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Thank you to all of you, my “virtual” friends and TSC family.

Second Annual “Blogging for TSC Awareness Month” Day 18

by guest blogger Sarah Burton  (Highland, California)

IMG_3514 (1)Our journey with TSC began on November 3, 2012.  When Jackson was 3 months old, he had his first seizure.  His
eyes rolled back and his body fell limp.  I just remember holding him up and crying to my husband, “What’s wrong with him!”  The pediatrician said it didn’t sound like a seizure and to monitor him at home.  The next afternoon he had another episode, so went immediately went to the ER.  They admitted him right away, and he had four more seizures that night.  He was pumped full of Phenobarb, which quickly controlled them.  After a normal EEG, an MRI was ordered and we were diagnosed with Tuberous Sclerosis Complex.

We experienced all the normal reactions…disbelief, anger, sadness, confusion. Those feelings did not go away for a long time, and some still linger.  After four days in the hospital, I came home with Jackson.  I walked into our bedroom, looked at his bassinette, his baby calendar, and felt an immediate sense of loss.  I was lingering in this dark fog between life before the diagnosis and life after the diagnosis.  Nothing of Jackson’s looked real or familiar.
It was a horrible feeling.

As I was attempting to deal with this news, I was comforted by my amazing family and friends.  Everyone wanted to help, to reach out, and to be there for us in any way they could. But it wasn’t enough.  No one would ever begin to know what I was going through, what I was feeling.  Our lives were forever changed overnight, and I needed to find a way to cope.  I needed to stop looking at my son and seeing only the disease. I needed to stop looking online where all I seemed to come across was devastating information.  I needed to find someone who understood my pain.

About three months in, I found Inspire.  I starting reading other people’s stories, other people’s struggles with TSC, and it brought me closer to a human photo (6)connection that I desperately needed.  I reached out to a few people, asked some questions, and it felt good.  But it wasn’t enough.  I still felt alone, like all I could think about was the disease, and Jackson’s future.

I had Facebook, but never used it for anything relevant.  I decided to try and search TSC.  And I found Becky and Connor. A mother and her son with TSC (who reminded me so much of my little Jackson).  Her stories of the struggles and triumphs with TSC had a funny, sarcastic twist which brought some much needed humor into my world. It was a reality that I could relate to. That’s what I needed.  I needed someone to walk along side of during this journey, someone who understands.  I had plenty of people in my life who sympathized with me; I needed someone who could empathize.  I continued to search out TSC on Facebook, joined the TS Alliance group, and connected with more and more people.  I found an amazing group of women, viewed pictures of their beautiful families, and read their stories.  I saw the faces behind the disease and finally began to accept that this was our new normal.  Two of the pieces of advice I was given: “do not let TS define your child” and “one day at a time” still guide my daily attitude.

IMG_2320 (1)When my first born Isaac was two years old, running around and getting into everything, I must have expressed exhaustion to my mother.  She said, “Honey, you want your child to be getting into everything, that’s what they are supposed to do.” She then told me about her friend who had a special needs child who was not “getting into things.” I think about that conversation all the time.

Jackson is now 21 months old.  He is mobile, but not walking independently yet.  He can crawl, pull up and cruise really well.  He is finding his balance, so we hope to be walking soon!  We had seizure freedom for seven months, but this past November his infantile spasms came back with a force.  We have tried numerous meds, Prednisone and ACTH, but nothing has worked.  It has taken a toll on his development.  We have a wonderful neurologist at UCLA who we absolutely love!  We will start testing in two weeks to see if Jackson is a candidate for surgery.  But our story does not end here, this is only the beginning. My sweet Jackson.  He gives the best hugs and kisses, and when I smile at him, he smiles back.  That’s all that I could ask, for my son to be happy and to feel loved.

So “thank you” to all of you, my “virtual” friends and TSC family.  You ultimately helped me cope; you are what I needed.  Thank you to my amazing husband Caleb, and my two other beautiful children Isaac and Ava, who help me on a daily basis take the best care of Jackson possible.  We are so fortunate to have a close knit family and circle of friends, who lift us up with their constant outpouring of love and support.  Another TS mom emailed a video that included the following quote. For all of the TSC fighters and their families, for a cure one day…

“Love is just the antidote when nothing else can cure me.”

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Phil Robertson and your Facebook friends.

One night in college we all dressed up, left the dorms and headed downtown. One of my friend’s cousins was visiting from Miami. He’s gay. I don’t remember where all we were headed, but Boneshakers, a gay club back in the day in Athens, was one of our destinations. We had fun, and I thought, aren’t I so progressive, going to a gay club?

The next day, another friend pointed out to me that I had referred to several things that annoyed me that evening as “gay.” My friend and her cousin had exchanged looks, but never said anything to me. I was oblivious–never even realized what I was saying or how it would be perceived. I wasn’t saying it to be hateful, it was slang. But I immediately eradicated it from my vocabulary when I realized how it came across.

Same thing about the “r” word. I confess I used to use that word, too. It wasn’t until I personally knew people that were intensely pained by it that I finally got it and dropped it. Sometimes, we say things not understanding the impact. When my TSC friends discuss their hatred of the term and people who use it, I feel like there is a scarlet R burning on my chest, and I wonder, do they know? Do they know I was one of them?

I’m bothered by this whole Duck Dynasty thing, but not because of what was said and who said it. Frankly, take into account the guy’s age,  background and where he lives. It’s not particularly shocking. And if you met him in person, I think he’d be a really nice guy. I don’t watch the show, but I’ve seen bits and pieces, as well as stories of things they have done to help others in need. I personally don’t like what he said, and just as he has the right to say it, people have the right to be angry, and A&E has the right to “protect their brand.” That being said, I’m not all that sympathetic to A&E either because I’m sure they have to sign off on everything the cast does, and come on, they knew his beliefs. No, I don’t care about any of that. What I care about is what I see on social media.

A lot of fans are angry about Phil Robertson’s suspension from the show. They feel he is being attacked for being a Christian and living by the Bible. And so the posts and memes began. Phil Robertson for president! I stand with Phil! But then some started getting more…honest. It turned into a revering of someone who stood up for the truth about homosexuality.

Some nasty things have been posted as status updates, nasty comments have been made beneath them, nasty things have been “liked” that then show up in your friends’ news feeds. I even read some cruel comments made by family members of one of my FB friends who is part of the LGBT community. Family. Wow. This led me to look closer at the friends lists of some of the people whose disturbing posts I saw.

Are they aware that they are connected to members of the LGBT community? These days it’s hard not to be because Facebook isn’t just about who you know now. You reconnect with high school and college friends, co-workers, sometimes even elementary friends. We’re connected to other families who share our path with special needs or have common goals or beliefs. Maybe you actually think you don’t know any gay people? Are you sure? Check your friends list again. Maybe, just maybe, you have a gay friend who is working towards a goal you both hold dear. Did you want them to see that? Was it intentional or an accident? And now that you know, would you post it again?

I have no doubt I’ve said and posted things that others don’t like. Sometimes I have no idea I’m irritating someone until I break the last straw and  they unload on me because I’ve been rubbing them the wrong way for three months. Sometimes it takes me a while to get it, too.

There is a meme that floats around every so often that I always snicker at. It cracks a joke about a well known practice of a particular religion. I’ve wanted to post it more than once. But I never have because I know I am connected to people in that religion. I have no idea if they’d even care, but since this is one of those rare occasions in which I have some self awareness, I don’t.

I’m not trying to change anyone’s minds about their beliefs. I’m just saying, look through your friend list. Put an actual face on what you’re saying. I know I didn’t get it until I had faces for who I hurt with the words gay and retarded.

I’m not perfect. I might offend you tomorrow. Maybe I’m offending you right now. I have jerk thoughts all the time, and sometimes I say them, too. But think about how you feel when someone posts an update calling something or someone retarded. Or how you feel if someone posts that all Christians are hateful. Or all liberals are stupid. Or all conservatives are evil. Or when family and friends reject you because of the circumstances of your life. I wonder what it’s like to hop on FB to see what your friends are up to, only to see that a bunch of them believe you’re destined for hell.

I don’t write this because I think you will change your beliefs. I write it because I wonder if you’ll change the way you post.

Purple and red go together like Bert and Ernie.

“Bert + Ernie for Marriage Equality” / Toy Sto...
“Bert + Ernie for Marriage Equality” / Toy Story / SML.20130327.IdealHusbands.Remix (Photo credit: See-ming Lee 李思明 SML)

IMG_3121Connor does not own a stitch of purple and Chris wasn’t on board with me dying his hair purple to match mine, so I recruited friends and family to wear purple on his behalf yesterday  for Purple Day and epilepsy awareness. Connor has epilepsy due to his brain tubers from TSC. That being said, we have not seen any seizure activity since Feb. 10.We didn’t do too shabby considering we were in stiff competition with the sea of red washing over Facebook due to the Supreme Court hearings on gay marriage. It was bad timing for me as red is definitely my color and I have a ton of it. But since that is a two-day affair, today I got to discover that my still purple hair goes great with a red top. Politics, schmolitics. I’m in it for the fashion. And who knows. Maybe someday, people will figure out that you can’t claim to have Jesus in your heart, and in the same breath, call someone a fag and condemn them to hell.

My mom rocking the layered purple look.
My mom rocking the layered purple look.
Arianna strikes a pose in a very fashionable ensemble.
Arianna strikes a pose in a very fashionable ensemble.
Giovana took her purple to the court house (where she's an interpreter, not a criminal).
Giovana took her purple to the court house (where she’s an interpreter, not a criminal).
Mieka represented in Canada.
Mieka represented in Canada.
Sara claimed she was having a bad face day, but she's never needed an excuse to send me a picture of her chest.
Sara claimed she was having a bad face day, but she’s never before needed an excuse to send me a picture of her chest.
Asma doesn't believe in wearing purple pantsuits to court, but eye shadow is another story (lawyer this time, still not a criminal-officially).
Asma doesn’t believe in wearing purple pantsuits to court, but eye shadow is another story (lawyer this time, still not a criminal-officially).
Sondra and Jareyl rocked some mother/son purple.
Sondra and Jareyl rocked some mother/son purple.
Rachel doesn't do purple clothes, but she does purple flowers.
Rachel doesn’t do purple clothes, but she does purple flowers.
Claudia, Isabella and Arianna made it a family affair.
Claudia, Isabella and Arianna made it a family affair.
Juliette was stopping traffic in her purple...oh my god, my captions are so stupid and yearbooky.
Juliette was stopping traffic in her purple…oh my god, my captions are so stupid and yearbooky.
Yuri only allowed her art students to use purple crayons all day. Right?
Yuri only allowed her art students to use purple crayons all day. Right?
Thomas knows the importance of accessorizing.
Thomas knows the importance of accessorizing.
Sleepy is modeling his human sister's former onesie.
Sleepy is modeling his human sister’s former onesie.
Lili represented in Barcelona, Spain.
Lili represented in Barcelona, Spain.
Danita took her purple to the bank. No really. That's where she works.
Danita took her purple to the bank. No really. That’s where she works.
Ann went to sleep dreaming of purple sheep.
Ann went to sleep dreaming of purple sheep.

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Magic Mike, wi fi, iPhones and other such things we can’t live without…

People Magazine’s Sexiest Man Alive edition arrived the other day. Channing Tatum. Thoughts, ladies? I have to say I wasn’t really a fan until Magic Mike. That is embarrassing for me to admit because Magic Mike is one of the dumbest movies of 2012. Plus, and I hesitate to say this as a mom, but it wasn’t gratuitous enough. I mean it’s a movie about strippers clearly targeted at women wanting a girl’s night out, the majority of which, I assume, consumed alcohol beforehand. That’s what everyone did right? We did. And we went to a matinee. Yet, I think we can all agree that too many chances were lost with the other strippers. Joe Manganiello and the dude from White Collar were wasted opportunites. Just saying. I haven’t read the article yet. I don’t want him to ruin it by talking.

Chris, Connor and I spent the weekend with my parents at a cabin in Fort Mountain State Park in North Georgia. My parents do the whole cabin thing a little differently than Chris and I do when we go to the mountains with friends. Our cabins typically come equipped with pool tables or air hockey, a jacuzzi, satellite TV and more bear themed paraphernalia than you can stuff in an 18-wheeler. You know, just enough away from civilization without being too Deliverance about it. My parents like to roll rustic. No air hockey, a few basic channels and GASP no wifi or even much of a cell network period. I suppose I can’t deny it anymore. I’m a hardcore addict to my phone. I’m not like those freaks on MTV that sleep with their phone or anything (that’s ridiculous, clearly the bedside table is close enough) but take away my wi fi and 3G (yup I said 3G, lame Verizon) and you’ll find me desperately pressed against a cold window trying to simultaneously update my Facebook and Instagram feeds. We went into the town of Blue Ridge for the afternoon and I was like a crack fiend in a police evidence storage unit except instead of drugs I was getting high off access to technology. I’ve always been a fan of instant gratification, but the smart phone has ruined me. If I take a picture that I want to post, it’s not sufficient to post it tomorrow….I have to post it NOW! Some of you might be thinking, “Well that’s strange. She NEVER answers her phone when I CALL.” Yes, that’s right. I’m part of the new school of anti-talking phone addicts. I don’t want to TALK to you. But if you wanna text or Facebook me, I’m down. I’ve never been a phone person, even as a teenager. I remember how badly I wanted my own phone as a kid. I loved that phone, too. I was 11, and it was one of those phones with the giant buttons. I used it to call the theater for movie times. I wasn’t planning to go to the movies, I just wanted to dial the big buttons without actually talking to anyone. I’m pretty sure once people read this they won’t be trying to call me anymore anyway.

Maverick in Blue Ridge. Goose already bailed.

Something else I noticed at the cabin was that even though Connor is about to be 8 months old, I still can’t get used to my parents being Grandma and Grandpa. I still catch myself referring to them as Mom and Dad on Connor’s behalf, as if he’s my brother and not my son. “Oh, look what Da- I mean, Grandpa is doing!” I figure I’ll be able to comprehend that my parents are  grandparents just as soon as I start comprehending that I’m responsible for the well-being of a small human.

Connor’s eye rolling incidents continue. We’re pretty sick of them at this point, especially since we don’t have confirmation of what they are. I’m thinking about calling the neurologist this week and requesting a take home 24 hour EEG, something that the EEG tech mentioned was a possibility last time since Connor declines to have these episodes when electrodes are on his head. Even though he is doing well in spite of them, I’m tired of wondering and obsessing. I look at the clock every so often and think things like, “It’s 2:16. Can we make it to the end of the day without any?” Then I get over eager to get him to sleep at bedtime so I can officially end the count of episodes for the day. Since these started he was having 0-2 a day. Very rarely did he have 0, sometimes 2, and usually 1. Just the last couple weeks we started seeing more 0 days, which is good, but the 2 days increased and suddenly he had three random days with three. WTF? Yet, many of the events are shorter, so I guess it’s sort of a tradeoff? It’s so irritating.

Anyway, I want to share some links to some other TSC blogs I follow. I encourage you to check them out as long as reading mine remains your priority. 🙂 haha. Every individual’s experience with TSC is different, so you can read and share your experiences with others in the TSC community and have stories that are nothing alike. I interact with adults who have it and are doing very well, living normal lives (not to diminish the medical issues they do have to contend with. It’s a disease you must always remain watchful of), but there are those that need a lot of care because they are so severely afflicted. And it’s always in the back of my mind that though we assume Connor is a spontaneous mutation, as are 2/3 of TSC cases, without genetic testing, I cannot say with certainty that I don’t have it myself.

My friend Wendi just started her blog. She was the first person in the TSC community we met and talked to. When we found out about Connor’s TSC and that he was facing brain surgery, we came across her son Hudson’s experience on a couple websites and immediately contacted her with questions. Check it out here.

Another one is my friend Tina. I’ve actually never met Tina. She lives in California and we met online through our wordpress blogs, then FB. Check her out here.

One last blog for now. I do not know this family, but they appear in some of the TSC literature, so Facebook stalker that I am, I located Laurisa’s blog. Find it here.

And if you’re not sick of clicking links yet, please check out this video that discusses some of the reasons that TSC research can benefit everyone, not just those with TSC. Click here.