Now I remember why I started this blog over 4 years ago … to rant and rave and get things off my chest. Many of you probably feel better about your lives and pity mine, which I honestly don’t mind and you should not feel guilty about thinking, “glad I don’t have to go through that.”
Last week was my birthday and I cried a lot … “It’s my birthday and I can cry if I want to” taken literally. As one of my friends said to me last week, I am in mourning. It’s nothing new, but periodically, I realize that our lives is not and will never be normal. This Year of the Dragon marks my 3rd round. I look back at the last year of the dragon in 2000 and cannot believe that my life was so utterly different. So normal. Therefore, I’m mourning the loss of a normal life.
I am not regretful, resentful, or ungrateful. To the contrary! Jennah has been the biggest gift to me. I never ever wish that she is any different from how she is. Of course, I want her to reach her fullest potential and I spend every waking (and sleeping!) hour trying to help her achieve that, but I never think, “oh how I wish she can walk, talk, and see”, and yes, I highly resent those people who say just that. She is who she is. If she could see, she wouldn’t be the same Jennah with the wandering eyes and keen sense of hearing. She is blessed with not having to see or understand some of the horrid visions we all have to endure. She shouldn’t walk … do angels walk? She’ll have perpetually clean, baby-soft feet that I can kiss all I want.
Everything was finally settling down and falling into place. I got my husband and home back in order and Jennah was overcoming the withdrawal symptoms from weaning off the phenobarb. She has been so much more aware and starting to sit up … we were getting comfortable. But then the seizures came back. It was really only a few seizures for just a few days, but it was like a slap in the face. A reminder that our lives cannot be normal and we shouldn’t forget it. It made me realize that we can never let our guard down. We’ve only been doing this for 4 years …this is going to be a long, long road.
Our house is littered by crazy equipment and devices that has become part of our décor … there’s a floor sitter, the jungle gym that I built out of PVC pipes, and a wedge that hubby had custom-made in Dubai in the great room; a stander in the dining room, and feeding supplies with dozens of can of Pediasure in the pantry.
So yes, our lives are a bit complicated and it takes some extra effort to get through each day. Yet I feel like I could probably do so much more if I didn’t mope around and act so selfish. Do I really need any “me” time? Do I really need to sleep, eat, or shower? What about my other two children? I shuttle them around and tell them what to do, but I never sit down and play with them. But then again, do I really have a right to complain when there are so many others out there who are cold and homeless, or in pain fighting cancer? No, I shouldn’t complain … I should be thankful.
BTW, I think one of the worse things anybody can really say to me once they learn that Jennah is disabled is, “oh, I’m sorry.” WTF??!! That makes me boil. What is there to be sorry about? I’m certainly not sorry to have a child with special needs and it’s not like anybody did anything wrong … she is not a FAULT for goodness sake! No … you say, “what a blessing”, or “you’re so lucky.” If there’s anything to be sorry about, it’s that I sometimes (or often) have a bad day, or become weak. Then it’s OK to say, “sorry you’re having a sh!tty day …”