I am the parent of a child with a rare, genetic and progressive disease (RGPD) and the parent of a healthy child in the shadow of this RGPD.

Red with born with Branchio-Oto-Renal Sydrome. A disease boasting 3 main symtptions: 1) hearing loss or deafness; 2) Branchio-Cranial cysts and abnormalities and 4) Kidney Disease requiring transplant. Being the rare bird in her rare flock, Scarlett has normal hearing thus far and would be better classified as BR Syndrome in that she had 3 sets of ducts on her head and neck that were surgically corrected and stage 3 CKD.

I continue to struggle to find the experience of parenting in this world documented anywhere: journal articles, text books, blogs, online communities, or the media … and so I often feel isolated in my lived experience. Despite the 8000 or so documented rare diseases in the world, despite rare diseases impacting more people than HIV and cancer combined, I feel totally alone in parenting her.

This blog is an attempt to give voice to the phenomenology of parenting children with RGPDs and never to be forgotten, their stoic siblings.

This is a safe place to vent, a place to air perspectives and most importantly, to do the self reflective work involved with this type of rare parenting, the blind and scary world it has become.


13 thoughts on “About

    • Thanks Erin. It was a tough decision, to put it into words on a public forum but I feel it’s important to start the conversation, no matter how shaky my voice. Having a teacher read this means a lot to me.

    • Thank you so much Babette, comments like yours are comforting when I feel like I’m doing it all wrong! I really appreciate you taking the time to read and linger a while.

  1. This is really beautiful. I follow huffpost but missed this article. It really hits home for me and I connected very strongly with the themes touched upon. Thank you so much for thinking of me and sharing this.

  2. I’m so glad that you came by my blog. My oldest son has Duchenne Muscular Dystrophy. The doctors have told us that if he lives to see 25, he’ll be lucky. I can thoroughly relate to feeling so alone being a mother to him. My wasband made me bear the brunt of his care, and it hasn’t always been easy. In fact, many days I felt like screaming, because all of the programs out there designed to help families like mine, wouldn’t help us. They appear to be staffed by people who don’t give a crap about the people their organization is supposed to be helping.

    But I digress. I just wanted to let you know that I’ll be here, reading your words, and trying my best to cheer you on through this roller coaster ride of parenting a child who has special needs. My hat is off to you for being so open and allowing your readers to understand your challenges very intimately, because of how you write about them. Take care. 🙂

    • Thank you so much for reading and following along. I am gutted to hear about your son having DMD, parenting your way through the certainty of your child’s decline is only meant for a select few — he is lucky to have you for a mom. It means so much to hear that these posts connect with you on some level. I often struggle to find similar stories, a major reason I started this blog in the first place. I’ll follow along with your words and posts as well ❤

  3. It’s a double-edged sword, sometimes, knowing that your child is going to die, and you can’t do anything to stop it. In a way, knowing it’s coming gives me the chance to prepare myself. On the other hand, all the preparation in the world cannot lessen the grief once that moment occurs. Sometimes I get so frustrated watching him die before my eyes. I try to have hope that he will defy the odds. His will to live can’t really translate into fighting this, because there is no substitute for the dystrophin that he body does not produce.

    He is my hero. He’s been a straight A honor roll student since they started giving real grades. I can’t remember if that was third or fourth grade. He started taking college level engineering courses his junior year in high school. He wants to design airplanes. In his senior year, he did a school television interview, and told the entire school that he was dying. You remember how we were in high school, so imagine the courage he had to have, in order to tell his fellow students about his condition. He got straight A’s in Chemistry his junior year as well. I mean, who gets an A in Chemistry? I barely passed it with a D- when I was in school. He’s such a loving, compassionate, generous and brave young man. I’m going to miss him so much when he’s gone.

    Thankfully I’m with a man now, who I know I can count on to be my rock, who will help me be a rock to my other three boys, when they mourn for the loss of their brother. Without my husband, I wouldn’t be able to face that moment when I have to let my baby go. I feel honored that I’ve been given such a wonderful son, who always exceeds my expectations of him. I love my other sons so much, and they are learning such wonderful lessons about seeing past someone’s disability, to see the person that they are. I know that they will grow into men who help those who are less fortunate than they are, as a matter of habit, after so many years of taking care of their brother. I don’t know what I did to deserve four sons who make me so proud, but I wouldn’t trade any one of them, not for the whole world.

    • Reading your post brought tears to my eyes. I am in awe of parents like you. The weight of what you carry, is unlike anything I have ever experienced. I only stand on the periphery of this world and so, have incredible respect for the way you mother all your sons. What an inspiration your son is! Look at all he has already achieved! So much more than any of us at his age. It sounds like he is full of courage and curiosity, 2 of my favorite traits. We stand to learn a lot from the way he approaches life and living. Having support in a partner is crucial for survival — I mean that, actual emotional survival. How does a parent ever really prepare for the death of a child? ever? If you haven’t already, Emily Rapp’s work changed my life and my approach to parenting. Her words on grief and transitioning to end of life was so powerful. I continue to re-read sections of her work in my darkest days. You gave me the motivational boost I needed today to get on with it, and relish in the accomplishments of all our children — and ourselves! Thank you so much for sharing this deeply personal and inspiring snip-bit from your life with your sons and partner.

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