Little Deaths

Sara I’m with you in heart. Fully. I’m so glad you let the anger and sadness exist. It’s so very necessary. The little deaths are so so hard. Sending you love not because it gets easier but because you deserve ease to hold it all. 💗

I appreciate your words immensely and know you understand. Receiving your love and I’m sending love your way as well.

Zubin hasn’t been able to hug me in a long while and it may be one of the most heartbreaking parts that others don’t think of. That part really resonated with me. My heart is with you deeply.

That is the one that cuts deepest. My heart is with you as well.

This was heartbreaking and beautifully written. I’m sorry you and your son are going through this.

Thank you. I appreciate you.

I'm so glad you were able to write this. So beautiful and heartfelt, but so hard. Thank you for sharing and for your courage. Grieving this newest setback with you. I love how you are processing all the emotions honestly and courageously.

Thank you, Serena. It’s one of the hardest parts of advocating - sharing your emotional underbelly. I’m so grateful for the caregiving community here. I feel understood before I even hit “post.”

love that! I thought of your essay a lot throughout the day yesterday and prayed for you and your family.

Incredibly difficult. I will be following you. I hope the writing here helps you as much as it has helped me.

Thank you so much. Writing has always been my emotional regulator.

Beautiful post. And so true about grief and hope not taking turns, but showing up together - often impatiently stepping on each other's toes!

Prayers for you and TJ. Praying that this little death holds off a little longer ❤️

Thanks so much, Brittany!

❤️‍🩹 You are such a wonderful person and mama. Big hugs to you, TJ, and the family. So wish I could have given you one in person last week! 😘😘🙏🏻

Big hugs to you too. I so wish we could have made an in person hug work out. Next time! Love ya.

Yep, next time! Love ya too!

Thank you so much for writing this Sara. I’ve never come across anyone walking the journey through Duchenne before, and so appreciate the time it’s taken you to put your experience into words. It sounds heart breaking. I’m so moved by what you said about not reaching for hope right away and letting yourself feel it. This is still something I am trying to practice - definitely as a novice - and it helps to read you articulate it so beautifully. X x

Thank you for your kind words. It’s so hard not to try and find that silver lining right away. I think it’s harder sometimes to honestly feel the difficult emotions. Sending you love on your journey.

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