I feel like I should come with a effing disclaimer. I am incapable of giving anything my full attention anymore. I'm always waiting for the next bad thing to happen to Connor. I had a bad feeling that something was coming the way the past few days have been going. Connor has been pretty unhappy. Not to mention, the worsening of symptoms. He twitches so much now...he constantly drools. Everything pisses him off. You can look at him and it will cause a major meltdown. So why should today be any different? Tonight I had my first World Authors class. ( I was already freaking...that syllabus was nuts...wtf !?!) But anyway, I went as usual and it wasn't as bad as I thought it was. Until I get the text: "Connor had a seizure." That was it for me, I packed my shit and took off like I had eaten some bad chinese... I went about 80 mph up until I got to base (Yes, I know, illegal, spare me). It was not a big seizure, but it was enough to scare Chris. But then again, who am I kidding? They all scare him. He has no clue how to handle it except to have me handle it. Understandble. Sometimes men can seem as if they are tough but are like little school girls when it comes to their child being hurt or sick. I get it, I'm terrified too. I push forward because I have to. Who else will do it? Connor is fine now, he is tucked into our bed so I can watch him breathe all night. Honestly, I have been watching them all breathe since Connor's first seizure last May. I'm up twice an hour going into their rooms to make sure they are still alive... I should probably seek therapy for that, but it comforts me to know that everyone is tucked in, safe and breathing. The most important thing in life is their health and happiness.
Now let's talk about where I am lacking. I am a walking disaster. You can tell me something, I will forget 5 minutes later. If I met you recently, I have not the slightest fucking clue what your name is, so when you see me in the store and say hello and I look at you like a deer in headlights, I'm not drunk, I'm just losing it. I am struggling through school, my GPA sucks ass. I getting A's, now I'm at C's. I put my businesses on hold for awhile, well, let's be honest about that too, I just gave that shit up. I would love to do the same with school but then what? It has to be done. How will I ever be able to make my dreams real. Today is one of those days that I am angry. I feel sometimes like I'm losing myself. I try to keep a good sense of humor about things and just keep moving but at the moment. I'm fucking furious. Seriously...ayfkm with this? What next? They say God only gives you what you can handle, so if God were reading this, I'd like to make it quite clear that my white flag has been up for months. I mean geez, I walked out of the house this morning without a bra, mismatched socks and morning breath. Who does that? A hot mess that's who.
But as I'm writing this I remember, I am not the one who lives every day in pain. Connor does. I'm not the one who is going through this. He is. My favorite advice to give to people (I'm dead serious, ask them) Is "Suck it up and stop being such a little bitch." It is a small dose of reality that will make you giggle a bit. I'm taking my own advice tonight.
Been there. My Chiari kid is 17, and I had to take a decade long hiatus from...well...my life. I just started school again myself and I realized the other day that I'm just waiting for something to happen again.
ReplyDeleteWe have been pretty lucky that Topamax has taken care of the seizures, but God they are scary.
Are you guys seeing a super Chiari specialist? I hope so! We got some bad, bad advice and treatment from the chief of neurosurgery at Boston Childrens. He's a great neurosurgeon...if you don't have Chiari.
Anyhow, I wanted to let you know that you are definitely not alone, and many of us are out here pulling for both you and Connor.
Namaste
Namaste-
ReplyDeleteYes, Connor is being seen at Duke here in NC. So far, we have been very happy with his care.
How's your Chiari kid doing?
-Jodi
I just caught up in all going on with you and Connor. We have been through yet another rollar coaster with our chiari baby. Confirmed that he is having seizures along with everything else going on. Since I heard those words "chiari malformation" on August 31, 2012 our world has turned upside down so many times. I left you a message on another post but I wanted to reach out again. I know exactly what you are saying. You are in survival mode. If I hear one more person telling me to be strong I may loose my mind. It is ok to fall apart, it is ok to be numb, it is ok to feel empty and like you can't take another breath. This is your baby. You can't fix him. You can't make it go away. Utter helplessness! Caleb was decompressed on 10/10/12. His was severe with no cf flow. We had his f/u MRI and it was the most gorgeous thing I have ever seen. It shrunk to be called "normal". Of course he is not cured but his life has changed. You take a few steps forward and some back. That same visit he was diagnosed with seizures which has been causing him to collapse. We just keep adding to the diagnoses, but that doesn't change how amazing they are! All you can do is keep surviving some days you can smile without forcing it and others you are lucky to remember to feed yourself. Surgery is not for everyone and following your gut is ALWAYS the right step. So glad that he is not a candidate for surgery. I don't wish that journey on anyone. If you ever need anything email me!
ReplyDeletermaaske@hotmail.com