WHEN WILL WE BE THERE?

You know the phrase.. all children say it... usually just a few minutes after you have left home ..... with hours of travel ahead!!

So , what do you do? Well there's always I-Spy, alphabet games, books, songs, ( Heaven only knows how many times I've sung The Wheels On The Bus!!!!! ), snacks (including Haribo or Smarties!) .

And then (You as a parent) pray to arrive!!!

And , eventually, you do arrive. You (the parent) are shattered, but the youngsters energised and happy. ........




MND is sort of similar... You are on a journey. There are differences..... You aren't praying to arrive...... because that's the end.

But the journey is tedious. Its hard to face each day with a sense of adventure and wonderment. Many days show there are changes in your ability to move.

You need more equipment, more support. (For me my legs are now hopeless,but more frightening, signs of the swallow muscles not performing as they should...........)

With this comes levels of indignity, cost and great sadness.

But you cant give up the journey, you cant give up the effort or you're lost, it's over. 
Its hard to keep on this route. So, So hard. You simply don't know what bend, bump or jolt will be next.

In some ways I wish I knew the map, knew what to expect. Would it make it easier... or would it be so scary that you would just crash the car ??

I think it probably would be too scary to know minute detail.


HUG ME, I'VE GOT MND