Creed - Weathered
I lie awake on a long, dark night
I can't seem to tame my mind
Slings and arrows are killing me inside
Maybe I can't accept the life that's mine
No I can't accept the life that's mine
Simple living is my desperate cry
Been trading "love" with indifference yeah it suits me just fine
I try to hold on but I'm calloused to the bone
Maybe that's why I feel alone
Maybe that's why I feel alone
Me..I'm rusted and weathered
Barely holding together
I'm covered with skin that peels and it just won't heal
The sun shines and I can't avoid the light
I think I'm holding on to life too tight
Ashes to ashes and dust to dust
Sometimes I feel like giving up
Sometimes I feel like giving up
Me...I'm rusted and weathered
Barely holding together
I'm covered with skin that peels and it just won't heal
The day reminds me of you
The night hides your truth
The earth is a voice
Speaking to you
Take all this pride
And leave it behind
Because one day it ends
One day we die
Believe what you will
That is your right
But I choose to win
So I choose to fight
"One of the saddest yet most comforting things about being a special needs parent? You get more support by those parents like you that are in the hospital, social media and or Ronald McDonald house type thing then you do with most anyone who lives in your own community."
~ Anonymous ~
Oh so true.....
Honestly, I'm exhausted... We just got home from a six night stay in Dallas last night. Monday we found out my nine month old son has a 2mm Chiari Malformation type 1. Totally unexpected that.... Then it was decided that the cranal vault surgery for the bicoronal craniosynostosis will be done slightly differently in hopes that it will "fix" the chiari. I have researched to death about it.... When will I have the innocence that crying or a headache isn't a rational concern that something more is going on? Especially waiting the three months for surgery.... Yet learning that the Chiari will never be "cured" but maybe hopefully "silenced" was hard too....
"Oh you did this before, you can do it again"
Pffftt!! Perhaps yet the chiari definitely changes the journey a bit. I had been warned that just because my two share the same primary diagnosis, don't expect similar journey's with both. His chiari proves that. My daughter doesn't have chiari but does have other diagnoses.
I'm told I'm doing a good job with the kids and I need to realize it. How do I when I'm so out of control in what is going on? How do I get to where I feel like I really am if I can't stop? When my daughter has her asthma acting up or headaches being nasty or when I forgot her ADHD meds? Appointments out my ears, school meetings or concerns being brought to me.... When my infant son is so cranky and nothing is helping? How when I can't help but wonder if the headaches is something more sinister brewing again? How when now with my son he can't tell me what's wrong and he has cranio and chiari fueling each other? How most of all when I am their mother and I can't do anything about what is going wrong or not well? Isn't that my job as a mother to care for my children and to give them the best I can???? How can I do that when I don't know what is going on.......
I'm a veteran of eight years in this journey.....Days have ups and downs. Usually the only ones who ask about the kids are on Facebook and those who do ask around here locally really don't want to hear the truth, just the shiny, pretty, easy parts.... You know... Once you get the beyond "How are you?" "I'm fine how about you?" "Well, I'm okay." Even with people who know you fairly well get a glazed look in their eyes if you share beyond that. Enough glazed eyes as I get asked about the kids and when I tell the simplified truth, I see the eyes glaze over and they are ready to move on.... Most just walk away right then. Even those who I thought really wanted to know the truth. Life isn't always sweet. Period! Just go with the flow and say everything is good even if it's not. That's what most want to hear..... What if I'm not really okay today? Would you really want to know that? Would you still say you will be there for me if I really share the truth? Know all or none. Don't be lukewarm! I totally get those who don't understand but instead of running away, at least try to reach out. Despite the news in Dallas, being there to one extent was a reprieve..... In a way....
Sometimes I feel like rest will never come..... Sometimes I feel burnout despite that no matter what, life keeps going. I will say this though, my children will always be worth it. Other days like this week in Dallas, I was very thankful for those at the Ronald McDonald House with me who totally understood the journey. Of course no journey is exactly the same but many of the same feelings and thoughts are there.... The biggest being "What if..." or "When will..."
http://www.healthline.com/health/guide-dealing-stress-caring-child-special-needs
"Studies have shown that the extra burden on parents raising special-needs children is extreme. Researchers at the University of Wisconsin discovered that mothers of adolescents with autism experience a level of chronic stress comparable to combat soldiers. What's more, a separate study found that mothers who reared children with special needs for over a decade decreased their life expectancy by up to 12 years."
I'd wager that this would fit for much more then the parents of children with Autism and fit for many families of our special children as well.
"Many parents of special-needs children place huge pressures on themselves that add to their stress. Some examples include:
The hardest things for me at least is:
1. Asking for help
2. Having faith that someone will REALLY want to help AND will seek to understand so therefore we can be understood. (Rare it feels)
3. Trusting enough to give up control over what I at least perceive that I can control.... God will always be working with me on that one.....
What I need to remember the most is this:
The pieces we see today
The pieces we see after our journey here is finished.
(Artwork credit to Medical City Children's Hospital. Yes I took both to post here.)
Every single little piece (picture) will eventually come together to create something bigger and more beautiful as a big picture. The darkest pieces are some of the darkest, most lonely times in our journey. The whitest from some of the best and everything in between. I wonder what this journey will have created by the time it is all over....
May God continue to show me.... May his patience with me be everlasting....
I'm going to end this post with some laughs. I LOVE this page.
http://www.facebook.com/shutuapboutyourperfectkid/posts/10153174318237889
Never lose the faith no matter how dim life seems in the moment, it will get better.... We all just have to hang on for the ride and see who can hang on with us through it. Look at it like this, at least we can have fun watching how funny some look falling off our ride that was given to us. I just pray that we ourselves don't..... And if we do, it doesn't hurt too badly to get back up and keep going.... We have no other choice....
~ Special Momma ~
I lie awake on a long, dark night
I can't seem to tame my mind
Slings and arrows are killing me inside
Maybe I can't accept the life that's mine
No I can't accept the life that's mine
Simple living is my desperate cry
Been trading "love" with indifference yeah it suits me just fine
I try to hold on but I'm calloused to the bone
Maybe that's why I feel alone
Maybe that's why I feel alone
Me..I'm rusted and weathered
Barely holding together
I'm covered with skin that peels and it just won't heal
The sun shines and I can't avoid the light
I think I'm holding on to life too tight
Ashes to ashes and dust to dust
Sometimes I feel like giving up
Sometimes I feel like giving up
Me...I'm rusted and weathered
Barely holding together
I'm covered with skin that peels and it just won't heal
The day reminds me of you
The night hides your truth
The earth is a voice
Speaking to you
Take all this pride
And leave it behind
Because one day it ends
One day we die
Believe what you will
That is your right
But I choose to win
So I choose to fight
"One of the saddest yet most comforting things about being a special needs parent? You get more support by those parents like you that are in the hospital, social media and or Ronald McDonald house type thing then you do with most anyone who lives in your own community."
~ Anonymous ~
Oh so true.....
Honestly, I'm exhausted... We just got home from a six night stay in Dallas last night. Monday we found out my nine month old son has a 2mm Chiari Malformation type 1. Totally unexpected that.... Then it was decided that the cranal vault surgery for the bicoronal craniosynostosis will be done slightly differently in hopes that it will "fix" the chiari. I have researched to death about it.... When will I have the innocence that crying or a headache isn't a rational concern that something more is going on? Especially waiting the three months for surgery.... Yet learning that the Chiari will never be "cured" but maybe hopefully "silenced" was hard too....
"Oh you did this before, you can do it again"
Pffftt!! Perhaps yet the chiari definitely changes the journey a bit. I had been warned that just because my two share the same primary diagnosis, don't expect similar journey's with both. His chiari proves that. My daughter doesn't have chiari but does have other diagnoses.
I'm told I'm doing a good job with the kids and I need to realize it. How do I when I'm so out of control in what is going on? How do I get to where I feel like I really am if I can't stop? When my daughter has her asthma acting up or headaches being nasty or when I forgot her ADHD meds? Appointments out my ears, school meetings or concerns being brought to me.... When my infant son is so cranky and nothing is helping? How when I can't help but wonder if the headaches is something more sinister brewing again? How when now with my son he can't tell me what's wrong and he has cranio and chiari fueling each other? How most of all when I am their mother and I can't do anything about what is going wrong or not well? Isn't that my job as a mother to care for my children and to give them the best I can???? How can I do that when I don't know what is going on.......
I'm a veteran of eight years in this journey.....Days have ups and downs. Usually the only ones who ask about the kids are on Facebook and those who do ask around here locally really don't want to hear the truth, just the shiny, pretty, easy parts.... You know... Once you get the beyond "How are you?" "I'm fine how about you?" "Well, I'm okay." Even with people who know you fairly well get a glazed look in their eyes if you share beyond that. Enough glazed eyes as I get asked about the kids and when I tell the simplified truth, I see the eyes glaze over and they are ready to move on.... Most just walk away right then. Even those who I thought really wanted to know the truth. Life isn't always sweet. Period! Just go with the flow and say everything is good even if it's not. That's what most want to hear..... What if I'm not really okay today? Would you really want to know that? Would you still say you will be there for me if I really share the truth? Know all or none. Don't be lukewarm! I totally get those who don't understand but instead of running away, at least try to reach out. Despite the news in Dallas, being there to one extent was a reprieve..... In a way....
Sometimes I feel like rest will never come..... Sometimes I feel burnout despite that no matter what, life keeps going. I will say this though, my children will always be worth it. Other days like this week in Dallas, I was very thankful for those at the Ronald McDonald House with me who totally understood the journey. Of course no journey is exactly the same but many of the same feelings and thoughts are there.... The biggest being "What if..." or "When will..."
http://www.healthline.com/health/guide-dealing-stress-caring-child-special-needs
"Studies have shown that the extra burden on parents raising special-needs children is extreme. Researchers at the University of Wisconsin discovered that mothers of adolescents with autism experience a level of chronic stress comparable to combat soldiers. What's more, a separate study found that mothers who reared children with special needs for over a decade decreased their life expectancy by up to 12 years."
I'd wager that this would fit for much more then the parents of children with Autism and fit for many families of our special children as well.
"Many parents of special-needs children place huge pressures on themselves that add to their stress. Some examples include:
- "I must give 100% to my special-needs child all the time or I am a failure as a parent."
- "I should always put the needs of my special-needs child above my own needs."
- "I should feel guilty if I take a break from my caregiving responsibilities."
The hardest things for me at least is:
1. Asking for help
2. Having faith that someone will REALLY want to help AND will seek to understand so therefore we can be understood. (Rare it feels)
3. Trusting enough to give up control over what I at least perceive that I can control.... God will always be working with me on that one.....
What I need to remember the most is this:
The pieces we see today
The pieces we see after our journey here is finished.
(Artwork credit to Medical City Children's Hospital. Yes I took both to post here.)
Every single little piece (picture) will eventually come together to create something bigger and more beautiful as a big picture. The darkest pieces are some of the darkest, most lonely times in our journey. The whitest from some of the best and everything in between. I wonder what this journey will have created by the time it is all over....
May God continue to show me.... May his patience with me be everlasting....
I'm going to end this post with some laughs. I LOVE this page.
http://www.facebook.com/shutuapboutyourperfectkid/posts/10153174318237889
Never lose the faith no matter how dim life seems in the moment, it will get better.... We all just have to hang on for the ride and see who can hang on with us through it. Look at it like this, at least we can have fun watching how funny some look falling off our ride that was given to us. I just pray that we ourselves don't..... And if we do, it doesn't hurt too badly to get back up and keep going.... We have no other choice....
~ Special Momma ~
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