66: Dusting Off the Mic

So I’m dusting off my microphone, refamiliarizing myself with this podcast world, gathering a list of guests to interview, and diving back into Walking with Freya. I’ve had a bit of a hiatus and I apologize to anyone who may have felt the loss of this, but I’m sure you all were fine. There are so many podcasts for the special needs community out there now, it really is a strong and growing community which is a beautiful thing. So a few reasons I took a break… 1. I bet that’s easy enough to guess – COVID. time, space, energy 2. Freya is getting older and I am beginning to question how much her privacy plays into this. This is not only my story to tell, and in some aspects, it is strictly her story. So I’m trying to find the balance there and know where the lines need to be drawn. 3. Guests – I was struggling to find guests to interview. I didn’t want to force it and it seemed, with everything else, it was a good time to take a break. Since then I have been invited to be a part of a podcasters group, two actually, but the one group I have met with a few times and they clued me in to a few places to find guests. And I am so excited they did because I have some great ones lined up! I’ve already done one interview that will come out next, it was with father and author, TJ Nelligan. He wrote a book about the legacy of his son Sean, called Live Like Sean. It was a lovely and inspiring conversation and I can’t wait to share it with you all. I think, ultimately, one of the biggest reasons I haven’t podcasted for several months, was that I wanted to have something important to say, something profound and hopeful about this pandemic and the time we are living through. I wanted to get through the election and the inauguration so I could finally take a deep breath (and don’t worry, that’s as political as I’ll get here). But we’ve all been at home, we’ve all been worried and grieving, some terrified, some sick and full of loss, and that’s not to say there haven’t been happy moments or laughs along the way but, this is a difficult unsettling time to be living through. It does seem like hope is on the horizon for something different than all of us staying at home, but we are a far cry from the kind of ‘normal’ life we were used to. But what is normal? And how can we, or I, claim to know what that is when so often our lives get rocked to the core with the birth or adoption of a child with special needs. Normal goes out the window. But words of wisdom, profound reflections on this time? I have none. I’ve written a ton of poems. Some that have actually been published –yay! I didn’t want to fill the airwaves with my rambling insecurities and doubts. But again, I do think hope is on the horizon and I at least have a nice long list of amazing people to come on and share their stories and knowledge on the podcast. And I’m always open to more so if you’d like to share your story send me an email at [email protected] I thought I would share a shortened version of my poem Adaptability. I can be a wordy poet, and I’m not sure that translates to a podcast so well. The longer version of this poem was published months ago in Drexel University’s Literary Journal “Paper Dragon”, under the title To Parents of Children with Special Needs In A Pandemic. So before I read, to all you listeners who have stuck around, Thank you, I mean that deeply. To any news listeners, welcome, and thanks for being here! To Parents of Children with Special Needs In A Pandemic This new normal? We got this like any new normal on this journey like giving my daughter a shot every night, piercing her flesh with the thin metal signifier of medical progress like explaining to her, once again, that her shots help her grow strong like repeating her words as an unobtrusive aside, an experienced translator to the in-articulation that sometimes spills from her lips like waking in the night with the random but heartbreaking realization that she can never go to ‘typical’ summer camp unattended and devising ways to secretly imbed a one-on-one aid for when she begs to go because her sister, who has the luxury of rolling up her sleeping bag and stealing away for a week with no concerns for prescriptions, diet, injury, or behavior modifications, has already left like slowing my pace any time we walk together or asking for updated prescriptions of albuterol when a virus attacks the community or buying fresh batteries for her oximeter, because I’ve seen her struggle with coughs before and know how to prepare, like speech therapy on zoom These times are calling for us to adapt, like we know how to do, to dip brushes into paints we’ve never seen before, spread them across a canvas that was chosen for us, sometimes we get bogged down by the minute details, anxiety-ridden and grief-stricken over the tiny flecks of paint that have scattered outside our design, like teaching math to a child who can’t grasp the concept of numbers, or patiently answering the same questions because the perseveration is a sign of anxiety and so are the tears she sheds onto her pillow at night and the lack of social continuity has caused her to feel hungrier than normal and we know it will always be this way for her and we can lament over the spilled droplets of paint, or we can paint petals around them and name them flowers and then step back and see the painting for the masterpiece that it is and we can adapt, again, as we are asked to do on this journey, and we can remember that yes, it will change again, this normal won’t be anymore, and we will thank it’s passing and fret the new, or vice versa, but we will adapt, this new normal, whatever it is, we got this