Passing for Normal

Hello! After our extended holiday it is good to be back. This week marks four years since Claire passed unexpectedly. In 2023 I wrote a piece called "Leaving Holland" a response to the poem "Welcome to Holland" by Emily Perl Kingsley that attempts to describe a bit what this process has felt like. In this episode I give a quick update and read this piece that still resonates deeply within me. Thank you for listening.

Wishing you all peace and joy in the last few days of the year. We are exhausted and are off for a bit to recharge. This passing for normal stuff is hard, sending love to you all.

In this weeks episode we discuss a encounters with the neighbors that could have been normal but were anything but that and why Colleen is not aggressively decorating the front yard for Christmas. We also discuss just how hard the holidays are and how our current best strategy is to try and escape.

In this episode we discuss the October surprise that nobody was expecting, Colleen's sudden urge to celebrate Halloween, which is odd to observe from the Southern Hemisphere. We talk about how hard it is to get to a place of celebration in light of grief and how different it is to suddenly have the capacity.

In this episode we discuss how awkward October is, between Rett Syndrome awareness in our new world where nobody knows about it, the anniversary of the diagnosis and Claire's birthday. Jared and Colleen share their separate strategies for dealing with the birthday and when to tell new people about Claire.

October is Rett Syndrome awareness month so we dedicated this episode to things to be aware of, in regards to Rett syndrome, particularly what you CAN do to make it better.

First and foremost, we talk about the 9th World Rett Syndrome Congress. Very exciting! Sept. 14 is R U OK day in Australia, an effort lead by a suicide prevention group. We talk about why this is so important and how having a child with special needs doesn't exempt you from all the normal stuff in life.

In this episode we talk about how each of us uses social media differently and how complicated our relationships with it are. We also give a quick update/ follow up on Chloe's school.

Special guest Chloe wanted to come on and talk about how stressful school has been and how this is impacted by being an immigrant with a dead sister but nobody notices that. We also talk about how a love for accordions is getting her through and why Colleen irrationally went to great lengths to purchase a 90 year old German accordion.

After an eventful trip back to California, we are settled back into winter to talk about how the trip home was in reality after we discussed what we expected in the previous episode. Spoiler, we had a great trip. We also talk about how happy we are to be sad.

In a special Friday evening episode, we discuss Chloe not needing us, how crazy winter in Australia is and the complicated feelings around social expectations of grieving parents. This will be our last episode until August. We are looking forward to a break and coming back with some fresh stories.

In this episode we talk about self care, how ridiculous a lot of the messaging around it is and what we have found to be helpful. We also give a little update on what we have learned about the Australian high(er) school situation and talk about how awesome ASCEND, the upcoming conference hosted by the International Rett Syndrome Foundation.

We talk about how music has played a role in many of our more challenging times and how weird it is to be in a fairly normal little groove.

In this episode we discuss learning a whole new school system, which moves graduation up by two years and how Colleen can't cry so she's incredibly overwhelmed by dress shopping, which should be a fairly simple and straight forward process. We also talk about learning how to podcast and not delete 8 minutes of a show. So much to learn, thank you for being here.