A Parallel Universe
Second Annual “Blogging for TSC Awareness Month” Day 29 by guest blogger Sara Weathersby (Decatur, Georgia) Unlike many who have blogged about TSC, I am not diagnosed with it or caring for someone...
View ArticleI didn’t hear anything from that moment on even though I saw the doctor’s...
Second Annual “Blogging for TSC Awareness Month” Day 30 by guest blogger Katie Creamer (Long Beach, California) Two and half years ago one of my biggest dreams had come true; I was so happy and...
View ArticleI agree to jump through your hoops. Can’t you just agree to just hold them...
I had the most ridiculous morning Friday thanks to the Georgia Department of Human Services. I am unconvinced they know the definition of either “human” or “service.” It started Thursday evening. I...
View ArticleThis year we celebrate 40 years of TS Alliance’s existence.
Second Annual “Blogging for TSC Awareness Month” Day 32 by guest blogger Susan McBrine (Oregon) Tuberous Sclerosis. Words a parent never wants to hear… Or expects to hear. Yet every day, all over the...
View ArticleConnor is a fish.
We just got back from a week in Venice, Florida at Chris’s parents’ house. Since Connor has weekly aquatic therapy, I was hopeful he would enjoy the pool this year, but I honestly expected he’d maybe...
View ArticleConnor just walked his longest distance ever!
Tuesday Connor walked his longest distance ever independently. He’s been getting better and better at walking with the emotional support of holding a hand or even just a finger, and sometimes even just...
View ArticleSeizure Hunter — The Elusive Prey
Seizures are really obvious. I couldn’t possibly miss one. We’ve all seen them on television: the fall to the floor, the violent thrashing, maybe some foaming at the mouth. Therefore, it’s really easy...
View ArticleAnother blogger talking about the #IceBucketChallenge! *groan heard worldwide
Too bad. I’m gonna write about it anyway. I’m terribly jealous of it, you see. What I wouldn’t give for this kind of exposure for TSC. But what it has done for the ALS Association is amazing. From...
View ArticleA night in the hospital.
There has been a lot going on lately. Last Sunday I attended the celebration of life for Trinity Sumlin. I met her mother Sheryl when we were fighting for medical cannabis and HB 885 during the last...
View ArticleYou can get Epidiolex in a month if your definition of a month is 210 days to...
Connor had a 48-hour VEEG a few weeks ago. It was awesome. Instead of waiting weeks and weeks to get into CHOA, we were given the option to use a company that comes to your house and hooks everything...
View ArticleSleeping With Scorpions
It was a quiet, relaxing, long weekend in the North Georgia mountains minus the morning we woke up with a couple of surprise visitors in the room. Chris was the first to drag himself out of bed and...
View ArticleA trip to the ER and other medical hassles.
And of the medical hassles, the ER was the most pleasant one. Our Christmas Eve tradition for the last few years is to have family over for Christmas Eve dinner. We stuff ourselves with appetizers and...
View ArticleTuberous Sclerosis Complex Awareness Month – Joy
Third Annual Blogging for TSC Awareness Month Day 1 by guest blogger Ryan Kennedy (Woodward, Iowa) Joy Who knew what this journey had in store? I was going to be a father again. My wife held a child...
View ArticleYou are not winning, TSC.
Day 2 of Blogging for TSC Awareness Month by guest blogger Mary Garnett (Roanoke, Virginia) I was just 24 weeks pregnant when the words “tuberous sclerosis complex” were muttered to my husband and me,...
View ArticleUnconditional Love
Day 3 of Blogging for TSC Awareness Month by guest blogger Caroline Clyborne Ramirez (Austin, Texas) Since our son, Leif, first learned to talk, we’ve been drilling him on a basic call and response:...
View ArticleTo TSC:
Day 4 of Blogging for TSC Awareness Month by guest blogger Annaka Vimahi (Utah) originally posted on her blog To TSC (Tuberous Sclerosis Complex): We had never heard of you when you randomly entered...
View Article“If you spend too much time waiting for the storm, you’ll miss the sunshine.”
Day 5 of Blogging for TSC Awareness Month by guest blogger Amy Dublinske (Kansas City, Missouri) “If you spend too much time waiting for the storm, you’ll miss the sunshine.” A wise quote to live by,...
View ArticleOne Hour At A Time
Day 6 of Blogging for TSC Awareness Month by guest blogger Fatima Badri (London, England) I had a pretty normal pregnancy; all of our scans and tests showed that our beautiful boy was growing normally...
View ArticleHe is our superhero.
Day 8 of Guest Blogging for TSC Awareness by guest blogger Melissa Courtright (Caldwell, Idaho) We have two children. An older daughter Robin who is 11 (non TS), and Remy, who just turned three. He...
View ArticleMy New Normal
Day 9 of of Blogging For TSC Awareness by guest blogger Jackie Grenia (St. Louis, Missouri) For 15 years, my normal consisted of all things BOY. In 2014, remarried with now a fourth son, and pregnant...
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