Why i love our "weekend normal" #define normal

Why do i love our "weekend normal"?

This post is part of #define normal blogging challenge a blog hop set up by http://www.justbringthechocolate.com/define-normal/


Anyway, to understand why i love our "weekend normal" you need to understand weekly normal which goes something like this

Monday- physio group AM, lovely leanne from rainbow trust helps PM ( i do shopping)
Tuesday- CCN nurses sats check and weigh Nate AM Visual impairment sensory group PM
Wednesday- portage or home visit from visual impairment specialist AM ( alternate weeks)
Thursday- Development group or hydrotherapy AM, Physio lunch time, Sats check PM
Friday- HCA helps me AM, 

In addition we fit child development, paediatrician, neurologist, respiratory, feeding, opthamology, OT and hearing regular appointments. Then there is the ordering and pick up of prescriptions, oxygen delivery, feeding equipment delivery and incessant phone calls to make and recieve.

BUSY is not the word.

So weekend normal? "What is that" i hear you ask. Well, it is basically NONE OF THE ABOVE.
Weekend normal begins with Nate shouting at us to get him up and get his mask off.

The shouting is mainly "rah raaah rah!" "maaaaaaaaaaaaaaam" roughly translated as " get me up you pack of utter bleeps". So nasal canula on, mask off, humidifier off, oxygen concentrator off, ventillator off. Nate in bed. Then thea attacks us and we all have lovely snuggles.

This is the most important part of the weekend. Time together without rushing about. Part of our life which would seem the most "normal" to outsiders looking in.
AND I LOVE IT