1. I’m not honest enough.
I had a blog once that was painfully blunt. It was my outlet for five years when I battled depression and anxiety. That battle actually went on for more like 10 years. Some friends stuck it out. Others found me too aggravating, and I was aggravating. But they can still go to hell. I’m good now and have been for several years. I was delightfully sarcastic and dark in that blog. Or at least I think I was, in my own little world. I didn’t tell family I had it. It’s long gone since the day a disgruntled employee at Journalspace intentionally sabotaged the server, destroying an entire online community. The one and only time I backed it up was two months prior to that fateful day. I wanted to print it once, but it was over 500 pages. Sometimes it’s hard for me to be completely open in this blog because I use it as a forum to raise awareness for Connor. This means family and family friends read it (although as I discovered tonight, my brother hasn’t been, so he can suck it. I pushed him on a cactus once as children and I’m not afraid to do it again bwa haha). As I get more comfortable, I might open up more on a personal level.
Which brings me to the fascinating world of Facebook. Feel free to unfriend me if my unending lobbying about TSC annoys you. Of course, it’s not like those people would be reading this. I have been blown away by the thoughtful, kind words from people that I haven’t seen in years, didn’t know well even then, and sometimes never even met. Especially when some of the people I spent significant amounts of time with at some point in my life have never cared to say a word to me about Connor.
2. The TSC community needs to go balls to the wall.
I’m not in the greatest mood because the last couple of days I’ve been lobbying like crazy to get votes on behalf of the Australian Tuberous Sclerosis Society. They started out well in the lead. Earlier today another group had a 30 vote lead. Now it’s over 100. I’m about sick of the lack of awareness and touting of various opportunities to get funding for TSC. Once again we are faced with a vote where we aren’t even at 2,000 flipping votes. More like 1,600. Just like the Chase Bank competition a few months ago. Yet I’m part of two online communities, one with over 2,000 TSC people and another with over 5,000. Something isn’t clicking here. I’m angry.
3. Life isn’t fair.
Yesterday, one of the children I know with TSC was rushed to the hospital in the midst of a status seizure. If you don’t know, that is a seizure that won’t stop without medical intervention. From what I hear, it can involve being pumped with so much medication to stop it that they have to be in a hospital because they would otherwise die from an overdose. Connor has never had one, but once again, on the list of increased possibilities with TSC, that is one of them. When I was teaching,I would, from time to time, have to be trained on a medication that is inserted into the rectum to stop a seizure. I never had a student have a seizure, but I now know that drug is Diastat and that is what it is for. I used to cringe at the idea, never knowing epilepsy would be a factor in my life. Wouldn’t phase me now, though we don’t have any and I’ve never had to use it. Funny thing is that I think that the last 9 months of my life would make me a most fantastic and understanding teacher. Too bad by the time I left, teaching was 10 percent of the job. Garbage paperwork and filibuster meetings were the other 90.
But I feel bitter because this child has been through enough. He’s never been seizure free for a moment. He’s not even four and already lost a kidney. He’s been through enough. Hey, God. Feel free to cut him a break. Feel free to cut a whole lot of babies a break.
Forget TSC. Do you know how many kids out there have a health problem? You don’t. Not unless yours does. Until then, you don’t know. Forget TSC. What about all the other stuff? Once your eyes are open to one, it’s everywhere. Can you believe there is a little girl out there that was not only born with TSC, but is now battling an unrelated childhood cancer? Really? One rare disease wasn’t enough? Did you know cardiac birth defects are as common as 1 in 100? Can you believe that the physical therapist assigned to Connor has a 3-year-old granddaughter battling cancer as we speak?
People are praying everywhere. But I’ve learned something. Prayer makes the person praying feel better. Don’t get me wrong. I love that people are praying for Connor. He’s had prayers all over the States, Colombia, India and more. Don’t stop. But it gives me this mixed feeling of bitterness and relief. Sure, I want to believe it will make a difference. But I don’t really believe it does. Some prayers get answered. Some don’t. I don’t know that I prefer to believe God is answering some and not others. I’d actually rather believe things are just happening down here. Otherwise, why do some deserve to get answers and others don’t? I’m sick of stupid prayers, too. Do I have the right to call other people’s prayers stupid? Probably not, but if children are sick and/or dying and God is helping you win a stupid ass football game or experience great weather for your fishing trip, I’m gonna be pissed. Is God the reason your wedding went beautifully? No, you got lucky. And if you think God is the reason your centerpieces didn’t wilt and drunk Uncle Jack didn’t embarrass you, you’re a moron. Good luck with the rest of your life thinking God is going to fix all your piddly marriage problems.
I don’t know how people give it all up to God and just believe it is all for a reason. I want there to be something after we die. That’s the only reason I don’t blow it off all together. But while we’re living…what is there? I don’t know.
Related articles
- Children and Epilepsy (everydayhealth.com)
- Seizures While Sleeping (everydayhealth.com)
- A boy and his seizure dog (cnn.com)
Mixed Up Mommy 
I think that sometimes people don’t know what to say, so they don’t say anything. I’ve been afraid of saying the wrong thing or saying too much in difficult situations. A friend once said that silence is so much worse than a genuine “I’m sorry” or something awkward. Even something kind of awful that acknowledges there’s a tough situation is better than nothing. I had not thought of it that way until a friend who went through a miscarriage talked about how people responded or didn’t respond.
That’s true. Sometimes I wonder if I would’ve been the jerk if an old friend of mine had this instead. Maybe I’d have been just as guilty since I always feel awkward.
You’ve a right to feel angry.
And its best to really FEEL it and let it fuel you. But don’t let it run you.
I’ve been with Jackson when he has had status seizures.
It’s maddening.
He was hooked up to machines and tubes and had enough meds in him to fell an elephant. We were life flighted to OCH……
But its surreal……life goes on around you…you hear people in the other rooms talking and going about life and you want to STOP EVERYTHING and sy:
HEY! There is a CHILD here not making it……..
What do you do?
you keep it together because you HAVE to.
❤
I have had/am having the same justifiable rants as you! No need to apologize or tone it down around me. I know exactly how you feel! For about 10 years Bethany had to have 3-5 doses of 20mgs. diastat (Beth calls it the Butt medicine!) 2 or 3 days a week and sometimes that didn’t even help. After 12 years we finally got the seizures to stop but have been greatly disappointed that the med. side effects have not allowed her quality of life to get any better! Nothing has really changed. the feelings she gets from the medications are so similar to how the seizures made her feel that she still thinks she is having seizures. The doctors all try to blame it on her behavior issues! it’s maddening and I can do nothing about it!
PS. I try to sound more positive and full of faith on my blog so as not to freak people out too. And also to try to convince myself that God must have a reason for my and other children to go through such suffering. I get very ticked off at people’s pettiness.