squished lipstick was one Aimee 'borrowed' aged about 3 and covered her face in it whilst the train is a spare Thomas the tank engine of Josephs that he wrapped up for my birthday one year ...

These are all things which would look like rubbish to someone who didnt understand, but each one is a memory.


Memories, each one so so special....Im a squirrel, I admit it and I think my children have inherited the 'squirreling' gene.
I'll still be asking them to tidy their rooms.....but maybe I wont be so ruthless when throwing things away and let them keep thier memories too.

Ive also made a decision
This year Im going to give my children a different present, one I have only done once before and one which money cant buy.

Im going to write them a letter each, with all these memories in, memories individual to each of them, little reminders of their growing up, how loved and special each of them is and how blessed I am to be their Mum.. meanwhile I might put this stuff back and save tidying my room till another day :)


Thursday, 17 November 2011

Let me tell you about...POST PALS

Ive been wanting to write this post for a while as this charity has become very close to my heart.

Most people know how much Seraphina has to go through on a daily basis, what I dont often talk about is how much the other members of my family go through too.
My other children..Joseph Thomas patrick,
                               Aimee Hannah Joy
                               Lydia Catherine Grace
                               Eve Angel Hope
and not forgetting  Samuel Peter Jacob

These sweethearts go through SO much too, they are my heroes.They cope with the heartache that an absent parent brings when they are once again unavoidably detained at hospital to care after their sick sibling. They cope with the crushing disappointment when a parent cant come to their class assembly,parents evening or school fair because they are away or their sibling is too unwell to be left.

 There are lots of charities out there which cater for grants for special needs children..all geared towards the needs of the special needs child but POSTPALS is different....wonderfully so.

Post pals was set up by a lovely girl called Vikki who herself is very ill with M.E and at the time Post pals was set up was totally bedridden, the gorgeous Vix is also poorly with M.E as is Kate.D..how wonderful that these people, all with their own illness to contend with, should stretch out a hand of friendship to extremely sick and life-limited children AND their families all over the U.K.

The concept is simple, the results are life changing.
My little girl has had postcards from all over the world with her favourite things on them...shes had lots and lots of her beloved bath ducks sent to her (we may even have to build  a second extension to house them all :-p) shes had thoughtful presents like a pair of long fluffy socks sent to her from Finland. Even lots of cut out yellow chickens sent to her at easter....painstakingly cut out by a primary school class each with the childs name on.
and her siblings....they are also included too. Ria ( a postpals volunteer) made them all pillowcases with their names on and their favourite TV characters...you should have seen thier faces when they got those! they have had cards, letters and small gifts, each one which bought a smile to their faces and a realisation that people cared about them too and how they were feeling. This has been such a blessing when I have been away from home.
Of course I must not forget the Dotty project. a lovely spotty dalmatin puppy who had siblings sent out to every sick child and their family..we named ours Bottomly Potts. Dotty has amazing adventures and always keeps us ''posted'' (sorry couldnt resist) on what shes getting up to.

Post pals are wonderful...
Its amazing how a simple postcard with a ''Hello, just sending you a smile'' can have such an impact on a tough day.
From the Christian members of Postpals we have recieved prayer support which is just as important...prayer is powerful and changes things.
Even Mums arent forgotten as I found out recently on a long hospital stay. I got sent a ''Hospital survival kit'' Its hard being in a hospital over 100 miles away from home.Visiting is limited because of distance  and often (as in this recent admission) unplanned so you end up having nothing you need with you.
This arrived and ...Ill be honest, I cried. it was totally inspired...whoever thought of these boxes deserves a medal. Inside there was everything you needed to literally 'survive' a hospital stay.From sachets of hot chocolate and cofffee (Mmmm...coffee!) to a  travel toothbrush and toothpaste, showergel and deodorant (which as every mum knows who has slept in her clothes wiothout hope of a change of clothes for another 24 hours YOU NEED!)

I even got sent by a wonderful person...a book by Jane Austen (My favourite author) How spoilt did I feel!!!
As wonderful as all these things are....its the meaning behind them thats the most important thing....you arent forgotten. There are people out there who read updates on what is going on, who CARE whats happening to you and your family.
Most recently Seraphina has been suffering with sore painful ulceration and weeping at her jejunostomy site...Postpals came to the rescue again.They made and sent something called ''button buddies'' which are a simple design of circular cotton with absorbant backing which just fasten round the base of her jej button and protect the site from moisture whilst allowing cream to be kept on and soak in. They hae been FANTASTIC...her site is so much improved since wearing them....Seraph has even got into chosing her own button buddy for each day which has also helped with the psychological issues she was developing around having her button cleaned.

What I want to say is a HUGE  'THANK YOU!!!!' to Postpals for making my children (and me)smile.
and to anyone who is thinking of supporting postpals either by writing a letter to a sick child or giving a donation finantially.....DO IT!!! :)
Thanks for reading

www.postpals.co.uk  ...go on..make a sick child smile!

Seraphina with a card sent to her by St Patricks R.C Primary school, Cardiff. thanks guys x

Tuesday, 15 November 2011

The GP, a Nee nah and a Sheffield trip

We've just walked in after a trip to Sheffield Childrens again.Its been a bust week or so and so I thought I would blog to bring you all up to date with where we are at.

We have been struggling to try and get Seraphinas feed up, so far we havent managed it although when her steriods were increased back up to the max after trying and failing to wean them down we noticed an improvement in her straight away. we are now on just over half strength feed but have not managed to get any further.we have still had bleeding on and off but not as much as before.
On friday I decided to take her to the GP as she had what startwed out as a very small yellow hear kind of thing on her chin...but then it kept coming up to a head, bursting and then getting bigger,coming up to another head bursting repeat repeat, till it was almost the size of a 10 pence piece and very painful for her. As  I didnt want it getting worse over the weekend and she had had a litle bleeding I decided to see the GP for er opinion and ask them to check her HB.

Well to cut a long story short the GP took one look at her and called an ambulance...she didnt help herself mind you by having a seizure at the surgery! The GP felt she looked pale enough to need a transfusion and the spot/boil on her face was definitely infected.
They sent an ambulance....but the men apparently couldnt take her (wrong ambulance apparently?!?)
As she had a seizure and was out cold the ambulance men put her on thier SATS monitor (much to the great interest of everyone else in the waiting room who began to stare at her like she had three heads or something) and ordered another ambulance the HDURV they very importantly told me. ''rrrright I said....which means??''  '' Oh its the High dependancy retrieval vehicle''...I enquired whether she needed that level of care and was assured she did...the only hitch being that it was coming from Birmingham....in the rush hour....45 mins away *sigh*

Im not sure what happened next but they changed it to another vehicle which was closer and another 45 mins later (yes this is 2 hours later for a 999 ambulance!!) when the surgery staff/GP and practice manager were all ready to rip the ambulance mans head off, the ambulance arrived....
............only for him to say ''sorry I cant take her'' *cue me mentally slamming my head up against the surgery wall * but in reality saying rather curtly'' WHY NOT?!?'' apparently they couldnt take her as they hadnt got a sats monitor on board. I suggested that they borrow the sats monitor from the other ambulance to go over with but they said horrified ''oh no! we cant do that!!'' as if I had suggested the Queen herself run naked through the street

At this point I got a little bit annoyed (just a little !) and told the receptionists what they said..they assured me very loudly that they were logging all this down as a complaint and suddenly they could travel. The man from ambulance 1 accompanying the SATS monitor on ambulance 2 ( in case it got lost obviously) still attached to Seraphina...along with Ambulance 2's two crew,whilst the other crew member from ambulance 1 drove on ahead. SO one simple trip to escort my daughter to hospital required 4 ambulance men and two ambulances (work out what a cost effective way of using taxpayers money that is!!)

At hospital they took numerous bloods and found her iron level had dropped but not, thankfully,low enough for a transfusion. Her infection markers were up and so antibiotics were prescribed for that otherwise we were allowed to go home as we were in Sheffield on Tuesday anyway....what a day!

Today has been the Sheffield trip. The decision was made to start the Azathioprine now as she was suffering quite badly from nasty side effects from the steriods (increased anxiety, agitation, more seizures, self harming and increased ''Rettness''where our little girl is incredibly hard to reach) at such high does and when we were reducing them slightly her gut wasnt liking it.
he had the results from her biopsies which showed lots of eosinophil infiltration (for my 'gastro friends') and abscesses throughout her colon. I can understand why she has been in so much pain.

The consultant was concerned that her iron level had dropped so quickly and explained that in the cases where an inflammatory bowel diseasecalms but she keepas bleeding then a colectomy may turn  out to be the best option for her along with TPN but we are trying the azathioprine first which is another immunosuppressant to use along side the steroids. other medicines have also been raised as it was agreed her bowel is doing absolutely nothing at all on its own now and 48 hourly suppositories arent very nice for her at all...though may be neccessary if these meds dont work and her bowel has completely shut down.

She will also be having weekly bloods from now on to monitor her..
She is about the same weight-wise at just over 17 kilos which is pretty skinny for a child of 3'10'' but at least she hasnt really lost any more.

Your prayers as always are very much appreciated both for Seraphina and that breakthrough which will enable a cure for Rett syndrome...one day.

Friday, 28 October 2011

The news from Sheffield

Ive tried to think of 'clever' ways of writing this blog post...but quite frankly I cant write for an audience. I write how I think, what I think and so apologies in advance if it ends up being a bit of a jumble but thats the way it is.

We went into Sheffield Childrens yesterday,the journey up there was diabolical...heavy rain and then a 4 car pile up on the M1 meant that there was no way we were going to meet any appointment time and so I had to phone ahead and tell them we were stuck in a trafic jam. Those who travel to Sheffield childrens will also know how awful...or non-existant the parking is now so the thought of having to arrive in the middle of the day wasnt filling us with glee. On a previous appt David had had to park half an hour away and wait for us because there was nowhere to park so that he could come to the appointment too. We asked friends to pray hard.
We got to the Childrens at 12.00.....and drove straight into the only disabled parking space! we both said 'Thank you God!!' as the likelyhood of that happening was almost zero. I was pleased that both of us would be there for such an important appointment.

When we got there the Consultant had gone but they bleeped him and he very kindly came back up to speak to us. Seraphina was weighed...unsurprisingly she had lost weight again..she now weighs a kilo less than she did at 2 years old and her little ribs are sticking out.

Our Consultant had laised with a gastroenterology consultant in Great Ormond street Hospital in order to get the best plan and outcome for Seraphina.

He was fully informed about Seraphinas condition and took the time to answer all of our questions but the outlook in his own words was bleak for her.

She has a rare (but not unheard of) complication of Rett syndrome which behaves like an extreme inflammatory bowel disease and ends up in complete intestinal failure. He said Seraphina seems to be moving quite rapidly towards this and TPN shortly will be our only means of feeding her but , he is willing to try and hold off by using other medications for as long as possible. He explained the  fact that it looks like Seraphinas Jejunostomy has ulcerated underneath and thats why we have the rawness and begingings of ulcers coming through the surface. This will have to be investigated sooner rather than later but for now we are back on the maximum amount of steroids and he wants to introduce a drug called Azthioprine which is another immunosuppressant to try and get the inflammation down as much as possible.
There are other procedures which she may have to have done but I wont go into them here...just to say they arent pleasant.
He also discused with us disconnecting her large bowel completely and doing an ileostomy but we felt that this wasnt an option at this point particularly as none of the treatments will cure her they will just buy us more time.

At present she is only just about tolerating 20% concentration feed and that is with discomfort and bile...if we cant increase that over the next few days then we will need to go back to Sheffield to be admitted and potentially start TPN. No-one knows why her gut is failing suddenly quite so quickly but agreed with us that even back in 2009 when she had her volvulous that could have been caused by this disease in her bowel and by some miracle of God have managed to keep her ticking over for this long....there are no answers.

So, this is where we are now. To say that we were both in shock last night is an understatement. We both knew that there was no cure for Rett before but we werent expecting to be faced with the very real prospect of losing our little girl quite so soon...the future seems so uncertain right now and although my faith in God is very strong I still...hae to ask 'Why?' as the thought of not seeing that gorgeous smile and hearing her giggle, snuggling those wild curls and giving her eskimo nose kisses seems more than I can bear.

But I refuse to let this news beat me, beat us as a family...if the Rett monster wants my girl he's going to have a fight on his hands.
As long as my girl is smiling then so must we. I dont know what will happen in the future but I DO kow that God STILL has my girl in his care and why I dont understand why He is allowing this to happen, God is still God.
He may work another miracle just as He has with her walking and with her no longer needing oxygen...He may not

Im praying for that Miracle anyway....with all my heart.

Wednesday, 26 October 2011

and in again...

Just a quick post update.
we have only been home over the weekend and Seraphina is still not tolerating feed. Each time we try she seems to be in pain and the amount of dilute feed we get to before she gets upset seems to be less and less. she has had diahorrea again too with blood in it.
Sheffield wanted to admitt her yesterday afternoon and said they had spoken to Great Ormond street about her but when asked what the plan was they didnt have one. so instead we are going tomorrow morning to meet with the consultant and try and thrash out a way forward for our little girl.

The difficulty seems to lie in the fact that not many girls with rett syndrome have this extreme of problems with their gut..its like a kind of intestinal failure but no-one knows why or how to treat it. Seraphina is one of only 4 girls who have had this extreme problem for which as with the rest of Rett...there is NO cure yet.

The chaplain who came to visit us in hospital asked me whether I was angry at God for what was happening as he would be. the answer is categorically ...no. Im not angry. God hasnt 'made ' this happen.What I dont understand is 'why'., not why us as a family because the answer to that is simply 'why not us?' but why Seraph has to suffer so...it breaks my heart to watch.
This is where faith comes in...I dont understand why but God is still God, God is good...not some of the time but ALL of the time so I have to trust that although I dont see the plan in all this, there is one, and one day I will understand.


So today I am once more packing our things together for a hospital stay...I dont know what tomorrow holds,Im still praying for that miracle but I know whatever happens God has my Seraphina in his care.

Monday, 24 October 2011

Home for how long..?? Rett syndrome awareness

Well we are home after 3 weeks in Sheffield Childrens hospital.
A totally unexpected stay...we went for a routine clinic appointment with the surgeon. I had phoned the surgeons secretary at the begining of September and said that Seraph was losing blood in her nappies but the earliest we could be seen was the begining of October...well we saw the surgeon and he asked for a routine full blood count (iron level check ) as I asked whether he would do one and he acknowledged that Seraph looked ' a bit pale'
on the M1 motorway on the way back we had a phone call...come back to the hospital as Seraphinas HB was dangerously low....5.5 in fact!
we drove back to the hospital and within a few hours we were on a ward and Seraph was getting an urgent blood transfusion.
It was decided to do a colonoscopy and endoscopy once her HB level was up sufficiently to see where the bleeding was coming from.

I think I went through it all in auto pilot, so shocked was i at the level of her HB. It was only when she had gone to theatre I started to think..and kick myself for not realising sooner how sick she was. Now we are home I feel pretty much the same...WHY didnt I realise sooner..and how I wish I could ' make it all better' ...thats what Moms are supposed to do right?

After the colonoscopy the Consultant Gastroenterologist came to see me and told me that Seraphinas entire colon was inflamed and bleeding. He said it could be either infection or ( as he suspected) inflammatory bowel disease associated with Rett syndrome.
They put her on very strong I V antibiotics and waited for the biopsy results to come back. I explained that we had been struggling with feed for a while and she could only tolerate 5-6 days on feed before we had to drop to dioralyte again. They tried to re-start feed and everything that they put in was just coming straight back out again. she was in such pain she had to have a continual infusion of morphine to keep her comortable.

we werent getting anywhere. even after the antibiotics were stopped they couldnt get her to tolerate even 5 mls an hour of feed. she was put on TPN which is feeding throgh a vein...no a good long term solution bwecause of the side effects opn the liver etc but for short term it was just what she needed.
they also started high dose steroids.
within 24 hours the diahorrea had stopped and she was sitting up on the bed, not needing as much morphine and smiling that absolutely heart melting smile of hers.
The consultant said that it was definitely inflammatory bowel disease but that the steroids should sort it out. his collegue said that they didnt honestly really know what was wrong but ashe was behaving like a child with inflammatory bowel disease.

then...they tried feed again.

and along weith it the teeth grinding started as did the picking at her hands until they bled. still they pushed up the feed and eventually turned the TPN off. withing 24 hours of coming off TPN we were sent home..still on steroids but on a reducing dose.
by the evwening of the same day Seraph was back to diahorrea, horrible mucousy stools and a painful tummy...ooh not forgetting the bleeding bottom.
I phoned te childrens hospital in the morning and the dietician told me to stop the feed and put her on dioralyte and then gave me a plan to follow to try and build up feed again.she said she thought the consultant hadnt realised exactly how fragile Seraphinas bowel had become.

Needless to say we have had to 'relax' that plan a bit and take it a bit more gently even than the dietician said but we are getting her to tolerate feed very very slowly. she is grinding her teeth again and her tummy once again today looks bloated but she is smiling on and off...by beautiful brave girl. I so wish she could tell me how she was feeling, whether her tummy hurt...so i wold know whether to increase feed again or to let it be.
She was so much better on TPN but that is not the answer...thats a last resort.

we have had no follow up phone call from the dieticians either here or at the childrens which is disappointing...we feel like we have just been left to 'get on with it' as they dont have any answers.

we are due to go back to the childrens hospital on the 15th...if we can keep her 'well' till then.

Im sorry if this post has seemed a little bleak...but this, at this point in time is a brief glimpse into what Seraphina has had to face on a daily basis due to the ravaging effects of Rett syndrome and its associated conditions.

October is Rett syndrome awareness month. Throughout this month many parents of litle girls who suffer just like my little sweetheart have been posting to raise awareness of this little known disease...a disease which has taken so much from my gorgeous girl.including her ability to speak.

However there is hope...Rett sydrome has been reversed in mice..it is potentially REVERSABLE.
But research takes money...PLEASE consider donating ...any amount you have to the Rett Syndrome Research Trust http://www.reverserett.org.uk/   and help speed a cure for my darling Seraphina and girls like her.

Thank you.

Thursday, 8 September 2011

12 months

Tomorrow it will be 12 months since we received Seraphinas diagnosis.
This evening I got a message from a friend who was pregnant the same time as me but who I havent heard from since then asking me how Seraphina enjoyed her first day at school and attaching a photograph of her smiling little girl standing up straight in her school uniform.

It cut me to the core.

Dont get me wrong, Im not angry or bitter at this lady...she didnt know about Seraph and Im so pleased for her and her little girl (who incidentaly looked gorgeous in her school uniform)..But its times like these that it hits you again...everything goes ticking along quite nicely and then WHAM!...pain....like rubbing salt into a fresh wound..it stings.

Its also not that I 'feel ashamed' in any way of her...Im as proud a mummy as ever lived...my girl is an absolute star,I just wish it didnt have to be this way.

God has been doing some wonderous things in my little girls life, my life and the rest of my family and for that I am so so grateful BUT....I am human and sometimes....just sometimes...when you think you have 'come to terms' with your daughters condition and everythings fine....WHAM! you get hit a curveball and reminded of what could have been....
....and it hurts...it hurts real bad.

Wednesday, 31 August 2011

Never too late

This is a post I have been meaning to write for a week or so...but something always 'got in the way'. he middle of Summer holidays children everywhere (well it seems like it at times) and a feeling like I need 48 hours in a day :)
Maybe God was keeping it back till now, I dont know,I just know that as I was awake last night with Seraph my heart was aching, not for myself but for another couple,another precious family of Gods which had been hit by the 'Rett Monster'

''I thought I would teach my daughter about the world but now it seems I will have to teach the world about my daughter'' as soon as I saw these words posted I KNEW.
with my breath held I typed ''why?'' already knowing the response. When the reply came I couldnt help myself...I cried. I cried because I remember all too well the earth shattering nature of genetics results, the dazed first few days when you get a diagnosis.
The fact that I had 'randomly' (to some people) crossed paths with these people .....well maybe it was Gods way of handing out a lifeline as Kelly from GirlPower2cure had handed me almost 12 months ago....I would like to think so.

And so I needed more than ever to write this post.
Seraphina....now almost 5...on 27th November. has had more than her fair share of problems surviving being born at 25 weeks, having Cerebral palsy (albeit mild) being ventilated 3 times, numberous blood transfusions,operations,tubes inserted,....
Rett took everything..her speech,her ability to weight bear/stand..she only ever took a couple of faltering steps and fell so never walked, her ability to feed, even her ability to tolerate feed in her stomach via tube so that she is fed through her bowel, she never said Mama something that I cried out to God about...that hurt so much...she hand wrings, self harms,has seizures, breathing abnormalities etc. currently she is on 27 doses of medication a day...a lot for a little one.
and here we set the stage ...Miracles DO happen...I  witnessed not one but two recently.
Here is the first.....http://youtu.be/QnLi7iI5J-g
This is my little girl walking for the first time.Anyone who knows us personally or from Facebook will know that a couple of months ago along with the physios we had had to abandon the idea of using a gait trainer/walker with her as she couldnt take any weight through her legs at all and it was unfair on her to keep trying. Then here we are again with the physio and she does this!!
From one week not taking any weight at all to the next walking with only the support of holding someones hands...the physio was just as astounded :-)

And then the second miracle a week later...my little girl put out her arms to me and said something I thought I would never ever hear...she said 'Mama'. My little girl who doesnt speak, who hasnt said anything since before the regression phase of Rett when she said 'Bye bye' at about 12 months. There arent words to describe how my heart melted at hearing that word. She has said it just once since then and it was wonderful.


So what I would say to this new Rett family is NEVER give up hope, with God ALL things are possible, I cannot promise you a cure but I know that with God ANYTHING can happen. You are not alone.

Seraphina is not well by any means, her bowel is slowly shutting down leading to frequent 'rests' on dioralyte, she still has a life expectancy of around 6 according to the Dr's and TPN has been mentioned but thats another post..another prayer and hope in God.

I dont know what the future holds for her and us as a family - but I know who holds the future.

                                                                         'Sisters'


Saturday, 6 August 2011

almost a year

Its almost a year since we received Seraphinas genetics results, a time when life as we knew it fell apart. when the maybe's we darent face became realities, when hope (except from a miracle from God) for a full recovery were lost.
oh my....what a year its been!.whilst keeping up the front of having it 'all together' I have fallen apart...we all have. I have reached the depths of despair personally, felt my life crashing around my ears.

But........God.

Some people reading this will undoubtedly go 'oh no! not another God mention' but..as I have said time again I will not lie, my blog is from the heart. When I had reached rock bottom....God reached out to me..In my total despair  I was not alone.

Tonight,I want to thank God for my littlest daughter.

Seraphina you are the world to me, life may have dealt you an awful blow but you have risen above it...indeed you have done more than that, you have soared like an eagle, as though this life cannot touch you. you are a star..your beautiful smile, your spirit which is never defeated. Seraphina I love you and admire you so much.the way you have dealt with this puts me to shame.you suffer so much and yet you smile SO much.

When you are going through such a tough time you need friends..you value your friends so much...you find out who your true friends are. I thank God for all my friends.
There are many people who have helped me along the way..particularly in the last 12 months...who have helped my family
Tonight I want to thank them and ask God to bless them as they have blessed me....

To the stranger ? I dont know who who phone my children before Christmas when I was in hospital with Seraphina and couldnt buy them presents. He pretended to be Santa and told the children to look outside. ....outside was a sack of presents. Thank you...you made my familys Christmas...I wlll never forget the wonderful thing you did xxx May God bless you.

To Dave Hodges...Thankyou for being Gods taxi, for being there when I needed to do a rushed trip to Sheffield Childrens hospital, for being willing to just drop everything and ferry me and Seraphina up there. you and Sarah and your precious children mean so much to me. God bless you all.

To Penny...thank you sweetheart for all the little things...the trips to Asda as silly o clock, the chats in the car post schoool run, the fact that you are there for me at the end of the phone, the fact that you miss Ann as much as I do and I can talk about it with you without feeling silly + numerous other things.

To Claire Paxton... thanks for making the vest for Seraphina..we have used it so much, the poppers are falling off now but it has been so valuable for keeping Seraph warm particularly when she has been really poorly and unable to regulate her body temp properly.you have helped me more than you know...you are an utter star to me xxx love you lots xxx

 To Rachel...my lovely university friend, bridesmaid and best buddy. Thankyou for being there, by making my life better just be knowing you are always at the end of the phone. but persisting even when I am at my lowest, by all the numerous ways you have shown yourself to be an angel to me...we have a lot of history together you and I...and I thank you for every precious moment of it. I was truly blessed when I met you. I love you so so much xxx...words arent enough xxxx

To the person who sent the silver heart...I honestly dont know where it came from or how it came to be in my coat pocket but the times i have put my hands in my pockets in times of stress and found it to be there are numerous, thank you for the blessing it has been to me, the reminder of Gods love and peace.

and lastly but not least to God, who has made all this possible. who knew how hard we would be hit by all of this and provided a framework of people to support me and my family through it all. I have willingly given you my life and even this isnt enough...I would never be able to repay you but, you dont desire that, you want my heart and you have it...I love you God... forever and always.

I thank God for bringing me and my family through the last 12 months,for helping me personally to a much better place mentally and spiritually..life is good



and where are we now?... to coin a phrase from another beloved friend of mine Tina Hillier....I dont know what the future holds but I know who holds the future.

Friday, 29 July 2011

'I can only imagine'

''Surrounded by Your glory, what will my heart feel ?


Will I dance for you Jesus ?or in awe of you be still ?

Will I stand in your presence ?or to my knees will I

fall ?

Will I sing hallelujah?, will I be able to speak at all ?

I can only imagine

I can only imagine''

I've had the Lyrics to this song by Mercy Me ( my recording on the Soul Survivor album) going round and round in my head for the last 24 hours or so. I have listened to it many times before but yesterday when I played it with Aimee and Lydia the words really struck me...what will it be like? How will I feel when I am standing in front of Jesus?

Wow! WHAT a thought....one day I will stand face to face with Jesus...one day I will see HIM...I get butterflies in my tummy just thinking about it and the certain hope I have...I KNOW it will happen one day.

I guess the only thing I can liken it to is what happened to me is after emailing and texting..even MSN'ing someone I met online. even seen a photo of. I had 'chatted' via cyberworld for months..shared secrets/fears/hopes and dreams and had become very close...I considered her a good friend, we thought alike is lots of things. One day we arranged to meet up in person.
The night before I had butterflies, and yes occasionally felt a bit nervous 'what if she didnt like me after all?'

I arrived at the meeting place far too early and nervously played with my mobile phone. The I spotted her around the same time she spotted me..our eyes met and all fear was washed away, we just threw our arms around one another and hugged, our long chats and shared moments over the months meant we knew each other inside out and there was a connection, love and respect between us.

You know I think thats what it will be like when I meeet Jesus. Yes I will probably be a little nervous but as soon as our eyes meet...theres going to be no fear.I will be looking into the eyes of perfect love..of someone I have 'chatted' to for not months but  years, who I have shared my hopes and my dreams and fears with.Someone who has been there for me and loved me through the good times and some really tough times.
you know what...I think my response will be the same as when I  met my friend for the first time...we will just run and hug each other.

What a wonderful wonderful day this will be!...Im SO excited...Im sure my words dont do it justice ,but then at the moment....

...I can only imagine.

Tuesday, 26 July 2011

Holiday time

We have just come back from our holiday.It was something we had looked forward to since January, we had saved hard to afford the booking fee and were going to a house owned by the Harriet Davis trust as it was specailly adapted for disabled children and had everything we needed.
The house was in Wales..Tenby to be exact, somewhere we had never been before..we were ALL extremely excited and prayed hard that Seraphina wouldnt be taken into hospital so that we couldnt go.
Well Seraph was healthy and so off we went...

The house was everything we had hoped and the view from the top window of this three story house was over Caldy Island which is an island owned by some monks who lived in the Monestary there and grew lavender which they made into soap and lavender bags.
I SO wanted to go over to the island and the housekeeper who showed us round the house told me that it was possible to take wheelchairs over too so we were resolved to go as soon as possible :)

We arrived at the house on Saturday afternoon...on Saturday evening Seraphina had a mild temperature.At first I didnt think anything of it but by the early hours of Sunday morning her temperature had spiked worryingly high and refused to go down.
David and I chatted and decided that as this temp had started within 48 hours of having her portacath flushed that we should follow protocol and take her to hospital...the question was which one!

I phoned the number on the house noticeboard and was a little concerned to find this hospital had closed for the weekend!?! I phoned another number and eventually got through to someoone who said they would arrange for a nurse to phone me back. This she did and told us to take Seraph to the 'Cottage hospital' in Tenby..great we thought, not too far away.
When we got there the Dr was waiting for us....he was very nice and caring but explained that they only had one ward for old people and one dr (him) and were unable to deal with Serph there. However he did examine Seraph and reached the conclusion that we had dreaded...Seraphina was quite likely suffering from early Septacaemia. He arranged for us to be transferred to another hospital more able to deal with her and phoned on ahead. This hospital was an hour away from Tenby (good old Sat nav!)

To cut a long story short the other hospital cannulated Seraphina and took bloods which backed up the theory that Seraphina did in fact have early Septacaemia. She was started on some very heavy duty antibiotics straight away.
All this time David and the children were sitting in the car waiting and when I told him that they were keeping her in everyones heart fell.
Then we spoke to a lovely Consultant who was very sympathetic to our plight and after staying in the hopsital all day he let us take Seraph home overnight on 'home leave' as long as we were back in thew hospital first thing in the morning. We also promised that if anything changed that we would bring her back asap.

It was good to be back in a home environment but not much sleeping was done as Seraphs temp remained high..climbing to 40 degrees at one point.
The folowing day wasnt much better but..she hadnt got any worse either.by Tuesday more results were back and they showed that she also had a urine infection and a stoma infection as well she had also developed a chesty cough.
Each day we had to drive to the hospital for early morning and stay there until her antibioics had slowly run through and she had been reviewed again by the drs.
On Wednesday she was  improved, her temperature was normal but she was still not herself by any means. The hospital swapped her to 'oral'antibiotics so that we didnt have to keep going back and forth to the hospital.we tried to go to the Chocolate factory on Wednesday but after a couple of hours Seraph was feeling so poorly that we had to come home.Wednesday night she started with gut problems due to the antibiotics. Thursday we went on the beach very briefly in the morning but Seraph was still suffering so sadly we made the decision to come home that day.

Everyone was disappointed, the children especailly as the holday was something we had looked forward to so much.
On Wednesday I have to admit to being generally angry...not at anyone inparticular but at the unfairness of it all...or so it seemed.
I went up to the bedroom in the house and prayed 'Lord renew a right spirit within me, remove the anger and the bitterness of what has happened' I had explained carefully that we didnt know that Seraph would be ill ,it wasnt her fault etc etc but inside I felt as disappointed as the children.

Then God showed me all the positives...Seraph had been well looked after and made well by the prompt action of the Dr's. we were all still together.
and admittedly snatched but all important moments we had shared together. When driving to the hospital we were playing 'Saviour he can move the mountains,He is mighty to save..' just as we drove through some huge hills/mountains. Awesome...Our God can move things as huge and majestic as these...He created them...WOW!!!!

Then...driving once again we went past a lovely quiet stream where sheep and lambs were freely grazing and lying down by the waters edge...it ws idyllic...'He leads me beside still waters' our own personal illustration of psalm 23!

In the morning before we left we went to the beach and I carried Seraphina to the waters edge, rolled her sleeve up and on the count of 1...2....3...SEASIDE! I crouched down while Aimee dipped Seraph's hand into the cold sea water much to Seraphs amusement...she giggled and giggled,jigging around in my arms as I held her :-)

on our way back we stoppped in a vineyard for a quick look...it was truly wonderful and as we walked throough the vines we chatted about all the places in the Bible that the illustration of a vineyard is used..looked atthe way the vines twisted themselves around their support and grew higher and higher...saw the baby grapes growing. David and I also tasted honeyed mead..something which bought the Francine Rivers book I had been readingto life....it was set in Biblical times and spoke of the Romans drinking honeyed mead.

there were other moments too...small minutes of family, closeness and reminders of Gods presence through it all.No, we didnt have the family holiday that we were longing for but 'God works ALL things for the good of those who love HIM' out of trials and saddness God is still at work creating moments of beauty and memories to treasure..its just up to us to look for them.
Thank you God for the precious little things



Tuesday, 5 July 2011

I read a book....

I had drafted out a few blog posts...but this morning I knew I needed to write about something else today.
I read a book yesterday...well in truth I started it yesterday afternoon and then awoke at 4am and carried on reading. I have almose finished but It has touched me SO much I had to share it.

The book is called 'Heaven is for real'
I've read a few books on Heaven, its something which interests me not just because of my Christian Faith but because of my own personal experience.
I know I am taking a risk typing this up, its something I have only ever shared in part with a couple of people before...but you know, I have said I will always speak the truth in my blog...from the heart.

I was born into a non-Christian family,Im sure my parents believed in God but it wasnt something that was spoken about.I had an older sister..Catherine she was called.She had long dark hair and huge soulful eyes and was as fragile as a little bird. She couldnt run,she couldnt play ball.Why? because she had a very serious heart condition. It hadnt really been seen before and to be honest it was a wonder she had survived so long.But she needed a big surgery which would take place when she was 6 (I was 4 at the time). The surgery was to take place at a hospital which had a rell renowned surgeon working there at the time..the hospital was called Harefield.
I remember vividly the night before Cattherine was to leave for the hospital. I can still see her eyes earnestly loking into mine as she told me as a little 4 year old that she was going away. She said that she wouldnt be coming back and told me to look after Mummy and Daddy for her.

she knew she was going to die.

But...she also told me where she was going... 'Im going to be with Jesus Caro' she told me ' but I will see you again in a little while' Then she laughed and stuffed her foot in my face saying 'smell my stinky feet' and the serious part of the conversation was over.

When she didnt come back I felt desolate. The operation had been successful but...it was too much for her little body to stand and so she never regained consciousness.
I remember it was the Summer of 1976...we had both had pushchairs and I placed them side by side in the long stretch of scorched lawn and pushed first mine forwards a little and then my sisters a little trying to somehow will her back by my side. I rememer the aching, the confusion, the loneliness.

And then something happened..

A bright light, I looked up and immediately fell on my knees as the sky seemed to open and for a few moments I glimpsed what I knew even as an 'un-Churched 4 year old' be Heaven.

I believe God reached out to me in my sorrow then and showed me it 'was ok' and that Catherine was safe and happy and in the most beautiful place I could ever imagine.
In dark moments after then I would wish with all my heart I could die too to be with her but somehow I got through these times (I believe God held my hand through them) and that vision was something that I held onto as i was growing up until finally at University I gave my life to the Lord.

And now I find myself to some extent in my Mothers shoes..with a seriously ill child who is 'life limited'. In this journey with her and my Faith which after a bit of a blip is now stronger than ever.When my little girl leaves this place Idont just believe...I KNOW where she will be going,I know she will be safe and loved and will wait for me,I know her brother is alreadt there  waiting there to meet her.

I walked into the Christian Bookshop..looking for a completely different book and suddenly this particular one seemed to jump off the shelf at me.I bought it actually thinking of a dear friend who had lost a daughter,knowing in my heart that God wanted her to read it and that it would offer some comfort. When i began reading it I just couldnt put it down...some of the things this little nearly 4 year old talks about are EXACTLY the same as what I saw in my vision. He doesnt mention specifically the beautiful rolling fields, the trees but he mentions the colours, the vibrancy and the rainbow coloured horse.

I realise that its a Christian book but...even if you dont believe...give it a try..read it with the simple innocence of a child and guarantee you will be touched by it too.


Friday, 24 June 2011

Letter to my littlest

Dear Seraphina,

Im sitting here watching you sleeping, you kept me awake again last night...even after you had finally dozed off to sleep...you know why? You were giggling in your sleep..again :)

Watching you sleep, you look so peaceful, so pretty with your mop of untameable curls and your pretty little nose I love doing nose kisses with. Your beautiful little mouth with that enviable perfect cupids bow...God made you so perfect.I love you so so much.

Today I just want to thank you, I feel so blessed having you for my daughter. You have so much going on, so much you have to put up with and yet you are so happy, so smiley...so giggly.

Thank you for letting me come on this journey of your life with you.

Thank you for the honour of being your voice.

Thank you for being patient with me when I get things wrong or dont understand what you need straight away....I know how frustrated you must feel

Thank you for the way you look into my eyes and tell me you love me without saying a word....you bless me

Thank you for showing me how to take pleasure in the simple things,for slowing me down.

Thank you for inspiring me to write stories again, blog and paint and keep piggys.

Thank you for giving me a reason to keep going, a new perspective.

Thank you for the funny way you grab my finger to use it as a pointing tool on your ipad.

Thank you for the utter joy of seeing you laugh the other day on the donkey, for seeing the excitement on your face when you held a baby duck...

Thank you for trusting me to take you on a bouncy castle...and reminding me what fun it is.

Thank you because no matter how much hard work it is at times to look after you I get it beck ten or twentyfold in the every day beautiful things you do and the important lessons you teach me.

I dont know if you will ever be able to read this but nevertheless I hope you feel my love for you and know how much of a blessing you are not only to me but to your brothers and sisters too.

I love you to the moon and back and somewhere over the rainbow

forever and always my precious girl

Mummy x






Wednesday, 22 June 2011

You just do

THIS POST IS DEDICATED TO THE MANY FABULOUS PARENTS OF SPECIAL NEEDS CHILDREN OUT THERE.I RESPECT WHAT YOU ALL DO SO VERY MUCH.

Once again today I have been asked the question 'How do you cope?'

When I'm asked this question I usually just smile,slightly embarassed and lost for words and them quickly move the topic of converataion to something else.
Occasionally I have been daring enough to say 'you just do and add that the person asking the question would do just the same' but most of the time I say nothing.

Once,just once recently the truth slipped out and I was met by a horrified and very disapproving look


So here, as much for my own benefit as to answer the many people over the years who have asked this question is the answer '' BECAUSE I DONT HAVE A CHOICE''

This isnt meant to sound cold or resentful,self-pitying or any of the many things that I am sure have crept into the minds of some people. It is simply the truth.They are my children who bless me daily and this is the' hand we've been dealt' for want of a better way of putting it.
There are many many wonderful special needs parents who I am sure will understand and relate to exactly that. We do what we do. We find our own coping mechanisms.

In more detail...Its hard. The repeated hospital trips are isolating. My coping mechanism has been the same each time.
I shut down. Simply that. I have the ability to take my beautiful precious fantastic little girl and place her on the hard cold table of the theatre, reassure her when she cries panic stricken as they anaesthatise her. Tell her over and over quite calmly that I love her and turn to walk away.I have mastered the art of smiling and making small talk to the anaesthetic doctors and nurses as she struggles in my arms even to look as they bend over my little one who suddenly looks oh so small on that big bed and place her dummy and iggle piggle blanket beside her before walking away.
Am I hard? Am I un-natural?...maybe, I dont know,I hope not.I think I am just well trained.
When every fibre of my being whats to turn,pick her up and run with her holding her tightly in my arms I dont...I walk away....and most of all I NEVER let myself cry.

If I feel tears rebelliously pricking at my eyes in these situations I have learnt to dig my nails hard into the palms of my hands to stop them, or bite my lip hard until I get to the safety of the parents toilets where I cant silently scream..and breathe...just not cry. In hospital I never cry.

I cope by praying,hoping and when there have been times that hope seems gone I simply hang on even when my faith has been in shreds I have to hold on.

It hurts everyone.When we are in hospital for weeks my children go from saying 'I miss you' and 'when will you come home' to being told to say hello to me and haiving stunted mono-syllabic conversations. I dont have words to comfort them and they...cope.
The last time we were in I had a phonecall from someone who told me how upset my children were without us....being faced with this reality which yes...I already knew was.....well there are just no words.I want to be able to split myself into a number of different pieces to be what each of my children needs at that time but its not possible. My children 'the left behind' ones are so brave but I really do wish they didnt have to be.
I screamed at God for the unfairness of it all and yes I did the why me? why us? but the reality is why NOT me?? why NOT us?
David visits when he can but its hard for him with us being so far away...he copes.too well at times and we sit both of us by her bed making small talk and talking about mundane things both carefully skirting round the main issue..the littel girl asleep between us.

We come home and everyone readjusts...mostly but not quite...into the every day routines again.However I am reminded of the fragility of it all when we announce we need to go to sheffield for an appointment and the youngest ones ask if we will be coming home or if they need to go to grannys for dinner.

I wish so I could 'make it all better'..that is after all what mums are supposed to do.But the reality is I can't. The only thing I can do is love them with all my heart, to make as many happy memories with them as I can...all of us together.To give them sweet glimpses of  'normality' as we did with the Donkey Party recently.


And so with another big Op looming the answer is still the same..I cope because I have to..we all have to...I cope because I love them.

Tuesday, 21 June 2011

Home group,what Seraphina taught me.

I watched a film last night and in it one of the characters said something whihc really hit home with me
'' You're in a perfect place -  surrounded by Grace'' and '' God dwells in me - as me ''

God can use anything and anyone to speak to you.

I 'signed up' for a Bible study group this week..Its something I had wanted to do again for a long time but through my questioning of everything I had put it off.
I posted a comment on facebook about wanting to join one and had a lot of lovely offers..but I didnt act on them.I didnt know where to go so I thought I would let God decide.

God decided, and arranged it all...then I got scared.I found out that the home group contained a lot of what I term 'Big Christians' one in particular that I have always always felt completely inferior to.
Well I have been sweating about this first meeting since Sunday, ridiculous I know but I have.

Then it hit me, I love my children all equally they are all absolutely adorable.They all have different personalities strengths and weaknesses. I love Seraphina just the same as the others.

God feels the same way about us. Gods love for us has nothing to do with our accomplishments.I could complare Seraphina to the other children...She cant walk, she cant talk, she cant braid her hair or make things for me  and Yet my love for her is no different...she is utterly precious and she gives me gifts every day...
...the gifts she gives me is when she looks me in the eye and smiles or when she is tired and she puts her arms out to me when she is tired and wants to be picked up and carried.Im her parent thats what Im here for, I love her.
I know God feels the same way about me.he loves it when I 'look hinm in the eye' and when I am tired and reach out for him to carry me for a while.

Ive known this in my head for years but knowing it in your heart is another matter entirely.

God is not interested in a performance of a perfect woman who glides through life as if suspended several inches off the floor.
God dwells in me....as ME with all its faults and inconsistancy.
As for Bible study group...yes I am still nervous.But I know I am in a perfect place...surrounded by Grace.
as a friend gently reminded me ''we are all the same to the one who matters''

Saturday, 18 June 2011

A whole month!

Thought I would post a little update as I have been asked by a couple of people as to our current situation.
Well we have been out of hospital a WHOLE MONTH now! :-)
Cant tell you how much we appreciate this as the monthly stays were getting a bit much.
In that time yes, we have struggled. Seraphinas gut is becoming increasingly difficult to manage.Having said that the rectal tube we have has proved to be really valuable.We have had to use it twice in the last month when she 'blows up' to deflate her intestines.
Its not a nice job, its incredibly messy and I hate doing it purely because of the discomfort and fear it causes her but I have to tell myself that to leave it would mean an ambulance trip and hospital stay which would be even worse for her...so you just grit your teeth and go ahead.

As far as where we are now..well the good news is finally her gut seems to be absorbing her feed again.At times I have not known whether we were conming or going as she has been fed and Ive thought 'great, we're on the up' only for her to 'explode' everywhere and literally dump all her feed. Those who follow me on twitter will have had to put up with some 'Poo everywhere' tweets as I let off steam and so apologies for that. Some days I have had to bath and change her and wheelchair covers 3-4 times and it has from time to time got me down.
As far as her energy levels go she has good days and bad. Pacing things for her is a little tricky and sometimes I get it wrong. She recently had an absolutely fabulous time at a party at the EST Donkey sanctuary in Birmingham. We all did to be fair. It was organised by the Livvyssmile charity and we all went to spend some family time together. Seraphina had her first donkey ride...you know what I dont think I will ever forget the look of pure joy on her face or the giggles when the donkey started to trot :-).I will try and get some pictures posted of it very soon x
The instructors had asked beforehand if I thought she would cope with a trot and I said ...'go ahead and try' which they did...well my little dare devil thought it was the best bit and when the donkey slowed his pace again she was jigging up and down in her seat trying to make him 'go faster' again...very kindly the donkey obliged for another trot .
Even typing this is making me smile and chuckle...its just such a precious memory.
The day wasnt without its drama as Samuel decided to have a fight with the bouncy castle...it won and Sam lost his front teeth (they were wobbly I hasten to add) but you know how much mouths bleed. He was ver brave though and after a it of a cry and cuddle he went on to have a fabulous afternoon aided by the balloon modeller  who made him and elephant! The girls had fun doing circus skills and even Joseph was joining in by the end of the afternoon. All in all it was a lovely day to remember and let our hair down after the in and out of hospital recently.

We have had to make a hard decision with Physio recently. We tried to adjust and put Seraphina in her old gait trianer...sadly it didnt work. Seraphina has no strength in her legs any more and even with support she cannot weight bear and scoot along like she used to...well not at all. Physio has decided that its just not fair on her, the gait trianer is just not suitable any more and she clearly wasnt enjoying it. This was somewhere we didnt want to go at all...but something we have to let go, hard but neccessary.

We are back in hospital on Monday, up in Sheffield. We have an orthopaedic review to look at her little legs and also monitor her scolliosis and a meeting with the surgeon to discuss her next operation. This is something I am not looking forward to but something we cant put off. We cant continue to use a rectal tube long term, it just isnt fair on her so the plan is to put a third stoma in her bowel. Sounds simple enough apart fromt he fact that Seraphina does VERY funny things like stopping altogether and going on strike if anyone so much as glances at her bowel let alone thinks of operating on it.

Im guessing the 'letting go' will be tested again, good job God is there to catch me at the same time as holding my darling Seraphina.

'' The Eternal God is your refuge and underneath are the Everlasting arms'' Deut 33:27


Monday, 13 June 2011

Loving and Letting Go

This post is very personal to me, but I wanted to share this part of the journey to hold myself accountable and so that , if anyone else out there goes through the same thing either now or in the future, that something of what I say may help.
My Children are my world,I love them utterly, completely and nothing they could ever do or say will change that.
I love them so much that the thought of one day losing one of them has been more recently more than I could bear.
Its not yet a year since Seraph had her formal diagnosis of Rett syndrome and in that year I dont feel that as a family we have had tme to draw breath before the next hospital visit or the next piece of bad news or crisis.
It has taken its toll on all of us.
For me it has thrown me more recently into a state of exaustion and..yes I will admit it depression. I am admitting this becuase I am through with being not completely honest.Purely because of distance it has meant that hospital decisions have been mine alone to make, no fault of Davids, he has had more than enough to cope with being a father to our other 5 children and hold down a full time and very demanding job.

My faith is very important to me but even that has been tested. I have looked into putting my trust elsewhere,other means of 'saving' my girl out of total desperation.

Believe me when I say all other means are futile.There is no magic answer. I have been so exeedingly stupid.
Today I have learnt that the only way I can save her and myself is to let her go. Gods care is more far reaching than mine,Gods power and love for her more powerful than mine.
The all consuming fear every time she gets poorly and stops breathing or starts fitting is made worse only because of my lack of trust in HIM who 'Is able to do immeasurably more than we ask or imagine' (Eph 3:20)
Today I have asked for forgiveness. Im not going to say for one instant that 'yay, everything is going to be hunky dory now'.But what I am going to say is that I have made a decision...to Trust God with Seraphina and to Let Go.Something I havent ever before been able to do.
I dont know what the future holds...but I know who holds it.
I believe God knew I would come to this point...because He had already provided someone else apart from Him who understood my fears and who I have spoken to today. They know who they are and I thank God for them.
After I prayed initally...a piece of paper fell out of my Bible.I cant even remember copying it..but i felt it falling out at this moment quite apt.
I'll share it with you
Its called 'When all means fail' and is by someone called David Wilkerson


To believe when all means fail is exceedingly pleasing to God and is most acceptable. Jesus said to Thomas, “You have believed because you have seen, but blessed are those that do believe and have not seen” (John 20:29).

Blessed are those who believe when there is no evidence of an answer to prayer—who trust beyond hope when all means have failed.

Someone has come to the place of hopelessness—the end of hope—the end of all means. A loved one is facing death and doctors give no hope. Death seems inevitable. Hope is gone. The miracle prayed for is not happening.

That is when Satan’s hordes come to attack your mind with fear, anger, overwhelming questions: “Where is your God now? You prayed until you had no tears left. You fasted. You stood on promises. You trusted.”

Blasphemous thoughts will be injected into your mind: “Prayer failed. Faith failed. Don’t quit on God—just do not trust him anymore. It doesn’t pay!”

Even questioning God’s existence will be injected into your mind. These have been the devices of Satan for centuries. Some of the godliest men and women who ever lived were under such demonic attacks.

To those going through the valley and shadow of death, hear this word: Weeping will last through some dark, awful nights—and in that darkness you will soon hear the Father whisper, “I am with you. I cannot tell you why right now, but one day it will all make sense. You will see it was all part of my plan. It was no accident. It was no failure on your part. Hold fast. Let me embrace you in your hour of pain.''

Beloved, God has never failed to act but in goodness and love. When all means fail—his love prevails. Hold fast to your faith. Stand fast in his Word. There is no other hope in this world.

Part of My Baptism Verse..because God knew


'' For I believe that neither death nor life,noreangels nor principalities nor powers,nor things present nor things to come,nor height nor depth nor any other created thing shall be able to separate us from the Love of God which is in Christ Jesus Our Lord'' Romans 8:38-39



Sunday, 12 June 2011

Promises

I promise Seraphina and all my other children every night " Mummy loves you - always" even if they are asleep I whisper it into their ears.It's important to me and I mean it.

Promises are spoken so easily.
"Promise I'll be your best friend" in the playground.
"I can't do it now but we'll do it later,promise"
"I'll see you Saturday,promise"
Promises are such important powerful things and yet sometimes we all to easily promise something without realising the consequences.

Broken promises hurt,fill you with disappointment and can sometimes,depending on how much you have depended on to that promise, cut you to the core.

Childhood can be filled with broken promises and this makes believing stuff including Gods promises, much more difficult even as adults.However God doesn't say anything unless He means it.
God has promised that nothing can ever separate us from the love of God (Rom 8: 38-40) not only that but he has "sealed us and given us his Spirit in our hearts as a guarantee"(2Cor1:22).He really does mean it, He's not saying it lightly.

Its so important that if you say you'll do something - YOU DO IT!

I always try to do this and I dont always get it right, but I am going to try extra hard from now on to be as firm in my promises to others including my gorgeous children as God is to me.

I hope when I say to my children "I promise" and look into their eyes they know that I mean it.

Friday, 10 June 2011

The child who reached for stars

Once was a a child who reached for stars

convinced that they would come

If she but only knew the words

to summon them



She spent long nights attempting this

trying every spell she knew

to call them down,these bright things

in the morning tears would come



No matter how high she reached

and how she called and called

no star would fall into her arms

no shining light for her



and so into a woman now

the little girl she grew

still yearning for her own bright star

and her Creator knew



He put them there

those shining stars He'd counted one by one

He'd given them their brightness

From his God light clear and true.



He said ,"You don't need my stars

for they're not yours to hold.

Inside you have your own light

Your Spirit strong and bold"



"I put it there, I made it

to shine brightest of all,

but you have left it to grow dim

while waiting for a star to fall."



"Take my hand ,I'll show you

how to once again stand tall.

To make your light shine brighter,

to make its beauty shine for all."



She saw the years she'd wasted

after speaking long hours with Him

She no longer needed the beauty of stars

true beauty and light comes from within.


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.

School.

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