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 :)