I remember when once a week I used to think to myself, “It’s closing time already?” Now, once a week, I think to myself, “Don’t you know to bag the cold stuff together?” Oh the difference a few years and a move to the ‘burbs can make. My husband and I live in the Atlanta area, but just far enough north that my friends refer to it as Tennessee and mock me for the days I said I would never move OTP (if you’re an Atlantan, you know what that means). He is in finance, and I am a former teacher (to be a teacher again? Who knows. I miss teaching, but not the PC paperwork garbage that comes with it). Now I write education and parenting articles for sites such as eHow, Livestrong and Modern Mom and I’m the chair of the Atlanta/North Georgia Tuberous Sclerosis Alliance (opinions expressed in this blog are my own and not representative of the Alliance). I have a journalism degree from the University of Georgia and a master’s in education from Oglethorpe University. I currently stay home with our son Connor, who looks exactly like my husband in spite of the fact that it was I who gave up drinking for 39 weeks and 3 days to bring him into this world. We often joke that we will be the first couple in history to appear on Maury to find out who the baby mama is. I battled anxiety and depression for several years, until I discovered a magical drug called citalopram. I believe that coffee and wine are essential elements of life. I’m passionate about travel anywhere, but I’m partial to Asia.
Our son was born in March of 2012 and diagnosed with tuberous sclerosis complex after he started having seizures. Until then, we had never even heard of it. Most people we meet haven’t, yet it is more common than Huntington’s, Lou Gehrig’s disease and cystic fibrosis. So what is it?
Read this to find out. He’s had seizures, infantile spasms, brain surgery at four months, daily medications, a medical diet, occupational and physical therapy, speech therapy, aquatic therapy and music therapy.
Connor is an awesome happy toddler, although he does have developmental delays. We are optimistic that he is going to kick TSC’s butt. There is no cure, but some people can lead normal lives with it. Our main goal is to give him every opportunity to do so.
So this is life with an unexpected curve. I hate the curve, but somehow life has remained good so far.
Interested in contributing?
If you have a TSC story you would like to share, I’d be happy to publish it here. One of my passions is spreading the word about TSC. It’s a little known genetic disorder, but research into the issues it causes benefit a far larger population than just TSC sufferers. If people knew more about it, they would realize that advances in TSC research can help all people who suffer from various cancers, epilepsy and autism.
If you have another idea as a contributing writer that you feel is fitting for this blog, I also welcome those ideas for review–mom stuff, how-to articles, travel (my other passion!), etc. If you have a blog or website you would like to promote, you can include that with your contribution. I will need to review your link in advance, and it must be to a personal blog or personal site. I do not accept links that are not fitting with the theme of the blog or are clearly intended purely for SEO.
e-mail Becky at pin.the.map@gmail.com
Mixed Up Mommy 
I’m so sorry your beautiful little one is going through such a rough time. I’ll be praying for him. Having sick kids is heart wrenching especially when the treatments are all so torturous. Despite all that we must never give up hope!
http://faithfulmomof9.wordpress.com/2012/09/28/how-do-we-keep-hoping-when-all-seems-hopeless/
http://faithfulmomof9.wordpress.com/about-betty-boop-under-construction/
I can’t tell you how much joy this blog just brought to my snowy Saturday morning here in Pennsylvania. I happened upon your blog while googling “eye rolling seizures TSC.” You see, like your sweet boy Connor, my son Atticus (also born March 2012) was diagnosed with TSC when he was three months old. Last night was the first time we noticed what we think was an eye rolling seizure (I had no idea if they even existed). It has been quite a rollercoaster ride for us this past year. We were also the couple who closed down the bars and I was the mom distraught over having to give up alcohol for 40 weeks 🙂 I am a teacher and, as you said, I love teaching but hate the PC paperwork crap (especially in special ed). Oh, and my son looks just like his dad as well, but I’ve come to terms with that b/c my baby dad is very handsome 🙂 Atticus has been on Vigabatrin for 9 months now and there was a point where we were going to try to ween him off, but during the EEG to determine if this was ok….he had a seizure! Nothing for months, and bam! In fact, there are times that I forget he even has TSC because he is such a happy, bright little man. We are starting to see some slight delays, however, in mobility and speech, but we’re just working with him and holding out hope. So after my long ramble, I just want to thank you for taking the time to post such valuable information and uplifting stories on your blog. It’s so nice to know that there is a family out there so similar to ours. Your positive attitude just changed my whole day because, to be honest, I was pretty freakin depressed when I saw that seizure last night. Oh and we have a walk for Atticus in our area in May. Keep up the good work and give Connor a hug from us way up in PA!!
Thank you so much! Your comment actually just brightened my day as my insurance company has managed to irritate me this morning. I’m glad Atticus is doing well and is happy. I think the fact that Connor is so happy makes it easier for me. I wish you the best with the seizures. You just never know. We haven’t seen one since Feb. 10 so we’re crossing fingers. Feel free to find me on Facebook if you like…facebook.com/pinthemap
Love this blog! You rock, even if you do live OTP. Are you going to the walk so I can meet Mixed Up Mommy in person?
Thank you! I will definitely be there. Just look for the blinding neon yellow Walking For Connor shirts! 🙂
I live in Macon Ga and my son and sister both have TSC. Dorothy is 57 and Chris is 21. Both have seizures and learning disabilities but Dorothy is able to live semi independent in high rise apartment for the elderly and disabled here in Macon, Chris, barring a miracle or better treatment, will never be independent (semi or fully). Chris was 5 years old before his first recognized seizure (we now think he was having them all along) and a week before his 6th birthday was diagnosed. A month later Dorothy got diagnosed at her eye appointment which solved a 40+ year mystery as to why she had seizures. Chris is generally happy but continues to have bad seizures, kidney and behavioral issues. Dorothy has visual impairment, diabetes, and emotional issues along with partially controlled seizures. She also uses a walker or Jazzy chair to get about. I also have two healthy daughters, a wonderful son-in-law and a healthy granddaughter. Hope to meet you and Connor at the walk this year, we missed last year due to a death in the family.
Hi Donna! I know who you are from the Facebook forum and I believe we e-mailed last year when I was putting together the Faces of TSC book for the March on Washington D.C. so I know a bit about Chris. I will actually be in touch shortly about updating his story. I look forward to meeting you in person at the walk!
Hi there! First of all, I’ve been following your blog for a while and I love it! I have a daughter (2,5yrs) with tsc, so lots of recognition in a lot of stuff. We live in Amsterdam, Europe. I have been reading a lot about cannabis, and although Amsterdam is famous thanks to cannabis, research on it is not really happening.
I wandered if you heard about the Lanier Landing blog (lanierlanding.blogspot) it is (mostly) about a little boy with tsc who is participating in the Boston trial, thought you’d be interested (it’s not on your blog list..)
Keep up the good spirit and positive attitude, it’s inspiring!!
Thank you so much for reading! I was not aware of that blog but will be sure to check it out. Thank you!
Hi there, My name is Kate and I just stumbled across your blog today. First, that picture of you and him as a skeleton is precious. It’s too cute. My son Cooper just turned 3 and has many developmental delays. We are struggling with speech, fine motor, gross motor and much more. It’s tough but he is such a cutie and that helps:-) Glad I found your blog!
Thank you so much! Headed over to check out your blog 🙂
I have been in Accredo Hell for 3 years. This is what i have learned. Everyone needs to contact a reporter to get this out in the public. Look on line for any consumer reporter with USA TODAY, Wall Street Journal, and major publication.
Email Brian Henry- bhenry@express-scripts.com and let him know enough is enough and we are all going to be emailing reporters.
Call presidents number and leave a voice mail- you will never get a human being.
1-800-871-4663.
This has got to stop.
Ugh! Three years…so thankful I was able to switch. I’m adding your comment to the post “How is Accredo Pharmacy getting away with this?”
Consider sharing your story with reasonstosmilebook.tumblr.com!
Hi. I just (like, five minutes ago) found out about your blog through “FaithfulMomOf9″/”Living And Loving With Our New Normal” and couldn’t wait to check it out. My cousin (who’s 22) has TSC, and it has always been difficult-nearing-impossible to find folks who’ve even heard of TSC, let alone know anything about it. I look forward to following your experiences, and of course wish you, Connor, and the rest of your family the best of luck. 🙂
Thank you so much for dropping by!It’s always nice to connect with other TSC families. Where do you live? There a number of Facebook groups for TSC if you are ever interested in finding more people 🙂
I’m in NYC. I actually know about a lot of the groups and events, especially because my cousin’s mother and grandmother are (or were, in his grandmother’s case; she passed away in…I think 2008) quite active in the TSC community. To be honest, for me (because the cousin I mentioned who has TSC is my 2nd cousin, so we’re not as close), the special thing about finding your blog was that it was completely by accident: I didn’t go searching for a blog about TSC; I just happened to come across it in my usual browsing of several Special Needs blogs I follow (because I, myself, am an adult with Special Needs; the blogs I follow are ones I relate to in one way or another). Now, of course, I’ve added your blog to my list; I look forward to seeing where it will take me on my journey! 🙂
While I don’t have any children with TSC, they both have a rare syndrome that causes a slew of diagnoses including developmental delays and seizures (so far just my son, not my daughter). I know what it’s like to have to tell your story to every doctor you go to. I advocate like crazy, even when I’m in my own doctor’s appointments (as does my husband) because you just never know when that doctor may stumble across another child with the same thing. I will be following your blog and looking forward to your posts. I, too, feel that wine and coffee are essential elements of life! 🙂
Thank you so much for reading! I have had a crazy month, but hope to get back in the swing of blogging soon 🙂
My comment still won’t show on your latest blog post about having to walk a few extra feet with the whole handicap thing. Your express scripts post disgusted me, and I don’t even work for them, I work for Caremark in Monroeville PA and I take calls all day from people like you. Except they say “I wish our insurance didn’t switch to your company, Express Scripts was so much better. Yet you publicly said that going to Caremark was a saving grace or whatever it is you said. So which is it? None of you get it, some do, but most don’t. And you, mommy, need to post or approve my reply because this is a public blog and people need to know the truth about your fraudulent claims. I will keep bothering you until I get a reply. phasedance@gmx.com
I will cut and paste my reply that I posted under your other comments here too:
I’m very sorry that living my life prevents me from immediately responding to your comments. I don’t get on my blog everyday. Plus, my email and Twitter is also available via the blog. The approval mechanism is to block spam.
To address your issues–every word of my experience is true. Sorry you don’t like it. Caremark has been excellent to me. Yes, you are correct, I have heard from a few families that they have had issues with Caremark. They aren’t perfect. But FOR ME the nightmare ended when I switched. The hours wasted every month stopped. Speaking with people who wouldn’t help me stopped. I’m not saying it’s the fault of the individuals of the phone, but your higher ups haven then set you up to fail.
If someone wants to share their experiences about Caremark, they certainly can. I can’t because it’s not mine. And let me tell you the experience I had with Accredo is prevalent enough that a New York Times writer reached out to me because he was looking into it.
By the way, belittling people who need handicap spaces says far more about you than it does me. Park at the back so my son can get fresh air? You are exactly the kind of person people imagine are answering the phones there. I may add your comment to my blog post.
One of my frustration dealing with your company is that I don’t like to be nasty to the people on the front lines. I understand it’s not necessarily your fault. But that doesn’t make it okay for the company to continually make it difficult to get meds. Your attitude now makes me second guess giving the people on the phone benefit of the doubt.
Okay…It took me a few moments to fully process your psychotic comments. You were so angry, I assumed you worked for Accredo. But clearly on rereading, you work for Caremark. So I gave props to my positive experience at your company, and you flip out. If you hate them so much, sounds like it’s time to send out the resume. And feel free not to belittle the handicapped in the future.
Are you sure you work for CVS and not Accredo? Because this response makes no sense from a CVS employee. I suspect you are making that up.
Umm, some posts don’t merit a reply. Keep on rocking-
LOL! Thanks! 🙂
Hi Rebecca, I don’t know if you’ll see this but I just read a post by a guest blogger from 2012 who has TSC. I also have TSC, I was diagnosed when I was 5. My mom noticed a “rash” on the butterfly of my face & then took me to a few doctors and finally, to a dermatologist who diagnosed me. I’m 34, have graduated college & work in education. No seizures & so far, no internal issues. I stumbled across your blog when researching laser surgery, which I am having next month on the 4th first time since ’97. Thank you for sharing and highlighting experiences of people who have TSC. It’s important for those of us with different experiences with this disease to gain perspective, to hold space for those going through the rough of it and to celebrate the positive things life brings. I hope your son is thriving, staying healthy & seizure free. ❤ Jessica from Washington State.
Hi Jessica! Sorry for the delayed reply but I’m so glad you found the blog and it was helpful. Thank you for sharing your a bit about your experience as well.