This DownsideUp Life

Jenny has a bad week, lashes out via text, apologizes, gets hives. Stress takes a toll and seizures really do cause PTSD and CTSD. Heidi commiserates and also brings levity to Jenny's circumsstances.

As Heidi and Jenny discuss the extremem highs and lows of complex parenting. Jenny gives her review of Out of my Mind. At least she tries to. Its a must see

Its been a very dramatic week of extreme highs and devastating lows for the Rett Syndrome community. Listen as Heidi and Jenny process the information. Heidi is Nancy Drew and Jenny is just hanging on..

OMG! Neurogene released an update on the gene therapy trials for Rett Syndrome and we are thrilled, excited and cautious. Exciting newsthat we can't fully be excited about but also can't stop ourselves from being excited, GAH!

Neurogen tells us what is happeing in the clinical trial...al l we can say is...Let's go!

Just some thoughts on the election and how we feel. Which programs in the crosshairs that worry us.

We wrap up the last day of Rett Awareness month by announcing that Rett Sucks. Its fine, we are fine, we will all be fine.

Ellie is turning 16! Jenny wants to make driving accessible for Magnolia, probably a bad idea. Apple updates their software and we are here for it!

Sometimes scary things happen that make your kids have to think "what if"? For parents with kids of complex kids with complex needs we have to plan and think of things we don't want to. But we have to.

Heidi and Jenny hypothesize about gene therapy. Heidi has an addendum, hopefully its the right information. We should be celebrating the little steps forward in gene therapy for Rett Syndrome. Listen for all your complex parenting laughs.

What does inclusion mean to you? We all want for our complex kids. For all our kids. We want people to do the simple things like say hello and talk to them like they would anyone else.

All the thoughts we couldn't finish from lat week. Plus alotm of hypothesizing about gene therapy. Please don't quote us. We are not a news source.

Lesson learned, don't go out of town the weekend before kids go back to school. Setting yourself up for failure, by going out of town the weekend before, makes for bad planning. Things will go wrong. Not the best way to start the school year.

Heidi and Jenny gab about all things back to school.

Colin Farrell starts a foundation for complex kids, like his son, and we are here for it! Heidi and Jenny discuss "Back to School" and the complexities of working as a team. Jenny rambles, Heidi patiently listens.

We weren't planning on it, but we spilled the beans on the complexities of staying married when you are complex parents.

Its almost embarrassing how much we both adore Billy and Billy Footwear. Check out how Billy Footwear got started and why inclusion is important for this company. Truly inspiring! Which is why we fangirl so much!

After 4 days at the Rett Syndrome Conference in CO, we're back. We learned alot, met new friends and stayed up too late with our peeps. Jenny choked on a tater tot at midnight. Heidi ran around like a chicken with its head cut off. Just two normal moms living that Downsideup Life.

Trying to navigate aging parents, traveling and the ability to deal with the our own emotions.

Complex lives means we sometimes have to come to terms with Make a Wish and other fun stuff for complex disorders

Seriously? We can talk for hours about teeth brushing and all the intricacies of dental care. Our gift for gab is truly a gift.

We answer some questions to clarify Rett clinics, the joy of living in our own skin and the persistant caretaking phase.

Sometimes we realize that its time to rollerblade or play racquet sports for our sanity.

Get your booty to a Rett Clinic to help establish your team..