If someone ask me if I could go back in time to give myself permission to do one thing when times were tough it would be, Dear Mama, I give you permission to grieve. I give you permission to feel how badly you were robbed of a life you once dreamed of and MAMA this doesn't mean you love your daughter any less. NOBODY gets pregnant wishing, "I hope my kid has a rare disease. I hope the circumstances help me grow into a better wife, mother, friend and human. I hope that I never get to sleep. I hope I get to spend hours advocating and organizing events to fight for her life." NOBODY gets pregnant wishing this for themselves and he surely don't wish for our kids to have a rare disease. The first thing that parents naturally say is "as long as they are healthy (more on this another day).
Last April I found myself sitting with my therapist uttering the words, "I think I'm depressed." She boldly said, "I don't think you're depressed, I think you are grieving." I went down the rabbit hole and bought every grief handbook I could get my hands on, I read for hours and I'm still reading so I can understand myself and my feelings deeper. I even joined a grief recovery program which was oddly liberating and the work I did actually had nothing to do with Olivia or cystinosis. I highly recommend working with someone if you are grieving and if you are reading this you are in some shape or form grieving something as we are all living through a global pandemic.
As I work on writing my book I was going through some of my notes and random thoughts and I just thought I would share a little blurb I wrote while back.
Permission to grieve
You have permission to be sad
To be mad
To have job
To be angry
To cry
To smile
To laugh
To have joy
But no more pretending my love. Just because she's alive and still here doesn't mean it can't and won't hurt.
If you don't allow yourself to be angry now you will forever hold onto that anger.
If you don't grieve, it will show up later in life. You can't run from your feelings. You aren't a Yeti so you can't push them down. You can't push through them, you have to feel them. Allow those feelings to teach you something. Your feelings are your most sacred teachers. The problem isn't feeling, problems happen when we can no longer feel. Your feelings are what helped you become the fierce advocate you are. Your feelings are what give you courage to fight for what is right. Keep feeling and keep fighting.
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