kartoffel.substack.com Just writing what comes to mind. Mostly about life as a parent to a child with a rare medical condition.https://bsky.app/profile/ourlittlekartoffel.bsky.socialhttps://bsky.app/profile/ourlittlekartoffel.bsky.social/post/3lx5zgcpews2rAt the center of every waiting room is the way families learn to carry the weight of uncertainty: through waiting, through silence, through rituals of protection, and through the fragile shift from wanting to delay the future to stepping into it. https://open.substack.com/pub/kartoffel/p/pachyversary?r=1zs17k24 Aug 2025 17:34 +0000at://did:plc:mz5tv62sbegvxee4edz2uhhu/app.bsky.feed.post/3lx5zgcpews2rhttps://bsky.app/profile/ourlittlekartoffel.bsky.social/post/3lw3a5pylf223To say “this hurts” feels dangerously close to saying “I wish my child were different.” https://open.substack.com/pub/kartoffel/p/the-birth-of-a-tragedy?r=1zs17k10 Aug 2025 21:31 +0000at://did:plc:mz5tv62sbegvxee4edz2uhhu/app.bsky.feed.post/3lw3a5pylf223https://bsky.app/profile/ourlittlekartoffel.bsky.social/post/3luxditxmtk2mLove is not a spontaneous gift, it doesn’t just happen and it's not something you just can’t help but feel. It is intentional. It does not lift us out of our messy imperfect everyday life. It digs us further in. Roots us. And sometimes, it covers us in beets. https://open.substack.com/pub/kartoffel/p/the-potato-and-the-beet?r=1zs17k27 Jul 2025 14:55 +0000at://did:plc:mz5tv62sbegvxee4edz2uhhu/app.bsky.feed.post/3luxditxmtk2mhttps://bsky.app/profile/ourlittlekartoffel.bsky.social/post/3ltuvbalib22cA Different Planet On Epistemic Isolation in the Bureaucracy of Care http://ourlittlekartoffel.com/2025/07/13/a-different-planet/13 Jul 2025 22:10 +0000at://did:plc:mz5tv62sbegvxee4edz2uhhu/app.bsky.feed.post/3ltuvbalib22chttps://bsky.app/profile/ourlittlekartoffel.bsky.social/post/3ltu6n66tsk2vCaregivers live with a specific kind of #fatigue: Not just #tiredness But epistemic #exhaustion From explaining. Correcting. Proving. Again and again. This fatigue is not laziness—it’s erosion. https://open.substack.com/pub/kartoffel/p/a-different-planet?r=1zs17k13 Jul 2025 15:25 +0000at://did:plc:mz5tv62sbegvxee4edz2uhhu/app.bsky.feed.post/3ltu6n66tsk2vhttps://bsky.app/profile/ourlittlekartoffel.bsky.social/post/3lsywbulrvs25EMR Fingerprint #epilepsy #research #rare #geneticdisorder https://open.substack.com/pub/budhager/p/emr-fingerprint?r=1zs17k02 Jul 2025 19:13 +0000at://did:plc:mz5tv62sbegvxee4edz2uhhu/app.bsky.feed.post/3lsywbulrvs25https://bsky.app/profile/ourlittlekartoffel.bsky.social/post/3lsrvm2fx672qThe Notebook Navigating the gap between medical charts and the unmeasurable magic of a life http://ourlittlekartoffel.com/2025/06/29/the-notebook/30 Jun 2025 00:12 +0000at://did:plc:mz5tv62sbegvxee4edz2uhhu/app.bsky.feed.post/3lsrvm2fx672qhttps://bsky.app/profile/ourlittlekartoffel.bsky.social/post/3lsr3c2w4ds2pNaming isn’t knowing. #disabilityparenting #fatherhood #thenotebook https://open.substack.com/pub/kartoffel/p/the-notebook?r=1zs17k29 Jun 2025 16:22 +0000at://did:plc:mz5tv62sbegvxee4edz2uhhu/app.bsky.feed.post/3lsr3c2w4ds2phttps://bsky.app/profile/ourlittlekartoffel.bsky.social/post/3lro5fuyrbc2sCome walk with us? #fatherhood #disabilityparenting https://open.substack.com/pub/kartoffel/p/lets-walk-for-a-while?r=1zs17k15 Jun 2025 18:56 +0000at://did:plc:mz5tv62sbegvxee4edz2uhhu/app.bsky.feed.post/3lro5fuyrbc2shttps://bsky.app/profile/ourlittlekartoffel.bsky.social/post/3lqknte6erc2ohttps://open.substack.com/pub/kartoffel/p/coming-soon-our-little-kartoffel?r=1zs17k01 Jun 2025 16:14 +0000at://did:plc:mz5tv62sbegvxee4edz2uhhu/app.bsky.feed.post/3lqknte6erc2ohttps://bsky.app/profile/ourlittlekartoffel.bsky.social/post/3lpu6kzxvg22kIf you absolutely must have some gauge for whether or not someone is worthy of your consideration or at the very least worthy of legislative protection, you need only ask one question, not ‘Can they reason?’ or ‘Can they give back?’ but simply: Can they suffer? https://open.substack.com/pub/kellycervantes/p/the-mirror-of-worth?r=1zs17k&utm_medium=ios23 May 2025 17:43 +0000at://did:plc:mz5tv62sbegvxee4edz2uhhu/app.bsky.feed.post/3lpu6kzxvg22khttps://bsky.app/profile/ourlittlekartoffel.bsky.social/post/3lkqkmkpbdh2jLife twists in such ordinary moments, doesn’t it? A single breath—a glance—upends everything. My new blog explores the shattering experience of a child's diagnosis and the fractured reality that follows. @courageousparentsnetwork.org #chronicillness #parenting #grief https://courageousparentsnetwork.org/blog/the-ordinary-instant-and-the-shattering-of-time?fbclid=PAZXh0bgNhZW0CMTEAAaYDern8GSJpsEtFkkaupRYe7OJZkxDay3GTucFBWqLJrDokY8U-L7Co440_aem_78iNY74ijZ2GoBYIbMv7_Q19 Mar 2025 16:02 +0000at://did:plc:mz5tv62sbegvxee4edz2uhhu/app.bsky.feed.post/3lkqkmkpbdh2j