I wanted to share a few of those week’s special quotes – one left me speechless and one that broke my heart.
My 10-year-old’s AVM bled in 2009. She’s required two additional craniotomies. Her right temporal lobe is gone. I believe she’s considered legally blind.
She came home from school last week and told me that her science class was studying the left and right sides of the brain. She said she must be right-brained since she’s creative (apparently to her, the left-brained people are brainiacs). I had no idea what to say to a young lady with a giant hole in the right side of her brain. I wanted to say “I hope not since a big chunk of the right side of your brain is gone.” I was sad that she doesn’t think she can be smart.
Tonight she told me that she hates what happened to her brain. I nearly cried. I said that I hated it too. She said she wished she was normal. I said she is normal. Everybody has his or her own normal.
She wants to know why she gets so mad. She wants to know why school is so hard. It breaks my heart when she asks about things that are caused by her brain injury. I know there are lots of logical answers, but it’s an awful lot for a little girl to absorb.
Hi Tina. Helen Keller was both deaf and blind. I imagine her mother’s heart was broken a few times as well.In fact for medical and cosmetic reasons Helen Keller’s own eyeballs were replaced with glass ones! Helen Keller faced overwhelming odds but became the first deaf blind person to obtain a college degree! Even after almost 45 years after her death she still influences millions every year. Not too shabby for someone who most definitely was not physically normal.
Feel free to vent on here any time…that is one of the reason’s this site exists!
I am glad to tell you what I did and felt like post craniotomy. But it was 1959, and things were very different. I was 9 when the AVM burst. I believe it was in mostly the right occipital lobe and may have extended to the parietal. I am legally blind, with a condition call homonymous hemianopsia. (No vision in the left field in both eyes.) The surgery they did was called exploratory brain surgery. I believe they thought I had cancer and removed more than would be removed today. I have a big hole in the right side of my brain, too, like our daughter does. I spent most of my school years thinking I was dumb. Only in the past 30 years have I realized how intelligent I am. I worked as a paralegal for many years for a state government, and I did well. I was slower than some, but I was good at what I did. I do remember a lot about the ordeal.
I remember being angry at the other kids when they beat me (which was a lot) at any games, especially games that involved seeing??????? I was a very lousy loser. I was never allowed to go ice skating again, since my family thought that was what caused the "Blood clot" when I fell on the ice. I do not remember ever falling on my head on the ice. On the other hand, I was allowed to ride a bicycle with no questions asked, and to this day I can still ride. Go figure!!!
I am who I am today for a lot of reasons, and I do sometimes mourn the person I may have been if not for the AVM. I remember a very happy childhood, and very unhappy teenage years. I felt different because I was. No one could see the differences, and sometimes that can be a problem because expectations from teachers and all were the same as they were for anyone else. Teachers in junior and senior high did not know I had any problems. No one told them and no one talked about it back then.
Your child has you and you sound like a wonderful advocate for her. Talk to her all the time about differences. We are all different, but she and I are and were special kids. Her friends are lucky to know her, and I feel she will become a fine adult. Just keep telling her all the truths you know about her brain and her self and how wonderful she is. When I remember anything else helpful, I will write.
It’s reassuring to know there can be a successful career. After her surgeries, it is tough to tell. Doctors have already told us she will never be able to live independently. This all started in 2009, Rose said her head hurt. She was unconscious within 30 minutes and in surgery about 3 hours later. Neurosurgeon said she had a 2 percent chance of survival in the days after surgery.
She also has the homonymous hemianopsia. She is very competitive and not very good at losing :-). She does ride her bike, swim and loves being active (sounds like you).
Right now, it’s most important to her to be like other kids – being different is bad when you’re 10
I also was complaining of headaches, spots in my eyes and air noise in my ear. My mother did not believe me, my grandmother interfered and got me to an eye doctor. He saw a reason to send me to a neurosurgeon, but a few days later I had a huge seizure, and was in a coma for 4 days. When I came to, I was real mad I was in some sort of crib. I was not expected to be alive through the exploratory craniotomy; or, if so, possibly be a vegetable.
To be different is the worst thing for a ten year old, and I was bald when I went back to school. The Catholic School nuns protected me most of the time from the jeers from the boys, but they couldn't help me all the time.
I was told that "you lost some vision, but it will come back" but it was never explained to me, and it never came back. I went about life like everyone else was seeing just like I see. Not. Now most states have laws about hemianoptics and driving.
I don't know what they thought I was going to be capable of back then, whether they talked about it or not. (by they I mean mom, dad, grandmother and aunt (only one still living). My dad worked all the time and was deaf. I have to tell you he was my greatest advocate but no one listened to his opinions.) As girls there was not a whole lot expected except to get married and have kids. I don't believe they ever saw any of the girls having to live independently. Of course I can live alone. I have for many years, and my husband died 15 years ago. I have a great son who ives in Virginia.
Doctors say lots of good things, and then they say other things about the future that it turns out they were wrong about. You don't know how she will be in say 10 years. If it's the best she can be, than that is what you want, anyway; if she never had the AVM, you would still want her to be the best that she can be.
Hang in beans
One more thought. You should be taking her to visual therapy at a neuro optometrist. No one knew what was wrong with my eyes later on when I would go to an eye doctor. I had no visual therapy, until about 15 years ago. It helped me learn to scan. I don't fall as much as I used to. She being so young could get a lot from it.
Great advice from beansy. I also have homonymous hemianopsia. I saw a low vision specialist (the neuro-opthalmologist was of no help) who was wonderful. I now have a pair of prism glasses which allow me to read. That was something that was nearly impossible for me. This doctor also taught me better ways to scan to compensate for the lack of vision. I more than likely will never drive again but, I have lots of help. Your daughter has youth on her side. Vision therapy will do wonders for her. I know it's hard to be different at 10. It can also be hard at 40! I prefer to think of myself as remarkable. There are a lot of people who don't survive what we have survived. That makes us pretty darn special. Give her a hug from me!
You are remarkable Trish, as are many of us. Someone told me once that they admired me for all I have had to deal with. It surprised me to hear that because I never thought positively about myself. It is very important to have someone tell you that, and to be encouraging. My own mother did not do that. She called me a “bull in a china shop” because I had many incidents of walking into things, spilling stuff and always losing my belongings.
I could describe my daughter the same way – never met a drink she couldn’t spill. But anybody who’s gone through what you guys have is incredibly strong and brave. I tell my daughter all the time.
Beansy you have helped me in more ways than you can imagine. It was because of you that I actually had a name for our condition. That, in itself, was HUGE! What you've accomplished in spite of all that you've had to endure is nothing but remarkable!!
I'm so inspired with all the energy and Love for you and your precious daughter! Your daughter persevered and beat the odds the doctors had following here surgery and I have no doubt that, with you as her advocate, she will continue to fight her way thru this battle and her light will continue to get brighter and brighter and she will emerge even more amazing and stronger than she is now.
You and her are both Blessed and will be a Blessing to many thru this!
