Sharing Rare Disease Stories Is An Act Of Hope, For All of Us.
“Taking a break from this podcast”
Effie is so gifted in this role and some episodes are absolute gold, but I have had to step back from this podcast as a major theme has become “race for a cure” parents who view their children from a medical deficit standpoint. This view is harmful and I hate how it makes me feel about my own child. I am disappointed every time this view goes unchallenged (and is even praised) in this podcast, which is unfortunately often. I would love to see more episodes featuring people working to make safe spaces for disabled people, rather than so many narratives from people whose main goal is to get our kids to change, to become less disabled and fit more easily into our ableist society.”
I wasn’t going to respond to this. But not responding goes against something I believe in—not shaming people, and that applies especially to parents who are like us,
and those…
who have so much on their plates, and their hearts,
who contribute to society in ways most people will never come close to,
who care about leaving this place better than they found it,
who love deeply, and
who sacrifice everything for others.
I am pretty sure I know you, and I’m quite certain I know what an amazing parent you are to your children. I respect you, and your opinions. I respect the way you have chosen to respond since your child was born. I can see that at some point this podcast made a positive impact on you. That’s exactly what it is for. I hope it touches anyone and everyone, and meets someone right where they are, when they most need it. Take what you need and leave what isn’t resonating right now. We are all doing the best we can and that should be celebrated and yes, even “praised.”
This podcast has never had one niche to fill. Because this world is diverse—just like our kids, parenting experience, access, kids’ symptoms, and opportunities. There are several podcasts that offer constant validation, and that stay in their lane. I choose to drive all around because that is how my life is. That is how my emotional journey has been. That is how rare disease is.
Again—take some and leave some. No one is judging. No one is a better advocate than anyone else. No one is a more important advocate. No one is right and no one is wrong. Everyone gets to choose. As long as they aren’t jerks or hurting others, I will continue to listen, share, and especially, praise.
I wish you had emailed me this feedback, and perhaps even offered to share your perspective on the show. (Maybe even a positive review when you found value in it 😉.)
I do this for free.
I do this for others.
I do this because it is vital, in my opinion.
I serve my local community while also casting an audio net across the entire globe. I am so proud of it, humbled by it, and incredibly fulfilled doing it. This is just one way I choose to advocate.
I created this space for others to learn from each other, find companionship, inspire others to act, offer support, and for about fifty other reasons. This is a positive place. This is an inclusive space.
I thought about this review for a few days. I “woke” up to it earlier this week while I was away from my husband and daughter spending the night in the hospital with my son, Ford. He was undergoing a sleep study to assess his sleep apnea and evening seizure activity. All appointments for him are difficult. He has severe sensory issues, and medical anxiety generally. Of course, why wouldn’t he? He’s been a part of the medical world since the day he was born. He regularly undergoes painful Botox injections all up and down his legs and feet. He suffers from chronic lung disease, asthma, gi issues, vision impairment, maybe migraines. We can’t be sure because Ford can’t tell us. But I know when he’s in pain. I see when the drugs wear off, and when I’m a little late administering a medication. I can tell when he hasn’t done enough physical therapy. He gets weaker and tighter, sleeps less, and has more soreness after activities. I think about his dystonia and how painful it must be. I consider how it’s worsening as he gains weight—and we slave for him to gain every pound. Ford has never absorbed nutrition the way a healthy child does. He has vomited chronically since birth, and this has most likely permanently damaged his esophagus and teeth…his teeth, by the way…he has microdontia due to his microcephaly and we recently found out he is missing most of his adult teeth. This is only a scrap of what Ford and my family really deal with today. Looking to the future is like seeing the 90% of the iceberg below the surface.
I do not contribute “harm” by sharing stories of people who are trying to find drugs to help their kids sleep at night.
I do not contribute “harm” by offering stories of families who hope to stop their beautiful child from having debilitating seizures.
I do not contribute “harm” by listening when a father tells me he dreams of one day seeing his child walk, or say, “I love you.”
“Parents who view their child from a medical deficit standpoint,” is an oversimplification, in my view.
I have always found that the power of listening is that we can absorb the views of others without having to abandon our own. I want this podcast to enable people to benefit from community and sometimes this means encountering opinions that aren’t expressed in a way that sounds aligned for us.
Our children are sick. And more than half of them are dying sooner than later. THAT is the deficit. The research is the deficit. The lack of treatments is the deficit. The lack of support is the deficit. The lack of time is the deficit.
I love my little disabled dude. I think you know that. Aside from the ten hours a day I advocate at events, online, and on podcasts, I also contribute in my local community to “make safe places” for disabled people. Check out Mercerdale Park if you haven’t yet. It is an example of beautiful and meaningful change. Change in my wonderful community who helped to build it, and that happened because people listened. They learned. Making a safe place for my child and others like him is literally all I do.
Am I trying to change my son to fit into an ableist society? Not even close. Although I sure would like my family to “fit in” sometimes so this wasn’t so damned hard. I am not ashamed of anything that I feel since becoming a parent to my son. I get to have feelings, and those neither limit nor define my character and integrity. I get to learn and grow. I get to be stubborn and jealous.
Do I pay for physical therapy, so he hopefully has less bone deterioration? To slow his scoliosis? To help his gi system move? To help promote cardiovascular health as he will be in a wheelchair his entire life? Yes. Hell, yes. I wish I could do more. But it’s expensive. I do as much as I can manage while finding a balance—so he can be a kid, and I can be a mom.
My life is dedicated to making his better. And that includes helping to understand the disease he suffers from, raising money for treatments so his severe leg pain will lessen, ensuring he has what he needs for a restful night’s sleep without seizure activity and banging his head against the wall for hours. All of those parents are doing this too, while they “chase a cure.”
By the way—we only use the word “cure” for the rest of the world. In the rare world, I find that each of us has a personal version of what cure means, and how and when we use the word. For some, it means their child has fewer self-harm days, that they gain the independence to use the toilet, or need 15 hours of direct care rather than 24 hours per day.
I empathize with you feeling that I convene a place for others that make folks that feel the way you do about your child, feel bad about it. I respect your point of view. I welcome your point of view. Please don’t judge the character of others who chose a path that appears different from yours. All coping strategies are valid, and they make sense for the person choosing them. For me, when there is something in my way, for some amount of time it’s difficult to see more than my own opinion, but I can’t let myself stop getting unstuck. I wish for empowerment and praise for others when I have no doubt they are doing good in the world. I will not “challenge” them on their path toward contribution.
I am easy to talk to—but I am also my father’s daughter. Your feedback inspired me to defend those I feel you wrongfully and publicly judged.
I do hope you come back to the podcast someday, as I share a pretty diverse amount of content. But if you don’t, I am glad it was a small positive part of your journey.
xoxo,
Effie Parks
Cover Photo: Kristin Elliot, Dandelions & Dirt
Content Photo: Mercer Island city officials take part in the ribbon-cutting ceremony for the newly renovated Mercerdale Park playground on July 9. Photo courtesy of Terry Lee