Tomorrow is May 1, the day of the 2010 HEA fundraiser walk.
My family and I will be spending the morning with other people, and their friends and families, who have hypospadias or epispadias. What a special treat. It's like we finally get to close the door on the loneliness and isolation we've dealt with for the last 7 years and open another to what could be our new family. For all this time, I've wanted nothing more than my son to be able to understand that he's not the only one (well, second to the fact that I don't want him to go through this anymore).
He met one boy almost 2 weeks ago that lives 20 minutes away, he's only a year older than my son, and his mom will be one of my son's teachers next year. And, he also has epispadias and is incontinent. I know it's hard to say if they'll develop a lifelong friendship, but I sure hope they do. If I've learned anything in my life it's that everyone needs at least one person that truly understands.
What will tomorrow bring?
Friday, April 30, 2010
Tuesday, April 13, 2010
Speechless
How do you tell a 7-year-old that what he has to do will change his life for the better ... hopefully? How can he understand something that he's never known?
He was very upset during a phone conversation I had with him tonight. He started talking about his surgery in December. He's angry because he has to do it again. He's angry because his little brother "can stay dry." He's angry because of everything. I tried to tell him that without the surgery, he will always have to wear pull-ups. With it, he'll never need them again. How would he understand that? He's never been without diapers and pull-ups. He doesn't know what that's like.
I wish some one could tell me what to say to make him understand, to help calm his fears. I wish some one could just tell me what to do to help him. I don't want to hear all the b.s. answers, like: "Tell him everyday that you love him just the way he is," "Do your best to instill confidence in him," "Make sure he knows that you'll always be there," "Arm your self with information," "You can only do your best, the rest is up to him." Yeah. The sad part is that I'm guilty of saying this crap too. It's nice to hear. It's nice to have people, even though it's online, who understand and sympathize.
But why can't people just be real about the whole situation and just say the whole f***ing thing sucks! Forget all the polite conversations. Forget worrying about who may ro may not be offended.
I hate seeing him go through any of this. I hate that I've seen my son with tubes coming out of his body and needles going in. I hate that he's been "repaired." I hate that I've seen him sedated. I hate that I've seen him swollen from all the fluids pumped into his body during surgery. I hate that I know he vomits EVERY time he comes out of anesthesia. I hate that he's scared, angry, confused and feels isolated and embarrassed. I hate that, no matter what, I CAN'T take it all away. I can't make it better. I can't take away the pain. I can't make the kids stop teasing him.
I love him so much. I just want it to stop. Just stop.
He was very upset during a phone conversation I had with him tonight. He started talking about his surgery in December. He's angry because he has to do it again. He's angry because his little brother "can stay dry." He's angry because of everything. I tried to tell him that without the surgery, he will always have to wear pull-ups. With it, he'll never need them again. How would he understand that? He's never been without diapers and pull-ups. He doesn't know what that's like.
I wish some one could tell me what to say to make him understand, to help calm his fears. I wish some one could just tell me what to do to help him. I don't want to hear all the b.s. answers, like: "Tell him everyday that you love him just the way he is," "Do your best to instill confidence in him," "Make sure he knows that you'll always be there," "Arm your self with information," "You can only do your best, the rest is up to him." Yeah. The sad part is that I'm guilty of saying this crap too. It's nice to hear. It's nice to have people, even though it's online, who understand and sympathize.
But why can't people just be real about the whole situation and just say the whole f***ing thing sucks! Forget all the polite conversations. Forget worrying about who may ro may not be offended.
I hate seeing him go through any of this. I hate that I've seen my son with tubes coming out of his body and needles going in. I hate that he's been "repaired." I hate that I've seen him sedated. I hate that I've seen him swollen from all the fluids pumped into his body during surgery. I hate that I know he vomits EVERY time he comes out of anesthesia. I hate that he's scared, angry, confused and feels isolated and embarrassed. I hate that, no matter what, I CAN'T take it all away. I can't make it better. I can't take away the pain. I can't make the kids stop teasing him.
I love him so much. I just want it to stop. Just stop.
Tattle tale!
Little kids, especially siblings, like to tattle on each other ... a lot.
Just the other day, my 4 year old just HAD to tell me that his 7-year-old brother went back to bed. Then he ran to his brother's room and said, "Mom said to get out of bed right now!" I said no such thing. I think it's quite obvious that the little one was trying to get revenge on the big one for an earlier incident. I believe a wedgie was involved. Boys.
Well, little girls are just a bad. Mine is 23 months old. She's sweet. She's cute. And she knows what she's doing. If one of the boys has something, no matter what it is, she tries to take it and and gets mad at them when they don't give it up willingly. Her scowl is the best I've ever seen.
There's the poking, pushing, copying, chasing, hitting, kicking and tattling. But, there is never anyone to blame. Go figure! It's a good thing that us moms have a eyes everywhere. I tell my kids all the time, "I have eyes all over my body!" I've often heard my stepdaughters, who are now almost 11 and 13, say, "How did you know!?"
But, how do you know when it's something more than just a sibling thing or even just a kid thing? Man, if I only had as many answers as I do eyes! If I ever figure it out, I'll let you know.
Just the other day, my 4 year old just HAD to tell me that his 7-year-old brother went back to bed. Then he ran to his brother's room and said, "Mom said to get out of bed right now!" I said no such thing. I think it's quite obvious that the little one was trying to get revenge on the big one for an earlier incident. I believe a wedgie was involved. Boys.
Well, little girls are just a bad. Mine is 23 months old. She's sweet. She's cute. And she knows what she's doing. If one of the boys has something, no matter what it is, she tries to take it and and gets mad at them when they don't give it up willingly. Her scowl is the best I've ever seen.
There's the poking, pushing, copying, chasing, hitting, kicking and tattling. But, there is never anyone to blame. Go figure! It's a good thing that us moms have a eyes everywhere. I tell my kids all the time, "I have eyes all over my body!" I've often heard my stepdaughters, who are now almost 11 and 13, say, "How did you know!?"
But, how do you know when it's something more than just a sibling thing or even just a kid thing? Man, if I only had as many answers as I do eyes! If I ever figure it out, I'll let you know.
Thursday, April 1, 2010
Pride and Pain
Children are wise. There's no doubt about it. But, as parents, I think we are often blinded by the daily routine of caring for our children. It's so easy to miss what's lying just under the surface. When we do discover this amazing attribute that fades far too quickly, if we are lucky enough to see it, it can knock you right on your ass.
I found myself in a situation with my oldest son the other day. I decided, in a rather spur-of-the-moment way, to tell him about his next surgery. I wasn't quite sure how to say it or what his reaction would be. I was surprised ... proud. He's 7 years old. His first reaction was, "The mask?" (as in the mask used to administer the "sleepy medicine.") "Oh, man," he said. He's 7 years old. I was expecting to fight for his attention. No. Didn't have to. He listened to everything I said. He paid attention. He asked questions that an adult would ask when facing a major surgery. Good questions. It was amazing.
He did grow concerned when I told him he'll stay in the hospital for a while. He thought we were going to leave him there, alone, until he could come home. That's when the pain hit. Like a knife driven into my heart, the emotions I've tried for so long to keep bottled came gushing out. I told him that I won't leave him alone in the hospital. I won't leave until he does. I told him that I've seen him go through so much in his life. That I wish I could take it all away. I said I know he's strong. If I didn't think he could handle it, I wouldn't make him do it. He's my hero. And I cried. He looked at me like I was crazy at one point. Then, we ended the conversation and moved on to more important things, like eating ice cream. Nothing more was said about the surgery for the following couple hours. Then, out of the blue, he came up to me, looked at me, wrapped his arms around my waist and told me he loves me.
Children are wise in the simplest of ways. Epispadias has been difficult for all of us. But, as his mom, I try to keep my pain and fear to myself. I guess I thought it would be harder for him to deal with everything if he saw his mom fall apart. That night, he taught me a lesson. It's OK to fall apart sometimes. No one is impervious to pain. Sometimes we need to see the true feelings of others to let us know it's OK to let it out.
I found myself in a situation with my oldest son the other day. I decided, in a rather spur-of-the-moment way, to tell him about his next surgery. I wasn't quite sure how to say it or what his reaction would be. I was surprised ... proud. He's 7 years old. His first reaction was, "The mask?" (as in the mask used to administer the "sleepy medicine.") "Oh, man," he said. He's 7 years old. I was expecting to fight for his attention. No. Didn't have to. He listened to everything I said. He paid attention. He asked questions that an adult would ask when facing a major surgery. Good questions. It was amazing.
He did grow concerned when I told him he'll stay in the hospital for a while. He thought we were going to leave him there, alone, until he could come home. That's when the pain hit. Like a knife driven into my heart, the emotions I've tried for so long to keep bottled came gushing out. I told him that I won't leave him alone in the hospital. I won't leave until he does. I told him that I've seen him go through so much in his life. That I wish I could take it all away. I said I know he's strong. If I didn't think he could handle it, I wouldn't make him do it. He's my hero. And I cried. He looked at me like I was crazy at one point. Then, we ended the conversation and moved on to more important things, like eating ice cream. Nothing more was said about the surgery for the following couple hours. Then, out of the blue, he came up to me, looked at me, wrapped his arms around my waist and told me he loves me.
Children are wise in the simplest of ways. Epispadias has been difficult for all of us. But, as his mom, I try to keep my pain and fear to myself. I guess I thought it would be harder for him to deal with everything if he saw his mom fall apart. That night, he taught me a lesson. It's OK to fall apart sometimes. No one is impervious to pain. Sometimes we need to see the true feelings of others to let us know it's OK to let it out.
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