Tips or maybe just a pep talk for when you have a child with a progressive medical condition

[Anonymous]

It hurts to see my child losing skills she used to have. At the same time, I want to have expectations of her and I want her to keep moving forward. Does anyone have any "affirmations" for moms in this position?

[Anonymous]

OP I am sorry that you're going through this and that your DD is ssuffering. This is very sad.

Have you tried looking for support groups for yourself? and maybe your daughter as well? depending on her age, it may help.

[Anonymous]

I'm not in this situation, so what I'm about to say may be easier said than done. I think in your case you really need to be a great observer of your child (all parents need to be, of course) and know where your child is and what she can do now. Because 'before' was just that, before. Things will change, your child will change, and your expectations will need to change, too. It's just they are going backwards instead of forwards.

For her, so that there are expectations, perhaps you could bring it to things like being honest, being a good friend (all ages and all developmental levels/stages are capable of being friends, and in my imagination wouldn't go "backwards"but hey, I have no idea so school me if it's not true). being thoughtful, caring, loving..... that's what I would focus on, not whether she could feed herself before but not anymore, walk a long time and now not so much, etc. (or whatever the issues are)

And I'm sorry she and you are suffering. I can't imagine how hard this must be.

[Anonymous]

My heart goes out to you and your child. Wishing that the good thoughts I send your way would actually make a difference.

[Anonymous]

OP,

I have been staring at your post for the last half hour, desperately wishing I could find the right words to comfort you, but coming short.

Much love to you and your child.