It is so different!

Having children who have life threatening issues to having a child who has a degenrative disease that is visibly progressing.

We have lived with Jonathan's periodic episodes of ill health, sat by his bedside when he has ben so ill we are not sure if he is going to make it.
We have lived through even more of those episodes with Rosie, and with Rosie we always have it at the back of our mind she may not wake up one morning.

But with Both Rosie and Jonathan when well they have developped and progressed and achieved and been happy and well and had periods of lots of activity.

Yes when I look back they have both changed significantly, and since epilepsy took hold Rosie has lost a lot of skills...cognitive mostly, Jonathan is less physically able than he was...but on the whole they both have very good periods.

Eve is different. We had ignored it for a long while, kept hoping she would get over it, put it down to periods of ill health, BUT it is now so obvious. She is losing skills, is less well, is less active and is weaker.
I dont know how to accept this. Eve is still so smiley...that is a positive. She draws people to her, she has adoring fans wherever she goes.
She is adorable, she is loving and funny and loves a joke.

But she is slipping and I want to hold on!
There is so much we need to do to protect what she has...we are trying to sort her seating..her wheelchair does not support her but her indoor chair does not allow her to breathe
Her standing frame would protect her hips and her bones but she cant stand safely in it.
Eve loves to people watch, she talks with her eyes...sadly they are getting more and more fixed and she can no longer follow things so easily. Her lids are droopy and she cannot always open her eyes wide enough to see.
Thankfully her hearing seems unaffected as yet and she listens well.
I dont want this post to turn into a woe is me post.
I just wanted to express that this is different....I had not realised how different it was to have a progressive disease to a purely life threatening one!
We need to get our heads around this and learn again to enjoy her life....not mourn what she has lost....or fear the future....just live today and enjoy what we have where we are and who we are with!

I do not know what the future holds.....
I must stop trying to think I do!
I am glad I know who holds the future......
The same one who knew us before we were formed in our mothers Womb who took a little child into his midst and who blessed the children despite his weariness.

God loves her more than I ever could and only wants His best for His children.
This life is not all there is and the suffering of this world is not to be compared with the glory that is to come.

Fearfully and wonderfully made
Hugs