A Special Storey

Remember in the last episode, when Sharon claimed she was standing at the edge of a Lulu-illness-related precipice? Well, in this episode, we get the dramatic conclusion to that story. Sharon also discusses her thoughts on pursuing passions and hobbies while having kids, and how that sometimes means incorporating them into those projects. And speaking of kids, our favorite guest, Max, joins me to recap our Easter plans!

Today we discuss our weekend plans, and why Sharon is feeling like they are so iffy. We also recap a facebook post that resonated with Sharon, and why we feel like it's so easy to feel isolated today (despite how connected we all via phones and technology). 

In this episode, we discuss some of the easy modifications we've made to help with common Sensory Processing Issues. We also highlight our current Occupational Therapist, and Sharon tells the non-efficient way she found them. 

We have some fun this week discussing how we handled most of the house coming down with the flu, and how a fever led Sharon to come up with her Official, Ultimate, Pro/Con List (TM). Sharon claims that having the flu led her to believe in the power of a jinx, feel some strange combination of free and powerful...but also made her realize she still needs her Mom. Steve realizes that being Mr. Mom was a bit more work than he was expecting, and wonders if Max is expecting him to become his permanent "roomie". 

Today, we recap Max's amazing interview, and give our thoughts on some of the things he said. We share which of his thoughts and feelings surprised us, including some that he had never actually shared with us before. We also give our take on what makes their relationship unique, and how watching them has made Sharon stop worrying that Max is "missing out". 

In this episode, we hear from our 7 year old son, Max, on what life is like as the older brother to a child with special needs. We discuss all of the things he loves about life with Lulu, but we also get real about the hard and stressful parts, including what it felt like when Lulu was in the hospital. Don't be fooled by his age--Max's answers and insights will leave you impressed and inspired! 

The effect of Lulu's seizure medication, and her subsequent hospitalization several weeks later. We also discuss why her experience with RSV didn't follow the normal progression, and what it felt like to be in the hospital for 10 days. Finally, we wrap up with some thoughts on how that experience shaped our perception of Lulu, and what our realization was after it was over. 

Lulu's first winter, and the beginning of some fairly serious health problems that started when she was about six months old. On December 31st, 2015, she had her first seizure, and we talk about the process we went through to get the diagnosis confirmed. Sharon talks about the first time she ever felt like she knew better than the doctor, and why we felt so powerless. 

A Merry Christmas and Happy New Year to all!In this episode, we recap our Christmas dinner experience, and a secret party that we didn't talk about beforehand. Sharon shares how all the end of the parties makes her feel...until she realizes that we aren't even close to done with Christmas parties. We also review some of the headlines from the Down syndrome community that caught our attention in 2018! There are so many wonderful things happening, and we shared our favorites. Please let us know what your favorite stories were (they could be personal, or news stories!)And don't forget to rate, review, and subscribe. 

We discuss our last minute Christmas shopping, and our plans to host our first Christmas dinner ever. Steve learns what a "tablescape" is, and objects to the term on principle. We review what we got the kids for Christmas, and which gifts have educational purposes vs just for fun. We also highlight the #wouldntchangeathing organization, which has made some wonderful videos showing kids and families with Down syndrome in a positive light. Their latest video features an intro from Michael Buble! Lastly, we recap the gift suggestions we received and give some listener shout outs!We would love to hear from you - please let us know if you listen!Go to www.specialstorey.com for more show notes!

First, we are in desperate need of gift ideas for our parents. What are your best gift ideas??Also, both of our kids are now sick, ironically. This of course happened the week after we released our podcast on beating cold and flu season. We are having Christmas dinner at our house this year, where Sharon may or may not play party games, get really competitive, and tell egregious lies in order win.I thought that having community was unnecessary....but now realize I couldn't live without it. We love: - The Down syndrome Association of Northern Virgina (Lulu is on their 2019 calendar for the month of April!!)- The other moms we've met, either through friends of friends or just simply at the pool- The Down syndrome Diagnosis Network, especially the Rockin' Heart Heros group!-  Our awesome attendant, Melissa- All of our doctors, nurses and therapists, who work hard for us every day.- Don't forget to let us know what you think, and what you do while you are listening!Go to www.specialstorey.com for full show notes! 

When Lulu was a baby, she had some severe respiratory issues due to her heart condition. We talk a little bit about some of the readily-available products we found to help her stay healthy and out of the hospital!Check out the show notes (with links to the products we mention) at www.specialstorey.com. Please don't forget to rate, review and subscribe! 

Episode Recap: 01:00 We recap our second out of town trip in two weeks, and why going on vacation can sometimes make you want to take another vacation!02:05: Sharon describes her first Sharon-panic over a child coughing, and what we will do now that cold and flu season is here. 06:45: We got our 12 foot tree up! Not in any sort of easy or organized fashion (naturally), but it's up!09:05: We describe the "Winter Wonderland" they put on in our neighborhood, with a train ride, a horse drawn carriage, Santa visits, a "Santa's helper tent", and a hot cocoa station.14:16: The 5 Reasons we love having a child with Down syndrome!!31:08: Please rate and review us in iTunes! It definitely helps others find out about our show. And we would love to hear your feedback on the show! You can listen to the podcast, leave comments, read show notes, and see pictures at www.specialstorey.com 

Happy Thanksgiving!!We recap our trip to Charleston, including our favorite stop at Bitty and Beau's Coffee Shop. We also give a full history of the Apple Cup (kidding!), and explain why we essential blame Costco for almost-sort of-not-really forcing us to make big purchases. We discuss our thoughts as to what to say when a family member or loved one gets a Down syndrome Diagnosis, and some ways you can help and support them during that process. As always, see additional notes and photos at: www.specialstorey.com!!!

- We recap our Halloween party, and discuss our Thanksgiving plans!!- We talk about the moment that the Down syndrome diagnosis became "official", and what that felt like. We also discuss some of the feelings that come with the diagnosis, and how joy and grief can coexist.  - We give our take on the "Welcome to Holland" story. See show notes and updates on our website: www.specialstorey.com!Happy Thanksgiving to All!!!

We discuss who we are (nobodies) and what our qualifications are to start a podcast (none). And yet, here we are!We also discuss our two kids, who have thrown us into the world of special needs parenting. Our daughter, Lulu, has Down syndrome, and our son, Max, has Sensory Processing Disorder. Both have some challenges, but we wouldn't change a thing!  

We talk about Sharon's obsession with Fall, Halloween, and her potentially controversial decorating schedule. We also tell the story of Lulu's Down syndrome diagnosis, which happened about an hour after she was born, and some of the thoughts and feelings we had.