My husband went to work today, kids are at school, and so I am here alone left to think about all kinds of scary stuff. I have some tests coming up.. lots of things on my mind. My anxiety, and the intrusive thoughts that come with it, lead my brain into dark places I should try to avoid.
Over the weekend, knowing my mood, my husband took me to some pretty places because he knows how much I love to take photos. Plus it keeps my mind occupied. Even that's becoming a chore as much as I love to practice with my camera. I have bad balance, and so trying to focus the camera in on my subject isn't so easy anymore. The horizon line is half your balance, if you can't see it, it's difficult to stay upright. I fall to the side, or back, and do not feel it or know I am even falling, until my subject is no longer on the screen of my camera. It sucks, but you find ways around it, and learn to compensate. I've been using the hineypod, You just sit right down, in the dirt with the spiders and slugs, and you don't have to worry about falling :) Whatever works right? I did manage some good shots, it's really pretty this time of year.
I suppose it's not my fault. My Mom died when she was 36 years old from Neurofibromatosis Type 2 (or NF2 for short). It's a central nervous system disorder that causes tumors to grow on the brain and spine. She had an inoperable tumor in the part of the brain that controls breathing, and she ultimately died from heart failure because her breathing became so labored. I was 9 years old.
All I ever wanted to do was be a Mom. I wanted to do all the things with my kids that my mom couldn't do with me. Mom was paralyzed. She never held my hand and walked. She NEVER got to visit my school or my teachers. No field trips and no class parties. I hated all the other kids whose Moms were there. And when it was time for school clothes shopping, all the girls talked about how their moms took them to the mall.. I got to sit on my mom's bed next to her with the JC Penny Book. That's how we shopped.
After she died, Dad married Ursula The Sea Witch. Phase 2 of my childhood was more rotten then phase 1. I just lived for the day, I could grow up, move out, and be a Mommy. I was going to do all the things with my kids that I missed out on with my own Mom.
Slap in the face What Mom had, was genetic. And I had it too. They told me, never to have kids. That's like telling someone, they're not allowed to breath anymore. Ignorant. That's what I was. "Nothing will happen to me or my babies, I believe in God, he won't do this to me twice:"
And so, my first born came along, in 2001. When she was 14 months old they found a meningioma tumor at C-5, 6 and 7, that was compressing my cord, and if I didn't get it taken out, I'd have 5 years to live. Removing it came along with it's own demons, there was a 50 percent chance, I'd wake up a quad. That day, that I got that news, I had my very first full blown, Anxiety attack. The only thing I ever lived for, was in jeopardy. My daughter was 14 months old. We still had so much to do, we were just starting, I LOVED LOVED being her Mommy, and I wasn't about to let that be taken away.
WILL ~ I had a cervical laminectomy and they removed that tumor.. took em 6 1/2 hours. But I woke up in recovery, wiggled my toe, and went back to sleep. I spent 4 days in the hospital and went home. HOME. No rehab. I walked fine, I had full range of motion of my neck, and I recovered just fine, except for post op pain, which I still deal with plus now there is arthritis there, and where there was 1 tumor, now there are 3.
Today, all together, I have 5 brain tumors, 19 spinal cord tumors, 1 very large peripheral tumor in my leg, I am blind in one eye, I have balance problems, I suffer from headaches, and anxiety.
In 2005, we had our second child against everyone's advice in the whole medical field. I had a hard time finding a doctor who would get near me, and I was considered high risk.
Now I had a daughter, AND a son. And in 2007, I married their dad. And we lived happily ever after. EXCEPT I am haunted by these freakin tumors. I am in tremendous pain daily, but I do stay as involved with my children as I possibly can. I have been room mother every year since my daughter was in kindergarten, and my son. For 2 years, I was room mother for BOTH of them. Went to ALL the parties, and the field trips.
One of my best days, my daughter said to me, "Mom, there is store in the mall, it's called Justice, and all my friends shop there, can we go there Mom?" Bucket list. I waited for that day. I was robbed of shopping with my Mom, so I couldn't WAIT to shop with my daughter. I was so happy she said that, I almost cried.
Another thing she said that made me cry, every night she comes home from school, and she tells me all about who is dating who, and who broke up, and who isn't friends anymore... bla bla... 5th grade drama. BUT she then said, "UM Mom? Since your mom died when you were 9, who did you tell all this stuff to?" Victory. She gets it. She knows I am her mother, and will listen to her, she knows she can talk to me, and no matter how dumb or pointless these stories are to me, I listen, because they are her life and what's important to her. That was a profound statement she made. It means I am doing my job, and I'm doing well.
So, the sun just came out, I ranted.. and now I do feel better. Is that what blogging is for?
Happy Monday
No comments:
Post a Comment