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. 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.....
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 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.


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.


Some people reading this will undoubtedly go 'oh no! not another God mention' 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 suffer so much and yet you smile SO much.

When you are going through such a tough time you need value your friends so 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 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 have helped me more than you are an utter star to me xxx love you lots xxx

 To 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 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.