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.