Often people contact me from all over the World sending Daisy and our family words of positive support. Theses words general reach us when I'm at breaking point or when Daisy has had a Low/Slump in her Health.
On days everything is going great, smoothly, then, before you get a chance to realise its all going so good .... a change of path kicks in.
This, For over 2 years has become our Families most common barely functional routine -
Few weeks up ~ few weeks down ~ Who knows ??
Eye infections, Apnoea attacks, febrile convulsions, chicken pox, septicaemia, infections of the blood, random skin infections , medications, MRIs, CAT scans, Specialists, specialist hospitals, we just never know and are never prepared for tomorrow.
This is where my sense of spontaneity's , lack of forward planning, great UNorganisation, and ability to go days without personal care or knowledge of where I'm sleeping, eating even going too next comes in!
Its a real bonus being able to carry my life in a small bag filled with Daisy's paper work, telephone numbers and continue to function in a normal is normal gets manner. Its MOTHER F****** auto pilot.
As I grew up, I always envied Mum more and more with the way she regularly juggled life so well.
OMG! WTF! LMFAO! Fucking
Get the MAP out ~ MOTHER^AUTO PILOT !
I'm on the MAP, PAM (My mums name is Pamela)
Note to oneself-
Never visit my mum for sympathy you'd get 'Oh well' or just 'ooo' - There is was No long conclusions, evaluations or time to dwell, contemplate. No ifs or butts... Just KEEP CALM AND CARRY ON attitude.. That is one of the greatest attributes my Mother has given me. Its got me this far
Searching the Internet and I am slowly contacting chatting to other Families, Individuals and knowledgeable professionals alike, that have links or an interest with AOS (Adams Oliver Syndrome). Its not nice to know that others have gone, or are going though all the worry and the extreme emotion that my family have and are experiencing. My only hope is as we find each other we can share blood,sweat and tears. Be there when times are tough and advise, cross-reference on the little information that we get from our Medical Professions involved.
Please add any comments (on the comment form) you like and it will post below.
Links of any information you feel others may benefit with, are always wanted again greatly received.
No comments:
Post a Comment