This year I decided to join 'One Word three sixty five' as an alternative to new years resolutions.
My one word for this year was - Strength.
Since choosing this word I seem to have had many opportunities which require it. Strength of mind, of character, strength in my faith etc neer mind physical strength.
Seraphina has not being doing so well. We havent had much in the way of stability over the last weeks. one minute shes up and her gut seems to be coping and the next shes down and having diahorrea and bloating in her tummy. Shes also picked up infections really quickly requiring antibiotics which mess up her gut even more. We have had many really close calls with hospital. but we have got through them.
Now however is a different matter, shes had another bowel bleed, not masses, but enough. she had to be put back on dioralyte as she wasnt tolerating feed, shes lost another kilo and a bit in weight over the last two weeks. The childrens Nurse and the dietician phoned the hospital...so did I.
The consultant phoned me yesterday. He wants Seraph admitted indefnitely, to start her on long term TPN which means she will be fed through a vein. she will have surgery whilst in to find out whats going on and how to treat her for the best. He has mentioned in the past that she may be better off if we remove her Colon. ?? whether that is correct or if that will end up happening.
I know there are other mums out there with daughters on TPN, I know it helps enormously, but I also know that long term it kills...by destroying the liver. TPN is a last resort.
I need strength...Strength for Seraphina, to let go and realise I have done all I can to keep her at home and enterally fed, to love her and help her through this next step on our Rett journey. I need strength to keep myself going when all I want to do is curl up and cry and need strength to walk away from my children on Monday morning (Eve's 9th Birthday) to drive over 100 miles away to hospital when I dont know how long it will be before I see them again.
Every time I leave them I see their hearts and mine break a little more.
God give us strength because we cant do this alone.