-Karyn
What day is it, even?
5 years ago
Saturday, July 3, 2010
Helmut Hair & Others
I have been neglecting my blog. My last post tells you why. Anyway, I wanted to share these photos of our vacation that we went on in June. Quinn and the boys are getting so big.
-Karyn
-Karyn
Friday, July 2, 2010
Advocacy
I don't tend to talk about my work, but here it goes...
I feel honored to be able to work within the field of juvenile corrections. I truly love my profession and the population I work with. If you would have told me when I was younger that this would be the population that I would be destined to work with, I would have never ever believed you. Now after doing this line of work for almost 13 years, I simply cannot imagine ever wanting to work with any other population or in any other institution. I am just one of many people who feel this way, and I work at Ethan Allen School. Ethan Allen School (EAS) is an institution that is in jeopardy of closing all because of politics. Facts like diversity of staff, close proximity to the homes of youth, the value of face-to-face visits, and access to mental health services have all been discounted by the Administrator of the Division of Juvenile Corrections and the Juvenile Corrections Review Committee. I hope that the Governor doesn’t discount these same things, but I am unsure about this given that he appointed these individuals to their positions. I just cannot believe that we have come to the place of actually talking about closing EAS and moving all the youth to an institution a much farther distance away from their homes and the communities where the vast majority of the youth come from.
This morning I walked to one of the cottages on my way to see one of my kids. I do consider the youth placed at EAS my kids. Not the same as my children at home, but the youth at EAS are in my care during their time with us, and I take this all very seriously. They all made bad choices in order to come to EAS, but they are still boys and young men who are very capable of changing. I have spent the last 13 years studying what it takes to change, talking to the youth at EAS about this concept, hearing about their lives, and helping them through unbelievable difficulties. I have experienced tears, loss, anger, guilt, pain, happiness, and laughter. I walk to the cottage thinking about how much I actually love this place. I know it is hard to imagine loving a correctional institution, but this institution is filled full of almost 13 years of memories, people that I loved working with – both youth and staff. I walk by Draper Hall and remember so many kids I worked with over the years, there are so many that I remember what their face looks like or the sound of their voice yelling hello to me through their window. I love working with every one of them. Some are thankfully successful adults in the community. Some were lost to the streets and maybe prison. Some had a slip up as an adult and then turned themselves around. And some are now deceased, but I loved working with every single one – even the challenging ones. It was an honor, not only did I teach them, but they taught me. They made me a better person. I give it my all with every single kid to help them consider change in their lives, but I recognize that they ultimately have the power to decide their destiny. That is the way it should be.
I arrive at the cottage to talk to my youth. Every time I talk to one of my youth I just know that I am in the right line of work. I feel this is the place I am meant to be. There is nothing like seeing the look in their eyes and the turn of their heads when I ask a question that challenges them. I can see it clearly over and over – this is the population that I am meant to serve. They also know they can rely on me when they are at EAS. I will always have their best interests in mind even if they don’t agree with my response. I have a gift in creating a strong therapeutic relationship with these youth. They see I care, but they also know that I will challenge them to think about things they never considered before. I recognize that I use more challenge with the youth I work with now than ever before, and they surprisingly take it well – they want to know what I think. I do not lie to them. They know that I will do what I say I will do. They know that they are safe.
Later in the day I am honored to see the family of one of my kids. So many people make assumptions about the families of the kids I work with. I can’t read postings online anymore without anger at some of these assumptions. Not all families of kids placed in corrections are one way. There are a multitude of stories. There are, however, times when unfortunately some of these assumptions are true, but this is not always the case. People from the outside who don’t know these kids often don’t have any idea of what really exists. They see these kids as “monsters” and criminals and their families as permissive or absent. Why not place them far away, they say. They really have no empathy for this population. But I know otherwise. The family of my kid is stable, loving, sets limits and boundaries, and is highly involved in their child’s life at EAS. I witness a powerful interaction. I see tears. I see hugs. The kid hears about how his previous behavior in the community impacted his family. I ask him to turn and look at his family and see their reaction to him coming home and to forever remember this moment. I see it in his eyes that he is taking in what I am saying to him. Looking back now as I type this, I see very clearly that all of this would not have been possible if EAS was closed. His family would probably have not come to the review which would have been a substantial distance away. If they were present via teleconferencing (an option discussed by the administrator and the committee) this interaction would not have been as powerful. I have studied people who change and recognize that defining moments like these can have a lasting impact. This kid, who has great potential, may be lost to the system or the streets without this moment. I am so thankful that we had this moment because there may be countless people impacted if we did not.
I remember the families over the years that I have worked with, one after another. I remember the honor of helping them through difficult moments and losses, seeing them become closer, witnessing vulnerable moments, and looking at the kids’ faces when they see their family walk up to our building for a meeting. I remember the pride of kids I worked with being able to introduce me to their families at visits or graduation. I remember the young men with children who wanted me to hold their son or daughter. I remember the joy of surprise visits on their birthday or some other occasion. How happy the youth were that there family was able to make it out to EAS last minute for this occasion.
I think about all the Serious Juvenile Offenders (SJOs) that I have worked with, one after another. They have a special place in my heart because this is the population that I have worked with the most over the years. There offenses tend to be the most serious and many would discount their ability to change, but I know they have potential if they choose to do something different with their lives. I simply know if institutions such of ours did not exist in the State of Wisconsin, one after another SJO would be waived into adult court. The advocates trying to get rid of all juvenile correctional institutions and move to the Missouri Model do not have any idea what they will be doing to this population. I think of so many SJOs who have had such potential – that this might have been their first offense, but it is serious enough that they have to come to corrections. I feel sad knowing that they may be lost to the adult system where they have less likelihood of receiving treatment and more likelihood of being drawn into additional negative activity and experiencing violence and assault.
I cannot believe that people are actually discussing closing EAS. I tried to have my voice heard in this process, but I feel that those who are “driving” this moment don’t want to hear from people like me. They discount the years and years of knowledge that I and others have on this subject. They want to portray our institution as a place where the staff just can’t get along and where the kids are unsafe. They are discounting any evidence that is to the contrary. They don’t want to see any good at EAS. They don’t want to see that there is support amongst staff. Maybe it isn’t 100%, but you tell me what work environment has 100% of the people getting along. If another correctional institution seems like 100% of the people get along, I would be very suspicious of this portrayal. My daughter’s two Godmothers have worked at Ethan Allen School, so this alone tells you what support there is amongst the staff. I admire so many of the staff. I know a youth counselor who the kids just respect, a man who can reach the kids who have an absent father like no other person can. They see hope for their future in him, as he comes from the same city as many of them do. He always treats everyone in the institution so fair and kind. I know a teacher that the kids just adore. One after another tells me know they would not have been able to get their HSED without him. He is a team player, and he always helps me out whenever I have a need or a question. I know a social worker who advocates for her kids’ needs. The kids respect what she has to say even if it isn’t exactly what they wanted to hear. She regularly reaches out to staff in need. She has even comforted me in my most difficult personal moments. I know a nurse who consistently follows through and communicates about the needs of the kids. He always has a smile on his face when I see him. I know a superintendent who cares about our opinion. No matter who you are, youth or staff, he treats you with respect. I walk around the institution thinking how is it possible that they portrayed us like this? What is the true agenda here? The above is just a sampling of the staff – there are so many others who I have been honored to work with. I could go on and on.
Ultimately, what I worry about are the kids, my kids. Since this horrible series of highly political events have commenced, I have advocated for them. I will continue to advocate for them. This is why I am telling my story even if it doesn’t change things. I just feel my voice needs to be heard. I am not speaking out for me. I am speaking out for them. I cannot see any justification to moving the vast majority of the kids, my kids, far from home to a county that demographically is so different than their own. This just isn’t right. I just hope that those in power to make these decisions will not close EAS for the kids who have been entrusted in my care. If you are from my state, please call the Governor and speak out about this (608) 266-1212.
-Karyn
I feel honored to be able to work within the field of juvenile corrections. I truly love my profession and the population I work with. If you would have told me when I was younger that this would be the population that I would be destined to work with, I would have never ever believed you. Now after doing this line of work for almost 13 years, I simply cannot imagine ever wanting to work with any other population or in any other institution. I am just one of many people who feel this way, and I work at Ethan Allen School. Ethan Allen School (EAS) is an institution that is in jeopardy of closing all because of politics. Facts like diversity of staff, close proximity to the homes of youth, the value of face-to-face visits, and access to mental health services have all been discounted by the Administrator of the Division of Juvenile Corrections and the Juvenile Corrections Review Committee. I hope that the Governor doesn’t discount these same things, but I am unsure about this given that he appointed these individuals to their positions. I just cannot believe that we have come to the place of actually talking about closing EAS and moving all the youth to an institution a much farther distance away from their homes and the communities where the vast majority of the youth come from.
This morning I walked to one of the cottages on my way to see one of my kids. I do consider the youth placed at EAS my kids. Not the same as my children at home, but the youth at EAS are in my care during their time with us, and I take this all very seriously. They all made bad choices in order to come to EAS, but they are still boys and young men who are very capable of changing. I have spent the last 13 years studying what it takes to change, talking to the youth at EAS about this concept, hearing about their lives, and helping them through unbelievable difficulties. I have experienced tears, loss, anger, guilt, pain, happiness, and laughter. I walk to the cottage thinking about how much I actually love this place. I know it is hard to imagine loving a correctional institution, but this institution is filled full of almost 13 years of memories, people that I loved working with – both youth and staff. I walk by Draper Hall and remember so many kids I worked with over the years, there are so many that I remember what their face looks like or the sound of their voice yelling hello to me through their window. I love working with every one of them. Some are thankfully successful adults in the community. Some were lost to the streets and maybe prison. Some had a slip up as an adult and then turned themselves around. And some are now deceased, but I loved working with every single one – even the challenging ones. It was an honor, not only did I teach them, but they taught me. They made me a better person. I give it my all with every single kid to help them consider change in their lives, but I recognize that they ultimately have the power to decide their destiny. That is the way it should be.
I arrive at the cottage to talk to my youth. Every time I talk to one of my youth I just know that I am in the right line of work. I feel this is the place I am meant to be. There is nothing like seeing the look in their eyes and the turn of their heads when I ask a question that challenges them. I can see it clearly over and over – this is the population that I am meant to serve. They also know they can rely on me when they are at EAS. I will always have their best interests in mind even if they don’t agree with my response. I have a gift in creating a strong therapeutic relationship with these youth. They see I care, but they also know that I will challenge them to think about things they never considered before. I recognize that I use more challenge with the youth I work with now than ever before, and they surprisingly take it well – they want to know what I think. I do not lie to them. They know that I will do what I say I will do. They know that they are safe.
Later in the day I am honored to see the family of one of my kids. So many people make assumptions about the families of the kids I work with. I can’t read postings online anymore without anger at some of these assumptions. Not all families of kids placed in corrections are one way. There are a multitude of stories. There are, however, times when unfortunately some of these assumptions are true, but this is not always the case. People from the outside who don’t know these kids often don’t have any idea of what really exists. They see these kids as “monsters” and criminals and their families as permissive or absent. Why not place them far away, they say. They really have no empathy for this population. But I know otherwise. The family of my kid is stable, loving, sets limits and boundaries, and is highly involved in their child’s life at EAS. I witness a powerful interaction. I see tears. I see hugs. The kid hears about how his previous behavior in the community impacted his family. I ask him to turn and look at his family and see their reaction to him coming home and to forever remember this moment. I see it in his eyes that he is taking in what I am saying to him. Looking back now as I type this, I see very clearly that all of this would not have been possible if EAS was closed. His family would probably have not come to the review which would have been a substantial distance away. If they were present via teleconferencing (an option discussed by the administrator and the committee) this interaction would not have been as powerful. I have studied people who change and recognize that defining moments like these can have a lasting impact. This kid, who has great potential, may be lost to the system or the streets without this moment. I am so thankful that we had this moment because there may be countless people impacted if we did not.
I remember the families over the years that I have worked with, one after another. I remember the honor of helping them through difficult moments and losses, seeing them become closer, witnessing vulnerable moments, and looking at the kids’ faces when they see their family walk up to our building for a meeting. I remember the pride of kids I worked with being able to introduce me to their families at visits or graduation. I remember the young men with children who wanted me to hold their son or daughter. I remember the joy of surprise visits on their birthday or some other occasion. How happy the youth were that there family was able to make it out to EAS last minute for this occasion.
I think about all the Serious Juvenile Offenders (SJOs) that I have worked with, one after another. They have a special place in my heart because this is the population that I have worked with the most over the years. There offenses tend to be the most serious and many would discount their ability to change, but I know they have potential if they choose to do something different with their lives. I simply know if institutions such of ours did not exist in the State of Wisconsin, one after another SJO would be waived into adult court. The advocates trying to get rid of all juvenile correctional institutions and move to the Missouri Model do not have any idea what they will be doing to this population. I think of so many SJOs who have had such potential – that this might have been their first offense, but it is serious enough that they have to come to corrections. I feel sad knowing that they may be lost to the adult system where they have less likelihood of receiving treatment and more likelihood of being drawn into additional negative activity and experiencing violence and assault.
I cannot believe that people are actually discussing closing EAS. I tried to have my voice heard in this process, but I feel that those who are “driving” this moment don’t want to hear from people like me. They discount the years and years of knowledge that I and others have on this subject. They want to portray our institution as a place where the staff just can’t get along and where the kids are unsafe. They are discounting any evidence that is to the contrary. They don’t want to see any good at EAS. They don’t want to see that there is support amongst staff. Maybe it isn’t 100%, but you tell me what work environment has 100% of the people getting along. If another correctional institution seems like 100% of the people get along, I would be very suspicious of this portrayal. My daughter’s two Godmothers have worked at Ethan Allen School, so this alone tells you what support there is amongst the staff. I admire so many of the staff. I know a youth counselor who the kids just respect, a man who can reach the kids who have an absent father like no other person can. They see hope for their future in him, as he comes from the same city as many of them do. He always treats everyone in the institution so fair and kind. I know a teacher that the kids just adore. One after another tells me know they would not have been able to get their HSED without him. He is a team player, and he always helps me out whenever I have a need or a question. I know a social worker who advocates for her kids’ needs. The kids respect what she has to say even if it isn’t exactly what they wanted to hear. She regularly reaches out to staff in need. She has even comforted me in my most difficult personal moments. I know a nurse who consistently follows through and communicates about the needs of the kids. He always has a smile on his face when I see him. I know a superintendent who cares about our opinion. No matter who you are, youth or staff, he treats you with respect. I walk around the institution thinking how is it possible that they portrayed us like this? What is the true agenda here? The above is just a sampling of the staff – there are so many others who I have been honored to work with. I could go on and on.
Ultimately, what I worry about are the kids, my kids. Since this horrible series of highly political events have commenced, I have advocated for them. I will continue to advocate for them. This is why I am telling my story even if it doesn’t change things. I just feel my voice needs to be heard. I am not speaking out for me. I am speaking out for them. I cannot see any justification to moving the vast majority of the kids, my kids, far from home to a county that demographically is so different than their own. This just isn’t right. I just hope that those in power to make these decisions will not close EAS for the kids who have been entrusted in my care. If you are from my state, please call the Governor and speak out about this (608) 266-1212.
-Karyn
Tuesday, June 15, 2010
Reality Bites
One thing after another, so it seems.
I am trying to enjoy a vacation at the moment when my job (AKA my passion and life's work) is in the balance and depending on all things, politicians. Risky to say the least.
Kind of reminds me of a vacation three years ago when Quinn was in my belly, a diagnosis of DS was on my mind, and my husband's loss of his job was in my heart.
But we adjusted.
Then a new diagnosis of a seizure disorder came along.
Then we adjusted and completed a $120,000 treatment.
Then yet another new diagnosis came along (Stereotypic Movement Disorder).
But we adjusted yet again.
And now waitng for this decision and questions about what will happen....
I had the dream of going into private practice if my work closes. That way I could work with a smilar population, but then reality came here back to me....
Insurance...
Quinn's medical needs...
Oh things are complicated, aren't they?
But as always, we will adjust. I am just feeling trapped between a rock and a hard place at the moment.
-Karyn
I am trying to enjoy a vacation at the moment when my job (AKA my passion and life's work) is in the balance and depending on all things, politicians. Risky to say the least.
Kind of reminds me of a vacation three years ago when Quinn was in my belly, a diagnosis of DS was on my mind, and my husband's loss of his job was in my heart.
But we adjusted.
Then a new diagnosis of a seizure disorder came along.
Then we adjusted and completed a $120,000 treatment.
Then yet another new diagnosis came along (Stereotypic Movement Disorder).
But we adjusted yet again.
And now waitng for this decision and questions about what will happen....
I had the dream of going into private practice if my work closes. That way I could work with a smilar population, but then reality came here back to me....
Insurance...
Quinn's medical needs...
Oh things are complicated, aren't they?
But as always, we will adjust. I am just feeling trapped between a rock and a hard place at the moment.
-Karyn
Sunday, June 6, 2010
Wisconsin Natives-Please Help
If you are from Wisconsin, please help get the word out - Out of 437 youth in the Department of Juvenile Corrections, 325 are from the southern counties. That is a huge percentage of youth, families, and county workers to be inconvenienced by moving the location. Please write your governor, state senator, and state representative.
http://www.google.com/hostednews/ap/article/ALeqM5hSdbz67zNVY31vVu-FE-HzRP4n4gD9G5UQGO0
http://www.google.com/hostednews/ap/article/ALeqM5hSdbz67zNVY31vVu-FE-HzRP4n4gD9G5UQGO0
Sunday, May 30, 2010
The Girl I Love
First, can I just say that isn't this girl the cutest?
I could look at her all day.
Here we are with things - at least the diagnoses:
1. Down syndrome - no biggie.
2. Infantile Spasms - sucky. But the good news is that there hasn't been any more seizures and her med is supposed to help prevent them now.
3. Stereotypic Movement Disorder - the jury is out on how I feel about this one, but it is very stressful to see these when you fear seizures all the time.
4. Now the neuro wants an eval by a neuropsychologist. Why you ask? Well I don't know - I wasn't at the appointment and did not have the opportunity to ask, but I have my suspicions of what he may be thinking is there PDD (Pervasive Developmental Disorder). I am basing this on the questions he asked Neal. I just don't know about whether that is something with her though. The last few days she has been so interactive. The more I watch her, the less I am convinced.
But today all of the above doesn't matter because just consider how cute cute cute my girl is. She is the best daughter a mom could have and I am blessed. Oh the power of mighty Quinn.
-Karyn
Friday, May 21, 2010
Not Part of the Cool Kids Club
I was in a meeting yesterday. I am realizing that these meetings are tense for me because usually something like this happens... The topic of the meeting turned to our kids and that our kids "need" to grow up and go out on their own versus us perpetually taking care of them (one person has kids who are young adults and pretty dependant on their parents). Discussion insinuated that this is the way of life and the only way things go. I was just struck with how many assumptions are out there - thinking that this will happen for 100% of the people in the room. I don't know what the future holds. Hopefully Quinn can be independent. But maybe not. Let's be realistic, Quinn is even behind her peers with Down syndrome. She has epilepsy which is impacting her development. How can I assume anything? I need to wait and see. But at the meeting I realize that I don't fit in with the supposed "cool kids." The cool kids who think they have it all figured out. I am an outsider who has a different experience. An experience that they really don't want to hear because it scares them. It challenges their assumptions and that is just not a place they want to go. Disability is diversity and when you really start looking around you see that you can feel different in a lot of places - assumptions are everywhere. However, in this case I actually would rather not be part of the cool kids club. If I was, I would have never have gained this new perspective and I would be blind to a whole segment of life.
-Karyn
-Karyn
Tuesday, May 18, 2010
Catch Amnesia
Last night I was listening to my Black Eyed Peas CD. I know they have some songs with the r-word in it (arrgghh), but what I was enjoying last night was One Tribe. I love that song. It makes me smile and boy did I need to smile. My favorite line in there is about catching amnesia and forgetting about the evil. I decided that is what I need to do when it comes to the current state of things in seizure land. I need to catch amnesia and see this...
And not the evil of seizures.
My daughter is the most beautiful little girl in the world. She is so worth whatever we have to go through to have her. And her face when she smiles is the thing that mends my heart.
-Karyn
And not the evil of seizures.
My daughter is the most beautiful little girl in the world. She is so worth whatever we have to go through to have her. And her face when she smiles is the thing that mends my heart.
-Karyn
Sunday, May 16, 2010
Another Final Exam
I am so tired. Emotionally tired. In a short amount of time, it will be the anniversary of the day that I received the prenatal diagnosis of Down syndrome. If I had known then what I know now, I wouldn't have had that hard of a time with that diagnosis. Here I wasted all those tears on what - something I long for now. Something I just want to have, the Down syndrome experience without any other major issues. I thought it was the end of the world, but it so wasn't. For those of you who have a prenatal or recent diagnosis of Down syndrome, please don't read our story and have fear. Down syndrome didn't do this to us. Down syndrome was the blessing. It opened up our world to a new sensitivity and understanding of others. Sure, it isn't always reciprocal - others don't always have that sensitivity or understanding - but then at least you find out about the character of others. Down syndrome is not what I hate now. Down syndrome is beautiful to me now. And so many people have just the Down syndrome experience. I guess it just wasn't in our cards.
What gets me is epilepsy, of course. Surprised - huh? Not. I don't want to learn about different types of seizures or medication. I don't want to be asked questions over and over again about these topics. It is like being given another final exam after the semester has ended and all you want to do is live it up for the Summer. No, not live it up for the Summer, but at least get some respite, some calm - take a nap at least. And most of all, not have to complete another final exam because you are totally drained. But instead you get another final exam put in front of you on your desk and people just want to know this and that answer. They are screaming at me, "Come on, Karyn, finish up the exam!" Ok they are not literally screaming, but this is my analogy and it sure feels this way. So maybe you comply and although you are tired you get that one additional final exam done. You take a breath and look away for a spilt second only to find that another one has been slapped down on your desk. I get it that people just want to know and be helpful, but these conversations are so draining for me right now. I have decided that for my sanity I have to become a D student and not answer every question. Underachievement is now my friend because I don't have the energy or knowledge right now. This is hard for an A student to admit (I went through my college - undergraduate and graduate with a 4.0). I will do this for me - it doesn't mean that I don't appreciate others' attempts to be helpful. I just need to think about myself right now in some ways. Self-care. So to do this, I might answer questions if I feel like I can or walk away from the desk and take a breather for a while.
-Karyn
What gets me is epilepsy, of course. Surprised - huh? Not. I don't want to learn about different types of seizures or medication. I don't want to be asked questions over and over again about these topics. It is like being given another final exam after the semester has ended and all you want to do is live it up for the Summer. No, not live it up for the Summer, but at least get some respite, some calm - take a nap at least. And most of all, not have to complete another final exam because you are totally drained. But instead you get another final exam put in front of you on your desk and people just want to know this and that answer. They are screaming at me, "Come on, Karyn, finish up the exam!" Ok they are not literally screaming, but this is my analogy and it sure feels this way. So maybe you comply and although you are tired you get that one additional final exam done. You take a breath and look away for a spilt second only to find that another one has been slapped down on your desk. I get it that people just want to know and be helpful, but these conversations are so draining for me right now. I have decided that for my sanity I have to become a D student and not answer every question. Underachievement is now my friend because I don't have the energy or knowledge right now. This is hard for an A student to admit (I went through my college - undergraduate and graduate with a 4.0). I will do this for me - it doesn't mean that I don't appreciate others' attempts to be helpful. I just need to think about myself right now in some ways. Self-care. So to do this, I might answer questions if I feel like I can or walk away from the desk and take a breather for a while.
-Karyn
Saturday, May 15, 2010
Helpless
Want to feel helpless? Who would? Well, guess what, I do.
The premiere helpless experience thus far - watching your daughter seizure over and over again on and off during a 15-20 minute period of time. Calling her name even though you KNOW this isn't going to do a dang thing, but you desperately want to connect so much that you do this stupidly anyway. Your heart proceeds to break into two. You feel as if these pieces have fallen onto the floor and are at your feet.
This happened to me last night.
Yes, now we know she has developed another type of seizure. Unfortunately I don't know the name of it right now because - guess what, another helpless feeling - I didn't get this information directly to be able to ask this question. Because of the craziness in my life when it comes to work, Neal took care of these appointments. I really appreciate that because I was again helpless in this regard. He, himself, heard the confirmation of seizures at the end of the day. When he called me to tell me and I told him to call back to find out the name, they were of course closing. Another helpless experience - being asked over and over again by people what type of seizure she is having and looking like a mother who doesn't know anything because you have no information on that. The reason you have no information on that is because you didn't take care of that situation yourself. What kind of mother are you? You are a helpless one. How ironic that these seizures started on Mother's Day.
Yet another helpless experience - you tell people the news and they try to say well meaning, encouraging words. I know they mean well, but statements like "things could be worse," "well at least she is starting on medication- that should take care of it," and "it is good that you caught this early" mean nothing to me. Thank you for caring, but truthfully these words are being said more for your benefit than mine. These words don't help me. They make me angry because news flash, they are yet another reminder that I am helpless. Let me elaborate, heck this is my blog, so I can. Who knows - things could get worse - I certainly didn't expect this and it is worse than before and who knows what horrible thing is around the corner. Sorry to be all doom and gloom, but none of us know what the future holds. I obviously want things to work out, but I don't KNOW that. Furthermore, starting the medication does not help stop the feeling of your heart breaking into two when you have to watch your beautiful girl have seizures, in fact it makes you feel worse. Sure, she just started on this medication, but here you are watching her have a seizure and you know she just took her medication and your inner voice screams "WHY?" in your head. With catching this early, how could we not catch this early? It is a bit noticeable that your child is doing something major when she is having a seizure like she is currently having. What we probably sucked in catching was in all types of absence seizures - just little zoning out ones - that she probably has been having. And identifying it doesn't mean you can do anything about it, hence my experience last night.
Instead of these words, I would rather you just cried with me. I would rather you just listen. I would rather just say how you feel about the situation. I would rather you just say that you don't know what to say if that is the case.
I will do what I need to do, don't worry about me. I always do what I need to do. But I just wanted to say that I feel helpless right now. I hope this treatment works. I hope I get more information. I hope in the short run the seizures stop. I am happy that I still have Quinn - that we have moments of clarity, but I fear what is around the corner. I have come to realize that Down syndrome is a blessing. That extra chromosome fills my heart full of love, compassion, and connection. It is because of Down syndrome that I have my Quinn and I would never ever change that. But epilepsy, on the other hand, is a horrific thing that is trying to take away my Quinny. It breaks my heart into two. I am trying to fight it, but deep down I know if it truly wanted to and was intent on winning, I am helpless. I long to be one of those people who has only Down syndrome in their life. But I know that is not my story. Enter stage right, epilepsy.
-Karyn
The premiere helpless experience thus far - watching your daughter seizure over and over again on and off during a 15-20 minute period of time. Calling her name even though you KNOW this isn't going to do a dang thing, but you desperately want to connect so much that you do this stupidly anyway. Your heart proceeds to break into two. You feel as if these pieces have fallen onto the floor and are at your feet.
This happened to me last night.
Yes, now we know she has developed another type of seizure. Unfortunately I don't know the name of it right now because - guess what, another helpless feeling - I didn't get this information directly to be able to ask this question. Because of the craziness in my life when it comes to work, Neal took care of these appointments. I really appreciate that because I was again helpless in this regard. He, himself, heard the confirmation of seizures at the end of the day. When he called me to tell me and I told him to call back to find out the name, they were of course closing. Another helpless experience - being asked over and over again by people what type of seizure she is having and looking like a mother who doesn't know anything because you have no information on that. The reason you have no information on that is because you didn't take care of that situation yourself. What kind of mother are you? You are a helpless one. How ironic that these seizures started on Mother's Day.
Yet another helpless experience - you tell people the news and they try to say well meaning, encouraging words. I know they mean well, but statements like "things could be worse," "well at least she is starting on medication- that should take care of it," and "it is good that you caught this early" mean nothing to me. Thank you for caring, but truthfully these words are being said more for your benefit than mine. These words don't help me. They make me angry because news flash, they are yet another reminder that I am helpless. Let me elaborate, heck this is my blog, so I can. Who knows - things could get worse - I certainly didn't expect this and it is worse than before and who knows what horrible thing is around the corner. Sorry to be all doom and gloom, but none of us know what the future holds. I obviously want things to work out, but I don't KNOW that. Furthermore, starting the medication does not help stop the feeling of your heart breaking into two when you have to watch your beautiful girl have seizures, in fact it makes you feel worse. Sure, she just started on this medication, but here you are watching her have a seizure and you know she just took her medication and your inner voice screams "WHY?" in your head. With catching this early, how could we not catch this early? It is a bit noticeable that your child is doing something major when she is having a seizure like she is currently having. What we probably sucked in catching was in all types of absence seizures - just little zoning out ones - that she probably has been having. And identifying it doesn't mean you can do anything about it, hence my experience last night.
Instead of these words, I would rather you just cried with me. I would rather you just listen. I would rather just say how you feel about the situation. I would rather you just say that you don't know what to say if that is the case.
I will do what I need to do, don't worry about me. I always do what I need to do. But I just wanted to say that I feel helpless right now. I hope this treatment works. I hope I get more information. I hope in the short run the seizures stop. I am happy that I still have Quinn - that we have moments of clarity, but I fear what is around the corner. I have come to realize that Down syndrome is a blessing. That extra chromosome fills my heart full of love, compassion, and connection. It is because of Down syndrome that I have my Quinn and I would never ever change that. But epilepsy, on the other hand, is a horrific thing that is trying to take away my Quinny. It breaks my heart into two. I am trying to fight it, but deep down I know if it truly wanted to and was intent on winning, I am helpless. I long to be one of those people who has only Down syndrome in their life. But I know that is not my story. Enter stage right, epilepsy.
-Karyn
Friday, May 14, 2010
She Had One While I was Holding Her
Sorry, I feel like venting this morning. AS USUAL, I have to go to work even though my world is shaken up and I am wondering what is going on. Why should this time be any different - I had to do that when we received the diagnosis of DS and when we received the diagnosis of IS. Now we are probably going to find out she is having another type of seizure. I am almost certain. I feel it in my heart. I also doubt we will get answers today, but will instead be tormented with this for a week at least. Then the "fun" part comes in and you get to watch these episodes and know that they aren't right and that right now there is absolutely nothing you can do about them. It is so painful and you feel so ineffective as a parent.
Why did these possible seizures have to start on all days, Mother's Day? I just don't get why when our world finally settles down something once again flares up. First my job situation flares up, then I get feeling a little better, and now this. I am in a why-why-why phase, sorry. I could also ask myself why I neglect my blog and then something crappy happens and I just come out of hiding. Oh well. I am a slacker.
Last night Quinn had what I believe and am almost certain must be a seizure while I was holding her. She turned her head. Her eye went strange. She was very tense. I said her name and she wasn't fully there. It is hard to describe, but I just felt like I knew it had to be another seizure. The whole thing was not right. I had this pain in my heart. This was the first time I was up close and personal with it. Otherwise the ones I have witnessed have been when she is playing or moving around.
I am sadly learning that the brain is everything. I was so foolish to worry about the heart, stomach, all these other areas. I can't believe that I neglected to think about the brain.
Please keep Quinn in your thoughts and prayers, hoping we get an answer and she can get some treatment soon.
-Karyn
Why did these possible seizures have to start on all days, Mother's Day? I just don't get why when our world finally settles down something once again flares up. First my job situation flares up, then I get feeling a little better, and now this. I am in a why-why-why phase, sorry. I could also ask myself why I neglect my blog and then something crappy happens and I just come out of hiding. Oh well. I am a slacker.
Last night Quinn had what I believe and am almost certain must be a seizure while I was holding her. She turned her head. Her eye went strange. She was very tense. I said her name and she wasn't fully there. It is hard to describe, but I just felt like I knew it had to be another seizure. The whole thing was not right. I had this pain in my heart. This was the first time I was up close and personal with it. Otherwise the ones I have witnessed have been when she is playing or moving around.
I am sadly learning that the brain is everything. I was so foolish to worry about the heart, stomach, all these other areas. I can't believe that I neglected to think about the brain.
Please keep Quinn in your thoughts and prayers, hoping we get an answer and she can get some treatment soon.
-Karyn
Thursday, May 13, 2010
If You Know About Seizures, PLEASE Read
If you know about seizures, please read this in case you can answer my question...please leave a comment if you have any insight into this. I am in desperate need of information...
Quinn was dx with Infantile Spasms (IS) last year and had tx with ACTH (finished up around Christmas). Things were going well. In the last few days she has started to do something strange. It started just once a day (we noticed it on Mother's Day) and then today she did it three times in a 15 minute period. She turns her head and her eye turns and she seems dazed and stuck there for a bit. Then she is back to normal. She will be going to the doctor tomorrow, but does anyone know anything about this? Can this be another seizure disorder related to IS?
I just don't know what I will do if it is something serious again.
Thanks.
-Karyn
Quinn was dx with Infantile Spasms (IS) last year and had tx with ACTH (finished up around Christmas). Things were going well. In the last few days she has started to do something strange. It started just once a day (we noticed it on Mother's Day) and then today she did it three times in a 15 minute period. She turns her head and her eye turns and she seems dazed and stuck there for a bit. Then she is back to normal. She will be going to the doctor tomorrow, but does anyone know anything about this? Can this be another seizure disorder related to IS?
I just don't know what I will do if it is something serious again.
Thanks.
-Karyn
Sunday, May 9, 2010
Motherhood
I have been neglecting my blog. This semester has been hectic to say the least, but hopefully I will have more time in the Summer to post. I can really feel that I am not writing because I am feeling more stressed. Writing does help with my self care, so I better suck it up and find the time. Plus why have a blog if it is just gathering cyber dust.
As you know, today is Mother's Day. So I woke up this morning having thoughts about what it means to be a mother. I really don't know what I expected in becoming a mother going back to the time before I had that itty bitty dimple faced little baby boy named Riley. Ten years ago I was pregnant with him and didn't really realize how my life would change. I didn't occur to me to even consider what becoming a mother philosophically meant to me. Unfortunately as with most things in my life, I just kind of did it because it was the next thing to do. I had two other moments to think about what becoming a mother meant to me, but I neglected doing that as well when I was pregnant with strong feisty Aidan and my mini-me Quinny. I really didn't get the significance of all these moments and the journey I was embarking on. I kind of wish I could go back and look at this more, really think about what motherhood means to me before the moment of entering it.
Quinn has made me more philosophical. Especially the last year has made me philosophical. Sometimes you are given something unexpected and it alters how you look at the world. So maybe I needed to have Quinn, experience the unsettling feelings of an additional diagnosis of Infantile Spasms, and then I would get the idea to really look at what motherhood means to me. Maybe things come in the order that is best for us and at a time we are truly ready to look at them.
Well these are the things I know...I am not a "traditional" mother (if there is such a thing). But I will do whatever it takes to give my kids what they need. I will fight for treatment. I will sacrifice myself (working long hours when needed) to get them what they need. I cherish my moments with my kids. I have talks with the boys about what it means to be a responsible, loving person and the importance of understanding and embracing diversity. I have started taking care of myself more (yep I know I still work a lot, but I am losing weight) so I can be around longer for my kids. But I am not perfect. I am learning. I am always learning and most of the time I am learning from my kids, both at home and at work.
This past year has been a remarkable one. One of challenge with Quinn's health concerns and the development of Infantile Spasms. One of seeing more and more the reality that all children are not fortunate enough to have a mother who will protect them, guide them, and not hurt them. I have learned a lot through the stories of other people. I have also learned a lot through the story of my own little Quinny. When I was pregnant with her, I was expecting one thing and got another. Just before she turned two, I was expecting her life to progress one way and found out something different yet again. Motherhood is about learning as you go. Adapting. Learning what unconditional love really is. Sometimes embracing a difficult experience because you recognize that you forever changed because of it. Motherhood is about recognizing your need to grow and to learn and sometimes even your need to mother yourself. But it is mostly about the love you feel in your heart when you see your Riley, Aidan, and Quinn sitting side by side. You then realize that they are forever part of you and those little people have influenced you more than anyone else you know.
-Karyn
As you know, today is Mother's Day. So I woke up this morning having thoughts about what it means to be a mother. I really don't know what I expected in becoming a mother going back to the time before I had that itty bitty dimple faced little baby boy named Riley. Ten years ago I was pregnant with him and didn't really realize how my life would change. I didn't occur to me to even consider what becoming a mother philosophically meant to me. Unfortunately as with most things in my life, I just kind of did it because it was the next thing to do. I had two other moments to think about what becoming a mother meant to me, but I neglected doing that as well when I was pregnant with strong feisty Aidan and my mini-me Quinny. I really didn't get the significance of all these moments and the journey I was embarking on. I kind of wish I could go back and look at this more, really think about what motherhood means to me before the moment of entering it.
Quinn has made me more philosophical. Especially the last year has made me philosophical. Sometimes you are given something unexpected and it alters how you look at the world. So maybe I needed to have Quinn, experience the unsettling feelings of an additional diagnosis of Infantile Spasms, and then I would get the idea to really look at what motherhood means to me. Maybe things come in the order that is best for us and at a time we are truly ready to look at them.
Well these are the things I know...I am not a "traditional" mother (if there is such a thing). But I will do whatever it takes to give my kids what they need. I will fight for treatment. I will sacrifice myself (working long hours when needed) to get them what they need. I cherish my moments with my kids. I have talks with the boys about what it means to be a responsible, loving person and the importance of understanding and embracing diversity. I have started taking care of myself more (yep I know I still work a lot, but I am losing weight) so I can be around longer for my kids. But I am not perfect. I am learning. I am always learning and most of the time I am learning from my kids, both at home and at work.
This past year has been a remarkable one. One of challenge with Quinn's health concerns and the development of Infantile Spasms. One of seeing more and more the reality that all children are not fortunate enough to have a mother who will protect them, guide them, and not hurt them. I have learned a lot through the stories of other people. I have also learned a lot through the story of my own little Quinny. When I was pregnant with her, I was expecting one thing and got another. Just before she turned two, I was expecting her life to progress one way and found out something different yet again. Motherhood is about learning as you go. Adapting. Learning what unconditional love really is. Sometimes embracing a difficult experience because you recognize that you forever changed because of it. Motherhood is about recognizing your need to grow and to learn and sometimes even your need to mother yourself. But it is mostly about the love you feel in your heart when you see your Riley, Aidan, and Quinn sitting side by side. You then realize that they are forever part of you and those little people have influenced you more than anyone else you know.
-Karyn
Sunday, April 25, 2010
Quinn, Please Let Me Cuddle With You
I get to spend some time with the kids today. Hopefully I get to hold and cuddle Miss Quinn before she rushes off, crawling around the house - that girl is on the move all the time now.
I have been thinking about just how blessed I am to have Quinn. God gave me the most precious gift possible, my Quinny. I didn't believe this when I was pregnant and we received the diagnosis, but I know this now. I know that Quinn is perfect just the way she is. I am blessed to have her as my daughter. I wish that all those with a prenatal diagnosis who are going through a scary time could know that someday your heart will overflow with love for your child.
A couple of days ago I was reading up on the blogs that I follow and I found out that a beautiful little girl, Carly, that I sometimes check in on through the cyber world had passed away. I don't know what were the circumstances, but Carly's family is in my thoughts and prayers, especially her mother because I have followed her blog postings about the love she has for her daughter. When I learned about the lost of Carly, I knew what I had to do. With tears in my eyes, I went upstairs and tried to hold Quinn, who of course only lasted about 30 seconds in my arms before she had to crawl off to her new adventure. But just that 30 seconds was worth so much. Beautiful beautiful Carly with her smile and her mother who loves her taught me so much in the beginning of my journey towards acceptance of my daughter and the thing she happens to have called Down syndrome. God bless you Carly.
I found this video today and it really shows how having a child with DS and just surround you with love. You want this feeling to last forever, but sadly it doesn't. I have to go try to cuddle with Quinn again.
-Karyn
I have been thinking about just how blessed I am to have Quinn. God gave me the most precious gift possible, my Quinny. I didn't believe this when I was pregnant and we received the diagnosis, but I know this now. I know that Quinn is perfect just the way she is. I am blessed to have her as my daughter. I wish that all those with a prenatal diagnosis who are going through a scary time could know that someday your heart will overflow with love for your child.
A couple of days ago I was reading up on the blogs that I follow and I found out that a beautiful little girl, Carly, that I sometimes check in on through the cyber world had passed away. I don't know what were the circumstances, but Carly's family is in my thoughts and prayers, especially her mother because I have followed her blog postings about the love she has for her daughter. When I learned about the lost of Carly, I knew what I had to do. With tears in my eyes, I went upstairs and tried to hold Quinn, who of course only lasted about 30 seconds in my arms before she had to crawl off to her new adventure. But just that 30 seconds was worth so much. Beautiful beautiful Carly with her smile and her mother who loves her taught me so much in the beginning of my journey towards acceptance of my daughter and the thing she happens to have called Down syndrome. God bless you Carly.
I found this video today and it really shows how having a child with DS and just surround you with love. You want this feeling to last forever, but sadly it doesn't. I have to go try to cuddle with Quinn again.
-Karyn
Saturday, April 10, 2010
What to Say
So much to say, but then again I really have no details to give you.
For the next six weeks (probably more) I am in limbo of what will come of my career - if major changes will be made to my job which could change the direction of my work dramatically or even impact if I have a job. I really hope the "powers that be" make the right decision, but I am not confident. I could say so much more, an unbelievable amount of stuff, but yet I can't.
But on the upside I know from one of my "side jobs" that I will be ok. I could go there full-time if things don't work with this transition at work. That brings happiness in my heart - it is nice to have a plan B and to be wanted, but quite honestly even though there are a lot of politics that I don't like, I love what I do and really don't want this change thrust on me (I want to keep doing what I am doing and not have outsiders determine the direction of my career). If these changes happen, I will know that I will have to grieve a rather large loss and now I wait eternally for the word of what the decision will be. But I will adapt. Quinn has taught me to do that.
It is just a lot of pressure right now because I am the financial supporter of five people (plus one dog). I worry. I try to get my mind off of this. Then I worry again. Plus I have to perform at work and home, so I have to pull myself together in a reasonable fashion to do so. Another lesson I learned from Quinn, from when I received the diagnosis - the first one and then the second one. DS and IS consecutively.
On the up side, I have been successful in doing some things for myself. I am losing weight. A lot of it. Finally I feel healthy - well other than my aching feet from walking a lot the last few days to get some exercise in. Actually I lied, I am not REALLY doing this for myself, more for my family. People laugh when I tell them this, but I am losing weight to not die. Yeah I know that I can't totally fight death, but I can reduce the chances by not being obese. I am the financial supporter of the family, if I die where would that leave things? Plus if I died and then Neal died where would that leave the kids? More specifically where would it leave the boys in caring for Quinn and ultimately Quinn? I can't just assume that even when our kids are in adulthood, things will go fine. Things are just more complicated now than that. Oh on so many levels things are complicated. But in a world where I have very little control, I can control this aspect of my health and I will do so. Otherwise I hang on for a very emotional and tough ride which will take me who knows where. But Quinn taught me that I will be ok, so I will trust her on that.
-Karyn
For the next six weeks (probably more) I am in limbo of what will come of my career - if major changes will be made to my job which could change the direction of my work dramatically or even impact if I have a job. I really hope the "powers that be" make the right decision, but I am not confident. I could say so much more, an unbelievable amount of stuff, but yet I can't.
But on the upside I know from one of my "side jobs" that I will be ok. I could go there full-time if things don't work with this transition at work. That brings happiness in my heart - it is nice to have a plan B and to be wanted, but quite honestly even though there are a lot of politics that I don't like, I love what I do and really don't want this change thrust on me (I want to keep doing what I am doing and not have outsiders determine the direction of my career). If these changes happen, I will know that I will have to grieve a rather large loss and now I wait eternally for the word of what the decision will be. But I will adapt. Quinn has taught me to do that.
It is just a lot of pressure right now because I am the financial supporter of five people (plus one dog). I worry. I try to get my mind off of this. Then I worry again. Plus I have to perform at work and home, so I have to pull myself together in a reasonable fashion to do so. Another lesson I learned from Quinn, from when I received the diagnosis - the first one and then the second one. DS and IS consecutively.
On the up side, I have been successful in doing some things for myself. I am losing weight. A lot of it. Finally I feel healthy - well other than my aching feet from walking a lot the last few days to get some exercise in. Actually I lied, I am not REALLY doing this for myself, more for my family. People laugh when I tell them this, but I am losing weight to not die. Yeah I know that I can't totally fight death, but I can reduce the chances by not being obese. I am the financial supporter of the family, if I die where would that leave things? Plus if I died and then Neal died where would that leave the kids? More specifically where would it leave the boys in caring for Quinn and ultimately Quinn? I can't just assume that even when our kids are in adulthood, things will go fine. Things are just more complicated now than that. Oh on so many levels things are complicated. But in a world where I have very little control, I can control this aspect of my health and I will do so. Otherwise I hang on for a very emotional and tough ride which will take me who knows where. But Quinn taught me that I will be ok, so I will trust her on that.
-Karyn
Monday, April 5, 2010
Cherish the Rests
Yesterday I started to think about something very important. The importance of rests in music. Our pastor helped me get this idea into my head and apply it to Quinn. Rests are the intervals of silence when it comes to music. They are very very important because without them, the song wouldn't be the same. We need rests; we need to recognize them and cherish them, otherwise the song would not be the masterpiece it is. I experience rests with Quinn all the time. These are the intervals of sameness before she acquires some new skill. I need to recognize that these rests are important and cherish them, not trying to rush to the next skill or part of the song.
-Karyn
-Karyn
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