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 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 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 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


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 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 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 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 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 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


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.