Many years ago, in a previous life, I traveled California from San Francisco to San Simeon. I camped in Big Sur and in Yosemite. Big Sur, Monterey, Carmel are beautiful places. The ocean is indescribable and the life is vibrant in my memory. Yosemite is also beautiful. Huge enough that you realize how very small you are. But my memory of it is "rocks". Beautiful rocks, mind you, but rocks, jagged and layered and grey and cold. I loved both areas, but I loved Big Sur, Monterey and Carmel so much more. Those place felt alive to me, the roaring sea, the artsy restaurants and stores, the seals, the people. It was colorful both in nature and in culture. I can close my eyes and return there very easily.
Lately I feel like I've been in Yosemite. Things have been very "clinical" with regards to Kellyanne and I have been in a cold, grey place. Jagged and hard. I don't like that side of me. I like my vibrant side. My colorful, zesty, flowing side. I'm not sure where it went. I know it's there, I just have to be patient for it to return.
Our visit to Hopkins was brief and to the point. In a nutshell Kellyanne's EEG is "a mess" and needs to be "cleaned up". I asked questions, but got very few answers as the Dr. wants to have the video EEG done and go from there. The few questions she did answer she was painfully honest!
KA is scheduled to go to Hopkins from 3/12-3/15. We will be on the Epilepsy Monitoring Unit where she will be hooked up with EEG electrodes and videotaped. That's all I know at this point. They sent a DVD about the EMU that we are to watch before going, but we haven't done that yet. Maybe that will be our Friday night entertainment : )
Since being seen at Hopkins we have had to add a new medication to her regimen. Monday was not a good day for her. We are waiting to see how this new med helps/or doesn't. It's just a waiting game. Now we ask ourselves with regard to her behavior: normal? seizure? medication? Who knows????????? But it makes me tired.
I don't want to close on a negative note. Michael is doing well in Providence. He will be home for Spring Break in 3 weeks! Eilis turned 15!!!!!!!yesterday and is such a beautiful person. Erin is becoming more confident in herself and always makes me smile. Kellyanne loves her new 'book basket' and loves to read to me before bed, and Michael (husband) works endless hours, helps with the house and the kids and never complains. I don't know what my problem is......life is good in the Hagan home!
Friday, February 24, 2012
Friday, February 10, 2012
Ouch!
So yesterday, being Thursday, Kellyanne was supposed to go to her 2nd class at The Little Gym. We got one of those nice email reminders that they wanted her back, her name, after all was written right there, a reminder to KELLYANNE that they were excited to see her again. Okay, yes, I know it's the standard email they send to everyone who had been to a trial class, but still, there it was.
We had spoken to the owner the day before, a wonderful man, who explained that he was not able to secure a shadow for Kellyanne and that we would have to wait until he came up with someone or a plan to fit her in....or something to that effect. I get it, I really do. But it still doesn't take the pain away that my child was turned away because she didn't "fit in". I'm not faulting the business. They are working hard to make accommodations for Kellyanne, but the pit in my stomach was there on Wednesday night. Kellyanne had talked about her gymnastics class, we bought her a gymnastics mat last weekend (thankfully off Craigs List) so she could practice forward rolls and the like, we used it as a carrot for "big girl" behavior......but she couldn't go last night and it made me sad. And then to add insult to injury, this morning when I opened my email there was the note from The Little Gym telling KELLYANNE how much they missed her - again - a standard email that goes out to all who go to a trial class and then don't return....but, OUCH! That hurt!
We had spoken to the owner the day before, a wonderful man, who explained that he was not able to secure a shadow for Kellyanne and that we would have to wait until he came up with someone or a plan to fit her in....or something to that effect. I get it, I really do. But it still doesn't take the pain away that my child was turned away because she didn't "fit in". I'm not faulting the business. They are working hard to make accommodations for Kellyanne, but the pit in my stomach was there on Wednesday night. Kellyanne had talked about her gymnastics class, we bought her a gymnastics mat last weekend (thankfully off Craigs List) so she could practice forward rolls and the like, we used it as a carrot for "big girl" behavior......but she couldn't go last night and it made me sad. And then to add insult to injury, this morning when I opened my email there was the note from The Little Gym telling KELLYANNE how much they missed her - again - a standard email that goes out to all who go to a trial class and then don't return....but, OUCH! That hurt!
Friday, February 3, 2012
Who's Different?
Finally, a chance to sit, down, collect my thoughts and share them with whoever wants to read them.
Last week I got a call from Kellyanne's school with a description of the behavior that makes us question, "is it or is it not a seizure". Probably, yes. I went to observe her, even though she was back to "normal", to see if there were some lingering effects that would give me a clue as to what had happened. Not really much to see. Just a little girl in the library checking out her books. We are so fortunate to have the relationship that we do with her teachers and that we live so close to the school that I can pop in and observe for myself. It was the end of the day so she chose to ride home with me instead of the bus. When we got home she had that glaze in her eyes that made me want to take her temperature, Sure enough 101.4 - that was enough to explain what happened at school. whether it was the fever or a seizure one can't know, but it did keep her home from school for the next 2 days.
Over the weekend, Michael (husband, not son) participated in the Polar Bear Plunge to benefit Special Olympics. It was a beautiful day for us onlookers, obviously cold water for the plungers. It was amazing to see so many thousands of people doing something as crazy as jumping into the freezing cold bay - and raising so much $$ for such a great cause. We hope to get Kellyanne involved in Special Olympics soon.
Last night Kellyanne had her first gymnastics class at The Little Gym. As Michael and I watched with an equal mix of nervousness and pride, we were amazed by the staff, who helped her do the things the other children were doing. Kellyanne is very cautious, so sometimes it is necessary to give her that little push and say you can do it.
I of course was holding my breath the whole time, praying that she would follow the directions, wait in line and "fit in". She did a pretty good job : ) About 1/2 way through the class you could see the other kids look at her and realize, 'there's something different about this kid'. That's when I want to step in and say "You're right, there is something different, let me explain why she is different". I think when you can recognize the difference and speak openly about it, educate and answer questions, kids then stop thinking about it. It's like "oh, okay" and they move on. When we leave them to wonder, "why does she talk funny, run funny, screech, etc" we leave them hanging to their own imaginations and that of their friends, where they concoct all sorts of ideas, which are innocently ignorant. They just don't know. I welcome questions. I welcome the opportunity for parents and children alike to ask about Kellyanne. I like to share how she is like them and not like them. I am not offended by honest curiosity. I am offended by rude comments, stares, eye rolling and the like. Luckily, Kellyanne is oblivious to the fact that she is different, so maybe that's why I feel the way I do. We consider the fact that Kellyanne doesn't know she's different, a true blessing. She will be spared the pain that my other 3 children have endured when they "didn't fit in, were ridiculed because of their differences, made fun of for who knows why....." Now those people, I just wanted to SLAP! Sorry.
Last week I got a call from Kellyanne's school with a description of the behavior that makes us question, "is it or is it not a seizure". Probably, yes. I went to observe her, even though she was back to "normal", to see if there were some lingering effects that would give me a clue as to what had happened. Not really much to see. Just a little girl in the library checking out her books. We are so fortunate to have the relationship that we do with her teachers and that we live so close to the school that I can pop in and observe for myself. It was the end of the day so she chose to ride home with me instead of the bus. When we got home she had that glaze in her eyes that made me want to take her temperature, Sure enough 101.4 - that was enough to explain what happened at school. whether it was the fever or a seizure one can't know, but it did keep her home from school for the next 2 days.
Over the weekend, Michael (husband, not son) participated in the Polar Bear Plunge to benefit Special Olympics. It was a beautiful day for us onlookers, obviously cold water for the plungers. It was amazing to see so many thousands of people doing something as crazy as jumping into the freezing cold bay - and raising so much $$ for such a great cause. We hope to get Kellyanne involved in Special Olympics soon.
Last night Kellyanne had her first gymnastics class at The Little Gym. As Michael and I watched with an equal mix of nervousness and pride, we were amazed by the staff, who helped her do the things the other children were doing. Kellyanne is very cautious, so sometimes it is necessary to give her that little push and say you can do it.
I of course was holding my breath the whole time, praying that she would follow the directions, wait in line and "fit in". She did a pretty good job : ) About 1/2 way through the class you could see the other kids look at her and realize, 'there's something different about this kid'. That's when I want to step in and say "You're right, there is something different, let me explain why she is different". I think when you can recognize the difference and speak openly about it, educate and answer questions, kids then stop thinking about it. It's like "oh, okay" and they move on. When we leave them to wonder, "why does she talk funny, run funny, screech, etc" we leave them hanging to their own imaginations and that of their friends, where they concoct all sorts of ideas, which are innocently ignorant. They just don't know. I welcome questions. I welcome the opportunity for parents and children alike to ask about Kellyanne. I like to share how she is like them and not like them. I am not offended by honest curiosity. I am offended by rude comments, stares, eye rolling and the like. Luckily, Kellyanne is oblivious to the fact that she is different, so maybe that's why I feel the way I do. We consider the fact that Kellyanne doesn't know she's different, a true blessing. She will be spared the pain that my other 3 children have endured when they "didn't fit in, were ridiculed because of their differences, made fun of for who knows why....." Now those people, I just wanted to SLAP! Sorry.
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