I’ve been feeling lost the last few months. The groups, tribes I belong to are changing and in doing so is my identity.

Who am I?

9 years ago I entered a group I wasn’t prepared for.

One that scared me.
One I didn’t want to enter.

I entered the world of Rett syndrome.

Yet being part of this world brought me fear an pain but it also blessed me with friendships and faith.

I was mom who found herself lost in an unknown world.

Yet by being lost I got found.

By being scared I found courage.

And In weakness I found my strength.

Together with my family we faced moments that took our breathe away with joy, but also moments that broke our heart with pain.

Yet as a member of this tribe I belonged.

Now I don’t !

It is said once a Rett mom always a Rett mom but is that true?

A community that I belonged whole hearted to, seems to be moving on without me.

Of course my friends are still my friends, but do I really walk alongside them anymore?

I just don’t know!

Can you stay part of a group if life changes.

I don’t know,

While my heart and soul prays desperately and faithfully for the cure of Rett syndrome, my heart aches that it’s to late for Livvy.

Is this evil of me?

I think it’s this that is tearing me up inside If I’m honest.

The barriers I’m forming may be built on the fact that I hate that I feel this way.

It’s not that I begrudge the cure gosh NO. I sincerely pray and hope to see all released from the torture of Rett syndrome and will continue to do all that I can to make this cure happen.

I’m just angry it’s too late for Livvy.

I’m cross that I’m not part of this group anymore.

I’m missing my baby and my life as her mother.

Where do I belong now?