CHARGE Syndrome

Lessons learned from Sloan

Lessons I’ve learned from Sloan:

1) Don’t take anything for granted. Life is ((extremely)) fragile.

2) Meaningful, caring, real relationships are sacred and should be the main source of time and energy. Those who care show you through action and showing up – and it’s a beautiful thing. 

3) Genuine smiles have meaning—and “insta-perfect” (drool-free) pictures usually don’t capture the most cherished moments in life. Even if I do love my Canon camera and Lightroom. ?

4) Don’t ever let someone define your life, abilities, or worth. Quality of life means so much more than what we think, and quality of life is defined through love, courage, and empathy for others.

5) I(really)DGAF and it feels good. Truly. Not in an “IDGAF so I just speak my mind and have permission to be a jerk” way, because that’s not cute. More like an “IDGAF and just want to live a content, kind, loving, inclusive life – so let’s be friends” way.

While every day is a new adventure and challenge – and it’s not the “picture perfect” idea of parenthood I expected – it’s very real. I couldn’t imagine life with any other child now. The circumstances outside of Sloan as a person are extremely hard – medical diagnosis and uncertainties, hospital living, daily/nightly medical care, etc – and we work through + grieve over those things daily. However – strip that away – and Sloan as a person is such a life-changing badass. She’s given me, and all around her, a new appreciation and lease on life. So…Thank you for hitting the world like a meteorite and being such a wild child, Sloan.

Get that new new!

Sign up to receive emails with updates on all things Sloan + Kari’s writing on life and grief. (Bonus: there will be dark jokes.)