Balancing Motherhood, Community, Trust, Money, & Sickle Cell

Personal growth living with a chronic illness, sickle cell, the importance of open communication, building a supportive community, & advocating for oneself.

About the Show
Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this.

We respect Listeners, Watchers, and Readers. Show Notes at the end.
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Contents

Table of Contents
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About the ShowWatch on YouTubeRead NewsletterContentsEpisodeProemPodcast introFour more years, a motherYou mean I won’t get sickle cell?No lying in motherhoodHarder on myselfTreat us differentlyWhere do they fit in the world? Call to actionMoving on and building communityMuslim communityHealthcare CommunityTrust my teamEgo-centered, patient-centeredSpeaking truth to powerMakeup for the Emergency RoomIntentional whyYou can’t read my mind?I’m not your caregiver. I’m your partner.End-of-life. It’s for real.Live below your means, cut out the noiseReflectionPodcast OutroPlease comment and ask questionsProduction TeamCreditsInspired by and Grateful toLinks and referencesDisclaimerRelated podcastsCreative Commons Licensing

Episode
Proem
I’m delighted to reconnect virtually with my dear friend, Fatima. We last recorded several conversations, two with her mother, Esosa, in 2019 as part of the series on people with complex conditions transitioning from pediatric to adult medical care. The titles included Living a Happy Full Life, Good Listeners, Good Conclusions, and I’m Not Drug-Seeking. I’m in Pain.  Becoming friends with Fatima has been one of the delights of my last decade. I especially value sharing our diverse experiences, finding many common cords (chords), leading to ongoing separate growth and development. From Fatima, I’ve dared to proudly introduce myself as a 2-legged cisgender old white man of privilege.
Podcast intro
Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.
Four more years, a mother
When we had the conversations in 2019, you were a mom, but it wasn't about you being a mom. Now, you've been a mom for four more years, dealing with sickle cell and being part of the family unit. Your mom said it's not just the person with the diagnosis; the whole family must manage. What are your thoughts about that now? You and your kids are getting older. Your son's graduating from preschool. I can't believe it. Anyway, what are your thoughts about that?

Fatima Muhammed-Ighile: She states that sickle cell is a family issue. These last few years, I've understood that more profoundly. My kids are now five and six. They ask questions, and there are times when they can now comprehend how my restrictions, based on when I feel sickle cell pain, affect their lives. So that's required me to have discussions with them that, at times, I wish I could have delayed.

Health Hats: If I remember correctly, your daughter probably has the most challenging questions.
You mean I won’t get sickle cell?
Image from https://www.kold.com/2021/01/28/federal-committee-recommends-more-research-care-patients-with-sickle-cell/

Fatima Muhammed-Ighile: It was a lazy Sunday afternoon,