15 Comments

I don't know how you do it. And by that I mean, how you can write so honestly and frankly, bravely.

You make your daily routine real, harrowing, and somehow 'normal' all at the same time. And to hear about Em. and her school experience makes my heart sing.

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Thank you, Jude! ❤️

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This part: “What I really want to hear is, “That really fucking sucks, man. I’m so sorry you’re having to deal with this shit.” Thank you, you’re right, it does suck.” Yes, I get this. And my kids are older 21 and 18. We are going through transition right now. It is hard, but there is some good learning. My husband and I have been in this together. We are strong, but it’s been hard. Sometimes people say, “I don’t know how you do it.” My response is my head is I don’t know either but you do it. It’s the job.

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Thank you for sharing, Zina! I've lost track of how many times I've heard the phrase "I don't know how you do it." I always think, "It's not like we have a choice."

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you're doing what needs to be done and you're doing it with such openness and willingness. thank you for sharing yourself and your family with me in this way.

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I can't imagine what a day in your shoes is like. Thank you for sharing this incredibly vivid and honest on the fluidity of "normalcy." Glad to see in the 2024 update! :)

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Thank you, Will! I like that phrase: "the fluidity of normalcy"

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Mar 15Liked by Lyle McKeany

Really sorry that you guys, especially yr daughter is having to endure such tough challenges. But it just shows how resilient and dedicated you guys are as parents. It’s quite inspiring. Hopefully things get more managaeble for yr daughter.

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Thank you, Raveen! We have a great team around her, including family, school, nursing help, and her specialists and therapists. It takes a village!

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Mar 20Liked by Lyle McKeany

Loved the piece and the update already made my day!

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Thank you, Chandler!

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Mar 31Liked by Lyle McKeany

This piece really hit home for me. I have a severely disabled adult son and question what would a normal day be like? Thank you for sharing and that it’s ok to feel like that. Kelley

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Thank you, Kelley. You have every right to feel however you feel. We've both been dealt a tough hand and we're doing the best we can with it

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Mar 23Liked by Lyle McKeany

I’m a contrarian at heart so two atypical notes: 1. To add to your last sentence: I’m blown away by YOUR resilience. Em only knows the life she was born into. Unlike you, this hard life is her normal. And she’s got the absolute best care around her because her parents love her unconditionally and will always go the extra mile despite how awful it can be sometimes. I love that for her. 2. I can’t bring myself to say “I don’t know how you do it” because that would mean I don’t see how devoted you are as a father. No words from friends or strangers can alleviate the horror, the pressure, and the labor of the facts here. Yeah it fucking sucks that you were dealt these cards. Any kind soul wishes we could change this path for you and your family. All we can do is bear witness. Listen. Allow space for you to tell us about your darkest days without judgement, without drowning you “at leasts” or “you shoulds”. And just hope that, by getting this off your chest, you feel seen and heard, acknowledged and understood. It doesn’t change anything. No “but at least...” It still sucks. Full stop.

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I very much appreciate this comment. Thank you so much ❤️

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