"The more I opened my heart to the folks in my circles, the more convinced I became that life is equal parts brutal and beautiful. And/Both. Life is brutiful."
-Glennon Doyle, Carry On Warrior
I have been documenting this sweet girl since she was just a baby at UCSF...like my little Riley she was born with SCID and like my Riley her road has now seen a few more bumps than our Mama hearts wished for. I didn't know that she was back inpatient, I had visions of her home and inching her way into normal life. Last week I went to UCSF for a SCID support group and when her Mom walked in my heart lept and sank in unison. I was thrilled to see her and then gutted as to why she stood in front of me. Those meetings are so good for our souls (thank you Heather Smith for their existence)...they give us the space to vent and grieve and laugh and look at each other while viciously nodding "same, girl, SAME"
After the meeting I went to visit little Eleanor, to capture the continuance of a journey I thought was done. As we played on the floor I thought back to all the sessions I'd had with these two in the past and the quote above flooded me...this is brutiful. She is beautiful. SO SO beautiful and this life...the ups and downs of parenting a patient is brutal. Brutiful.
**I wrote this last week and it was scheduled to post today. I got a message from her Mom this morning and the struggle to find beauty in her update is real. Today they are in the thick of the brutal. Today they are dealing with the results you don’t want and the pain and procedures that follow to find a fix. The steps forward are a slog when you’ve learned that despite all attempts the results show you’re moving backwards. Today she is in pain. Today she is in surgery. Today is not equal parts…today is brutal. To those in my circle...this is me asking for help in sending beauty this families way however you feel called…all the positive vibes, all the comments, all the prayers, all the love, all. the. things. **