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.
Wednesday, May 18, 2011
Noah Ben Shea or the Bear that made me cry
As my good friends and family know, Jimmie is non-verbal. It is our main concern at the moment. Seizures are currently controlled. He's sleeping through the night for the first time in his life; thanks to periactin. And his behavior problem is resolved with prevacid. Yes the boy WAS in pain, just like we said he was. But still he does not talk or sign. It took us 2 months to figure out why he was screaming and banging his head. But even so, there are still moments...
This blog post is about one of those moments.
Last year, I took the boys to Virginia, on my own, to attend David's nephew's wedding and to visit my family. My sister and I took Jimmie and Charlie shopping with us in Tappahannock at Peeble's. She was pushing Jimmie in a cart. I was pushing Charlie. In the gift department, Jimmie reached out and grabbed a Teddy Bear off the shelf. It was ironically a "get well" bear. You squeeze the paw, and the bear starts to talk, in this very mellifluous tone, the actual voice of poet and author Noah Ben Shea, reading one of his poems, written specifically for the bear. It's a lovely little poem. At the end, he says, "Peace and blessings, Noah." The mouth moves, synchronized with the words. It's really the best done of such things I have ever seen. But I guess I am partial. See Jimmie squeezed the paw there in the store. And he smiled and laughed at the bear the entire time the bear was talking. And then the bear finished, "Peace and blessings, Noah." And Jimmie, my non-verbal child, said, plain, loud, as if he spoke it all the time, as if it were a word he heard daily, "Noah." I stood there in the store and cried. I hugged him tightly. And I am not ashamed to say, I hugged the bear too. And yes, I bought the thing. Did you think I would walk away from it? He has never said it again, but he does often press the paw and listen to it. And I checked. There are no kids in his class named Noah. No, this little miracle was brought to us via Noah Ben Shea and his lovely little bear. God is so very good!
It doesn't really end there though. I was so very moved by this experience that I visited Noah's website and sent a message to the company about our miracle. Within an hour Noah's daughter had responded, saying she would send my message on to Noah himself. And as promised, she did, because within a day, Noah had emailed me as well. Both he and his daughter had promised to keep Jimmie in their prayers. A very nice thing to say. Ah, but a promise that appears to have been kept. See, I friended Noah Ben Shea on facebook after the email, and today I realized that Noah Ben Shea is a member of our group page "Pray for Jimmie." And not only a member, but he apparently pays attention. He commented on 5/11 about Jimmie's six month anniversary of being seizure free. I saw that and thought back to that day in Peeble's.
The miracle is more than the word, "Noah." There is a miracle in Jimmie's story reaching a man and his family whom we have never met, to whom we have absolutely no connection. A miracle of Jimmie touching their hearts and minds, if only in a very small way. There is the miracle of prayer. It's nice to know that people care...enough to respond to an email and read a post. And there is the miracle for me of the realization that there are people who actually do say prayers for you when they say they do. It's a nice feeling.
This blog post is about one of those moments.
Last year, I took the boys to Virginia, on my own, to attend David's nephew's wedding and to visit my family. My sister and I took Jimmie and Charlie shopping with us in Tappahannock at Peeble's. She was pushing Jimmie in a cart. I was pushing Charlie. In the gift department, Jimmie reached out and grabbed a Teddy Bear off the shelf. It was ironically a "get well" bear. You squeeze the paw, and the bear starts to talk, in this very mellifluous tone, the actual voice of poet and author Noah Ben Shea, reading one of his poems, written specifically for the bear. It's a lovely little poem. At the end, he says, "Peace and blessings, Noah." The mouth moves, synchronized with the words. It's really the best done of such things I have ever seen. But I guess I am partial. See Jimmie squeezed the paw there in the store. And he smiled and laughed at the bear the entire time the bear was talking. And then the bear finished, "Peace and blessings, Noah." And Jimmie, my non-verbal child, said, plain, loud, as if he spoke it all the time, as if it were a word he heard daily, "Noah." I stood there in the store and cried. I hugged him tightly. And I am not ashamed to say, I hugged the bear too. And yes, I bought the thing. Did you think I would walk away from it? He has never said it again, but he does often press the paw and listen to it. And I checked. There are no kids in his class named Noah. No, this little miracle was brought to us via Noah Ben Shea and his lovely little bear. God is so very good!
It doesn't really end there though. I was so very moved by this experience that I visited Noah's website and sent a message to the company about our miracle. Within an hour Noah's daughter had responded, saying she would send my message on to Noah himself. And as promised, she did, because within a day, Noah had emailed me as well. Both he and his daughter had promised to keep Jimmie in their prayers. A very nice thing to say. Ah, but a promise that appears to have been kept. See, I friended Noah Ben Shea on facebook after the email, and today I realized that Noah Ben Shea is a member of our group page "Pray for Jimmie." And not only a member, but he apparently pays attention. He commented on 5/11 about Jimmie's six month anniversary of being seizure free. I saw that and thought back to that day in Peeble's.
The miracle is more than the word, "Noah." There is a miracle in Jimmie's story reaching a man and his family whom we have never met, to whom we have absolutely no connection. A miracle of Jimmie touching their hearts and minds, if only in a very small way. There is the miracle of prayer. It's nice to know that people care...enough to respond to an email and read a post. And there is the miracle for me of the realization that there are people who actually do say prayers for you when they say they do. It's a nice feeling.
Sunday, May 1, 2011
Celebrating Miracles With Bated Breath
Oh, but it is the worst part of my day, administering those meds. They taste awful. And he fights it so hard. I hate giving it only slightly less than he hates taking it. Contrary to his belief, I do not enjoy holding him down and forcing foul tasting concoctions into his mouth and making him swallow. In fact it breaks my heart daily. But I do it. Because it is what is best for him. Because it is working. And that makes it worth the heartbreak.
So right now, I feel like dancing. I feel like yelling, "Yee Haw!" loud and long and to the sky!
Not only do we have seizure freedom for our beautiful boy, but he has made leaps and bounds with development. He has better eye contact. He has a better sense of humor and laughs more appropriately. He has even played appropriately (on rare occasion) with toys, once even sitting on the ride on firetruck and pushing it with his feet, just like you're supposed to. He has sat on his daddy's lap and slapped his daddy on the chest happily cooing, "DaDaDaDaDaDa." He hugs readily. And low and behold, the boy has looked when his name is called and come when asked to come!
Sunday, April 17, 2011
Once Upon a Time
Once upon a time, I was completely unaware. I thought I was enlightened. I had a college degree. I had a best friend who had epilepsy and hydrocephalus and then later a son with autism. I had a cousin with down syndrome. I had a mother with scleroderma and whose health deteriorated right before my very eyes, a mother who went from a healthy vital woman I hardly remembered was sick to a woman dependent on oxygen and unable to walk a few feet without taxing her heart and lungs. I thought I understood.
I was wrong. Having friends and family with medical issues, developmental delays, and seizures does not prepare one for having a child with these issues. Oh, it helps. I had been introduced to the language. And I had a built in support system with the shared experience. I had that best friend to call when I needed her, though sadly I lost my mother before I really needed her. I had my aunt to offer encouragement. And my respect for her quaddruppled.
I didn't see the encouragement that way when she offered it. But her words became a ray of hope for me to cling to as my child grew older and still had not walked. "Joe Joe was 6 before he ever walked. He sure wore out the baby walkers though." It became a mantra of sorts. Joe Joe was 6. Joe Joe was 6. Jimmie did it at 2 1/2. And now, like Joe Joe before him, you can't keep him seated. I love to watch him run down the hallway...bounce, bounce, bounce...arms flapping, smile on his angelic face, up on his toes, leaning forward. Terrible stance, but beautiful in his independence.
I watched Rain Man 20 years ago, like everyone else. I cried 20 years ago at the scene where Tom Cruise understands Dustin Hoffman (Raymond) was his imaginary friend the Rain Man, who sang to him when he was scared. I saw it today with different eyes...or a different heart, perhaps. I can't even explain what I felt watching it today. It was just different. It was...enlightened. I cried very hard.
Charlie stood at my side with his hand on my knee and a look of worry on his little face. He's my angel too. I looked at him and saw his concern. I smiled and patted his cheek and told him I am just being silly. The movie made me cry, but I am okay. He breathed a sigh, and smiled back up at my tear stained face, and I swear I heard the relief in his little voice as he quipped, "Bye bye?" because he wanted to go outside. I said, "Yes, let's go bye bye." And then he was 2 again and happy to be going out. I am so proud of him. He takes such good care of his brother and of me. He is going to be a very caring young man and adult. I know it. I saw it when I turned away from the tv and to his face.
Have I really changed? Yes, I think I have. It's not anything I can explain. It's something inside of me. It's wrapped up in love and understanding and maternal instincts. Once upon a time I would have been more eloquent, but I still would have missed the point.
I was wrong. Having friends and family with medical issues, developmental delays, and seizures does not prepare one for having a child with these issues. Oh, it helps. I had been introduced to the language. And I had a built in support system with the shared experience. I had that best friend to call when I needed her, though sadly I lost my mother before I really needed her. I had my aunt to offer encouragement. And my respect for her quaddruppled.
I didn't see the encouragement that way when she offered it. But her words became a ray of hope for me to cling to as my child grew older and still had not walked. "Joe Joe was 6 before he ever walked. He sure wore out the baby walkers though." It became a mantra of sorts. Joe Joe was 6. Joe Joe was 6. Jimmie did it at 2 1/2. And now, like Joe Joe before him, you can't keep him seated. I love to watch him run down the hallway...bounce, bounce, bounce...arms flapping, smile on his angelic face, up on his toes, leaning forward. Terrible stance, but beautiful in his independence.
I watched Rain Man 20 years ago, like everyone else. I cried 20 years ago at the scene where Tom Cruise understands Dustin Hoffman (Raymond) was his imaginary friend the Rain Man, who sang to him when he was scared. I saw it today with different eyes...or a different heart, perhaps. I can't even explain what I felt watching it today. It was just different. It was...enlightened. I cried very hard.
Charlie stood at my side with his hand on my knee and a look of worry on his little face. He's my angel too. I looked at him and saw his concern. I smiled and patted his cheek and told him I am just being silly. The movie made me cry, but I am okay. He breathed a sigh, and smiled back up at my tear stained face, and I swear I heard the relief in his little voice as he quipped, "Bye bye?" because he wanted to go outside. I said, "Yes, let's go bye bye." And then he was 2 again and happy to be going out. I am so proud of him. He takes such good care of his brother and of me. He is going to be a very caring young man and adult. I know it. I saw it when I turned away from the tv and to his face.
Have I really changed? Yes, I think I have. It's not anything I can explain. It's something inside of me. It's wrapped up in love and understanding and maternal instincts. Once upon a time I would have been more eloquent, but I still would have missed the point.
Thursday, April 14, 2011
Angels Among Us
I believe in Angels. I believe in God, and I believe he has messengers and guardians. I believe in Angels. I pray nightly for intercession from St. Michael.
I've read those Miracle books...you know, the ones that describe encounters that border on the heavenly.
And like any person who believes I've had my own experiences.
Let me start with my sister's experience. My mother was in the hospital, on her deathbed. My sister left her to drive the 50 miles home. She was afraid to stay. She asked Mama to hold on until the next day, but alas, she could not. At the moment my mother passed away, my sister was driving and listening to the radio. That song by Diamond Rio, I Believe, was playing. She knows this because it was playing when she got in the car, and the radio station appeared to be experiencing some kind of malfunction. The song played and replayed all the way home for her, and the moment she got home, she had a message from my Mother's friend Kathy, who had stayed, that Mama was gone. Sometimes an Angel is a familiar voice or song.
Now...my angel. I thought about it tonight for the first time in a long time.
In the weeks leading up to Jimmie's diagnosis, when I first started noticing something was wrong, Jimmie was slightly fussy. Well, a lot fussy. And he always hated Walmart. Always. The lights have always been a problem for him. I was doing the bi-weekly shopping, and Jimmie was in his infant carrier, screaming and kicking rather violently. I was unloading my cart onto the conveyor belt at the checkout. There was a child in line behind me, with his mother, a little boy about 4 years old. With wide eyes and a tremulous little voice, he pulled on the hem of my shirt and said, "I think he's having seizures."
I didn't know the child. And I've never seen him again.
Angel. I'm totally convinced of it.
Thursday, April 7, 2011
Being a Girl
It's fun being a girl.
A while ago, in Walmart, someone complimented my purse and asked where I had gotten it. I answered. They told me that there is a great place for purses by the Social Security Office call Beautiful You Boutique. Today I finally got the chance to check it out.
The owner was a very nice lady who gave Charlie an Elvis Rubber Ducky. A picture of her son was hung on the wall dedicated to autism awareness...jewelry, tees, everything. He is 9 and assessed at 2 - 2 1/2 developmentally, mostly non-verbal, but obviously the light of her life and she "celebrates his differences." Obviously, I felt an instant connection.
Not to mention I loved everything in her store! What an awesome place! The slogan under the store name on the sign is "Because we give a glam!" Don't you love it? I love anything sparkly. And the place was sparkly to say the least! And the purses were indeed gorgeous!
It is such a feminine store. My husband would hate it. But I had a wonderful time looking at the shiny things. I live with three "men," two little ones and one big one. It's great to know there is a retreat from all the testosterone just down the street. Apparently my soul needs pretty things!
A while ago, in Walmart, someone complimented my purse and asked where I had gotten it. I answered. They told me that there is a great place for purses by the Social Security Office call Beautiful You Boutique. Today I finally got the chance to check it out.
The owner was a very nice lady who gave Charlie an Elvis Rubber Ducky. A picture of her son was hung on the wall dedicated to autism awareness...jewelry, tees, everything. He is 9 and assessed at 2 - 2 1/2 developmentally, mostly non-verbal, but obviously the light of her life and she "celebrates his differences." Obviously, I felt an instant connection.
Not to mention I loved everything in her store! What an awesome place! The slogan under the store name on the sign is "Because we give a glam!" Don't you love it? I love anything sparkly. And the place was sparkly to say the least! And the purses were indeed gorgeous!
It is such a feminine store. My husband would hate it. But I had a wonderful time looking at the shiny things. I live with three "men," two little ones and one big one. It's great to know there is a retreat from all the testosterone just down the street. Apparently my soul needs pretty things!
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