It's been a long semester for the 2011-2012 school year for so many reasons. I have often questioned my sanity on working on a doctoral degree while working full time and having a child that needs extra care at home. We have been on a roller coaster ride this semester with our youngest. So far we have had one western blot test positive for Lyme and one other test negative for the disease. The problem as I believe it is that we live in an area where Lyme disease is not that common, so no one has seen chronic lyme. They are still looking for everything else that it could be instead of treating her for what it most likely is. I know I am not a medical doctor, but my heart tells me that this is what it is. I have done copious amounts of research over the past couple of years about Lyme, so I am not uninformed. I just don't know why it has to be so hard to receive the treatment that we need. It is frustrating; however, I have learned many things throughout these past few years.
I have decided over the past few years that I have no answers for anything. I just know that every day we have to get up and face what the day brings. When you think about it, isn't that what we all have to do anyway. Sometimes, we are blessed with a child that moves amazingly well and speaks clearly and others the opposite of those are true. Sometimes, the day is full of little wonders and others it feels like all I can do is claw my way through. Sometimes I am ready to face the world head on and others I just want to put my head back under the pillows and try again the next day.
This semester has been trying in so many ways. I am knee deep in my dissertation with still another year of conducting research and writing to go. This degree on top of everything else has pushed me to the limit. There are points where I have felt like I have done nothing but lived and breathed school--whether it is for the job that pays or for the degree that I am working on. It makes me laugh as I write that as our oldest daughter has always accused us of doing nothing but talking about school at home. But right now it feels different. This year I am facing perhaps the most challenging group of students I have ever faced. I see so much potential and for the first time ever I do not know how to break through to them. This group has made me question why I am in the teaching profession. Maybe it is everything else that is piled on my plate right now. I feel like sometimes I am not able to give anyone the complete attention they deserve--not my students, not my doctoral work, and not my family.
Maybe this is what I am learning with our trials within our home--everything else is material. The time that I spend with my family is what makes me who I am. I was thinking about this tonight as I was reading to the 15-year old. She loved to read. She excelled at reading. Lyme disease has taken away her ability to do so. It's not that she can't read. It's that she physically can't hold the book and turn the pages. For Christmas this year she was given a gift card to Barnes and Nobles. She wanted to spend it on books. I took her shopping yesterday and wheeled her around as she squealed at all the book she really wants. Last night when we got home I began reading one of them out loud to her. She loves it when I read to her. She always has, but there hasn't been time--I haven't made time. I thought about how unfair it was to have her pick out books that she would have a hard time reading but that she so desperately wanted to read. So I am making time to read. She reminded me again tonight about the book that we started last night and that it was time to read. I can remember my own mother reading to us even up until we were secondary school.
Perhaps I need to learn to let go some and remember to enjoy the little things--like reading out loud, like relishing the moments I get to spend with my family and friends. If I let myself, I could drown in the frustrations that I have felt this semester. Maybe I just need to remember to come to the surface and relish in the world around me instead of letting it close in around me.
Thursday, December 22, 2011
Monday, August 8, 2011
Mending a Broken Heart
My father and mother raised two daughters. Without a son around the house to teach the stereotypical male duties, my father tried to teach both my sister and I. I was an avid learner and now as an adult I find myself attempting to all kinds of handyman type things around the house. Some endeavors are way more successful than others, but it is something I enjoy doing. When I examine my personality, I realize that is what I do. I try to fix things. Someone comes to me with a problem and I listen and then offer solutions. Someone brings me an object that is broken, I try to fix it. It is just what I do.
The hard part for me is when I cannot fix something. Failure is something that I do not take well. As a result I will work something until it is near perfection. This is part of the reason, I believe, that my daughter's illness has been so hard for me. I cannot fix it. I cannot take away the hurt and guilt that I feel or that my spouse feels. I cannot take the Lyme disease out of my child's body. That feeling of helplessness eats away at me. Sometimes I just want to scream. If my role is to fix things and now I cannot, what do I do now?
I know there are a great many things that are out of our control. I know the platitudes that God will not give us anything that we cannot handle and that it is not our place to question why. I know, I know. But it does not stop the hurt, anger, and feeling of being inadequate from settling into my gut every now and then. I have decided that I have to feel those emotions when they come to me. To stifle them is to deny everything. To feel them is to remember that I am simply an individual faced with a daunting journey. It reminds me that I am human.
Having a child with special needs has changed everything in our world and those emotions remind me of the rawness that comes with it. However, I have come to believe that as a family we have become stronger. Our world has grown smaller and yet so much larger at the same time. I am not even sure that makes sense to anyone but me. With the bad comes the good. There is nothing that will melt my heart faster than hearing my child tell me, "I love you." She has such an amazing spirit. She always has. It is often through her example that I am able to let go of the rage that sometimes boils inside of me. She laughs hard and just takes what comes her way with a smile on her face. Perhaps I can learn from her grace and embrace the spirit.
The hard part for me is when I cannot fix something. Failure is something that I do not take well. As a result I will work something until it is near perfection. This is part of the reason, I believe, that my daughter's illness has been so hard for me. I cannot fix it. I cannot take away the hurt and guilt that I feel or that my spouse feels. I cannot take the Lyme disease out of my child's body. That feeling of helplessness eats away at me. Sometimes I just want to scream. If my role is to fix things and now I cannot, what do I do now?
I know there are a great many things that are out of our control. I know the platitudes that God will not give us anything that we cannot handle and that it is not our place to question why. I know, I know. But it does not stop the hurt, anger, and feeling of being inadequate from settling into my gut every now and then. I have decided that I have to feel those emotions when they come to me. To stifle them is to deny everything. To feel them is to remember that I am simply an individual faced with a daunting journey. It reminds me that I am human.
Having a child with special needs has changed everything in our world and those emotions remind me of the rawness that comes with it. However, I have come to believe that as a family we have become stronger. Our world has grown smaller and yet so much larger at the same time. I am not even sure that makes sense to anyone but me. With the bad comes the good. There is nothing that will melt my heart faster than hearing my child tell me, "I love you." She has such an amazing spirit. She always has. It is often through her example that I am able to let go of the rage that sometimes boils inside of me. She laughs hard and just takes what comes her way with a smile on her face. Perhaps I can learn from her grace and embrace the spirit.
Tuesday, July 26, 2011
The Beginning
There are moments in our lives that define who we are. This is not something new. All one has to do is look within themselves to find this essential truth. However, it is what we do within those moments that make us who we are. I have often tried to put into words the past four years and have failed miserably. It still amazes me that for one whose words have flowed so freely in the past, it is strange to have found those very words locked behind the dam of the moments of my life. There are times when it is all I can do is remember to breathe and yet, somehow, life continues to move onward while I cling to it with all that I have within me.
My world was irrevocably changed in 2007. The change involved a seizure and a death. Although neither one happened to the same person, the effects on me have been tremendous. I can still think back to that summer and then that Thanksgiving and say with certainty that those were the two moments that have defined my life. There have lots of other moments in between--some good, some bad, some even great--but when I trace back to the time when my life was forever altered, I can tell you that it began in the summer of 2007. Don't get me wrong there have been other life changing moments. The day I met the person that I love with all my life, the day that "yes, I will marry you" was declared, the day that was chosen for the "I'm really going to stick around and make this work with you"--all defining moments. I am a better person for them. I am me because of them. I am complete because of them. I am stronger because of them. But there is just something about 2007 that altered my mentality, my belief system in so many ways.
My youngest daughter had her first seizure in July of 2007. We had just returned from a fourteen-day camping trip in Otter Creek, Utah. We had good times there. We met my aunts and uncles from California and Tennessee. We camped, we swam, we fished, we hiked, and we rode four wheelers. We laughed and we communed. We picked up two puppies there that came home with us, and, even though we didn't know it then--in fact we wouldn't know it until three years later--my youngest child picked up Lyme disease there.
I have often wondered if I knew now about what we would be going through, if I would have changed anything about the trip. Would I refuse to go? I honestly don't know. I would not wish the medical journey that we have been on with our youngest on anyone, but what, if anything, would I have done differently. We were always vigilant. The girls were always sprayed with insect repellent. Every night we checked ourselves for bug bites and ticks. This wasn't our first camping experience. In fact, we had always been avid campers and hikers. I will forever kick myself for missing the bite that brought this disease into our family.
But would I have changed anything? I honestly don't know. It was the last time I saw my uncle from Tennessee. It was also the last trip that we took with my father. My dad and his remaining two brothers got to spend time together, which was rare, as they all lived in such different places. My father was happy there. He loved to fish. He did not always catch anything, but he loved the activity However while he was there, he caught an abundance of fish. He and his brothers would go off to fish and then come back with lots of fish and big grins. I would have taken him back there in a heartbeat, just so he could have that experience again. Little did we know at that time there was a tumor that was growing in his lungs that in the process of removing and recovering from that would take his life and take him away from us.
Around Thanksgiving of 2007, he had surgery to remove the tumor. The surgery was successful, however his recovery was not. Within a couple days of the surgery, he developed double pneumonia and his blood quickly became septic and his body quickly shut down. I held his hand as he was hooked up to wires and monitors and was unconscious. I told him that if he needed to go, I understood and that I would always make sure that my mother was taken care of and then I watched as his life left his body.
The moments after that, much like the first time I watched my daughter have a seizure, have been forever burned into my memory. I started telling myself that if I could just make it to the next second, I could get through and I could bring my family through with me. Little did I know at that time just how often I would need to repeat that phrase or how often I would need to just stop and breathe.
Over the course of time, I need to tell the journey of my daughter's journey with Lyme disease. This is the other parent's point of view. We have discovered over the course of the last two years that one parent tends to become the main caretaker while the other parent has to define new roles within the family dynamic. That has been my journey. What is my role? I am constantly trying to figure out where I fit in? How do I hold the family together in the course of heartache and joy? How do I hold everyone together and myself at the same time?
My world was irrevocably changed in 2007. The change involved a seizure and a death. Although neither one happened to the same person, the effects on me have been tremendous. I can still think back to that summer and then that Thanksgiving and say with certainty that those were the two moments that have defined my life. There have lots of other moments in between--some good, some bad, some even great--but when I trace back to the time when my life was forever altered, I can tell you that it began in the summer of 2007. Don't get me wrong there have been other life changing moments. The day I met the person that I love with all my life, the day that "yes, I will marry you" was declared, the day that was chosen for the "I'm really going to stick around and make this work with you"--all defining moments. I am a better person for them. I am me because of them. I am complete because of them. I am stronger because of them. But there is just something about 2007 that altered my mentality, my belief system in so many ways.
My youngest daughter had her first seizure in July of 2007. We had just returned from a fourteen-day camping trip in Otter Creek, Utah. We had good times there. We met my aunts and uncles from California and Tennessee. We camped, we swam, we fished, we hiked, and we rode four wheelers. We laughed and we communed. We picked up two puppies there that came home with us, and, even though we didn't know it then--in fact we wouldn't know it until three years later--my youngest child picked up Lyme disease there.
I have often wondered if I knew now about what we would be going through, if I would have changed anything about the trip. Would I refuse to go? I honestly don't know. I would not wish the medical journey that we have been on with our youngest on anyone, but what, if anything, would I have done differently. We were always vigilant. The girls were always sprayed with insect repellent. Every night we checked ourselves for bug bites and ticks. This wasn't our first camping experience. In fact, we had always been avid campers and hikers. I will forever kick myself for missing the bite that brought this disease into our family.
But would I have changed anything? I honestly don't know. It was the last time I saw my uncle from Tennessee. It was also the last trip that we took with my father. My dad and his remaining two brothers got to spend time together, which was rare, as they all lived in such different places. My father was happy there. He loved to fish. He did not always catch anything, but he loved the activity However while he was there, he caught an abundance of fish. He and his brothers would go off to fish and then come back with lots of fish and big grins. I would have taken him back there in a heartbeat, just so he could have that experience again. Little did we know at that time there was a tumor that was growing in his lungs that in the process of removing and recovering from that would take his life and take him away from us.
Around Thanksgiving of 2007, he had surgery to remove the tumor. The surgery was successful, however his recovery was not. Within a couple days of the surgery, he developed double pneumonia and his blood quickly became septic and his body quickly shut down. I held his hand as he was hooked up to wires and monitors and was unconscious. I told him that if he needed to go, I understood and that I would always make sure that my mother was taken care of and then I watched as his life left his body.
The moments after that, much like the first time I watched my daughter have a seizure, have been forever burned into my memory. I started telling myself that if I could just make it to the next second, I could get through and I could bring my family through with me. Little did I know at that time just how often I would need to repeat that phrase or how often I would need to just stop and breathe.
Over the course of time, I need to tell the journey of my daughter's journey with Lyme disease. This is the other parent's point of view. We have discovered over the course of the last two years that one parent tends to become the main caretaker while the other parent has to define new roles within the family dynamic. That has been my journey. What is my role? I am constantly trying to figure out where I fit in? How do I hold the family together in the course of heartache and joy? How do I hold everyone together and myself at the same time?
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