I am having a really hard time being home right now!
Half way on the drive home yesterday from Children's Mercy (in the pouring-I-can't-see-a-thing-rain), it dawned on me that I was about to be right back in the place where Jocelyn had her first of the three seizures ... our living room floor ... were we spend the majority of our time.
As we passed two nasty wrecks along the way with Justin talking about I don't know what, because I couldn't seem to focus, and as Jocelyn was giggling on and off while watching Sesame Street in the back of the van ... I seemed kind of lost in my own thoughts. As I gazed out the window I could feel the anxiety creeping in and my heart progressively started to pound harder and harder. I told myself "It's not going to be a big deal ... don't worry about it" and then the thoughts of "Watch yourself just totally flip out when you get home!" came right afterwards. Sometimes your brain can make you feel like you might be going borderline crazy.
Maybe a little PTSD? Who knows ...
Last night was suppose to be an early night to bed and a morning of sleeping-in but neither happened. I had a hard time falling asleep and then staying asleep because I kept thinking about Jocelyn sleeping alone in her room and there being a chance she could have a seizure and I wouldn't know about it. When she had all three of her seizures, she didn't make not even one little noise, nothing, zilch ... silence! What if she was having one in the middle of night and stopped breathing again and it went on forever? I know it wouldn't go on "forever" but that is what your mind tells you.
As I would lay in bed, or the million times I went into her room last night, I would remind myself that she had the seizures because of the shunt failure. No one really knows that for sure though, and now that she's had them again, she will be even more susceptible. Maybe I'll have a little bit more piece of mind once we get an EEG?
Probably not.
Perhaps I'm having a harder time with this unexpected surprise of events because in the past I am the one that caught her shunt failures before they were "really bad" and even though the last two failures were a surprise, I wasn't totally caught off guard. Not to mention the last shunt failures happened more than two years ago so I'm sure I've started to let my guard down, but who can always live with such hypervigilance?
And not only that, but having your child be on their 4th VP shunt in only 2 1/2 years makes you wonder how many more times she, and we, can go through this? If we keep these types of statistics up, she'll have had 16 shunts by the time she's 10!!!
Maybe it's the fact that the other shunt failures, although terrible and stressful in their own right, weren't as traumatic for me as this one was. With the other failures, I didn't have to watch our daughter's tiny body convulse uncontrollably! I'm even finding myself feeling anxious everytime I feed her since it started during her feeding followed by vomiting.
I know I'm a strong person and "this too shall pass."
Have I ever told you how much I HATE CLICHE SAYINGS! Especially ones like "Everything happens for a reason" or "If God brought you to it, He will see you through it" or "What doesn't kill you makes you stronger." Spare me all those annoying cliches that people think will make you feel better but in fact only infuriate you. I know that sometimes people say things like this because it's hard to know what to say in situations like these ... just venting.
But I do know that all of this really will "pass," and that it is normal to feel "on edge" or scared that this nightmare will happen again. It may very well happen again ... these are the cards we've been dealt ... but in this moment, things don't feel any easier. I think that now that I've experienced this horrid world of seizures, I will be more prepared for when and if it happens again.
My heart is hurting which again is unexpected because I've got my smiling, happy girl right next to me. I guess fear is paralyzing me today with thoughts of "you could lose her at anytime" which is trying to rob me of my joy. The Devil can be stronger than we think, but I refuse to let him destroy me ... or us!
He.Will.Not.Win!
As I read your post, I remember when my son was 3 and had a seizure. It probably only lasted a minute or two, but it seemed like forever. After 12 years, I can still remember how scared I was! He didn't remember a thing. He just thought he had it made, because they kept giving him Popsicles. I just can't imagine! Your whole family is on my mind and in my prayers. Tina
ReplyDeleteI'm glad you posted this. I don't worry about seizures for myself but my service dog had 2 a few years back. Its a little different for dogs then people of course. But I was just as scared for months after. I convinced myself that if I did nothing like I did on those days she wouldn't have anymore. It turned out that she is allergic to a certain class of antibiotics. She is not given those anymore and it seems to have resolved the problem. Living in heightened state of alert like that exhausts the body and the mind. I worried obsessively about Nikki for quite a while and then one day I realized that I couldn't control that and when I started to relax so did she. I understand how you feel at least a little but remember that Jocelyn will be able to pick up on your fears and feed on them. Kids are amazing that way. Plus she's not scared because as far as she knows she's just fine. I know this goofy but when you take Joce for her eeg in all seriousness REMIND the dr that she has CP... our brain waves are different then you "normals" When I was 8 they thought I had one and my mom and dad and I went through similar hell. (jocelyn is to young to be afraid of the next one maybe coming thank goodness) I wasn't. When it came time for my EEG they misread it because my brainwaves look different because of the damage to my brain from CP just like Joce!! So they diagnosed me with seizures and medicated me for something that I did not have. If hers are from her shunt then I doubt she'll need meds so just keep that in mind so they don't misread hers too. Thinking of you all with love and prayers every day
ReplyDeleteI am sorry that you are feeling this way. :(
ReplyDeleteI wish I had a magic wand to wave and make it all better. (And if I did, I would have done that like, ohhh, about 2 1/2 years ago...) Just try to remember that you and Justin are doing the best you can every single day. And you are normal to "let your guard down." You would go bat-shit-crazy with worry if you thought about her shunt failing every day. Just imagine how much better off Jocie is having a mom that is a nurse - and a very in-tune nurse at that!
And as far as cliches, I hear you. I know it's no where close to your situation, but with Bailey's cleft, if one more f-ing person told me to just "be grateful that it wasn't something worse", I was going to cut them!! How is that helpful? And I realize that some of those sayings really do have some truth to them, but it just seems like something people say when they are discounting your feelings. And if I have ever told you any of those bullshit sayings, I am apologizing for them now!
Hang in there. Good moments - where you can laugh and forget about the worry - are ahead. I promise. Thinking of you guys always.