Molly the Meek, or is she? – Disney, Universal, Make A Wish

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2014 – Disney, Universal, Make-A-Wish…My dear sweet Molly. Oh, how she loved so much about the parks. The princesses, the speedway (because she can drive!), the ice cream (because, DUH). Just about everything was just AWESOME. There was one thing that held her back. One thing that kept her sitting on the sidelines about 50-75% of the time. She was afraid. Of the rides. Of the roller coasters. Of anything that left the ground in any fashion. Lucky for her, her brother wasn’t too keen on the rides either. They sat out most of the rides. Fast forward one year. 2015. The year started out much like the year before. Molly holding back. Then something changed. Something small. She noticed the Barnstormer. She was afraid, but jealous of us going on all these rides and coming off super excited. And so she took a chance. She rode the ride. And came off exhilarated. She wouldn’t ride one that went upside down, but she went on every roller coaster from that point on. We went on the Barnstormer three times. She even, on the last night, went on Space Mountain. It terrified her, but she ended up loving it. Little by little she went from Molly the Meek to Molly the Daredevil(ish).  It was so much fun watching her emerge from that little ball of fear into eagerness. She admitted after our last roller coaster (Space Mountain), that every ride scared her, but that was half the fun. Molly stepping out of her comfort zone is a huge deal. So thank you, Disney. Universal. For bringing out the daredevil in this one. It’s awesome. You’re awesome.   Read more »


by Sarah Cass

Multi-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.


Where Did He Come From?

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For almost two years I thought we’d lost him. He never talked to us, he didn’t care about anything but the (now long gone from his life) girlfriend. Back then he wanted to be a doctor. Now that dream has been put aside for another, but that’s another post for another time. Because two days ago this kid came to me with a question. He asked if there was a way to raise money, because he wanted to do something with his spring break. He didn’t want to go on vacation with his friends, or go party somewhere. He wants to volunteer at Give Kids the World Village, the magical, wondrous place that provides a second home to kids receiving wishes for Disney World. Together we are working on finding a way to make this happen. I don’t know where this kid came from, or rather how we found him again. However, it seems my thoughtful, generous boy has returned into our lives. I can’t tell you how many times I heard “One day it’ll just click and his head will be screwed on right again.” I honestly never believed it would happen, but it seems to have come true. So welcome home, son. I hope we can find a way to send you away (for spring break). Read more »


by Sarah Cass

Multi-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.


Everything Old Is New Again – CF, Docs, and Plans

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Six months ago we were hit with a disheartening blow to our years-long CF journey. The pulmonary doctor we’ve had from the very start of our journey was transferring all her patients on to new doctors. With plans to retire very soon, it was time to transfer her last six patients to their new forever homes.  My two kids included. So, at our last appointment we met our new (highly recommended by Dr. A) doc, Dr. M. Change isn’t easy. We were suddenly reporting on a Tuesday instead of a Wednesday. Dr. M, while perfectly nice, was making all of these suggestions and recommendations and this and that and I was honestly panicked. Mostly because he wanted to do a complete, total, sweep of the CFTR gene on K. In my blind, “this is so different, I don’t know, so I’ll smile and nod” moment I did just that. I smiled and nodded. Yesterday we returned for the next appointment and this time, not so new, it was a little different. We spent some time with Dr. M, and the respiratory therapist and got a better feel for what’s going on. And so we set new plans, a new direction. My biggest concern with the genetic tests was addressed – would we lose the CF diagnosis, and therefor the vital insurance we desperately need for treatment? No.  Because of positive sweat tests and concurrent symptoms, their diagnosis of CF will remain no matter the results of the full genetic sweep (which is, blessedly, being covered by the fantastic CFF not just for Kennedy, but for Denver as well). Then we moved onto Kennedy’s current status.  Though her weight is at an excellent place right now for a change, her functions are not. She has maintained for years just fine, but Dr. M wants to do more than maintain. He wants to attack…and so… With her functions the way they are, there is definitely some sort of obstruction, and he wants to find it. There will be a chest CT. There will also be another functions test for before and after albuterol to see if there is any asthma-like influences, and she’s being put on a nasal steroid for her constant sniffles. We’re fighting insurance for a new vest system (with the doctor’s help) since hers is old and been beat up by destructive toddlers. She will be on an increased vest rotation and possibly new meds (hypertonic saline) which will require new equipment. Basically we are now fighting to push forward and move beyond basic maintaining and into full blown attack mode. It’s terrifying and exciting. I don’t know what’s happening in the future, except increased appointments and testing for the little one, but I do know that something is happening. Change is scary, but this is proof it isn’t always bad. And that first impressions aren’t everything. Read more »


by Sarah Cass

Multi-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.