4.24.2012
Pounding the pavement
4.10.2012
Our television debut!
So by now almost all of you have seen our tv debut a week ago. Fox News' Lauren Cohn came out and interviewed us and shot video of the kids for their 10:00pm news. Lauren Cohn was so so nice. As uncomfortable as it was, we are so grateful for the opportunity to increase awareness. What we had not planned was the kids wanting to watch the piece. We were not thinking about the fact that the kids do not exactly know that Progeria will most likely prevent them from having a future. So I showed them the piece which we had recorded and fast forwarded through the interview parts much to their dismay. It is so hard keeping this information from them. I feel like we are being sneaky and dishonest but we just do not feel like they are ready. Maybe we are wrong, I don't know. The parenting books do not include information of this nature. So once that was done I breathed a big sigh of relief and only had to worry about the conference call on Thursday.
The conference call on Thursday was with the physicians and staff that are conducting the clinical trial in Boston as well as the other families who are enrolled in the clinical trial. Although they are not at liberty to discuss specifics, they are hoping to be able to begin the four-drug clinical trial soon. Until then we will continue on the current medication. So it was nothing to worry about and I feel silly for worrying so much. Honestly it had me paralyzed. I was so afraid that we would receive information that would turn our world upside down. I guess after that happens a couple times one begins to prepare for the worst. In my head I was going over some "What is the worst that can happen?" scenarios. I thought that if we were dropped from the clinical trial, maybe God has something else out there which would be better for us. Perhaps I need to just trust God. But then I remember that trusting God does not guarantee that our boys will be cured and everything will be wrapped up neatly. This led me to questioning what it means to trust God when it doesn't mean we will be spared pain and disappointment. These are all the thoughts that were swirling about my head last week which left me with little energy for much else. I have been through all these questions before and I know the some of the answers. Other times the doubts creep in and I need reminders of what it all means.
The interesting week turned into a rather good one with lots of unnecessary worrying!
The conference call on Thursday was with the physicians and staff that are conducting the clinical trial in Boston as well as the other families who are enrolled in the clinical trial. Although they are not at liberty to discuss specifics, they are hoping to be able to begin the four-drug clinical trial soon. Until then we will continue on the current medication. So it was nothing to worry about and I feel silly for worrying so much. Honestly it had me paralyzed. I was so afraid that we would receive information that would turn our world upside down. I guess after that happens a couple times one begins to prepare for the worst. In my head I was going over some "What is the worst that can happen?" scenarios. I thought that if we were dropped from the clinical trial, maybe God has something else out there which would be better for us. Perhaps I need to just trust God. But then I remember that trusting God does not guarantee that our boys will be cured and everything will be wrapped up neatly. This led me to questioning what it means to trust God when it doesn't mean we will be spared pain and disappointment. These are all the thoughts that were swirling about my head last week which left me with little energy for much else. I have been through all these questions before and I know the some of the answers. Other times the doubts creep in and I need reminders of what it all means.
The interesting week turned into a rather good one with lots of unnecessary worrying!
4.04.2012
Interesting week...
I know, I know...I've heard it before. I don't post for a long time and then bam, a bunch of posts in a row.
Anyway, emotions have been running high this week for several reasons. Last week we got an email from Boston scheduling a conference call this week to speak with the doctors about the status of the clinical trials. This got me completely freaked out to say the least. I have not been able to concentrate and have had that sinking feeling since last Tuesday. I am better now as I bugged them until they told me there is nothing to worry about but for a while I was a mess {more of a mess then I am normally}. I was panicked that they were going to drop a bombshell on us. I am feeling a little bit better but still in the back of my mind, worried.
Also, today we are expecting the news crew from one of the local stations who would like to do a story on us. I don't know what to expect. I hate to see myself on camera. I hate talking on camera. I hate being vulnerable to criticism. I am worried it will bring up things that Libby does not know about and her mind will work overtime filling in the blanks. It is a great opportunity for awareness for Progeria but I am so nervous. I get nervous in most social situations let alone one in which our family is in the spotlight. It will of course be bringing up all the details of progeria we try to ignore on a day to day basis.
Last night I took the kids to the duck pond with a bag of bread cubes to feed the ducks. It is something they love doing and it is fun to see them feeding the ducks. Yesterday the ducks were not very hungry but we still managed to have a good time. When we got out of the car, a family was coming by after fishing. They passed Nathan and Libby first and then they were near me and Bennett when the one child exclaimed, "His face was really weird!" I snapped. In a very unChristian-like manner, I snapped that his face is not weird. {What a smart comeback right?} The Dad looked like he wanted to disappear and whopped the kid in the back of the head which is not good either. Libby wanted to know what the commotion was and said she heard what the kids said. Nathan and Bennett were of course oblivious to everything. In a nutshell, I mishandled the situation. I felt really bad and vowed to do better next time. I also vowed that it will not keep me from doing the things we enjoy doing just because people stare or say things. This is not an easy vow to keep and requires daily {sometimes minutely} prays and pep talks. This brings me to another topic which I will get to later because we are off to the thrift store. Nathan and Libby have off school the rest of the week and Bennett is in school.
PS. I forgot to mention that something is going on with my eye and it is swollen half shut. We had to cancel pictures on Monday but I really want to get this tv thing done. So I may have to wear sunglasses or a hat or both or a bee keepers mask!! Or I'll just push Mark in front of the camera! LOL
Anyway, emotions have been running high this week for several reasons. Last week we got an email from Boston scheduling a conference call this week to speak with the doctors about the status of the clinical trials. This got me completely freaked out to say the least. I have not been able to concentrate and have had that sinking feeling since last Tuesday. I am better now as I bugged them until they told me there is nothing to worry about but for a while I was a mess {more of a mess then I am normally}. I was panicked that they were going to drop a bombshell on us. I am feeling a little bit better but still in the back of my mind, worried.
Also, today we are expecting the news crew from one of the local stations who would like to do a story on us. I don't know what to expect. I hate to see myself on camera. I hate talking on camera. I hate being vulnerable to criticism. I am worried it will bring up things that Libby does not know about and her mind will work overtime filling in the blanks. It is a great opportunity for awareness for Progeria but I am so nervous. I get nervous in most social situations let alone one in which our family is in the spotlight. It will of course be bringing up all the details of progeria we try to ignore on a day to day basis.
Last night I took the kids to the duck pond with a bag of bread cubes to feed the ducks. It is something they love doing and it is fun to see them feeding the ducks. Yesterday the ducks were not very hungry but we still managed to have a good time. When we got out of the car, a family was coming by after fishing. They passed Nathan and Libby first and then they were near me and Bennett when the one child exclaimed, "His face was really weird!" I snapped. In a very unChristian-like manner, I snapped that his face is not weird. {What a smart comeback right?} The Dad looked like he wanted to disappear and whopped the kid in the back of the head which is not good either. Libby wanted to know what the commotion was and said she heard what the kids said. Nathan and Bennett were of course oblivious to everything. In a nutshell, I mishandled the situation. I felt really bad and vowed to do better next time. I also vowed that it will not keep me from doing the things we enjoy doing just because people stare or say things. This is not an easy vow to keep and requires daily {sometimes minutely} prays and pep talks. This brings me to another topic which I will get to later because we are off to the thrift store. Nathan and Libby have off school the rest of the week and Bennett is in school.
PS. I forgot to mention that something is going on with my eye and it is swollen half shut. We had to cancel pictures on Monday but I really want to get this tv thing done. So I may have to wear sunglasses or a hat or both or a bee keepers mask!! Or I'll just push Mark in front of the camera! LOL
4.03.2012
Intermission
One of the negatives of Libby sharing a room with her brothers is that I have not had a chance to rest with her at night. She has moved back to her double bed from the top bunk so now I get to rest with her on occasion. This is when we have our best talks about God, anxiety, friends, adoption, Progeria and many other things. Laying in the dark with her for fifteen minutes I get more information than a whole day spent with her.
So Libby's behavior the past few weeks has been on a downward spiral. After being "fit-free" for several months, she has moved to almost daily fits. She is one challenging child who almost always takes things too far, frequently experiences and demonstrates intense emotions and still at nine years old is doing things she knows she is not supposed to do be doing. Most concerning for us is how mean she has been to her brothers, especially Nathan. He definitely does things to annoy her but she is relentless with him. He cannot say anything right, he looks at her wrong, she tells him his breath is bad, he's standing too close and of course he cannot enter her room or touch anything of hers. She is constantly yelling at them both. Despite repeated consequences, it does not seem to be getting better. Its always a challenge knowing what is typical brother/sister and what is something else going on due to adoption, special needs issues.
Ironically, right after I posted about Libby sleeping in the boys room, she returned to sleep in her room. Since then I have rested with her a couple of times and last night was one of those nights. We talked about her being mean to her brothers and yelling at us. She was remorseful about her behavior and said that it is just because she has "so much going on in my mind right now with school, homework and having special needs brothers." {hmmm, sound familiar?} I asked what was filling her mind and then prayed that I would have answers for whatever she presented. So she went on to ask if it was just Nathan and Bennett's outside that was aging and not the inside. She wanted to know if their hearts were aging too. From what she has heard and what she has experienced, it seems that aging=heart problems and heart problems=death. So what does a good mother do? Well I don't know but I decided to lie. There are certain things she doesn't need to know. As far as we know Nathan and Bennett do not have any heart problems but of course heart problems are associated with classic progeria. So she worries about that and worries about their appearance. She sees Bennett changing and looking more like Nathan. She notices that people say Bennett is cute but don't say that Nathan is cute. I explained about the youngest child thing which seemed to satisfy her. She worries about the bones in their hands being so close to the surface. She worries that people will stare at us when we are out with them. She thinks that maybe we could put some make-up on them that their veins are not so visible or if Nathan could maybe grow some bangs to cover up his forehead (Somehow the fact that Nathan's hair is no longer growing has alluded her.)
We talked some more and I hate to bore you with the details but want to get them down in writing for myself too. I asked if she wishes sometimes that she had "regular" brothers like her other friends and she said, "No, I want Nathan and Bennett. I just wish they didn't have special needs." I think my heart actually flipped with joy at that one! She said she thinks that things will be better when Nathan and Bennett are in intermission. Because I know that one of Libby's friends had cancer and the two girls often talk about this, I was able to understand that she meant remission. This began the most difficult part of the discussion which was explaining the ways that Cancer and Progeria are very different but equally serious.
We got through that and I cannot say that I effectively helped her understand. I explained that we are all learning and going through this together as a family and that it's perfectly understandable that she would have all these worries but we are doing all we can...not an excuse for bad behavior...Nathan and Bennett have feelings and deserve to be treated with respect yada yada. It must be hard having two brothers with special needs but we are all praying for a cure and raising money to find a cure. Then she had an "Aha" moment, "Maybe God chose our family for me so that I can help find a cure! He knew that we would be good together!" My eyes filled with tears and I hugged her. All those times when as parents we think we are not getting through to our kids but some of it must be getting through! We are a family who is muddling through this together. Its okay that we don't have all he answers. Its okay as long as we keep talking and listening to one another.
It was such a great reminder that Libby is experiencing all this with us and notices almost everything we notice. Some of her points were excuses {ie. "you guys are always going to Boston with the boys." We have not been to Boston without her in over a year!!} Others were more valid like worrying about their hearts. There is no way to know that all this is going on in her little head. I get so focused on my own grief, anxiety and depression that I forget that others are experiencing similiar symptoms-even members of our extended family. Nathan and Libby could not be more different. Nathan does not think about things or worry about anything. What you see is what you get with him. We can talk about serious stuff around him or watch the news and he doesn't pick up on much. Not that he is not smart, he is just not as perceptive as Libby. Libby can sense the slightest changes in people or her environment. This morning within five minutes of waking up Libby told Bennett to "go away" so I didn't perform any miracles but, oh well!
So Libby's behavior the past few weeks has been on a downward spiral. After being "fit-free" for several months, she has moved to almost daily fits. She is one challenging child who almost always takes things too far, frequently experiences and demonstrates intense emotions and still at nine years old is doing things she knows she is not supposed to do be doing. Most concerning for us is how mean she has been to her brothers, especially Nathan. He definitely does things to annoy her but she is relentless with him. He cannot say anything right, he looks at her wrong, she tells him his breath is bad, he's standing too close and of course he cannot enter her room or touch anything of hers. She is constantly yelling at them both. Despite repeated consequences, it does not seem to be getting better. Its always a challenge knowing what is typical brother/sister and what is something else going on due to adoption, special needs issues.
Ironically, right after I posted about Libby sleeping in the boys room, she returned to sleep in her room. Since then I have rested with her a couple of times and last night was one of those nights. We talked about her being mean to her brothers and yelling at us. She was remorseful about her behavior and said that it is just because she has "so much going on in my mind right now with school, homework and having special needs brothers." {hmmm, sound familiar?} I asked what was filling her mind and then prayed that I would have answers for whatever she presented. So she went on to ask if it was just Nathan and Bennett's outside that was aging and not the inside. She wanted to know if their hearts were aging too. From what she has heard and what she has experienced, it seems that aging=heart problems and heart problems=death. So what does a good mother do? Well I don't know but I decided to lie. There are certain things she doesn't need to know. As far as we know Nathan and Bennett do not have any heart problems but of course heart problems are associated with classic progeria. So she worries about that and worries about their appearance. She sees Bennett changing and looking more like Nathan. She notices that people say Bennett is cute but don't say that Nathan is cute. I explained about the youngest child thing which seemed to satisfy her. She worries about the bones in their hands being so close to the surface. She worries that people will stare at us when we are out with them. She thinks that maybe we could put some make-up on them that their veins are not so visible or if Nathan could maybe grow some bangs to cover up his forehead (Somehow the fact that Nathan's hair is no longer growing has alluded her.)
We talked some more and I hate to bore you with the details but want to get them down in writing for myself too. I asked if she wishes sometimes that she had "regular" brothers like her other friends and she said, "No, I want Nathan and Bennett. I just wish they didn't have special needs." I think my heart actually flipped with joy at that one! She said she thinks that things will be better when Nathan and Bennett are in intermission. Because I know that one of Libby's friends had cancer and the two girls often talk about this, I was able to understand that she meant remission. This began the most difficult part of the discussion which was explaining the ways that Cancer and Progeria are very different but equally serious.
We got through that and I cannot say that I effectively helped her understand. I explained that we are all learning and going through this together as a family and that it's perfectly understandable that she would have all these worries but we are doing all we can...not an excuse for bad behavior...Nathan and Bennett have feelings and deserve to be treated with respect yada yada. It must be hard having two brothers with special needs but we are all praying for a cure and raising money to find a cure. Then she had an "Aha" moment, "Maybe God chose our family for me so that I can help find a cure! He knew that we would be good together!" My eyes filled with tears and I hugged her. All those times when as parents we think we are not getting through to our kids but some of it must be getting through! We are a family who is muddling through this together. Its okay that we don't have all he answers. Its okay as long as we keep talking and listening to one another.
It was such a great reminder that Libby is experiencing all this with us and notices almost everything we notice. Some of her points were excuses {ie. "you guys are always going to Boston with the boys." We have not been to Boston without her in over a year!!} Others were more valid like worrying about their hearts. There is no way to know that all this is going on in her little head. I get so focused on my own grief, anxiety and depression that I forget that others are experiencing similiar symptoms-even members of our extended family. Nathan and Libby could not be more different. Nathan does not think about things or worry about anything. What you see is what you get with him. We can talk about serious stuff around him or watch the news and he doesn't pick up on much. Not that he is not smart, he is just not as perceptive as Libby. Libby can sense the slightest changes in people or her environment. This morning within five minutes of waking up Libby told Bennett to "go away" so I didn't perform any miracles but, oh well!
4.02.2012
Happiness is...
..that Nathan is able to walk and talk and go to the neighbors to borrow an onion! {We still owe them an onion.}
and 3T pants that are getting a liiiiitle too short!
and 3T pants that are getting a liiiiitle too short!
If I knew the boys were getting stronger and bigger and healthier, it would be alot easier. But hanging over my head is the knowledge that, without a cure, my boys are going to get worse insead of better. There are so many ways in which they are getting bigger and better but physically looking older and older. It's a strange thing.
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