Deep Breaths.

I don't know if it's just sinking in more, or if it's hormones, or just the roller coaster that I'm forever going to be riding, but this has been a very tough emotional week for me.

The older Lillian gets and the more she's becoming her own person, I can't help but just feel so sad that she is living a life that is going to be so hard for her. I look at her and just love her so much. I want so badly for everything to be the way we expected it to in the beginning. I want her to have everything that her peers will have. I want her to be active in school and have friends and boyfriends and get married. I want her to travel and be adventurous and go to college. The reality of her life is so different from what we want for her.

I struggle with figuring out how she brings me so much joy, when the thought of her life makes me so sad. I can't even put into words the love I have for her, and the joy she brings when she smiles or discovers something new, or even just when she sighs after a big yawn and rubs her eyes. I was doing so well not stressing about the future, but it's so hard to not think about when I'm faced with all the doctor appointments and therapy sessions and even though I know it's not a lost cause, sometimes it feels that way.


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