Life has been busy, as usual. It has been a hard few months helping Alyssa recover from surgery. It took a long time, but she is finally settling back in to the school routine. She is still going a couple of hours late each day, but last week she didn't once refuse to go to school. This is huge! We have had so many tears and tantrums trying to get her back. We finally ended up setting up an IEP for her because of her medical situation. This allows her to be able to work in the special ed room in the afternoons when she is getting a little overwhelmed or tired and provides us with more flexibility in coming up with things that make her feel more comfortable and safe. Her school has been really great at working with us to help her feel safe and comfortable. Singing has really become therapeutic for her. She loves to sing and has such a beautiful voice and it seems to help her stay calm and happy. The office staff at school now look forward to her singing for them each morning. She loves to practice what song she will be singing to them as we drive to school. It has been good for her self esteem and the office staff love it! Jeff wrote a beautiful song for our ward's road show last spring and he and Alyssa went to a recording studio a few weeks ago to record it. They had so much fun and I love listening to them sing together! I'll try and figure out how to add their song to the blog so that everyone can enjoy it!
Unfortunately, her seizures are still plentiful. It appears that the surgery did not improve things much. We have all been discouraged, but I am still glad that we tried. We at least know that we have done everything that we possibly can do right now to help her. She is still having at least 8 or more seizures a day. Most of them are brief. Less than 10 seconds. However, they often hit so quickly that she falls if she is standing or sitting on a stool. Several times a week she has one of her bigger seizures. They last close to a minute and she is unable to use her right side for 15-30 minutes afterwards. These are hard on all of us. She always remains conscious so she can feel every shake and convulsion. They are very painful and she is often in tears when they are finally over. I can't imagine how hard it must be for her. To have no control over your body as it postures and convulses. To know that she can't do anything but wait for that time to pass. It must be terrifying. Oh how I wish that I could just take it away from her!
She is now having an aura before her seizures. This is new. It is a feeling that she gets in her right arm. It is good and bad. It is good because she is better able to know that a seizure is coming, but bad because she can feel that way hours before the seizure comes. Following a seizure, she feels good for a few minutes, but then the "seizury" feeling returns again. Basically, she feels like she is going to be having a seizure all day. If the feeling is strong, her arm feels funny enough that it becomes difficult for her to write, which makes school more challenging. So, we are trying to come up with a plan on how to create as normal a life as we can with seizures. I have to admit that I have been feeling a little trapped in our current situation. Alyssa still sleeps with me, Jeff and I hardly have time to talk to each other alone, we are constantly monitoring Alyssa's safety but also trying to let her be a kid, keeping up with Jared's needs and therapy, and keeping up with Tyler's emotional needs and busy life. It is crazy, but I know that we need to try to get out of survival mode. I'm just not sure how to do that. Somehow we'll figure it out. I know that there are so many people who have more difficult challenges, but I told my mom the other day that even though I know that things could be worse, it doesn't take away the fact that things are hard right now. But, I also know that we can do hard things and that we are given the strength we need to accomplish those things. When I was 11 years old, my primary teacher had us memorize 1 Nephi 3:7.
Unfortunately, her seizures are still plentiful. It appears that the surgery did not improve things much. We have all been discouraged, but I am still glad that we tried. We at least know that we have done everything that we possibly can do right now to help her. She is still having at least 8 or more seizures a day. Most of them are brief. Less than 10 seconds. However, they often hit so quickly that she falls if she is standing or sitting on a stool. Several times a week she has one of her bigger seizures. They last close to a minute and she is unable to use her right side for 15-30 minutes afterwards. These are hard on all of us. She always remains conscious so she can feel every shake and convulsion. They are very painful and she is often in tears when they are finally over. I can't imagine how hard it must be for her. To have no control over your body as it postures and convulses. To know that she can't do anything but wait for that time to pass. It must be terrifying. Oh how I wish that I could just take it away from her!
She is now having an aura before her seizures. This is new. It is a feeling that she gets in her right arm. It is good and bad. It is good because she is better able to know that a seizure is coming, but bad because she can feel that way hours before the seizure comes. Following a seizure, she feels good for a few minutes, but then the "seizury" feeling returns again. Basically, she feels like she is going to be having a seizure all day. If the feeling is strong, her arm feels funny enough that it becomes difficult for her to write, which makes school more challenging. So, we are trying to come up with a plan on how to create as normal a life as we can with seizures. I have to admit that I have been feeling a little trapped in our current situation. Alyssa still sleeps with me, Jeff and I hardly have time to talk to each other alone, we are constantly monitoring Alyssa's safety but also trying to let her be a kid, keeping up with Jared's needs and therapy, and keeping up with Tyler's emotional needs and busy life. It is crazy, but I know that we need to try to get out of survival mode. I'm just not sure how to do that. Somehow we'll figure it out. I know that there are so many people who have more difficult challenges, but I told my mom the other day that even though I know that things could be worse, it doesn't take away the fact that things are hard right now. But, I also know that we can do hard things and that we are given the strength we need to accomplish those things. When I was 11 years old, my primary teacher had us memorize 1 Nephi 3:7.
7 And it came to pass that I, Nephi, said unto my father: I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing which he commandeth them.
I have never forgotten that scripture and the older I get, the more meaningful it has become. Life on earth is not easy. It is not meant to be easy. We are here to learn and grow and we do this best when we are challenged. But, we are not alone! I know that if I do all that I can and never give up, that the Lord will be there to help me. And so we continue on with faith. Trying to teach our children that even though things are hard, they are strong enough to accomplish anything with the help of their Heavenly Father.
1 comment:
I love your comment that even though things could be worse, it doesn't take away the fact that things are hard right now. Sometimes I feel so guilty about my life when I feel bad about our situations and know that things could be worse and I shouldn't feel that way. But it is okay to feel that way because things are hard and we can grieve. Thanks so much for your beautiful blog and I love reading about you guys and what is going on.
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