In just 16 days Luke and our good friend Will, are riding 100 miles in the Sea Otter Classic. This is our First Maddie's Mob official event. We are busy training, making race gear and painting race support signs. Should be a beautiful day and a great ride for them both. Come on out and support them as they ride through beautiful Monterey County on April 21st.
It will also mark the unveiling of our official Maddie's Mob logo and web site. The Madelyn Spence Foundation is officially a non-profit corporation in the state of California. We are working on becoming federally recognized as a non-profit, establishing our non-profit bank account and finalizing our business plan. All of these things will come and once they do, hopefully so will your support of time and donations!
We miss our baby girl so much but are blessed to have a focus that allows us to share her and honor memory by helping other families in need.
Thursday, April 5, 2012
Monday, February 13, 2012
Trend CDH Babies #cdhbabies
March 31st and April 19th are both quickly approaching. And they are both CDH awareness day. We have two because we have more then one national support organization. This is important to you because I'm going to teach you to use Twitter.
Twitter works by connecting people who update their 140 character status about whatever is on their mind. Their updates are tracked and when enough people start talking about something, it becomes a "Trend". Trends are followed by all major news outlets, celebrities, and thousands of average people just like me and you. Major editorial decisions about what the world wide media will report that evening are often based off of trends. It takes about 100,000 mentions to start a trend, depending on what is major news that day.
My vision is that #cdhbabies will become a top US 10 trend on March 31st and the top international trend of April 19th. I am asking you to help by committing to post #cdhbabies on your twitter account at least once an hour throughout the day on March 31st. We need 10,000 twitter accounts to do this for 12 hours to set a trend. Obviously, posting more often will help. Reposting this blog or your own version of it is going to be key to pulling this off. preserving the hashmark: #cdhbabies is essential to making this work. And having a Twitter account.
See ideas listed below.
"personal statement"+"website or call to action"+"#cdhbabies"=Successful Twitter post
Examples:
"I love my survivor. See what you can do to help cdhsupport.com #cdhbabies"
"800 babies are lost each year. Help stop CDH by reposting #cdhbabies"
"My daughter is a CDH angel. Learn more about CDH http://www.breathofhopeinc.com/ #cdhbabies"
Twitter works by connecting people who update their 140 character status about whatever is on their mind. Their updates are tracked and when enough people start talking about something, it becomes a "Trend". Trends are followed by all major news outlets, celebrities, and thousands of average people just like me and you. Major editorial decisions about what the world wide media will report that evening are often based off of trends. It takes about 100,000 mentions to start a trend, depending on what is major news that day.
My vision is that #cdhbabies will become a top US 10 trend on March 31st and the top international trend of April 19th. I am asking you to help by committing to post #cdhbabies on your twitter account at least once an hour throughout the day on March 31st. We need 10,000 twitter accounts to do this for 12 hours to set a trend. Obviously, posting more often will help. Reposting this blog or your own version of it is going to be key to pulling this off. preserving the hashmark: #cdhbabies is essential to making this work. And having a Twitter account.
See ideas listed below.
"personal statement"+"website or call to action"+"#cdhbabies"=Successful Twitter post
Examples:
"I love my survivor. See what you can do to help cdhsupport.com #cdhbabies"
"800 babies are lost each year. Help stop CDH by reposting #cdhbabies"
"My daughter is a CDH angel. Learn more about CDH http://www.breathofhopeinc.com/ #cdhbabies"
Sunday, January 22, 2012
Knowing God
Months ago, I wrote about the Crisis of Faith this past year, especially Maddie's death, has caused in my life. And I'm not sure it's completely over yet, but for the moment, my faith is restored.
Before you shout Amen or roll your eyes (just depends on your perspective), I want to stress that God and I have been working really hard on this together. And the nature of my faith has changed - drastically - and will likely continue to evolve for years to come.
In reading CS Lewis book, A Grief Observed and Angie Smith's I Will Carry You, I was livid. Both are wonderful books and a must read during your lifetime, even if you don't know intense grief yet. But both authors refer to having a crisis of faith, both doubt God, both get mad at Him and both are restored. What made me mad was that there was no story in their restoration. They didn't explain or expound or give me anything of the logistics of their renewal in God and in their salvation.
I have tried to bridge that gap. In this blog, in my conversations and in the book I have written in my head (but not put onto paper so don't get excited), I have tried to explain the hard parts that are usually skipped in narratives. The parts that are hard to write, hard to read and hard to explain. I may fail, but I try.
Unfortunately, I can't even try this time. My faith literally came back in an instant. It took years for me to start to consider myself a "follower" of Christ, months of crisis to lose my faith and months of living with doubt, no hope and an overly healthy sense of cynicism for me to just realize that God is here.
NOthing spectacular happened. I suddenly just found that I could legitimately pray again. I could hear God's word and nothing feel slighted by it. I could sing the words of a praise song - and I mean sing. It just happened.
I don't understand why Maddie lived and died like she did. And i will continue to ask. I don't know why God didn't answer our prayers with her but do recognize all of the hundreds of thousands of times my prayers have been answered, including during Maddie's life and since she passed.
My hope as I've searched for Jesus these past months is that if my faith came back, it would come back strong enough to stand. I feel as though I have replaced a house of straw with a foundation of brick. i have laid one, maybe two bricks upon that foundation but they are solid.
I know that a fair amount of my readers are staunch atheist and that is ok with me. I firmly believe that if Jesus sought me (twice) and helped me believe in salvation (twice), that I'm either crazy or He is doing what He needs to do with you, even if you never call it faith or salvation or Christ. It may just be your ingrained ability to love and a live a moral life. Never the less, whatever you have going on spiritually or otherwise, I am open to so long as you continue to read with an open mind and heart and allow me to express myself honestly.
I know that a fair amount of my readers are very Christian and believe 99% of the dogma that comes with the territory. And thats ok too. I did, probably still do in a lot of ways I don't recognize. I do ask that you take the time to be as the Berans and challenge yourself and your small group. God does not answer all prayers, He does not work all things out for our good. Questioning God, challenging Him, asking Him why do not hurt his feelings or cause Him to abandon us. He does love us and He does work things out for His good. Praying is about spending time with God and trying to align yourself with His heart and His will. I have more to say on this issue but recognize that my soap box is bigger then I can handle right this second.
Before you shout Amen or roll your eyes (just depends on your perspective), I want to stress that God and I have been working really hard on this together. And the nature of my faith has changed - drastically - and will likely continue to evolve for years to come.
In reading CS Lewis book, A Grief Observed and Angie Smith's I Will Carry You, I was livid. Both are wonderful books and a must read during your lifetime, even if you don't know intense grief yet. But both authors refer to having a crisis of faith, both doubt God, both get mad at Him and both are restored. What made me mad was that there was no story in their restoration. They didn't explain or expound or give me anything of the logistics of their renewal in God and in their salvation.
I have tried to bridge that gap. In this blog, in my conversations and in the book I have written in my head (but not put onto paper so don't get excited), I have tried to explain the hard parts that are usually skipped in narratives. The parts that are hard to write, hard to read and hard to explain. I may fail, but I try.
Unfortunately, I can't even try this time. My faith literally came back in an instant. It took years for me to start to consider myself a "follower" of Christ, months of crisis to lose my faith and months of living with doubt, no hope and an overly healthy sense of cynicism for me to just realize that God is here.
NOthing spectacular happened. I suddenly just found that I could legitimately pray again. I could hear God's word and nothing feel slighted by it. I could sing the words of a praise song - and I mean sing. It just happened.
I don't understand why Maddie lived and died like she did. And i will continue to ask. I don't know why God didn't answer our prayers with her but do recognize all of the hundreds of thousands of times my prayers have been answered, including during Maddie's life and since she passed.
My hope as I've searched for Jesus these past months is that if my faith came back, it would come back strong enough to stand. I feel as though I have replaced a house of straw with a foundation of brick. i have laid one, maybe two bricks upon that foundation but they are solid.
I know that a fair amount of my readers are staunch atheist and that is ok with me. I firmly believe that if Jesus sought me (twice) and helped me believe in salvation (twice), that I'm either crazy or He is doing what He needs to do with you, even if you never call it faith or salvation or Christ. It may just be your ingrained ability to love and a live a moral life. Never the less, whatever you have going on spiritually or otherwise, I am open to so long as you continue to read with an open mind and heart and allow me to express myself honestly.
I know that a fair amount of my readers are very Christian and believe 99% of the dogma that comes with the territory. And thats ok too. I did, probably still do in a lot of ways I don't recognize. I do ask that you take the time to be as the Berans and challenge yourself and your small group. God does not answer all prayers, He does not work all things out for our good. Questioning God, challenging Him, asking Him why do not hurt his feelings or cause Him to abandon us. He does love us and He does work things out for His good. Praying is about spending time with God and trying to align yourself with His heart and His will. I have more to say on this issue but recognize that my soap box is bigger then I can handle right this second.
Tuesday, January 17, 2012
Harmony, Unity and Health
Several years ago, a friend died in Kuwait on his way into Iraq. It was a horribly tragic accident which devastated a lot of people, especially his family. I was able to serve his family as the causality assistance officer, basically a liaison between the family and the Army. His family were members of a small catholic church, his best friend's family the members of a large baptist church. This is in a small Mennonite town. Sounds like the beginning to a great joke, but i swear i'm coming around to a point in this narrative.
Because it was a small town and his family is/was well liked and respected, we expected upwards of a 1000 people to attend the funeral. Clearly too many for his small church to accommodate. The baptist church was willing to host, but was still a little too small. So the pastor of the baptist church and the priest of the catholic church, together with other local leaders, convinced the elders of the Mennonite church to allow a catholic service to be held in their sanctuary. If you know anything about these three sects of Christianity, just about the only thing they have in common is Christ.
Despite their very different points of views and closely held ideologies, they were able to come together as one body in Christ to honor my friend and serve his family. It was one of the most amazing acts of true Christian behavior I have ever witnessed and served as a powerful testimony of Christ's love to everyone.
Since deciding 2 weeks ago to start a foundation in Maddie's memory, I have been reminded multiple times that many CDH organizations already exist. Why would I want to go to the trouble of starting my own just to spend my time and effort doing something that someone else already does and probably does better?
My best answer is that it's important to me to feel like I'm actively doing something positive with this loss and doing it in a way I wish it had been done for my family. My other answer is that we are all one community under the CDH, sick baby, sick child, deceased child umbrella. To me, it doesn't matter if I raise $500 for CDH families or if someone else does, so long as that $500 is being raised and used to help each other.
More to the point, the Madelyn Spence Foundation may only participate in one sporting event. We may only do one fundraiser. We may only help one family establish a benevolence fund. And after that, we may fizzle out and dissolve into nothingness. Or, less likely, we may become the biggest nonprofit in the world and raise millions upon millions of dollars. I imagine that most nonprofits that start, just like most businesses that start, last for 3 years or less.
But I firmly believe that during those 3 years, we can all serve as force multipliers for each other, spreading the message, raising awareness and hopefully increasing funds for the nonprofits that stick around for the long haul. Much like the three small churches finding ways to work together and support their community, I am hopeful that Maddie's Mob can achieve the same sense of harmony and unity with other nonprofits when and if appropriate.
I also wanted to address my health - I was discharged from the partial hospitalization treatment program last week and feel like a new woman. I am optimistic again. I am focused again. I have a hope and a joy and a belief in the future that was missing for far too long. When the time came where something was going to give and I was sure it was going to be my life and/or my sanity, I am so thankful that this treatment plan was an option. It truly saved my life as well as my marriage and my health.
I am now considered an out patient, meaning lots of medical appointments and medication adjustments but no acute behavior health problems. Dealing with "real life" for almost a week now, I would go further and say I am a much healthier and happier person then I was even before Maddie's death and getting better every day.
Because it was a small town and his family is/was well liked and respected, we expected upwards of a 1000 people to attend the funeral. Clearly too many for his small church to accommodate. The baptist church was willing to host, but was still a little too small. So the pastor of the baptist church and the priest of the catholic church, together with other local leaders, convinced the elders of the Mennonite church to allow a catholic service to be held in their sanctuary. If you know anything about these three sects of Christianity, just about the only thing they have in common is Christ.
Despite their very different points of views and closely held ideologies, they were able to come together as one body in Christ to honor my friend and serve his family. It was one of the most amazing acts of true Christian behavior I have ever witnessed and served as a powerful testimony of Christ's love to everyone.
Since deciding 2 weeks ago to start a foundation in Maddie's memory, I have been reminded multiple times that many CDH organizations already exist. Why would I want to go to the trouble of starting my own just to spend my time and effort doing something that someone else already does and probably does better?
My best answer is that it's important to me to feel like I'm actively doing something positive with this loss and doing it in a way I wish it had been done for my family. My other answer is that we are all one community under the CDH, sick baby, sick child, deceased child umbrella. To me, it doesn't matter if I raise $500 for CDH families or if someone else does, so long as that $500 is being raised and used to help each other.
More to the point, the Madelyn Spence Foundation may only participate in one sporting event. We may only do one fundraiser. We may only help one family establish a benevolence fund. And after that, we may fizzle out and dissolve into nothingness. Or, less likely, we may become the biggest nonprofit in the world and raise millions upon millions of dollars. I imagine that most nonprofits that start, just like most businesses that start, last for 3 years or less.
But I firmly believe that during those 3 years, we can all serve as force multipliers for each other, spreading the message, raising awareness and hopefully increasing funds for the nonprofits that stick around for the long haul. Much like the three small churches finding ways to work together and support their community, I am hopeful that Maddie's Mob can achieve the same sense of harmony and unity with other nonprofits when and if appropriate.
I also wanted to address my health - I was discharged from the partial hospitalization treatment program last week and feel like a new woman. I am optimistic again. I am focused again. I have a hope and a joy and a belief in the future that was missing for far too long. When the time came where something was going to give and I was sure it was going to be my life and/or my sanity, I am so thankful that this treatment plan was an option. It truly saved my life as well as my marriage and my health.
I am now considered an out patient, meaning lots of medical appointments and medication adjustments but no acute behavior health problems. Dealing with "real life" for almost a week now, I would go further and say I am a much healthier and happier person then I was even before Maddie's death and getting better every day.
Subscribe to:
Posts (Atom)