I know I keep abandoning this blog. I don't mean to. Thank you, Lee, for reminding me I have one and for your kind words. Your words were honestly an answered prayer that day.
I'd like to catch everyone up on all that's going on, but honestly I'm simply just overwhelmed by my life. I know many people in my life think I'm strong and I can handle everything, but I've kind of had my limit recently. I'm not super mom. My marriage is crumbling and I'm coming up on the 15th anniversary of Cienna's terminal diagnosis, her 18th birthday, and the 15th anniversary of her death are around the corner. Right now I'm just telling myself "fake it until you make it" when really I'd like to curl up in a ball in my warm bed and just cry. I'm also wondering what the hell I was thinking trying to train for a marathon that is December 2. I've got a 20 mile training run on my to do list for Monday and I barely have the energy to function. Really... what WAS I thinking?
I'm just praying for God to ease my sad heart and help me through this challenging time. Grief sucks! I miss my daughter and all the memories and milestones we should have had together.
Just trying to survive the day.
F is doing great. He registered to vote and is super excited about the election. I'll try to write about that later. I couldn't be more proud of him.
Showing posts with label grief. Show all posts
Showing posts with label grief. Show all posts
Thursday, November 1, 2012
Tuesday, April 17, 2012
Being married is hard…Even harder with special needs child
Being married is hard. It's a life of compromise and acceptance. As couples grow together they change and grow as individuals from the life they experience together. There can be stresses of money, bills, parenting, schedules, work, just making time for one another, and the normal duties around the home. These "normal" marital circumstances have been the cause of more than one divorce.
From where I stand looking at the world around me, it seems that couples manage to keep things together and happy by investing in their relationship. They have common ground in their likes and interests. They plan for their families together. They spend time together doing things away from their kids. Many couples have date nights and weekends away. I think it helps keep them close.
Our family has division. It's a divide and conquer process. There are no date nights. There are no weekends away together. There are nights that we divide our time between one child or another covering each child's activities. There are weekends away with the one child who travels for trips or swim meets etc. There is no bonding couple time. There is no working on our relationship. There is no us time. There is division.
I'm not really sure how we've managed to coexist and keep our family intact. I think that the two of us still enjoy each other's company, although we have grown into two very different people than who we were when we entered this relationship. I'd say how we've grown, and who we've become, has a lot to do with how each of us has dealt with the circumstances which we've been given. I know normal married couples grow and change as they grow old and raise a family together and sometimes finding their common ground is challenging too, this is not unique to my marriage. What is unique to my marriage is all the unspoken stuff.
When I say unspoken stuff I mean, how we cope with the turmoil of emotions that surround the loss of our daughter and the challenges and struggles brought into our lives by our son's disabilities. The emotional baggage and heartache that comes with those two things. I think we've both made the best of it through the years, but there is so much that we don't speak about. Each of us copes very differently based on our personalities and who we've grown into as adults. They do not mesh for more than a moment hear or there. At times, it's almost too painful to speak of. Other times each of us are in two different places that don't mesh. There is anger and resentment at times. There's resolve to make the most of what we have. There is just being plain grateful to have life and experiences. But they rarely, if ever, come at the same time. That husband of mine is the only person who knows what I've lost along this journey and how painful it has been and the price each of us has paid. There is no explanation necessary for random tears. I think at times the random anger is mistaken as being directed at the other... but that can be due to what is mistaken for normal marital stress and discord.
It's like the continental divide in my home the majority of the time. So much unsaid business... the good and the bad. Yet it is our common ground. Now throw all that other regular marriage baggage on top of it and you've got a recipe for disaster. Yet here we are 25 years later still plugging along... but we've reached a place in that divide where the gap needs to close and it seems almost impossible.
From where I stand looking at the world around me, it seems that couples manage to keep things together and happy by investing in their relationship. They have common ground in their likes and interests. They plan for their families together. They spend time together doing things away from their kids. Many couples have date nights and weekends away. I think it helps keep them close.
Our family has division. It's a divide and conquer process. There are no date nights. There are no weekends away together. There are nights that we divide our time between one child or another covering each child's activities. There are weekends away with the one child who travels for trips or swim meets etc. There is no bonding couple time. There is no working on our relationship. There is no us time. There is division.
I'm not really sure how we've managed to coexist and keep our family intact. I think that the two of us still enjoy each other's company, although we have grown into two very different people than who we were when we entered this relationship. I'd say how we've grown, and who we've become, has a lot to do with how each of us has dealt with the circumstances which we've been given. I know normal married couples grow and change as they grow old and raise a family together and sometimes finding their common ground is challenging too, this is not unique to my marriage. What is unique to my marriage is all the unspoken stuff.
When I say unspoken stuff I mean, how we cope with the turmoil of emotions that surround the loss of our daughter and the challenges and struggles brought into our lives by our son's disabilities. The emotional baggage and heartache that comes with those two things. I think we've both made the best of it through the years, but there is so much that we don't speak about. Each of us copes very differently based on our personalities and who we've grown into as adults. They do not mesh for more than a moment hear or there. At times, it's almost too painful to speak of. Other times each of us are in two different places that don't mesh. There is anger and resentment at times. There's resolve to make the most of what we have. There is just being plain grateful to have life and experiences. But they rarely, if ever, come at the same time. That husband of mine is the only person who knows what I've lost along this journey and how painful it has been and the price each of us has paid. There is no explanation necessary for random tears. I think at times the random anger is mistaken as being directed at the other... but that can be due to what is mistaken for normal marital stress and discord.
It's like the continental divide in my home the majority of the time. So much unsaid business... the good and the bad. Yet it is our common ground. Now throw all that other regular marriage baggage on top of it and you've got a recipe for disaster. Yet here we are 25 years later still plugging along... but we've reached a place in that divide where the gap needs to close and it seems almost impossible.
Sunday, February 5, 2012
February 5, 2012... 14 years ago
Today is the anniversary of my daughter, Cienna's death. Can someone please pinch me? I just cannot believe it's been that long. Cienna's birthday was January 18. I wonder what she would be like at this age. Would she be driving, planning prom, starting to think about college... ? You just can't help but wonder about those things.
My friend asked me if I had hope, hope that I would see her again. To which I replied, "I know I will see her again." I have no doubts. I know I will. My greatest sadness isn't that she is gone or that I have to wait to see her until my time comes. My greatest sadness is that I have lived two lives.
My first life was with Cienna, F, and R. We had a great life together even if we didn't reside under the same roof for most of it. We had that job transfer and stupid house that we tried to sell that put a wedge in our time together. I will never forget those three years Cienna lived. They are so cherished and near and dear to my heart. There are moments I can perfectly recall. They take me back in time.
My second life has a different blond haired girl in it. The age difference between F and C is seven years. They didn't build a relationship and become close until the last four years of homeschooling. I took up running and began to be more active because C was and is a very active child. She is a competitive swimmer. She loves to play outside. She is a complete tomboy. Even my relationship with my husband is different than it was when Cienna was alive. The only constant from that previous life is F. He is my one consistency. I love him for that. He helps ground me to that previous life.
I would not trade either these two lives for anything. Even knowing that I would only have one daughter for a short time. My daughters have helped shape me into who I am today. It just saddens me so deeply that I have two family photos. It's like Cienna was erased. Each passing year removes me further and further from my time with Cienna. I'm okay with sadness that overwhelms me at times. It's really a small price to pay having loved her with my whole heart. I just want time to be kinder to my memories.
written 2/5/2012
My friend asked me if I had hope, hope that I would see her again. To which I replied, "I know I will see her again." I have no doubts. I know I will. My greatest sadness isn't that she is gone or that I have to wait to see her until my time comes. My greatest sadness is that I have lived two lives.
My first life was with Cienna, F, and R. We had a great life together even if we didn't reside under the same roof for most of it. We had that job transfer and stupid house that we tried to sell that put a wedge in our time together. I will never forget those three years Cienna lived. They are so cherished and near and dear to my heart. There are moments I can perfectly recall. They take me back in time.
My second life has a different blond haired girl in it. The age difference between F and C is seven years. They didn't build a relationship and become close until the last four years of homeschooling. I took up running and began to be more active because C was and is a very active child. She is a competitive swimmer. She loves to play outside. She is a complete tomboy. Even my relationship with my husband is different than it was when Cienna was alive. The only constant from that previous life is F. He is my one consistency. I love him for that. He helps ground me to that previous life.
I would not trade either these two lives for anything. Even knowing that I would only have one daughter for a short time. My daughters have helped shape me into who I am today. It just saddens me so deeply that I have two family photos. It's like Cienna was erased. Each passing year removes me further and further from my time with Cienna. I'm okay with sadness that overwhelms me at times. It's really a small price to pay having loved her with my whole heart. I just want time to be kinder to my memories.
written 2/5/2012
Wednesday, February 1, 2012
Introduction
It starts with the title. I've been given a lot of lemons. There are times when I feel a whole truck load has been dropped off at my house. I've had to make a lot of lemonade. I feel like I am constantly making the best of things. Porcupine because advocating for my son has resulted in me becoming outright prickly to get things accomplished. Professionals talk a good talk. If I am not careful I can head down a path that I don't want to be on. It can be distracting from my goal. It becomes a matter of focus.
I'm in my early 40's. I have two children. I have had three. I've been married to my husband for 25 years. Although my husband and I have stayed married our relationship, for many, many reasons has been up and down and very rocky. At times, I'll admit almost at complete meltdown almost beyond repair. We've lived apart for periods of time throughout our relationship, but have managed many times to pull it together. We have had more than our fair share of heartbreak, heartache, and tragedy together and it hasn't always made us stronger... but we are working on it.
In 1993, our first child was born healthy and suffered an illness shortly after birth. This illness forever changed the course of our lives. Our son F, had encephalitis as a newborn resulting in severe brain damage and disabilities. In 1995, our second child, Cienna, was born healthy and shortly after her birth, three weeks to be exact, she was diagnosed with bilateral retinoblastoma. A rare children's cancer of the eye. She would only live to the age of three years and eighteen days.
Losing Cienna to cancer was and still is my greatest tragedy. I think I can speak for my son and husband and say it was for them as well. Cienna was our joy. She helped put F's disabilities into perspective. Losing her caused all three of us to lose a part of ourselves. It would be a long time before we stopped just going through the motions of life.
Then after two years of grief, we stepped back into living again. It began on February 22, 2000, when our daughter, C, was born. From the very first day she came into our lives she was a ball of energy, vibrant, and full of life... and HEALTHY! LIfe has been a whirlwind journey ever since.
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