The Rare Life
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Curated by a fellow special needs mom in the trenches, The Rare Life features Madeline's own experiences and takeaways as she parents her son Kimball who was born with several major birth defects due to his extremely rare genetic disorder, as well as conversations with other parents who share their own advice and stories of loving a child with medical complexities.
The Rare Life
6d ago
Have you ever been in a conversation with someone close to you only to be cut to your core by their offhand commentary about your disabled child, their medical issues, or the life you and your child have? Friend, you are not alone.
In Ep 153 of The Rare Life, Amanda Griffith-Atkins, whose sone has Prader-Willis syndrome, joins us to address some of the hurtful comments we've received from those close to us. She gives us some helpful tips for navigating those uncomfortable interactions, mending certain relationships, and how to know when a relationship might not be worth repairing.
Because whil ..read more
The Rare Life
2w ago
Finding out your baby had a life-altering stroke in utero brings shock, heartache, and a whole lot of guilt. But when the medical trauma keeps coming after that initial diagnosis, year after year, hospital visit after hospital visit, there’s rarely time to work through all of those complicated feelings.
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In Ep 152 of The Rare Life, Stephanie Stanley shares her story of navigating guilt, fear, and her new normal after discovering that her son Payton had a stroke in utero. Stephanie speaks to the journey so many of us have been on and are still on, as we attempt to process the medical t ..read more
The Rare Life
3w ago
We all need friends... but not just any friends. We need friends who just get it and don’t need us to explain every little aspect of our life to understand. In short, we need friends who are also parents to disabled and medically complex children. But how do we find and make those friends?
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In Ep 151 of The Rare Life, I sit down with Kari Harbath and Kate Livingstone to discuss how to create REAL, connective friendships with other parents of disabled kids. We chat about how to go about creating these fulfilling friendships, how to take your current friendships to the next level, AND h ..read more
The Rare Life
3w ago
We talk all the time about our disabled children in this space... But what about their non-disabled siblings?
In today's episode of The Rare Life, we're going to hear from them directly: about the good, the hard, the unexpected, and about just how much they love their disabled brothers and sisters. We heard from nearly thirty siblings, from toddlers to teens (and even a few adults!)
Megan Schneider, a grown-up with a disabled sibling, also joins me to share her own experience and respond to these tender thoughts from some of the other kiddos in our lives.
This episode is so raw, so heart-wrenc ..read more
The Rare Life
1M ago
Only two days left in the Family and Friends fundraiser, and while we’re overjoyed and awed at how successful this fundraiser has been, we’re still 10% away from our goal!
If you haven’t joined in on this fundraiser yet, it’s not too late. You’d be amazed at what you can accomplish in 48 hours, so will you join us for this final sprint to the finish?
Get more info at https://therarelife.org/fundraiser.
Thank you so much, friends!
Links:
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Follow us on Instagram ..read more
The Rare Life
1M ago
Imagine spending years trying to get pregnant, following every protocol, and struggling through the heartache of not being able to build your family. Then, finally, after all the difficulty, you get to have two beautiful twin girls, and you think maybe, “This is it! The struggle is over!” But, because life isn’t always fair, you find out soon after that one of your twins has a life-altering rare disease.
This is the story of today’s guest, Dr. Annie Kuo. She shares her journey from infertility through the diagnosis of her 15-month-old daughter, Kenzie, with Prader-Willi syndrome. She shares ho ..read more
The Rare Life
1M ago
Less than a week into our Family and Friends fundraiser, and we have some super exciting news to share!
If you haven’t joined in on this fundraiser yet, we’ve got a list of ways you can get involved, plus some helpful tips to make it all a little easier!
Get more info at https://therarelife.org/fundraiser.
Thank you so much, friends!
Links:
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our conta ..read more
The Rare Life
1M ago
Our kids touch the lives of everyone around us, but especially our close family and friends. But we don’t always get to hear that perspective from the outside.
So on this episode of The Rare Life, we’ll finally get to hear from those close to us about what it was like to watch us endure trauma, explore parenthood with a medically complex child, and try to figure out the best ways to support us. Kassie Harbath, auntie of Sloan, a little girl with CHARGE syndrome, joins us to sort through all these complex feelings.
And, this episode is so well-timed, because we’re also starting our Family + Fr ..read more
The Rare Life
1M ago
If you feel like you’re missing out on sexual intimacy in your life since entering your medically complex or disability parenting journey, you are not alone! We took a poll on Instagram and 90% of respondents said that their sex life had been impacted by medically complex life.
The reasons for this impact are endless: no time, no energy, no space, no emotional bandwidth, and the list goes on. So in this episode, we’re diving into specific thoughts and struggles from this incredible Rare Life community on the state of sexual intimacy in their lives.
Amanda Griffith-Atkins is once again he ..read more
The Rare Life
2M ago
When it comes to parenting children with rare disease, there’s often a lot of focus on the moms and their experiences around birth, the diagnostic process, and the work of giving care. One group we hear a lot less from? The dads.
So in today’s episode, we’re digging in to the Dad side of things. Joined by Derek, whose daughter has intractable epilepsy, Juston whose son has CDPX1, and Zach who daughter also has a rare genetic disorder, these dads share what it was like rebuilding their family structure with rare disease factored in. They share their feelings around responsibility, helplessness ..read more