I don't know how to explain it. Things just change. Suddenly I can't watch Radio. I tried. Just couldn't. All I kept thinking was if that were my son...Well, there would be some football players who'd learn the meaning of not messing with a Mama bear. Run? Those boys wouldn't be able to run when I was done with them. And then I shut it off. Forget it. I can't watch it. I can't. Never mind I've seen it before. The meaning has changed. The perspective has changed. Social outrage has turned itself inside out and become personal outrage. I don't need that much emotion from a movie. I don't need to watch my personal fears acted out on the screen in front of me.
When did that happen? Was it during those days while we were waiting for that first EEG? I held my infant son and worried that he would be "delayed." Stupid word. David got mad at me. He said seizures don't mean he will be "retarded." No they don't. But I knew in my heart. I knew. Did it happen then? Or was it after the EEG and the news that our son had Infantile Spasms? Or maybe it was after months and months of therapies and ever emerging delays reared their ugly heads? He wasn't walking. He wasn't talking. He wasn't crawling even. Slowly he fought, and slowly he learned. Or maybe it was with that first report from school that said he wouldn't be ready for kindergarten? I guess, I'll never know...except that tonight, I couldn't watch Radio.
So what do I do with all of this personal rage? I really haven't a clue. I've been so busy feeling sorry, I haven't allowed myself to feel anger. Anger at the world. Anger at myself. Anger at my spouse. I hate anger. I'm not good with it. I am terrible at confrontations. And well, while I am angry at all these and more...I'm also not angry with them in particular. It's more of a general angry. I need a good long scream. But the kids are sleeping.
Wednesday, June 8, 2011
Monday, June 6, 2011
Gifts
One thing you learn when you are the parent of a child with a severe medical disorder is that people will give your child things. It feels weird at first. But I personally think that these gifts to your child should be accepted with open arms and an open heart. Here's why:
The first time Jimmie was given a gift just for being "sick" was in December 2006. He had been admitted to the hospital for testing due to his seizures. It was about a week and a half before Christmas. There had been a young man of 19 who had just passed away from cancer. He had spent much of his young life in the very hospital we found ourselves in that day. He had said that no kid should be in the hospital at Christmas without a gift and had started a toy drive that was thriving in his community in Joliet. The volunteers gave Jimmie a toy hammer that is played with nearly daily in our home, even to this day. It makes noise like sawing and a kind of wubba wubba noise that makes me think of the Three Stooges. They also gave Jimmie a beanie baby lion. This gift was a favorite for over a year. We had been reading Jimmie The Happy Lion at the time of the gift, so the Lion was naturally immediately named Happy Lion. Jimmie loved chewing on his mane. Hundreds of toys in this house. Many I have no idea where they came from. Those two I know exactly where they came from.
Then one day, I was reading on Braintalk about a friend's daughter's "Love Quilt." I visited the website and asked for a quilt for Jimmie. Now certainly we have blankets for Jimmie. Very nice blankets. But I decided to ask for one of these for Jimmie anyway because this is special. Each individual panel is cross-stitched by a different person or group who volunteers to do this. The individual panels are sent back to Love Quilts. Another volunteer pieces the panels and quilts them together. You can feel the love in every stitch. Love from all over the world from people whom we have never met. All we are asked in return is our story...our website so that the volunteers can read about the child they are stitching for. Jimmie's is a Winnie the Pooh themed (with a couple of different Teddy Bears thrown in for good measure) quilt. It came just after his second birthday, when I decorated his room in Winnie the Pooh. It's beautiful.
And even later, I noticed so many children of my on-line contacts getting wishes granted from Make-a-Wish Foundation. This one gave me pause. But I pushed myself on. I really thought it was saying my child is dying. So you know, IT'S NOT! Wishes are granted for children who have life threatening disorders. That is not the same as terminal. Now certainly we could take our children to Disney on our own. That's not the issue. The thing is, David and I could never do for Jimmie and Charlie and ourselves, what Make-a-Wish did for us. It was truly the most stress-free vacation we had ever experienced. There was nothing but joy. My husband, who was very anxious about accepting this gift, became a staunch supporter, stating, "If your child qualifies for a wish, get one granted. You'll never regret it. You owe it to your child." The love from all the volunteers, the fun, the absolute miracle of the entire process was beyond words. We chose Jimmie's wish for him, since he is developmentally like a one year old and is still non-verbal. We chose a Disney vacation. Make-a-Wish sent us to Give Kids The World Village in Kissimee. GKTW provided us with lodging for a week, tickets to Disney (3 day passes), Universal (2 day passes), and Seaworld (1 day passes). Make-a-Wish gave us all the money we needed for souvenirs and food. GKTW provided meals and daily gifts from the Gift Fairy and a visit to Santa with gifts for both kids...and memories that we will cherish forever.
Now we are coming up on Jimmie's 5th birthday. Last year I learned of another charity that will provide birthday cakes for children like Jimmie and his brother. Icing Smiles. Jimmie is having a cake made by a lovely lady in Rockford named Lisa at http://sugarcelebrations.blogspot.com/. She's making him a dream cake with an Imagination Movers theme. Jimmie loves the Imagination Movers. We are so excited and can't wait to see it.
I have come to believe that I should look for and accept these gifts for my son. So many things in his life are so unfair: seizing every day for years, having mommy or daddy stab him in his little legs every day with medicine that blew him up like a little sumo wrestler and caused hair in places no six month old should have hair, having nasty tasting medications shoved in his mouth every day three times as day to help control those God awful seizures, not being able to talk and tell when he's tired or hurting or sad or happy or excited and what about. These gifts offered from the world at large are small things that we can do to help him feel special and important. And I truly believe they help the gift giver too. They want to know about Jimmie. And they want to do something, even if it's stitching a panel on a quilt or giving a toy or making our dream vacation a reality. People want to help. Don't let pride deny you and your child and the world these little miracles. Accept the gifts with a grateful heart. You'll never regret it.
The first time Jimmie was given a gift just for being "sick" was in December 2006. He had been admitted to the hospital for testing due to his seizures. It was about a week and a half before Christmas. There had been a young man of 19 who had just passed away from cancer. He had spent much of his young life in the very hospital we found ourselves in that day. He had said that no kid should be in the hospital at Christmas without a gift and had started a toy drive that was thriving in his community in Joliet. The volunteers gave Jimmie a toy hammer that is played with nearly daily in our home, even to this day. It makes noise like sawing and a kind of wubba wubba noise that makes me think of the Three Stooges. They also gave Jimmie a beanie baby lion. This gift was a favorite for over a year. We had been reading Jimmie The Happy Lion at the time of the gift, so the Lion was naturally immediately named Happy Lion. Jimmie loved chewing on his mane. Hundreds of toys in this house. Many I have no idea where they came from. Those two I know exactly where they came from.
Then one day, I was reading on Braintalk about a friend's daughter's "Love Quilt." I visited the website and asked for a quilt for Jimmie. Now certainly we have blankets for Jimmie. Very nice blankets. But I decided to ask for one of these for Jimmie anyway because this is special. Each individual panel is cross-stitched by a different person or group who volunteers to do this. The individual panels are sent back to Love Quilts. Another volunteer pieces the panels and quilts them together. You can feel the love in every stitch. Love from all over the world from people whom we have never met. All we are asked in return is our story...our website so that the volunteers can read about the child they are stitching for. Jimmie's is a Winnie the Pooh themed (with a couple of different Teddy Bears thrown in for good measure) quilt. It came just after his second birthday, when I decorated his room in Winnie the Pooh. It's beautiful.
And even later, I noticed so many children of my on-line contacts getting wishes granted from Make-a-Wish Foundation. This one gave me pause. But I pushed myself on. I really thought it was saying my child is dying. So you know, IT'S NOT! Wishes are granted for children who have life threatening disorders. That is not the same as terminal. Now certainly we could take our children to Disney on our own. That's not the issue. The thing is, David and I could never do for Jimmie and Charlie and ourselves, what Make-a-Wish did for us. It was truly the most stress-free vacation we had ever experienced. There was nothing but joy. My husband, who was very anxious about accepting this gift, became a staunch supporter, stating, "If your child qualifies for a wish, get one granted. You'll never regret it. You owe it to your child." The love from all the volunteers, the fun, the absolute miracle of the entire process was beyond words. We chose Jimmie's wish for him, since he is developmentally like a one year old and is still non-verbal. We chose a Disney vacation. Make-a-Wish sent us to Give Kids The World Village in Kissimee. GKTW provided us with lodging for a week, tickets to Disney (3 day passes), Universal (2 day passes), and Seaworld (1 day passes). Make-a-Wish gave us all the money we needed for souvenirs and food. GKTW provided meals and daily gifts from the Gift Fairy and a visit to Santa with gifts for both kids...and memories that we will cherish forever.
Now we are coming up on Jimmie's 5th birthday. Last year I learned of another charity that will provide birthday cakes for children like Jimmie and his brother. Icing Smiles. Jimmie is having a cake made by a lovely lady in Rockford named Lisa at http://sugarcelebrations.blogspot.com/. She's making him a dream cake with an Imagination Movers theme. Jimmie loves the Imagination Movers. We are so excited and can't wait to see it.
I have come to believe that I should look for and accept these gifts for my son. So many things in his life are so unfair: seizing every day for years, having mommy or daddy stab him in his little legs every day with medicine that blew him up like a little sumo wrestler and caused hair in places no six month old should have hair, having nasty tasting medications shoved in his mouth every day three times as day to help control those God awful seizures, not being able to talk and tell when he's tired or hurting or sad or happy or excited and what about. These gifts offered from the world at large are small things that we can do to help him feel special and important. And I truly believe they help the gift giver too. They want to know about Jimmie. And they want to do something, even if it's stitching a panel on a quilt or giving a toy or making our dream vacation a reality. People want to help. Don't let pride deny you and your child and the world these little miracles. Accept the gifts with a grateful heart. You'll never regret it.
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