PLANS ... TO MAKE OR NOT TO MAKE ?

A real problem this. 

In some ways I have to plan for the future.... ie whilst I'm really at the top of my fitness to do it...

For example. I've planned to do an exhibition next October. The reason I did this was to be able to show the progress of my work as an artist with MND. That's it quite simply....

But planning for Christmas seems rather less important, I cant get my head around it. And yet for others I seem to think I should.

Christmas has always been a difficult time for me... well for the last 31 yrs, as my baby Eleanor Rose died then. My waters broke on Christmas day. I twinged for hours and eventually went into Mill Road hospital, Cambridge  on Boxing day. As with all my deliveries,  I needed a drip eventually  and baby Eleanor was born on on Dec 27th. Eleanor had spina bifida and hydrocephaly. Scans showed that she had such multiple damage that she would have no quality of life. Eleanor was sedated so that eventually she died. Thus  on Jan 6th she did die. 

So you may see how Christmas is difficult for me....

BUT... thus might be my last Christmas, or at least my last Christmas of eating a Christmas dinner with friends/family.

What if I'm asked what presents I might like... the ones I want probably aren't achievable... I would like to go to a sunny place, really I want to go to the island I lived on in the Bahamas,... or even Barcelona... I would like to go to New York.. I would like a car that works and gives me freedom to go out as and when I want.. I would like a massage everyday on my feet and neck, I would like someone to cook breakfast or dinner each day so at least I know I have one good protein meal, I would like to be able to go places without taking a toilet seat, ( disabled toilets aren't high enough to get off,), I would like to be spending time with my girls and for them to be understanding of my condition and thus valuing the time they can spend with me...... all ratherdifficult to achieve.....

So choices... do I let myself be sedated at the end... do I plan a Birthday party.. its all too difficult... I cant plan much.  Since Meggie died ,I'm just existing day to day with MND... Don't know how to respond to my life, but one day at a time is by far the easiest way.. the future is to bleak to plan for... AND YET I know I will fight this, I will continue for as long as I can communicate.. 


HUG ME, I'VE GOT MND