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 marriage. Show all posts
Showing posts with label marriage. 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 12, 2012
Parents of Children with Special Needs
Sometime ago when I was really struggling and blue, I was given a kind gesture by a friend. It was a grief workbook/journal. I realize that this friend has the best of intentions, and unlike most people, she acted on them. It is really a rare occasion when a friend reaches out to me. I'm sure it's just plain awkward for people. They don't and can't relate; therefore, it's hard for them to even begin to think of what they could say or do. So doing nothing is the easiest choice. Well this friend did something. She brought this grief workbook to me. I flipped through the book. It's quite a workbook. Covers all the stages of grief that a person goes through. To this day it sits on the shelf and hasn't been cracked since the day she delivered it. I never intend to crack it. I DISLIKE workbooks. I don't care to ever read another book on grief. That was so 14 years ago. But the point is she did something, but didn't know what to do.
I don't really struggle with grief. Grief rears it's ugly head periodically through my life. It wreaks havoc and leaves. It's a rolling hill up and down. That's how grief is. I no longer grieve over the lost hopes and dreams I had for my son. To do so would be a disservice to him. He is who he is. I love him just as he is. I can honestly say I wouldn't change him if I had the power to do so. He has helped shape me into who I am. He has changed my perspective on so many things. I wish I could change the things that bother him about himself, for him, not me... make sense?
What I struggle with is being overwhelmed. Overwhelmed by his care. Overwhelmed by the fact that there are times when leaving the house and buying groceries is a monumental task. Overwhelmed trying to keep up with all of his needs educationally and medically. I am overwhelmed by the isolation. I'm overwhelmed by the juggling of duties. I'm overwhelmed that I can't maintain friendships very easily. I am overwhelmed by the fact the stress could take years off my life. I'm overwhelmed that I'm having bad hair, because I can't get time in my schedule to get to the hairdresser. I am overwhelmed by the strain it puts on my marriage, because it's hard for his dad to live this secluded life. Yet, my friend thought I was overwhelmed with loss. She couldn't be farther from the target. I'm just stressed and overwhelmed. So in the process of trying to help her understand I did a little research. I came across these websites and articles about raising a special needs child. They were quite enlightening.
I have copied and pasted them just as I sent them to her in an email. I think there was some part of each one that captured a piece of my struggle. I hope there may be a piece that could help someone else educate about their struggles raising a special needs child.
http://www.abilitypath.org/love-laugh--live/stress-relationships/coping/articles/mothers-of-children-with-special-needs-and-combat-soldiers.html
http://psychcentral.com/news/2009/02/19/parental-stress-with-special-needs-children/4219.html
http://www-e.openu.ac.il/geninfor/openletter/ol17/12-14.pdf
http://www.post-gazette.com/pg/07129/784323-114.stm
http://www.webmd.com/balance/stress-management/caregiver-advice-cope
http://www.and-so-i-write.com/2010/07/do-parents-of-special-needs-kids-invoke-self-isolation/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1403651/?page=3
http://severedisabilitykid.blogspot.com/2011/01/dear-new-parent.html – I love this... My favorite lines are “And no matter which choice you make, someone will tell you that you are wrong.Then you will lose many friends, and some family.”
If that last one couldn't be more true. I've had friends tell me I'm wrong. I'm wrong for how I handle situations. Wrong for how I handle my stress. Wrong for not putting myself out there so that others will be more open to helping me. It all comes down to the fact that the burden falls on me to make it easier for other people. Well guess what? I'M TIRED!!!
I don't really struggle with grief. Grief rears it's ugly head periodically through my life. It wreaks havoc and leaves. It's a rolling hill up and down. That's how grief is. I no longer grieve over the lost hopes and dreams I had for my son. To do so would be a disservice to him. He is who he is. I love him just as he is. I can honestly say I wouldn't change him if I had the power to do so. He has helped shape me into who I am. He has changed my perspective on so many things. I wish I could change the things that bother him about himself, for him, not me... make sense?
What I struggle with is being overwhelmed. Overwhelmed by his care. Overwhelmed by the fact that there are times when leaving the house and buying groceries is a monumental task. Overwhelmed trying to keep up with all of his needs educationally and medically. I am overwhelmed by the isolation. I'm overwhelmed by the juggling of duties. I'm overwhelmed that I can't maintain friendships very easily. I am overwhelmed by the fact the stress could take years off my life. I'm overwhelmed that I'm having bad hair, because I can't get time in my schedule to get to the hairdresser. I am overwhelmed by the strain it puts on my marriage, because it's hard for his dad to live this secluded life. Yet, my friend thought I was overwhelmed with loss. She couldn't be farther from the target. I'm just stressed and overwhelmed. So in the process of trying to help her understand I did a little research. I came across these websites and articles about raising a special needs child. They were quite enlightening.
I have copied and pasted them just as I sent them to her in an email. I think there was some part of each one that captured a piece of my struggle. I hope there may be a piece that could help someone else educate about their struggles raising a special needs child.
http://www.abilitypath.org/love-laugh--live/stress-relationships/coping/articles/mothers-of-children-with-special-needs-and-combat-soldiers.html
http://psychcentral.com/news/2009/02/19/parental-stress-with-special-needs-children/4219.html
http://www-e.openu.ac.il/geninfor/openletter/ol17/12-14.pdf
http://www.post-gazette.com/pg/07129/784323-114.stm
http://www.webmd.com/balance/stress-management/caregiver-advice-cope
http://www.and-so-i-write.com/2010/07/do-parents-of-special-needs-kids-invoke-self-isolation/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1403651/?page=3
http://severedisabilitykid.blogspot.com/2011/01/dear-new-parent.html – I love this... My favorite lines are “And no matter which choice you make, someone will tell you that you are wrong.Then you will lose many friends, and some family.”
If that last one couldn't be more true. I've had friends tell me I'm wrong. I'm wrong for how I handle situations. Wrong for how I handle my stress. Wrong for not putting myself out there so that others will be more open to helping me. It all comes down to the fact that the burden falls on me to make it easier for other people. Well guess what? I'M TIRED!!!
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