October 23, 2009
“God, who creates and preserves all things, should make Jesus perfect through suffering.” ~Hebrews 2:10
In this verse the author of Hebrews tells us the natural order of suffering. Not even Jesus, God’s own son, was immune from it’s grips. In matters of the human experience we are all bound to experience levels of suffering.
Depression, mental illness, are labels inflicted on may to describe a human level of suffering and the darkness of the depths of depression. Hopelessness and unrest exemplify the human experience and embody the meaning of the word suffering. The only difference in diagnosis and the human experience it represents is the name humans, medical professionals, put on it.
To be so uncomfortable is a feeling human nature rails against. Of late, with my own mental illness, I have tried to embrace such darkness. I am learning, though often with barred knuckles, the humility and acceptance that is a part of who I have been created to be in order to be one with Jesus. I don’t like suffering and resist it’s grip. I don’t volunteer for the experience no matter how close it brings me to my creator. But I do know that in my own darkness Jesus allows me to be one with him. As a creation, perfect in it’s human flaws and the experience of darkness, Jesus comforts me.
When reading further in Hebrews the author speaks these words,
“And now He [Jesus] can help those who are tempted, because he himself was tempted and suffered.” ~ Hebrews 2:18
The temptation is to run away, but we can learn lessons from Jesus’ own experience. We may have been made to experience the darkness of suffering nestled deep within the human soul, but we are not made to do it alone.
Friday, October 23, 2009
Wednesday, October 21, 2009
Questions Lead Me to More Questions
October 15, 2009
This morning I am sitting in a hotel room in beautiful Syracuse, NY. The sun is shinning brightly, a sharp contrast to yesterday’s rainy, cool bleakness. I feel a sense of hope, surrounded by Syracuse University. I am excited to be among a community of learners, I am comfortable, a simple word that conveys a deep feeling within me.
This is where questions are asked without judgment and celebration occurs with the discovery of answers. I am at home surrounded by teachers and students. The atmosphere is one of acceptance, excitement even. I am impressed by the effort made by the staff in making me feel welcome by carving out precious time to meet with me. I feel important and even courted!
As I was reflecting on my daily meditation I am once again reminded of God’s promise in the book of Luke. “Ask and you will receive; seek and you will find; knock and the door will be opened to you.” ~Luke 11:9. I have lately been asking, seeking and knocking. This is a period of transition for me, my children are growing toward greater independence, my marriage is changing, and my interests are expanding. I have so many questions.
The quest for answers has let me to further my education and I have been investigating higher education as an option for the next half of my professional life. Syracuse University is where God has let me today, just for today, to ask. In their search for answers students and teachers alike discover the answer to the challenging questions of social justice. In my search for answers, I have been expanding my understanding of disability across lifespan; How community attitude plays a role in acceptance, how to change policy and law to give persons with disability opportunity to succeed and be productive members of society, how fear plays a role in blocking an attitude of acceptance, where to best put my efforts in order to affect change, what are the strategies that work and those that don’t , when are individuals and community ready to make needed change.
In my search I have asked these questions: How do we create “Schools of Promise” where all students are included, belong and have equal opportunity to learn? Where are we with regard to inclusive practices in higher education? How can we make the system better? Should government be involved in reviewing medical decisions involving persons with disability? Where are we in education since the Brown vs. The Board of Education decision that guaranteed all students regardless of disability the right to public education? Why are people with disabilities still the largest group of unemployed citizens? How can we position health care in such a way it doesn’t discriminate against those that are forced to use it? Why do we still see disability as something that we cannot relate to and affects the “other” person? Will we ever put in place policies and practices that value the contribution of all persons regardless of their limitations? Are we really that much different?
I am not sure I will get the answers to all these questions and each time I ask one question I come up with five more I didn’t ask. When the asking, seeking, and knocking are done, then I know I have done all I could!
This morning I am sitting in a hotel room in beautiful Syracuse, NY. The sun is shinning brightly, a sharp contrast to yesterday’s rainy, cool bleakness. I feel a sense of hope, surrounded by Syracuse University. I am excited to be among a community of learners, I am comfortable, a simple word that conveys a deep feeling within me.
This is where questions are asked without judgment and celebration occurs with the discovery of answers. I am at home surrounded by teachers and students. The atmosphere is one of acceptance, excitement even. I am impressed by the effort made by the staff in making me feel welcome by carving out precious time to meet with me. I feel important and even courted!
As I was reflecting on my daily meditation I am once again reminded of God’s promise in the book of Luke. “Ask and you will receive; seek and you will find; knock and the door will be opened to you.” ~Luke 11:9. I have lately been asking, seeking and knocking. This is a period of transition for me, my children are growing toward greater independence, my marriage is changing, and my interests are expanding. I have so many questions.
The quest for answers has let me to further my education and I have been investigating higher education as an option for the next half of my professional life. Syracuse University is where God has let me today, just for today, to ask. In their search for answers students and teachers alike discover the answer to the challenging questions of social justice. In my search for answers, I have been expanding my understanding of disability across lifespan; How community attitude plays a role in acceptance, how to change policy and law to give persons with disability opportunity to succeed and be productive members of society, how fear plays a role in blocking an attitude of acceptance, where to best put my efforts in order to affect change, what are the strategies that work and those that don’t , when are individuals and community ready to make needed change.
In my search I have asked these questions: How do we create “Schools of Promise” where all students are included, belong and have equal opportunity to learn? Where are we with regard to inclusive practices in higher education? How can we make the system better? Should government be involved in reviewing medical decisions involving persons with disability? Where are we in education since the Brown vs. The Board of Education decision that guaranteed all students regardless of disability the right to public education? Why are people with disabilities still the largest group of unemployed citizens? How can we position health care in such a way it doesn’t discriminate against those that are forced to use it? Why do we still see disability as something that we cannot relate to and affects the “other” person? Will we ever put in place policies and practices that value the contribution of all persons regardless of their limitations? Are we really that much different?
I am not sure I will get the answers to all these questions and each time I ask one question I come up with five more I didn’t ask. When the asking, seeking, and knocking are done, then I know I have done all I could!
Tuesday, October 13, 2009
Call to Action - Part 1
“Be strong and courageous and do the work. Don’t be afraid or discouraged by the size of the task for the Lord God, my God is with you. He will not fail you or forsake you. He will see to it that all the work related to the temple of the Lord is finished correctly.”
~1Cronicles 28:20
These are words spoken by King David to his son Solomon as he was instructed to complete the task David started: to finish the Temple to house the Ark of the Covenant. God had instructed David to gather all the materials, each carefully selected and stored. But David was not to build the temple, that task would be left to his son. David recognized that Solomon would need words of encouragement if her were to complete this daunting task. Solomon would need to know that if he continued with the task god had instructed him to do; god would give him the strength and courage to follow it to completion.
How many times do we need this same encouragement? Many! Beginning something that seems big, with an uncertain outcome can be frightening. To be fearful is a normal reaction to an unfamiliar task. We ask ourselves, “How will I ever manage to complete this? Am I really supposed to do this?” Our typical response is to stop the progress, to run away, to quit, giving up. Wee justify our actions by claiming, “I wasn’t supposed to do that anyway. Someone else can do it better. I just don’t have the time.” We allow our fear to take over; we forget that if God is with us, if we are doing god’s work in our lives he will give us the strength to follow our plans to completion.
If tragedy, illness, or poor choices come into our lives God offers us hope. He recognizes being human is often difficult. Life can place some very challenging situations in our path: death, illness, disability, divorce. We will often make mistakes in the way we choose to handle these situations. We become absorbed by the self and we forget we are to do God’s work. If life is falling apart, God gives us a way out. We are responsible to rebuild our lives. God gives us all the tools to do that. He wants us to value ourselves and build a “Temple” in which he can dwell.
God also asks us to build temples in community. God didn’t leave David or Solomon to do the enormous task in front of them alone. He gave them thousands of followers to do the task. Each individual person was to play a vital role in bringing the task to completion. I am seeking to build a temple within my community. It has become my vocation to work toward the betterment of the lives of those with disability. For too long they and their families have lived in social isolation, being rejected in the communities of church, work and school. Those with disability and their families long to participate in activities with others, however physical and attitudinal barriers often keep them from doing so. As a parent of a child with a disability and inclusion specialist I have experienced these things in my own life as I struggle to participate. What is preventing your workplace, school, or church from designing fully inclusive environments that honor individual differences?
We can remember and use the instructions David gave his son Solomon as he was instructing him on how to build the temple. We can be assured that God will see to it that the work we set out to do in service to him will be finished correctly. We can be assured as we go out in service to God and work to build our lives, communities, churches and schools to be temples in which God resides that: “Every part of this plan… was given to me in writing from the hand of the Lord.” ~1Chronicles 28:19
~1Cronicles 28:20
These are words spoken by King David to his son Solomon as he was instructed to complete the task David started: to finish the Temple to house the Ark of the Covenant. God had instructed David to gather all the materials, each carefully selected and stored. But David was not to build the temple, that task would be left to his son. David recognized that Solomon would need words of encouragement if her were to complete this daunting task. Solomon would need to know that if he continued with the task god had instructed him to do; god would give him the strength and courage to follow it to completion.
How many times do we need this same encouragement? Many! Beginning something that seems big, with an uncertain outcome can be frightening. To be fearful is a normal reaction to an unfamiliar task. We ask ourselves, “How will I ever manage to complete this? Am I really supposed to do this?” Our typical response is to stop the progress, to run away, to quit, giving up. Wee justify our actions by claiming, “I wasn’t supposed to do that anyway. Someone else can do it better. I just don’t have the time.” We allow our fear to take over; we forget that if God is with us, if we are doing god’s work in our lives he will give us the strength to follow our plans to completion.
If tragedy, illness, or poor choices come into our lives God offers us hope. He recognizes being human is often difficult. Life can place some very challenging situations in our path: death, illness, disability, divorce. We will often make mistakes in the way we choose to handle these situations. We become absorbed by the self and we forget we are to do God’s work. If life is falling apart, God gives us a way out. We are responsible to rebuild our lives. God gives us all the tools to do that. He wants us to value ourselves and build a “Temple” in which he can dwell.
God also asks us to build temples in community. God didn’t leave David or Solomon to do the enormous task in front of them alone. He gave them thousands of followers to do the task. Each individual person was to play a vital role in bringing the task to completion. I am seeking to build a temple within my community. It has become my vocation to work toward the betterment of the lives of those with disability. For too long they and their families have lived in social isolation, being rejected in the communities of church, work and school. Those with disability and their families long to participate in activities with others, however physical and attitudinal barriers often keep them from doing so. As a parent of a child with a disability and inclusion specialist I have experienced these things in my own life as I struggle to participate. What is preventing your workplace, school, or church from designing fully inclusive environments that honor individual differences?
We can remember and use the instructions David gave his son Solomon as he was instructing him on how to build the temple. We can be assured that God will see to it that the work we set out to do in service to him will be finished correctly. We can be assured as we go out in service to God and work to build our lives, communities, churches and schools to be temples in which God resides that: “Every part of this plan… was given to me in writing from the hand of the Lord.” ~1Chronicles 28:19
Saturday, September 26, 2009
Giving up the Fight
Most recently I was reading a writer’s interpretation of the Prayer of Jabez. Hidden in one of the bible’s briefest biographies is the story of a man determined to be a gimper for God. A gimper is someone that does a little more than what is expected or required. Jabez was such a person. He prayed a little more that what was expected, what was required and God expanded his purpose as a result.
In the reading today, I noticed that in his final request: “Oh… keep me from evil,” Jabez is asking to be kept out of the fight. In a culture consumed with competition this seems an odd request. Don’t we want to win the fight? Shouldn't’t we “fight the good fight"? How can we possibly stop fighting, our freedoms will be lost, our streets will be unsafe, our lives will be threatened or lost. But God calls us to take a different path. Like Jabez, he asks us to stay away from the competition that threatens to consume us in the modern way of living.
We are familiar with stories of patients fighting their illness, or people fighting for their rights. Our courts are filled with fighting plaintiffs and armed defendants standing ready. Our county continues to ask us to fight for our freedom. What exactly has all this fighting gotten us?
We stand angry at school doors ready to attach the very people that can help. We stand ready in courtrooms to defend our rights condemning our offenders to imprisonment. We stand armed on battlefields ready to shoot, killing and maiming our enemy. We stand ready in hospital beds ready putting up or armor, shielding us from death.
All this fighting has taken a toll on our bodies, minds and even more importantly our spirits. We no longer accept the difficulties of our lives with God’s helping hand because we are too busy spraying our bullets at our opponent.
In Alcoholics Anonymous one is told to “cease fighting anything and anyone…” The recovering alcoholic learns to lay down his weapons of defense, he is able to surrender, and give over his life to a higher power that has the ability to take away the desire to drink. We can learn many lessons from the recovering alcoholic as well as Jabez. God calls us to stay away from evil forces, those that threaten our sanity, our dignity and our lives.
Fighting always, always implies a winner and a looser. Someone comes in first, someone comes in last. In the lions den a warrior knows he cannot afford to come last. The key is to stay out of the lions den in the first place. If you don’t show up for the fight, there can be no fight. The opponent is forced to go home.
Sometimes there are situations when you cannot avoid the conflict. God is not asking us to bow before anyone or anything that is causing harm or injury. He is asking us to avoid the evil thoughts and places if we can that will lead us to defensiveness and evil. He is asking us to surrender our power to him, the only one that has the power to defend us. He is asking us to not go it alone, thinking we are the only hope for our children, our country, our families and ourselves. He compels us to rely solely on Him to rid us of our competitive nature. With God there are no winners and losers, no better or worse, no either or. With the power of God there is only rest, strength, acceptance. We are compelled to live as Jabez did, staying away from evil and being a gimper for God's work.
In the reading today, I noticed that in his final request: “Oh… keep me from evil,” Jabez is asking to be kept out of the fight. In a culture consumed with competition this seems an odd request. Don’t we want to win the fight? Shouldn't’t we “fight the good fight"? How can we possibly stop fighting, our freedoms will be lost, our streets will be unsafe, our lives will be threatened or lost. But God calls us to take a different path. Like Jabez, he asks us to stay away from the competition that threatens to consume us in the modern way of living.
We are familiar with stories of patients fighting their illness, or people fighting for their rights. Our courts are filled with fighting plaintiffs and armed defendants standing ready. Our county continues to ask us to fight for our freedom. What exactly has all this fighting gotten us?
We stand angry at school doors ready to attach the very people that can help. We stand ready in courtrooms to defend our rights condemning our offenders to imprisonment. We stand armed on battlefields ready to shoot, killing and maiming our enemy. We stand ready in hospital beds ready putting up or armor, shielding us from death.
All this fighting has taken a toll on our bodies, minds and even more importantly our spirits. We no longer accept the difficulties of our lives with God’s helping hand because we are too busy spraying our bullets at our opponent.
In Alcoholics Anonymous one is told to “cease fighting anything and anyone…” The recovering alcoholic learns to lay down his weapons of defense, he is able to surrender, and give over his life to a higher power that has the ability to take away the desire to drink. We can learn many lessons from the recovering alcoholic as well as Jabez. God calls us to stay away from evil forces, those that threaten our sanity, our dignity and our lives.
Fighting always, always implies a winner and a looser. Someone comes in first, someone comes in last. In the lions den a warrior knows he cannot afford to come last. The key is to stay out of the lions den in the first place. If you don’t show up for the fight, there can be no fight. The opponent is forced to go home.
Sometimes there are situations when you cannot avoid the conflict. God is not asking us to bow before anyone or anything that is causing harm or injury. He is asking us to avoid the evil thoughts and places if we can that will lead us to defensiveness and evil. He is asking us to surrender our power to him, the only one that has the power to defend us. He is asking us to not go it alone, thinking we are the only hope for our children, our country, our families and ourselves. He compels us to rely solely on Him to rid us of our competitive nature. With God there are no winners and losers, no better or worse, no either or. With the power of God there is only rest, strength, acceptance. We are compelled to live as Jabez did, staying away from evil and being a gimper for God's work.
Sunday, September 20, 2009
The Power of Others to Demonstrate God's Healing Presence During Times of Illness
"As it happened, Publius' father was ill with fever and dysentery. Paul went in and prayed for him, and laying his hands on him, he healed him. Then all the other sick people on the island came and were cured." ~Acts 28:8-9
What does healing look like?
Who are the people called to be prayer angels while laying their hands on us? Experiencing a recent illness, I am very aware of the faith that is required to trust God's grace during this period of uncertainty and physical and emotional unrest. It is especially during times of illness that we are closest to God, relying on his strength.
In this passage God gives us the instructions for getting back to wellness (whatever that looks like for each individual, and often only revealed to us looking back.)
God calls us to:
Trust his judgment while we rely on others. Theses periods when we do not get to experience total health and wellness we are to rely on those who love and care for us to be “God with skin on.” He asks us to lift our voices to the heavens while keeping our feet planted firmly on the earth. Sometimes that is all our loved ones can remind us to do. God says, "Others are sent remind you I am there."
God asks of us:
To rely on the power of healing touch. Physical touch is one of the most powerful social wellness tools we can bring out of our tool box of solutions. It invites us to be in community with others in our time of suffering. Allowing others to put their hands on us requires a certain vulnerability most are uncomfortable with. God says again, “Ask others to give healing touch in your life.”
It is through the power of spiritual connectedness with God and others in our lives that our physical and emotional selves experience the healing that Paul demonstrated in this gospel. We must not fear going to God as Publius' father did with openness, willingness and a faithful heart. We must become faithful, willing and open asking God to send us people to become a healing presence in our life. Experience the healing touch of God's own hands through the physical presence of others.
What does healing look like?
Who are the people called to be prayer angels while laying their hands on us? Experiencing a recent illness, I am very aware of the faith that is required to trust God's grace during this period of uncertainty and physical and emotional unrest. It is especially during times of illness that we are closest to God, relying on his strength.
In this passage God gives us the instructions for getting back to wellness (whatever that looks like for each individual, and often only revealed to us looking back.)
God calls us to:
Trust his judgment while we rely on others. Theses periods when we do not get to experience total health and wellness we are to rely on those who love and care for us to be “God with skin on.” He asks us to lift our voices to the heavens while keeping our feet planted firmly on the earth. Sometimes that is all our loved ones can remind us to do. God says, "Others are sent remind you I am there."
God asks of us:
To rely on the power of healing touch. Physical touch is one of the most powerful social wellness tools we can bring out of our tool box of solutions. It invites us to be in community with others in our time of suffering. Allowing others to put their hands on us requires a certain vulnerability most are uncomfortable with. God says again, “Ask others to give healing touch in your life.”
It is through the power of spiritual connectedness with God and others in our lives that our physical and emotional selves experience the healing that Paul demonstrated in this gospel. We must not fear going to God as Publius' father did with openness, willingness and a faithful heart. We must become faithful, willing and open asking God to send us people to become a healing presence in our life. Experience the healing touch of God's own hands through the physical presence of others.
The Power of Others to Demonstrate Gods Healing Presence During Times of Illness
"As it happened, Publius' father was ill with fever and dysentery. Paul went in and prayed for him, and laying his hands on him, he healed him. Then all the other sick people on the island came and were cured." ~Acts 28:8-9
What does healing look like?
Who are the people called to be prayer angels while laying their hands on us? Experiencing a recent illness, I am very aware of the faith that is required to trust God's grace during this period of uncertainty and physical and emotional unrest. It is especially during times of illness that we are closest to God, relying on his strength.
In this passage God gives us the instructions for getting back to wellness (whatever that looks like for each individual, and often only revealed to us looking back.)
God calls us to:
Trust his judgment while we rely on others. Theses periods when we do not get to experience total health and wellness we are to rely on those who love and care for us to be “God with skin on.” He asks us to lift our voices to the heavens while keeping our feet planted firmly on the earth. Sometimes that is all our loved ones can remind us to do. God says, "Others are sent remind you I am there."
God asks of us:
To rely on the power of healing touch. Physical touch is one of the most powerful social wellness tools we can bring out of our tool box of solutions. It invites us to be in community with others in our time of suffering. Allowing others to put their hands on us requires a certain vulnerability most are uncomfortable with. God says again, “Ask others to give healing touch in your life.”
It is through the power of spiritual connectedness with God and others in our lives that our physical and emotional selves experience the healing that Paul demonstrated in this gospel. We must not fear going to God as Publius' father did with openness, willingness and a faithful heart. We must become faithful, willing and open asking God to send us people to become a healing presence in our life. Experience the healing touch of God's own hands through the physical presence of others.
What does healing look like?
Who are the people called to be prayer angels while laying their hands on us? Experiencing a recent illness, I am very aware of the faith that is required to trust God's grace during this period of uncertainty and physical and emotional unrest. It is especially during times of illness that we are closest to God, relying on his strength.
In this passage God gives us the instructions for getting back to wellness (whatever that looks like for each individual, and often only revealed to us looking back.)
God calls us to:
Trust his judgment while we rely on others. Theses periods when we do not get to experience total health and wellness we are to rely on those who love and care for us to be “God with skin on.” He asks us to lift our voices to the heavens while keeping our feet planted firmly on the earth. Sometimes that is all our loved ones can remind us to do. God says, "Others are sent remind you I am there."
God asks of us:
To rely on the power of healing touch. Physical touch is one of the most powerful social wellness tools we can bring out of our tool box of solutions. It invites us to be in community with others in our time of suffering. Allowing others to put their hands on us requires a certain vulnerability most are uncomfortable with. God says again, “Ask others to give healing touch in your life.”
It is through the power of spiritual connectedness with God and others in our lives that our physical and emotional selves experience the healing that Paul demonstrated in this gospel. We must not fear going to God as Publius' father did with openness, willingness and a faithful heart. We must become faithful, willing and open asking God to send us people to become a healing presence in our life. Experience the healing touch of God's own hands through the physical presence of others.
Tuesday, September 1, 2009
When to Teach a Child Self Advocacy and Self Determination
When should I begin to teach my child to advocate for his needs? How can I instill in my child the principles of self determination? What role should I play in my child’s life as he grows toward the independence of adulthood? These are questions parents begin to ask about any child but are particularity critical questions for parents as their child with a disability begins to reach adulthood. I would like to encourage parents to begin to ask these questions now at whatever age their child is. I began to really consider the role my son would play in his own life as a person with a disability living independent from me when he turned 8 years old.
At that time I started my own business in which I work individually with parents on issues relating to school and employment. I began to speak at conferences and develop workshops on how to be more inclusive and practice the principles of wellness. As I was traveling and learning about various issues relating to disability (independent living, programs and services, health care, caregiver support, employment, etc.) I began to wonder… Why aren’t I including my son in what is to be his life as an adult? Am I preparing him for the complexity of living with a disability in the adult world? And as I started assessing my actions I began to realize that I needed to begin now to expose him to the people and programs that would most likely be a part of his adult life.
I have always been a proponent of the principles of self determination: Freedom, Authority, Support, Responsibility. How will our children learn these principles, critical in their enjoyment of independence in adult life if we as parents and loved ones do not take the lead role in promoting them? Children and their families cannot rely on the school or other public institutions to play the lead role in this vital rite of passage into adulthood for every child regardless of having a disability. As parents we know that having a disability presents some unique challenges for our children. Transportation, attitudes, discrimination, lack of information and opportunity and/or educational challenges are just a few of the things that parents have been handling for the most part for their children. Many of these challenges will continue to present themselves as our children reach the age of adulthood. My son has two older brothers and I have not had to spend as much time in preparation for their roles as young men in the community as I have had to prepare my child with a disability. So I decided I needed to start the preparation now.
The community is slowly coming to realize that persons with disability are going to be part of their everyday experience. Parents have played a key role in bringing about this realization. It was parents and those that cared for their children that have insisted in full community participation. We have demanded at times that our children have all the same opportunities their “typical” peers have had. We sent them to school, took them to church, dragged them to the grocery store, dropped them off at camp and daycare and took them to friends homes, often having to overcome some huge obstacles to get them there.
I came to realize that I would not be doing my child any favors if I did not teach him how to interact with what would become his world of independence. I understood the trepidation that many parents feel in exposing their child to social situations and interacting in community. We have had, like most parents I know, frustrating and often painful experiences being in public places. There is the lack of accessible parking or someone taking a spot that they have no right to have, there are the fearful looks from others when we show up to participate, there are the innocent and not so innocent questions about our child’s disability or the use of some type of equipment, there are the comments about not knowing what to do, or having the “expertise” to handle our children (as if they are ponies in a fair or elephants in a circus).
So I began to look for ways in which my child could practice the principles of self determination. Freedom, Authority, Support, and Responsibility.
Freedom: I began to take him to conferences relating to disability and insisted the school include these experiences in his individual education plan.
Authority: I sought out opportunities in my community to get to know legislators, and administrators being sure to bring his picture or introduce him if he was with me. This proved to be particularly helpful when a piece of legislation comes up in which my child is directly affected.
Support: When we had a problem in our community, we discussed it, decided if it was worth pursuing and if it was made a plan to address the problem. Recently my son had an issue with a playground surface that was not accessible to him. He drafted a letter in which we mailed to those that had the authority to change it.
Responsibility: My son knows in a general way the goals on his individual school plan and when he thinks something is not right he discusses it with me. If there is a problem or violation he is encouraged to bring it to the attention of his teachers.
It has not always been easy for me to let go of the reigns and allow him to discover the independence he will need. I have had to be open and willing to share my child with a community that may or may not accept him. I have had to let him discover some of the obstacles he will face as an adult and sometimes that is painful. I have had to put aside my own expectations and ask him what is important to him. And I have had to remind myself that this journey of being a person with a disability is his to lead, and I am but a special guest on his journey. I am encouraged by the things he is learning and certain of the action I am taking. I have no doubt that he will be OK, that he will have the tools to interact in his community and he will be just fine living as an adult without me. It is the foundation I am laying right now at a young age that will make this a reality for him.
So... When should I begin to teach my child to advocate for his needs? Right now. How can I instill in my child the principles of self determination? Through including him in activities in which he can practice the principles. What role should I play in my child’s life as he grows toward the independence of adulthood? The role of teacher, supporter and model.
It is a wonderful journey and one in which I am privileged to be a part of!
At that time I started my own business in which I work individually with parents on issues relating to school and employment. I began to speak at conferences and develop workshops on how to be more inclusive and practice the principles of wellness. As I was traveling and learning about various issues relating to disability (independent living, programs and services, health care, caregiver support, employment, etc.) I began to wonder… Why aren’t I including my son in what is to be his life as an adult? Am I preparing him for the complexity of living with a disability in the adult world? And as I started assessing my actions I began to realize that I needed to begin now to expose him to the people and programs that would most likely be a part of his adult life.
I have always been a proponent of the principles of self determination: Freedom, Authority, Support, Responsibility. How will our children learn these principles, critical in their enjoyment of independence in adult life if we as parents and loved ones do not take the lead role in promoting them? Children and their families cannot rely on the school or other public institutions to play the lead role in this vital rite of passage into adulthood for every child regardless of having a disability. As parents we know that having a disability presents some unique challenges for our children. Transportation, attitudes, discrimination, lack of information and opportunity and/or educational challenges are just a few of the things that parents have been handling for the most part for their children. Many of these challenges will continue to present themselves as our children reach the age of adulthood. My son has two older brothers and I have not had to spend as much time in preparation for their roles as young men in the community as I have had to prepare my child with a disability. So I decided I needed to start the preparation now.
The community is slowly coming to realize that persons with disability are going to be part of their everyday experience. Parents have played a key role in bringing about this realization. It was parents and those that cared for their children that have insisted in full community participation. We have demanded at times that our children have all the same opportunities their “typical” peers have had. We sent them to school, took them to church, dragged them to the grocery store, dropped them off at camp and daycare and took them to friends homes, often having to overcome some huge obstacles to get them there.
I came to realize that I would not be doing my child any favors if I did not teach him how to interact with what would become his world of independence. I understood the trepidation that many parents feel in exposing their child to social situations and interacting in community. We have had, like most parents I know, frustrating and often painful experiences being in public places. There is the lack of accessible parking or someone taking a spot that they have no right to have, there are the fearful looks from others when we show up to participate, there are the innocent and not so innocent questions about our child’s disability or the use of some type of equipment, there are the comments about not knowing what to do, or having the “expertise” to handle our children (as if they are ponies in a fair or elephants in a circus).
So I began to look for ways in which my child could practice the principles of self determination. Freedom, Authority, Support, and Responsibility.
Freedom: I began to take him to conferences relating to disability and insisted the school include these experiences in his individual education plan.
Authority: I sought out opportunities in my community to get to know legislators, and administrators being sure to bring his picture or introduce him if he was with me. This proved to be particularly helpful when a piece of legislation comes up in which my child is directly affected.
Support: When we had a problem in our community, we discussed it, decided if it was worth pursuing and if it was made a plan to address the problem. Recently my son had an issue with a playground surface that was not accessible to him. He drafted a letter in which we mailed to those that had the authority to change it.
Responsibility: My son knows in a general way the goals on his individual school plan and when he thinks something is not right he discusses it with me. If there is a problem or violation he is encouraged to bring it to the attention of his teachers.
It has not always been easy for me to let go of the reigns and allow him to discover the independence he will need. I have had to be open and willing to share my child with a community that may or may not accept him. I have had to let him discover some of the obstacles he will face as an adult and sometimes that is painful. I have had to put aside my own expectations and ask him what is important to him. And I have had to remind myself that this journey of being a person with a disability is his to lead, and I am but a special guest on his journey. I am encouraged by the things he is learning and certain of the action I am taking. I have no doubt that he will be OK, that he will have the tools to interact in his community and he will be just fine living as an adult without me. It is the foundation I am laying right now at a young age that will make this a reality for him.
So... When should I begin to teach my child to advocate for his needs? Right now. How can I instill in my child the principles of self determination? Through including him in activities in which he can practice the principles. What role should I play in my child’s life as he grows toward the independence of adulthood? The role of teacher, supporter and model.
It is a wonderful journey and one in which I am privileged to be a part of!
Saturday, August 22, 2009
Spirituality through Community
Living the spiritual life is obtained through living in community. Spirituality is often discovered in solitude through meditation, reading, thinking, etc. but it can only be fulfilled in community. We were designed to live in relationship with others. Spirituality as Kurtz and Ketcham (The Spirituality of Imperfection, 1992) describe “ is nurtured in community, the oneness with others that springs from shared vision and shared goal, shared memory and shared hope.”
It is through the sharing of stories, one to another that relationship is built. Often because of the work I do, I get the opportunity to share, be a participant in another person’s story. It is through these relational encounters that I get to share the heartache and pain evident in another’s experience. Participation in support groups, having coffee with a friend, joining an online group chat are just a few ways in which we connect in community through shared stories.
Often we reach out for advice and support. Often our own pain is evident in dialogue. Seeking the support of a community not only gives one a listening ear but also a forum for discovering solutions. This is the role community plays in the fulfillment of our spiritual purpose. Hopefully our encounters with others offer peace. This is the nature of spiritual community involvement.
No one can fully understand another person’s pain, only God. He hears us in the darkness of our anxiety, sits with us in our frustration and anger, and calls us to faith. This is what spirituality in solace does for us. It is through this silent reflection that we are able to reach beyond our own distress in faith to bring to community our deepest fears.
As a parents of a children with disability, it is through the development of safe relationships that we are able to gather the energy to keep doing what we must do for our children. As parents we carry this safety and faith to others that do not understand in an attempt to get for our children what they need. We move from our own community of support (in the special mom's support group) to the greater community in their unknowing.
There is no greater pain than that of a parent watching their child suffer and being powerless to help. So often we reach out in anger because we are consumed with pain. Stories often demonstrate a parent’s powerlessness. What parents need from community is to feel safety in sharing their stories with others without judgment, defensiveness, or apathy from those that have the power to offer solutions. No person likes to be dependent on others, being humble is difficult for most people. However, when you are vulnerable, as people with disability and their parents are, you have little choice. In my experience I had to reach beyond the four walls of my own home and ask and accept the help of others, often strangers. This can be the ultimate action of faith, to reach out despite fear, frustration, and anger in the hope of discovering community support. It has often yielded positive results and the fulfillment of spirituality.
Sometimes reaching out as an act of faith can yield less than favorable results, as the following story demonstrates. Being humble, asking for community support no matter what the outcome is the work of the spirit. For no matter what the response is there is one that holds all our answers. God is the only one who knows what is in the heart of everyone even the person or community that seems less than welcoming.
As a former educator, I learned about research based, result oriented approaches to intervention. “An emphasis on parent involvement has given way to a family-centered approach in which families have the power to direct the service that they and their children, receive.” (Partnerships with Families, Stoneman and Rugg) This is not always practiced in the systems approach to interventions. It is often forgotten that first: families care deeply about their children. Second: families want to do what they need to do to help their children and be cooperative but often are consumed with grief and distress over some condition relating to their child’s disability. And third and most importantly: we are dealing with human beings, subject to all the complexities that entails. Remembering this, whether there is agreement or not (healthy conflict as Parker Palmer describes) the best interest of all involved, a seeking to understand that which cannot be understood fully we participate in the spiritually of community.
It is through the sharing of stories, one to another that relationship is built. Often because of the work I do, I get the opportunity to share, be a participant in another person’s story. It is through these relational encounters that I get to share the heartache and pain evident in another’s experience. Participation in support groups, having coffee with a friend, joining an online group chat are just a few ways in which we connect in community through shared stories.
Often we reach out for advice and support. Often our own pain is evident in dialogue. Seeking the support of a community not only gives one a listening ear but also a forum for discovering solutions. This is the role community plays in the fulfillment of our spiritual purpose. Hopefully our encounters with others offer peace. This is the nature of spiritual community involvement.
No one can fully understand another person’s pain, only God. He hears us in the darkness of our anxiety, sits with us in our frustration and anger, and calls us to faith. This is what spirituality in solace does for us. It is through this silent reflection that we are able to reach beyond our own distress in faith to bring to community our deepest fears.
As a parents of a children with disability, it is through the development of safe relationships that we are able to gather the energy to keep doing what we must do for our children. As parents we carry this safety and faith to others that do not understand in an attempt to get for our children what they need. We move from our own community of support (in the special mom's support group) to the greater community in their unknowing.
There is no greater pain than that of a parent watching their child suffer and being powerless to help. So often we reach out in anger because we are consumed with pain. Stories often demonstrate a parent’s powerlessness. What parents need from community is to feel safety in sharing their stories with others without judgment, defensiveness, or apathy from those that have the power to offer solutions. No person likes to be dependent on others, being humble is difficult for most people. However, when you are vulnerable, as people with disability and their parents are, you have little choice. In my experience I had to reach beyond the four walls of my own home and ask and accept the help of others, often strangers. This can be the ultimate action of faith, to reach out despite fear, frustration, and anger in the hope of discovering community support. It has often yielded positive results and the fulfillment of spirituality.
Sometimes reaching out as an act of faith can yield less than favorable results, as the following story demonstrates. Being humble, asking for community support no matter what the outcome is the work of the spirit. For no matter what the response is there is one that holds all our answers. God is the only one who knows what is in the heart of everyone even the person or community that seems less than welcoming.
As a former educator, I learned about research based, result oriented approaches to intervention. “An emphasis on parent involvement has given way to a family-centered approach in which families have the power to direct the service that they and their children, receive.” (Partnerships with Families, Stoneman and Rugg) This is not always practiced in the systems approach to interventions. It is often forgotten that first: families care deeply about their children. Second: families want to do what they need to do to help their children and be cooperative but often are consumed with grief and distress over some condition relating to their child’s disability. And third and most importantly: we are dealing with human beings, subject to all the complexities that entails. Remembering this, whether there is agreement or not (healthy conflict as Parker Palmer describes) the best interest of all involved, a seeking to understand that which cannot be understood fully we participate in the spiritually of community.
Sunday, August 2, 2009
Embracing the Darkness
Embracing the Darkness
August 2, 2009
I have turned a corner, moved out of the place I call “the darkness of the soul” – the place medical professionals call depression. Most of us at one time or another have experienced some type of depression whether situational (evoked by some painful or distressing life event” or medical (clinical in nature). The dark place is uncomfortable, frustrating and most of all frightening. But it can paradoxically be a place of rest. It is the place where God’s presence is most near, however one must be willing to experience depression in order to feel the healing touch of God. It is not something that one can run from. It must turn into something to be embraced.
The first time a friend suggested embracing depression, I was adamantly against experiencing God in this way. I thought she was crazy and truly did not understand the depth of darkness I experience during these times. After a period of prayerful consideration and a willingness to consider the possibility of embracing all that I am (light and darkness), I began to consider the implication of learning to do this. It would mean accepting a part of me that I really didn’t enjoy, welcome or like. Accepting myself, just as God does – completely and without condition, blame or perfection!
I began to consider with this depressive episode to learn to embrace the darkness. Experience has taught me that the dark corners of my soul would not last forever, and God would move me through it with a new found appreciation for the light when it showed up.
For three days I stayed home, slept a lot read mindless books and watched TV. I also prayed though I had no words. I cannot say I was comfortable, I was enjoying myself in the darkness but I can say I had a measure of peace that God truly was present.
I was able to consider some changes in my life, with relationships, with friends and family, with my professional career and all the obligations I had. Things continue to change as I enter into a different life transition. At this time - entering middle age, children growing, career changing - I enter into a period of discernment as to what God wants me to do. This has been emotional and difficult for me in many ways, the uncertainty and change. This is also a time of excitement and opportunity, even adventurous. My own emotions have been up and down. It is easy to be in a state of depression, but to stay focused on God’s plan, uncertain to me, but perfect in his world requires faith, energy and constant awareness of divine presence.
I cannot fully say that I have embraced my depression but I can say I have gone through another shedding – of fear, anxiety, restlessness. For today I am renewed in God’s love and am at peace. I enter once again to the light in renewed energy for the work God has planned for me.
Blessings and peace to all who face uncertainty, fear and depression.
August 2, 2009
I have turned a corner, moved out of the place I call “the darkness of the soul” – the place medical professionals call depression. Most of us at one time or another have experienced some type of depression whether situational (evoked by some painful or distressing life event” or medical (clinical in nature). The dark place is uncomfortable, frustrating and most of all frightening. But it can paradoxically be a place of rest. It is the place where God’s presence is most near, however one must be willing to experience depression in order to feel the healing touch of God. It is not something that one can run from. It must turn into something to be embraced.
The first time a friend suggested embracing depression, I was adamantly against experiencing God in this way. I thought she was crazy and truly did not understand the depth of darkness I experience during these times. After a period of prayerful consideration and a willingness to consider the possibility of embracing all that I am (light and darkness), I began to consider the implication of learning to do this. It would mean accepting a part of me that I really didn’t enjoy, welcome or like. Accepting myself, just as God does – completely and without condition, blame or perfection!
I began to consider with this depressive episode to learn to embrace the darkness. Experience has taught me that the dark corners of my soul would not last forever, and God would move me through it with a new found appreciation for the light when it showed up.
For three days I stayed home, slept a lot read mindless books and watched TV. I also prayed though I had no words. I cannot say I was comfortable, I was enjoying myself in the darkness but I can say I had a measure of peace that God truly was present.
I was able to consider some changes in my life, with relationships, with friends and family, with my professional career and all the obligations I had. Things continue to change as I enter into a different life transition. At this time - entering middle age, children growing, career changing - I enter into a period of discernment as to what God wants me to do. This has been emotional and difficult for me in many ways, the uncertainty and change. This is also a time of excitement and opportunity, even adventurous. My own emotions have been up and down. It is easy to be in a state of depression, but to stay focused on God’s plan, uncertain to me, but perfect in his world requires faith, energy and constant awareness of divine presence.
I cannot fully say that I have embraced my depression but I can say I have gone through another shedding – of fear, anxiety, restlessness. For today I am renewed in God’s love and am at peace. I enter once again to the light in renewed energy for the work God has planned for me.
Blessings and peace to all who face uncertainty, fear and depression.
Thursday, July 2, 2009
MIRACLES
Miracles
July 2, 2009
Any parent of a child with a disability has struggled with the concept of miracles. Often we are told to have faith, to pray and some are even so bold to suggest that if we do these things then God will “heal” our special needs child. These comments, I believe usually, are given from a place of trying to help but instead demonstrate a true ignorance of the person making the comment. Usually such narrow-minded views left me to feel “less than”, and inadequate in my ability and lacking in faith. I, like the well intentioned, succumbed to the well felt fear of the future and the outcome.
No one can understand another’s struggles or even if someone is struggling. Comments are given from our own place of not knowing what is needed by another person, our own interpretation of the situation. From another’s perspective I can see how my situation with Brendon seems unimaginable. I have gone through bouts of uncertainty and doubt through my own ignorance of the experience, the outcome and my own ability to do what would be needed. Having a child with a disability is not something I would have chosen for my life. (I have come to greatly admire those that I have met that choose through adoption or foster care to welcome those with disabilities into their homes and lives.) I now know that this attitude comes from my own fear of the unknown and I believe others have the same fear. How can you trust something that seems so difficult, that presents so many challenges and that is not the norm, something that presents so many unknowns.
Today I was reading in my daily meditation about Jesus’ miracles. In the new testament there are some three dozen recorded miracles performed by Jesus. Miracles of healing (the healing of the paralyzed hand ~ Mark 3: 1- 6) , of meeting a need (changing water into wine at the wedding) or coming to someone’s rescue (walking across the lake during a storm to comfort the frightened disciples). Each time he is responding with compassion to the fears and suffering of others. But what if someone is not suffering?
There was a point in Brendon’s life when I experienced great suffering, going through the process of grief and loss was difficult and painful. But during this time Brendon did not appear to be experiencing any pain, loss, or suffering. He was happy, content, and loved. God didn’t need to “heal” Brendon because he was already healed. Eventually through a great deal of prayer and meditation, through talking with others, and through willingness to trust the process I was able to be “healed” of my fear. I learned to appreciate the great gift Brendon was in not only my life but the lives of many others. God spoke to me through Brendon when I began to look through my tears and pay attention to his happiness. God used Brendon as a vehicle for my own healing.
If I were to ask Jesus for one miracle today, what would that be? I am not sure how to answer this question. If “healing” in the common form of the word (Brendon getting up from his wheelchair and walking across the room for example) would change Brendon, make him someone else, change his humble and patient personality, I am not sure I would ask Jesus to allow Brendon to “walk”. I think, when I honestly reflect on this question, I would ask Jesus to heal me and Brendon from our fear and to touch the lives of others so that they too could appreciate Brendon for the true miracle he is.
July 2, 2009
Any parent of a child with a disability has struggled with the concept of miracles. Often we are told to have faith, to pray and some are even so bold to suggest that if we do these things then God will “heal” our special needs child. These comments, I believe usually, are given from a place of trying to help but instead demonstrate a true ignorance of the person making the comment. Usually such narrow-minded views left me to feel “less than”, and inadequate in my ability and lacking in faith. I, like the well intentioned, succumbed to the well felt fear of the future and the outcome.
No one can understand another’s struggles or even if someone is struggling. Comments are given from our own place of not knowing what is needed by another person, our own interpretation of the situation. From another’s perspective I can see how my situation with Brendon seems unimaginable. I have gone through bouts of uncertainty and doubt through my own ignorance of the experience, the outcome and my own ability to do what would be needed. Having a child with a disability is not something I would have chosen for my life. (I have come to greatly admire those that I have met that choose through adoption or foster care to welcome those with disabilities into their homes and lives.) I now know that this attitude comes from my own fear of the unknown and I believe others have the same fear. How can you trust something that seems so difficult, that presents so many challenges and that is not the norm, something that presents so many unknowns.
Today I was reading in my daily meditation about Jesus’ miracles. In the new testament there are some three dozen recorded miracles performed by Jesus. Miracles of healing (the healing of the paralyzed hand ~ Mark 3: 1- 6) , of meeting a need (changing water into wine at the wedding) or coming to someone’s rescue (walking across the lake during a storm to comfort the frightened disciples). Each time he is responding with compassion to the fears and suffering of others. But what if someone is not suffering?
There was a point in Brendon’s life when I experienced great suffering, going through the process of grief and loss was difficult and painful. But during this time Brendon did not appear to be experiencing any pain, loss, or suffering. He was happy, content, and loved. God didn’t need to “heal” Brendon because he was already healed. Eventually through a great deal of prayer and meditation, through talking with others, and through willingness to trust the process I was able to be “healed” of my fear. I learned to appreciate the great gift Brendon was in not only my life but the lives of many others. God spoke to me through Brendon when I began to look through my tears and pay attention to his happiness. God used Brendon as a vehicle for my own healing.
If I were to ask Jesus for one miracle today, what would that be? I am not sure how to answer this question. If “healing” in the common form of the word (Brendon getting up from his wheelchair and walking across the room for example) would change Brendon, make him someone else, change his humble and patient personality, I am not sure I would ask Jesus to allow Brendon to “walk”. I think, when I honestly reflect on this question, I would ask Jesus to heal me and Brendon from our fear and to touch the lives of others so that they too could appreciate Brendon for the true miracle he is.
Friday, June 26, 2009
Encountering Obstacles
Sometimes life can be difficult. People, and circumstances cause frustration, disappointment, and hurt. I have come to believe that most of the time people do not do things out of spite and vindictiveness but out of a un knowing. Who among us can truly know all that one person is feeling or facing, none on this early but only God. That can make encounters with others difficult to say the least. I have been confronted with difficult attitudes many times this summer. Brendon is home for the summer and I am enjoying spending time with him and just doing fun things like Vacation Bible School, swimming at the pool, and going to the library. We have had a busy summer, but it has not been without social challenge.
It seems to be that everyday I take him out there is some attitudinal barrier I have to face, a barrier that comes from an unknowing on another’s part, but that does not seem to make the feelings of frustration, anger and hurt disappear. Going to vacation bible school has been such an accepting event for us, the staff and volunteers have been most gracious and we have not been met with what I term “the look”, that expression we encounter when Brendon shows up in a wheelchair seeming to be so different from what others are used to. Most parents of special needs kids know “the look” well. It was the getting into the building that presented the challenge. On numerous occasions cars were illegally parked in the “accessible parking” spaces (what is now the preferred term for the “handicapped parking” spaces). This is not a new problem we often face, but it is one that continues to occur and thus causes great frustration. Sure I know the person usually thinks they are just going to zip in and out of the space and no harm will be done. But in the time they take to zip in, we are searching for a safe place to park our car. Knowing the person usually is not performing their action as some sort of vendetta against me does not seem to help the feelings that seem to rise to the surface with this simple action.
(continued…)
It seems to be that everyday I take him out there is some attitudinal barrier I have to face, a barrier that comes from an unknowing on another’s part, but that does not seem to make the feelings of frustration, anger and hurt disappear. Going to vacation bible school has been such an accepting event for us, the staff and volunteers have been most gracious and we have not been met with what I term “the look”, that expression we encounter when Brendon shows up in a wheelchair seeming to be so different from what others are used to. Most parents of special needs kids know “the look” well. It was the getting into the building that presented the challenge. On numerous occasions cars were illegally parked in the “accessible parking” spaces (what is now the preferred term for the “handicapped parking” spaces). This is not a new problem we often face, but it is one that continues to occur and thus causes great frustration. Sure I know the person usually thinks they are just going to zip in and out of the space and no harm will be done. But in the time they take to zip in, we are searching for a safe place to park our car. Knowing the person usually is not performing their action as some sort of vendetta against me does not seem to help the feelings that seem to rise to the surface with this simple action.
(continued…)
Wednesday, June 24, 2009
The Changing Role of a Mom
(Struggling to Define My Part in Helping My Child Reach Manhood)
Lately I have been suffering from a writing dry spell (evident from my lack of posts). I have been running gathering little inspiration and have been just trying to get through the day to day challenges that seem to be rapidly firing at me. I have been consumed with life’s challenges, “living life on Life’s terms” as I’ve heard from program friends. This has forced me to once again turn to God for direction and answers. If you “truly have formed my inmost being” as Psalm 139:13 says than I must have trust that you will guide me through this new phase of parenting if only I turn toward you.
I quickly realized I was going to have to redefine my role as parent to my oldest son. I thought I was prepared but little did I know the emotional roller coaster I would enter into as my oldest son came home after completing his freshman year of college (making the Deans list I must add). From the moment he entered the door chaos erupted. His entrance should have been my first clue that something was going to happen, and most likely it wasn’t going to be good! He entered our home dropping smelly shoes, dirty underwear and a vast array of boxes, bags, and containers spilling over with junk, making a trail toward his “old” room. He, and I hate to admit, I had assumed that things would go on as usual. He assuming his home was his home, and he could reside here under any circumstance and I assuming that I would have some control over his activities and comings and goings.
This was not to be the case. He resisted every “rule”, every restriction and boundary. Mass chaos erupted and I hate to admit I played a part in the drama. I had no idea what to do, what was within the ranges of “normal” and what was not. I struggled to define my new role as my young adult son’s mother. I thought I knew what to expect. I have friends that have gone through this. I listened to their stories. I thought I was prepared. But to prepare for an emotion that has yet to happen I discovered is impossible. Sure you can listen to those friends, take their suggestions and be affirmed that good, bad, or ugly you will get through it.
If I believe that God truly has formed my inmost being than I had to have faith and once again trust the inmost being God formed for my son. I had to accept that he would make lots of mistakes, mistakes made by every human being walking the face of the earth since the beginning of time. Unfortunately we learn the most valuable lessons not through the experience of others, their mistakes, shortcomings and successes but through our own. We must each journey on our own path and no two paths are exactly the same. Others can help us on the way sharing their experience, strength and hope but only God knows our inmost being and we are here to discover that which he has installed in us. Only God, since he hold the blueprint of our development can guide us to discover those places within ourselves yet to be discovered.
As I enter into this new role, I am finding I am making lots of mistakes, they seem to be the same mistakes made by parents since the beginning of time. It is difficult, painful and exhausting. Sometimes there appears to be no end to the process but on other days there appears to be a glimmer of hope as I see my son not resisting me as strongly and would actually do something I asked him to do.
My solution as I have found in any difficult and painful life situation is to turn toward God. I have relied partly to my running meditation. God is directing my feet as I have logged in many exerting miles on the road. I am finding that my running is more intense, more difficult and I am sweating profusely. This is giving me some relief. I have also been talking to those that have gone before me and actually trying to listen to their experience. Finding a sympathetic ear has offered some relief. Each of these activities keeps directing me toward God for my answers and has allowed me to trust the process knowing that only God know my path and the path of my son. He will guide me and him no matter what the choices we make and if we allow him, he will give us peace. I am beginning to learn this and feel Gods loving hand on my shoulder. My prayer is that my son also feel this love.
Blessings to all my running cohorts, and my moms struggling to discover their new role.
June 24, 2009
Trust, commitment, perseverance, acceptance
(Struggling to Define My Part in Helping My Child Reach Manhood)
Lately I have been suffering from a writing dry spell (evident from my lack of posts). I have been running gathering little inspiration and have been just trying to get through the day to day challenges that seem to be rapidly firing at me. I have been consumed with life’s challenges, “living life on Life’s terms” as I’ve heard from program friends. This has forced me to once again turn to God for direction and answers. If you “truly have formed my inmost being” as Psalm 139:13 says than I must have trust that you will guide me through this new phase of parenting if only I turn toward you.
I quickly realized I was going to have to redefine my role as parent to my oldest son. I thought I was prepared but little did I know the emotional roller coaster I would enter into as my oldest son came home after completing his freshman year of college (making the Deans list I must add). From the moment he entered the door chaos erupted. His entrance should have been my first clue that something was going to happen, and most likely it wasn’t going to be good! He entered our home dropping smelly shoes, dirty underwear and a vast array of boxes, bags, and containers spilling over with junk, making a trail toward his “old” room. He, and I hate to admit, I had assumed that things would go on as usual. He assuming his home was his home, and he could reside here under any circumstance and I assuming that I would have some control over his activities and comings and goings.
This was not to be the case. He resisted every “rule”, every restriction and boundary. Mass chaos erupted and I hate to admit I played a part in the drama. I had no idea what to do, what was within the ranges of “normal” and what was not. I struggled to define my new role as my young adult son’s mother. I thought I knew what to expect. I have friends that have gone through this. I listened to their stories. I thought I was prepared. But to prepare for an emotion that has yet to happen I discovered is impossible. Sure you can listen to those friends, take their suggestions and be affirmed that good, bad, or ugly you will get through it.
If I believe that God truly has formed my inmost being than I had to have faith and once again trust the inmost being God formed for my son. I had to accept that he would make lots of mistakes, mistakes made by every human being walking the face of the earth since the beginning of time. Unfortunately we learn the most valuable lessons not through the experience of others, their mistakes, shortcomings and successes but through our own. We must each journey on our own path and no two paths are exactly the same. Others can help us on the way sharing their experience, strength and hope but only God knows our inmost being and we are here to discover that which he has installed in us. Only God, since he hold the blueprint of our development can guide us to discover those places within ourselves yet to be discovered.
As I enter into this new role, I am finding I am making lots of mistakes, they seem to be the same mistakes made by parents since the beginning of time. It is difficult, painful and exhausting. Sometimes there appears to be no end to the process but on other days there appears to be a glimmer of hope as I see my son not resisting me as strongly and would actually do something I asked him to do.
My solution as I have found in any difficult and painful life situation is to turn toward God. I have relied partly to my running meditation. God is directing my feet as I have logged in many exerting miles on the road. I am finding that my running is more intense, more difficult and I am sweating profusely. This is giving me some relief. I have also been talking to those that have gone before me and actually trying to listen to their experience. Finding a sympathetic ear has offered some relief. Each of these activities keeps directing me toward God for my answers and has allowed me to trust the process knowing that only God know my path and the path of my son. He will guide me and him no matter what the choices we make and if we allow him, he will give us peace. I am beginning to learn this and feel Gods loving hand on my shoulder. My prayer is that my son also feel this love.
Blessings to all my running cohorts, and my moms struggling to discover their new role.
June 24, 2009
Trust, commitment, perseverance, acceptance
Saturday, May 30, 2009
Where I Draw My Strength
Close to the time of the death of Jesus, scripture tells us he made this final request to his father: "My father, it is possible, take this cup of suffering from me, yet not what I want, but what you want." Jesus was in a place of resignation within his own heart, a place of acceptance of what was to come, a willingness to fulfill his purpose yet he demonstrated all the fear a human faces when in a difficult situation. Knowing the great suffering he will endure, he chose to display courage fan faith. He was not acting on his own will or to save himself but on the principle of service. He gives his very life in service to others.
What an incredible life lesson this is. We can all learn much about willingness in spite of physical or emotional pain. If we choose we can take the attitude, there is a greater plan for our lives- one that includes service to others. Service that is often difficult, painful and inconvenient. This is the only type of service that truly matters. Service to our fellows.
Having a child with a disability is not always easy, and a parent faces a lot of pain, especially in the beginning as they face diagnosis and loss of what they though parenting was going to be and many times loss of dreams. I parent goes through a grief process and those that know grief know how difficult it is. One difference in grieving a live child is that things can change with a child, the child can develop a complication, get a new diagnosis, face a new challenge and the grief can begin again. How long a person stays in a stage of grief depends on the person and I believe their spiritual connection and support of others, those with similar challenges as well as trusted friends, family, medical and service workers.
Once I got to a place of acceptance initially there was a peace, a knowing that God was caring for my child as well as me and I didn't have to try to control that which I had no control of. I was able to let go of "what it was supposed to be" and enjoy the blessing my son has been in my life and the effect he has on the lives of others. I have found going through grief once, getting to acceptance has increased my faith making the grief process a little easier to go through if things change with my son.
Working as a consultant in the field of wellness and disability gives me ample opportunity to be of service in challenging old ways of thinking, attitudes and barriers which cause a great deal of stress, anxiety and fear. Recently we began an inclusion ministry at our church. I am committed to bring awareness and serving as a resource. I have had the fortune to see God touching the hearts of others who are also committed to this work. It is easy to do things as they have always been done whether it makes sense or not, whether it helps others or not. But to challenge old ways and to initiate change takes the diligent commitment toward following a plan of one greater than me and I often look to scripture for direction. Like Jesus at times I wish this "cup" would pass me by because my experience has many painful rejections (from the very administration of my faith community which has been most painful). But this rejection spurs me on as I am comforted by the words of Jesus, "thy will not mine be done." I have faith that the work I do, the lives I touch and the people I help are all part of my vocation, the job God has for me. To be so clear on my purpose I find is the greatest of blessings.
What an incredible life lesson this is. We can all learn much about willingness in spite of physical or emotional pain. If we choose we can take the attitude, there is a greater plan for our lives- one that includes service to others. Service that is often difficult, painful and inconvenient. This is the only type of service that truly matters. Service to our fellows.
Having a child with a disability is not always easy, and a parent faces a lot of pain, especially in the beginning as they face diagnosis and loss of what they though parenting was going to be and many times loss of dreams. I parent goes through a grief process and those that know grief know how difficult it is. One difference in grieving a live child is that things can change with a child, the child can develop a complication, get a new diagnosis, face a new challenge and the grief can begin again. How long a person stays in a stage of grief depends on the person and I believe their spiritual connection and support of others, those with similar challenges as well as trusted friends, family, medical and service workers.
Once I got to a place of acceptance initially there was a peace, a knowing that God was caring for my child as well as me and I didn't have to try to control that which I had no control of. I was able to let go of "what it was supposed to be" and enjoy the blessing my son has been in my life and the effect he has on the lives of others. I have found going through grief once, getting to acceptance has increased my faith making the grief process a little easier to go through if things change with my son.
Working as a consultant in the field of wellness and disability gives me ample opportunity to be of service in challenging old ways of thinking, attitudes and barriers which cause a great deal of stress, anxiety and fear. Recently we began an inclusion ministry at our church. I am committed to bring awareness and serving as a resource. I have had the fortune to see God touching the hearts of others who are also committed to this work. It is easy to do things as they have always been done whether it makes sense or not, whether it helps others or not. But to challenge old ways and to initiate change takes the diligent commitment toward following a plan of one greater than me and I often look to scripture for direction. Like Jesus at times I wish this "cup" would pass me by because my experience has many painful rejections (from the very administration of my faith community which has been most painful). But this rejection spurs me on as I am comforted by the words of Jesus, "thy will not mine be done." I have faith that the work I do, the lives I touch and the people I help are all part of my vocation, the job God has for me. To be so clear on my purpose I find is the greatest of blessings.
Monday, April 27, 2009
YOU ARE AN INSPIRATION
YOU ARE AN INSPIRATION
April 27, 2009
Reflections on the Kentucky Derby Marathon
Yeah, Brendon and I finished together the Kentucky Derby ½ Marathon on April 25, 2009. Just he and I together and the faith in God with the encouragement of my fellow runners. It was an amazing celebration of months of training, hours of praying and courage to share my son with others. At first I was afraid, the race was crowded: “Would I clip the heals of my fellow runners?” “Would we be pulled off the course even though we had permission to run.” Would I make it on my own pushing Brendon 13.1 miles up hills, in the heat and through the pain?” Despite my fears, I had the courage to act. This is what courage is, the ability to act despite fear, to have faith, to trust that “all is well.” Courage is not an emotion but an action!
The experience was awesome. God gave me the ability to move forward despite the pain. The first 4 miles were hilly, and I mean really hilly. I felt like some cartoon character pushing a boulder up a steep hill with my nose. But despite the difficulty, I took time to take in the scenery. To enjoy the shade of the trees going through Iroquois Park, running through Steeplechase (being spurred on my the commentary of sports broadcasters calling the race), past the beautiful homes and even the recovery houses, the poorer sections of town. The crowds as well as the runners were diverse and I loved that. I enjoyed To appreciate the encouraging words of my fellow runners. They spurred Brendon and I on with words, I believe, were sent by God to help alleviate my fear of not being accepted on the course. Words such as, “What an amazing job you are doing.” “I can barely run this marathon myself, much less pushing a stroller.” “Keep going.” And from the crowd, looks of surprise from the children, smiles from the adults, and high fives whenever we could reach out. We heard things such as, “Look at that.” “Wow.” And “Keep it up, you’re doing a great job.”
Even more than the words of my fellow runners, I enjoyed Brendon. I engaged in conversation with him, listened to his humming and cheerleading, and calling out, “Passing on the right.” I appreciated his enjoyment of the experience: waving at the crowds, splashing water on him to cool him off (did I mention it was really hot), and we even got to run through a fire hydrant. When the last three miles threatened to do me in, I told myself the goal was to enjoy the experience and just to finish. I conserved energy for the big sprint at the end, always Brendon and my favorite part. At one point I had a certainty that I would finish but I wasn’t sure I would have enough to sprint strongly at the end. It was Brendon’s unselfish concern, “Mommy are you ok?” and “It’s ok if we don’t go fast at the end,” that moved me forward. And we end strong and fast, really fast. It was amazing! Thank you God again for the burst of energy , for the courage and for the gift of my strong legs.
Often having a child with a disability can be difficult but it is hours like this (we finished in 2:52:38, under 3 hours my goal.) that spur us on to the finish line, keep us moving forward, allow us to keep working to allow others to be inspired. It is my prayer that I can remember that God sends me inspiration and encouragement when I need it. He has allowed others to share their gifts with me and he has allowed me to share my gifts with others. I was gifted with the physical strength to run. Brendon was gifted with the spiritual gift to offer encouragement and compassion. And the runners shared their inspiration.
------------------------------------------------------------------------------------------------------------
April 27, 2009
Reflections on the Kentucky Derby Marathon
Yeah, Brendon and I finished together the Kentucky Derby ½ Marathon on April 25, 2009. Just he and I together and the faith in God with the encouragement of my fellow runners. It was an amazing celebration of months of training, hours of praying and courage to share my son with others. At first I was afraid, the race was crowded: “Would I clip the heals of my fellow runners?” “Would we be pulled off the course even though we had permission to run.” Would I make it on my own pushing Brendon 13.1 miles up hills, in the heat and through the pain?” Despite my fears, I had the courage to act. This is what courage is, the ability to act despite fear, to have faith, to trust that “all is well.” Courage is not an emotion but an action!
The experience was awesome. God gave me the ability to move forward despite the pain. The first 4 miles were hilly, and I mean really hilly. I felt like some cartoon character pushing a boulder up a steep hill with my nose. But despite the difficulty, I took time to take in the scenery. To enjoy the shade of the trees going through Iroquois Park, running through Steeplechase (being spurred on my the commentary of sports broadcasters calling the race), past the beautiful homes and even the recovery houses, the poorer sections of town. The crowds as well as the runners were diverse and I loved that. I enjoyed To appreciate the encouraging words of my fellow runners. They spurred Brendon and I on with words, I believe, were sent by God to help alleviate my fear of not being accepted on the course. Words such as, “What an amazing job you are doing.” “I can barely run this marathon myself, much less pushing a stroller.” “Keep going.” And from the crowd, looks of surprise from the children, smiles from the adults, and high fives whenever we could reach out. We heard things such as, “Look at that.” “Wow.” And “Keep it up, you’re doing a great job.”
Even more than the words of my fellow runners, I enjoyed Brendon. I engaged in conversation with him, listened to his humming and cheerleading, and calling out, “Passing on the right.” I appreciated his enjoyment of the experience: waving at the crowds, splashing water on him to cool him off (did I mention it was really hot), and we even got to run through a fire hydrant. When the last three miles threatened to do me in, I told myself the goal was to enjoy the experience and just to finish. I conserved energy for the big sprint at the end, always Brendon and my favorite part. At one point I had a certainty that I would finish but I wasn’t sure I would have enough to sprint strongly at the end. It was Brendon’s unselfish concern, “Mommy are you ok?” and “It’s ok if we don’t go fast at the end,” that moved me forward. And we end strong and fast, really fast. It was amazing! Thank you God again for the burst of energy , for the courage and for the gift of my strong legs.
Often having a child with a disability can be difficult but it is hours like this (we finished in 2:52:38, under 3 hours my goal.) that spur us on to the finish line, keep us moving forward, allow us to keep working to allow others to be inspired. It is my prayer that I can remember that God sends me inspiration and encouragement when I need it. He has allowed others to share their gifts with me and he has allowed me to share my gifts with others. I was gifted with the physical strength to run. Brendon was gifted with the spiritual gift to offer encouragement and compassion. And the runners shared their inspiration.
------------------------------------------------------------------------------------------------------------
Sunday, April 19, 2009
Perseverance
Today in my meditation I was reading about perseverance in the book Running Within by Jerry Lynch and Warren Scott Interestingly I was reading a section on Perseverance This is one of my sections in my book about my journey toward acceptance of my son's disability and the lessons I have learned.
As a mother of a child with a disability and a marathon runner it is necessary toward acceptance and fulfillment that I learn the lessons of persistence. As quoted in the book Talent accounts for 5 percent of most achievements. It usually takes 5 years of consistent training before you come to your own as a runner. I had never heard this but I agree fully! When I took up running, I learned that it took commitment and perseverance to continue. I have found that setting a goal toward a marathon or even toward physical health requires me to run no matter what. Often I find myself not wanting to run! To skip the training because I don't feel like it, the weather, lack of time, other more important things to do, etc. the excuses are limited. Running often doesn't make me feel great when in the middle of it. In fact more often than not this is the case. When I committed this year to run as a spiritual medium, I learned that I can run as a prayer and the dedication to this activity often is something I don't want to do because it is often uncomfortable, painful, and creates a lot of fear. But the perseverance has allowed me to increase my spiritual connection to God, to learn the lessons of faith. Often I do not know what my life plan is but I keep on the road toward doing the work of God (hello everyone it is difficult because it often requires change!) I have learned that it is supposed to be this way. Jesus didn't have a picnic of a life, it wasn't fun, and it was incredibly painful. This is necessary toward the faithful journey. Does my life really express the beliefs and morals I proclaim to have? Only the action that is required allows this to happen.
I have also found that having a child with a disability requires the same perseverance, dedication and commitment. And when I look back I realize that it does take about 5 years!
Giving up is not part of the journey toward faith. Persistence, commitment and dedication are the requirement but the rewards and connection toward a spiritually fulfilling life, toward living the life that God intends is well worth the struggle.
Blessings on your road!
As a mother of a child with a disability and a marathon runner it is necessary toward acceptance and fulfillment that I learn the lessons of persistence. As quoted in the book Talent accounts for 5 percent of most achievements. It usually takes 5 years of consistent training before you come to your own as a runner. I had never heard this but I agree fully! When I took up running, I learned that it took commitment and perseverance to continue. I have found that setting a goal toward a marathon or even toward physical health requires me to run no matter what. Often I find myself not wanting to run! To skip the training because I don't feel like it, the weather, lack of time, other more important things to do, etc. the excuses are limited. Running often doesn't make me feel great when in the middle of it. In fact more often than not this is the case. When I committed this year to run as a spiritual medium, I learned that I can run as a prayer and the dedication to this activity often is something I don't want to do because it is often uncomfortable, painful, and creates a lot of fear. But the perseverance has allowed me to increase my spiritual connection to God, to learn the lessons of faith. Often I do not know what my life plan is but I keep on the road toward doing the work of God (hello everyone it is difficult because it often requires change!) I have learned that it is supposed to be this way. Jesus didn't have a picnic of a life, it wasn't fun, and it was incredibly painful. This is necessary toward the faithful journey. Does my life really express the beliefs and morals I proclaim to have? Only the action that is required allows this to happen.
I have also found that having a child with a disability requires the same perseverance, dedication and commitment. And when I look back I realize that it does take about 5 years!
Giving up is not part of the journey toward faith. Persistence, commitment and dedication are the requirement but the rewards and connection toward a spiritually fulfilling life, toward living the life that God intends is well worth the struggle.
Blessings on your road!
New Sights on the Run, Florida Vacation
New Sights on the Run
April 11, 2009
This week Andrew and Brendon and I spent the week at the beach for spring break! We came with Angie and her girls and Benjamin. It was great. I got to run three days. The first two days it was cool, perfect weather for running, even needed a long sleeve shirt.
Angie’s condo is on the marina with a path and I ran around that as well as the neighborhood. I love running in new places, looking at new things. This is a huge complete with little bungalows, lots of boats, pools and condos. Even early in the morning there were people out walking their dogs. For the most part they were friendly, I waved to everyone. I like to wave to people but after awhile it gets distracting.
I am so grateful, I even got my 10 miles in, the last long run before the marathon. I did that two days ago and the weather was nice then, one of the cool days. I’m glad for the willingness to keep going, originally I was going to put it off until today. I prayed for willingness and it came.
Today was typical Florida weather, warm and muggy. I was dripping almost from the first moment I set out the door. Of course I also forgot my sweat cloth and sweat was dripping from my face into my eyes. I drenched my shirt also. Oh well, it felt good to get back and take a good shower.
It is so great to enjoy this time away from the daily tasks of life. I really needed it!
April 11, 2009
This week Andrew and Brendon and I spent the week at the beach for spring break! We came with Angie and her girls and Benjamin. It was great. I got to run three days. The first two days it was cool, perfect weather for running, even needed a long sleeve shirt.
Angie’s condo is on the marina with a path and I ran around that as well as the neighborhood. I love running in new places, looking at new things. This is a huge complete with little bungalows, lots of boats, pools and condos. Even early in the morning there were people out walking their dogs. For the most part they were friendly, I waved to everyone. I like to wave to people but after awhile it gets distracting.
I am so grateful, I even got my 10 miles in, the last long run before the marathon. I did that two days ago and the weather was nice then, one of the cool days. I’m glad for the willingness to keep going, originally I was going to put it off until today. I prayed for willingness and it came.
Today was typical Florida weather, warm and muggy. I was dripping almost from the first moment I set out the door. Of course I also forgot my sweat cloth and sweat was dripping from my face into my eyes. I drenched my shirt also. Oh well, it felt good to get back and take a good shower.
It is so great to enjoy this time away from the daily tasks of life. I really needed it!
Wednesday, April 1, 2009
24 Days to Go!
24 DAys until the Kentucky Derby 1/2 marathon. I am so ready. This week I have 10 miles in my long run and I keep putting it off!
Putting things off... I really never thought of myself as a procrastanator but I guess I fit the profile on occassion... making excuses, finding other things to do, doing nothing, classic symptoms of sloth. Running in a lot of ways is like my life. The things I dread, don't want to do but have to do, are hard, take time, effort and energy I will tend to put off as long as I can. But when it gets uncomfortable and I begin to feel guilty, unproductive and irritable.
Prayers do a lot to move me into willingness. I have found that it only takes a small spark of willingness to push me into action. On the road tomorrow 5 miles and 10 this weekend! Happy procrastonating!
Putting things off... I really never thought of myself as a procrastanator but I guess I fit the profile on occassion... making excuses, finding other things to do, doing nothing, classic symptoms of sloth. Running in a lot of ways is like my life. The things I dread, don't want to do but have to do, are hard, take time, effort and energy I will tend to put off as long as I can. But when it gets uncomfortable and I begin to feel guilty, unproductive and irritable.
Prayers do a lot to move me into willingness. I have found that it only takes a small spark of willingness to push me into action. On the road tomorrow 5 miles and 10 this weekend! Happy procrastonating!
Sunday, March 29, 2009
Running of the Fools
A race, a 5K finished with speed (for me), exhilaration, relief and a little exhaustion. But it was a strong finish, I always save something for the end so that I can sprint in and look like the race was effortless.
I managed to corral Andrew into going with me. He was reluctant, and a little out of shape. We set the goal to run together but with him not engaging in much exercises since wrestling ended I was a little skeptical but he had made the commitment, and I was impressed with this. I was so appreciative that he would get up that early.
We set out, I encouraged and coached him to start out slow so he would have something to sustain him throughout. I knew from the start it was going to be rough on him. About 1/4 a mile in he was struggling and about 1/2 mile in he was pretty much done. He told me he wanted to walk that I could go on. I asked him if he was sure and he said yes. I admired his selflessness. ( He did manage to finish, three people from the end, the tail car following close behind and two elderly ladies pumping along.)
Away I went. The 5K speed is a little hard for me since I'm used to the long training runs necessary for 1/2 marathons which I am currently in training for. It's a struggle from the start, my breath is so loud sometimes I feel as if it is like a fog horn announcing my arrival to all I pass. Oh well, I heard the breath of others which soothed my ego. 2 miles in and with a 18:45 time I knew I was making good progress, I had made up for the slow start with Andrew which by the way may have proved to be a good training strategy. I pounded on, light on my feet but loud in my breath. (I think the fog horn sound travels from the groundedness and lightness of my feet, up through my body and by the time it reaches my lungs, it pushes out through my mouth as if to say,"get it out now!" This is reminiscent of the birth of my oldest son, I recall those same words. And I really wonder if the feeling is the same. It has been so long ago, I'm not sure.) I continued on despite the effort, gathering speed and finishing strong and fast. 38:36 I think my final time was, enough to earn a first place medal in my age group. (I'm glad Karen from the Y wasn't there she tends to beat me by 2 minutes)
As I reflect on this race one day out, I am grateful once again for the incredible gift of my legs, feet and body that carry me forward and allow me to persevere!
Run with strength, giving credit to the one who made you, and offer gratitude along the way! Blessings on your journey.
I managed to corral Andrew into going with me. He was reluctant, and a little out of shape. We set the goal to run together but with him not engaging in much exercises since wrestling ended I was a little skeptical but he had made the commitment, and I was impressed with this. I was so appreciative that he would get up that early.
We set out, I encouraged and coached him to start out slow so he would have something to sustain him throughout. I knew from the start it was going to be rough on him. About 1/4 a mile in he was struggling and about 1/2 mile in he was pretty much done. He told me he wanted to walk that I could go on. I asked him if he was sure and he said yes. I admired his selflessness. ( He did manage to finish, three people from the end, the tail car following close behind and two elderly ladies pumping along.)
Away I went. The 5K speed is a little hard for me since I'm used to the long training runs necessary for 1/2 marathons which I am currently in training for. It's a struggle from the start, my breath is so loud sometimes I feel as if it is like a fog horn announcing my arrival to all I pass. Oh well, I heard the breath of others which soothed my ego. 2 miles in and with a 18:45 time I knew I was making good progress, I had made up for the slow start with Andrew which by the way may have proved to be a good training strategy. I pounded on, light on my feet but loud in my breath. (I think the fog horn sound travels from the groundedness and lightness of my feet, up through my body and by the time it reaches my lungs, it pushes out through my mouth as if to say,"get it out now!" This is reminiscent of the birth of my oldest son, I recall those same words. And I really wonder if the feeling is the same. It has been so long ago, I'm not sure.) I continued on despite the effort, gathering speed and finishing strong and fast. 38:36 I think my final time was, enough to earn a first place medal in my age group. (I'm glad Karen from the Y wasn't there she tends to beat me by 2 minutes)
As I reflect on this race one day out, I am grateful once again for the incredible gift of my legs, feet and body that carry me forward and allow me to persevere!
Run with strength, giving credit to the one who made you, and offer gratitude along the way! Blessings on your journey.
Wednesday, March 18, 2009
Living On Your Own Terms
I too live on my own terms and I agree there is a price for that! I question policy and practices that aren't working or are isolating others. I am a parent of a child with a disability and am often in places where I have to offer up explanations... The price for nonconformity is sometimes high but the value is worth it!
Saturday, March 14, 2009
One Week Off
I decided to take this week off from any type of physical exercise. No running, weight lifting or yoga...I haven't run since March 4, today is March 14. I have vowed to get back on the road tomorrow. It has been good in a lot of ways. Gave my body rest and freed my time to do some other things. I spent a lot of time writing, have a deadline Monday, but Thursday was the day I was going to get everything caught up but I woke up with the worse migraine. Haven't had one of those in 13 years. What's up with that?
After spending a miserable day, I decided to get into see the doctor. 3:45 pm finally ended up after throwing up multiple times. Got a shot in the butt of phenegrin (spelling?) and Imatrix (spelling, sorry). One hour later, relief! And starving! Miracle drugs.
After spending a miserable day, I decided to get into see the doctor. 3:45 pm finally ended up after throwing up multiple times. Got a shot in the butt of phenegrin (spelling?) and Imatrix (spelling, sorry). One hour later, relief! And starving! Miracle drugs.
Friday, March 6, 2009
Maintaining Sanity in These Tough Economic Times
Times are tough economically right now. There is no denying the facts: unemployment is high, homes are being lost, spending is down.
How can we maintain our sanity and not participate in negative, woe is me thinking? How can we
stay calm? Through the exploration of these questions we are directed to the solution. If we allow for faith we are guided toward action.
Our current troubles are not new. People since the beginning of time have faced difficult economic situations, times when they were concerned about how they would feed their families, where they would live, and how they would manage to meet their needs.
Consider the people of Israel, wondering around in a dusty, dry, stifling desert. They complained, grumbled, and cried out in frustration. In the book of Nehemiah, the great leader reminds us of the love God always had for his people. He calmed their fears, reminded them of his great love for them and guided them toward the solution.
“In your goodness you told them what they should do. You fed them manna and gave them water to drink. Through forty years in the desert you provided all that they needed; their clothing never wore out, and their feet were not swollen with pain.” (Nehemiah 9:20-21)
I’ve still got a closet full of shoes and clothes to carry me through whatever the weather. I’ve got bread, peanut butter, hamburger helper in my pantry. I’ve got water, milk and Gatorade in my refrigerator. I’ve got access to a computer and gas to fuel my car. My home is heated or cooled depending on the temperature. I am taken care of.
In action, to protect me from the negative and hopeless attitudes, I have surrounded myself with a host of positive people to serve as my Nehemiah and remind me that God has never left my side despite lack of faith, sin or a multitude of insults. These people foster an attitude of hope, joy, and contentment.
Assessing my own situation, taking inventory of my actions keeps me focused and in the solution: Was I greedy? Did I buy too much stuff convincing myself I needed more? Did I forget being employed is a privilege, one I must honestly give of my skills? Was I lazy, apathetic, dishonest? Did I forget to give thanks and credit to those that have helped me along the way?
Careful analysis of these questions allows me to take positive action keeping me out of blame, depression, anger. In taking an honest inventory I begin to realize I can exercise some control over my situation and practice some discipline in my life.
Having extra time and less money allows me to explore opportunities for service. I can give of my time to help someone else who is in need. I can discuss my concerns with legislators and policy makers making suggestions based on intellect rather than emotion and fear. I can practice humility by accepting help if I need it.
Compared to the people of Israel wondering around, I’ve got it made. I doubt the current recession will continue for 40 years, but if it does… God will provide for me. He just asks that I do my part.
How can we maintain our sanity and not participate in negative, woe is me thinking? How can we
stay calm? Through the exploration of these questions we are directed to the solution. If we allow for faith we are guided toward action.
Our current troubles are not new. People since the beginning of time have faced difficult economic situations, times when they were concerned about how they would feed their families, where they would live, and how they would manage to meet their needs.
Consider the people of Israel, wondering around in a dusty, dry, stifling desert. They complained, grumbled, and cried out in frustration. In the book of Nehemiah, the great leader reminds us of the love God always had for his people. He calmed their fears, reminded them of his great love for them and guided them toward the solution.
“In your goodness you told them what they should do. You fed them manna and gave them water to drink. Through forty years in the desert you provided all that they needed; their clothing never wore out, and their feet were not swollen with pain.” (Nehemiah 9:20-21)
I’ve still got a closet full of shoes and clothes to carry me through whatever the weather. I’ve got bread, peanut butter, hamburger helper in my pantry. I’ve got water, milk and Gatorade in my refrigerator. I’ve got access to a computer and gas to fuel my car. My home is heated or cooled depending on the temperature. I am taken care of.
In action, to protect me from the negative and hopeless attitudes, I have surrounded myself with a host of positive people to serve as my Nehemiah and remind me that God has never left my side despite lack of faith, sin or a multitude of insults. These people foster an attitude of hope, joy, and contentment.
Assessing my own situation, taking inventory of my actions keeps me focused and in the solution: Was I greedy? Did I buy too much stuff convincing myself I needed more? Did I forget being employed is a privilege, one I must honestly give of my skills? Was I lazy, apathetic, dishonest? Did I forget to give thanks and credit to those that have helped me along the way?
Careful analysis of these questions allows me to take positive action keeping me out of blame, depression, anger. In taking an honest inventory I begin to realize I can exercise some control over my situation and practice some discipline in my life.
Having extra time and less money allows me to explore opportunities for service. I can give of my time to help someone else who is in need. I can discuss my concerns with legislators and policy makers making suggestions based on intellect rather than emotion and fear. I can practice humility by accepting help if I need it.
Compared to the people of Israel wondering around, I’ve got it made. I doubt the current recession will continue for 40 years, but if it does… God will provide for me. He just asks that I do my part.
Sunday, February 22, 2009
Uncovering New Levels of Fear
2-20-09
“Whoever wishes to come after me must deny himself, take up his cross, and follow me.” ~Mark 8:34
Each morning I take time to meditate on God’s word and a reflection of another author. This morning I was reading about limitations, and the author suggested taking up the cross of my own limitations. Currently my limitation comes from a fear that has been showing up in the writing process. I haven’t written in a week because of the fear of not doing it right, not being good enough.
Lately I have had to look within myself to find out where this fear has come from. I have uncovered more baggage to leave at Jesus’ feet. More stuff I’ve been carrying around that has inhibited my creativity.
I’ve been carrying the burden of other peoples attitudes I fear not writing something useful or something that even makes sense. I fear the process of committing.
In my work as an advocate I often allow myself to be shut down by the attitudes of others. I fear my own inadequacies in carrying the message of inclusion. This causes me to question my talent, my message, my strength, even God’s work within me.
This fear leads to apathy, and downright laziness. I loose focus and my commitment fades. Life can be like that sometimes. I become so focused on my own shortcomings I forget the true power and strength that called me to begin. I allow my fear to overtake me and force me into inactivity.
When this happens, I must step back from the outside influences, look within and search for the causes of so much fear. This allows me to recommit to my writing, my advocacy, my role as a mother, friend and wife with a new sense of purpose. I am able to put the burdens of what other people think of me, my work, my teaching and draw on the internal source of power. This allows me to stay on the path with commitment to my writing, my advocacy, my intentions, my life.
“Take up the cross of my own limitation”
~Mary Marrocco
Living Faith
“Whoever wishes to come after me must deny himself, take up his cross, and follow me.” ~Mark 8:34
Each morning I take time to meditate on God’s word and a reflection of another author. This morning I was reading about limitations, and the author suggested taking up the cross of my own limitations. Currently my limitation comes from a fear that has been showing up in the writing process. I haven’t written in a week because of the fear of not doing it right, not being good enough.
Lately I have had to look within myself to find out where this fear has come from. I have uncovered more baggage to leave at Jesus’ feet. More stuff I’ve been carrying around that has inhibited my creativity.
I’ve been carrying the burden of other peoples attitudes I fear not writing something useful or something that even makes sense. I fear the process of committing.
In my work as an advocate I often allow myself to be shut down by the attitudes of others. I fear my own inadequacies in carrying the message of inclusion. This causes me to question my talent, my message, my strength, even God’s work within me.
This fear leads to apathy, and downright laziness. I loose focus and my commitment fades. Life can be like that sometimes. I become so focused on my own shortcomings I forget the true power and strength that called me to begin. I allow my fear to overtake me and force me into inactivity.
When this happens, I must step back from the outside influences, look within and search for the causes of so much fear. This allows me to recommit to my writing, my advocacy, my role as a mother, friend and wife with a new sense of purpose. I am able to put the burdens of what other people think of me, my work, my teaching and draw on the internal source of power. This allows me to stay on the path with commitment to my writing, my advocacy, my intentions, my life.
“Take up the cross of my own limitation”
~Mary Marrocco
Living Faith
Saturday, February 7, 2009
Running With Your Hair Down
Today I got outside for the first time in several months. We have been given a respite in Tennessee from the cold, frigid temperatures with a breezy, partly sunny, 50 degree day. Perfect! I headed out on the running trail circling the scenic track of Drakes Creek Park, enjoying the breathing in of fresh clean air (much welcomed after the past two months of stale, sweaty, indoor treadmill running).
I turned a corner heading into the breeze. I became obsessed with the awareness of my cap, loosely sitting on my head. I considered tightening the strap to secure it more firmly on my head. Doing so disrupts the rhythm of the run and the breath pattern. I hesitated. Finally after the nagging thought and loose cap continued to disrupt my peace of mind, I did remove my cap. Facing into the breeze a new freedom emerged as my hair flew behind me, away from my face. Freedom! The moment occurred simultaneously with the muscles pumping in effort against the wind, my breathing became more intentional and strained.
Once again being present to all aspects of the run allowed me to enjoy the strain of muscles along with the freedom of my hair flying in the breeze. Realize and be present to all aspects of your journey. Search for the moments of enjoyment that if allowed can occur simultaneously with the straining experience of daily living.
"I will run with perseverance the race that is set before me!"
I turned a corner heading into the breeze. I became obsessed with the awareness of my cap, loosely sitting on my head. I considered tightening the strap to secure it more firmly on my head. Doing so disrupts the rhythm of the run and the breath pattern. I hesitated. Finally after the nagging thought and loose cap continued to disrupt my peace of mind, I did remove my cap. Facing into the breeze a new freedom emerged as my hair flew behind me, away from my face. Freedom! The moment occurred simultaneously with the muscles pumping in effort against the wind, my breathing became more intentional and strained.
Once again being present to all aspects of the run allowed me to enjoy the strain of muscles along with the freedom of my hair flying in the breeze. Realize and be present to all aspects of your journey. Search for the moments of enjoyment that if allowed can occur simultaneously with the straining experience of daily living.
"I will run with perseverance the race that is set before me!"
Saturday, January 31, 2009
And God said...
I have really been struggling this week with my tears. They keep coming. Someone will say something and tears flow. It feels as if the sadness, fear, all those scary emotions are sitting on top of my skin, open to being infected, wounded, rubbed raw!
My very good friend told me that I am in the process of developing thicker skin. The process is painful, involves being vulnerable and open to pain. God says, "That is OK, I am healing you. I am here to help you. You are doing my work in raising awareness about the needs of those with disabilities and those that love them. KEEP GOING AND CALL ON ME WHEN IT IS HARD."
So.......... I keep seeking God here on earth, those that offer encouragement, a shoulder to cry on, and new solutions to try. I keep falling on my knees and ask my God to help me. Then I remember it takes only the faith of a mustard seed, that is all the strength you need, to do the work of God.
This morning I participated in a conversation with God and here is what he said to me:
1. You have opened the door. You have helped spread my message but they are not ready to hear it. Pray for them.
2. Being my disciple is difficult and people may not listen NOW. Be patient, let me work on them and move on. If you spend too much time on those that are not ready you won't have time to find those that are.
3. Continue to ask for help. I want you to ask the difficult questions but be sure you are asking them of the right people. Ask me and I will tell you.
4. It's OK to cry, all my disciples do. I am here, I am helping you. Sometimes my people are hard of heart and they can hurt you. Remember, you have hurt others too. Make amends if you need to.
5. You are not wrong, bad, or inadequate. You are strong, loved and doing good work.
6. I AM THERE/HERE wherever you are. You are finding your way, you don't have to feel alone. My people are already in place to help you. Keep asking and pay attention so you don't miss them. I am helping you find them. PAY ATTENTION!
7. Please give those that are helping you a message for me, "You too are doing my work. Thank you and don't stop." They get scared too and need to hear my voice through you.
8. Be kind, be patient, be tolerant, and most of all be loving.
9. You have courage, don't be afraid to use it for me OK? Why don't you read the stories of my other disciples that came before you, Matthew might be a good place to start.
Finally:
10 I need you to help my people... DON'T STOP!
In keeping with #7, GOD AND I SAY THANK YOU for the support you give me each time you read my blog...
My very good friend told me that I am in the process of developing thicker skin. The process is painful, involves being vulnerable and open to pain. God says, "That is OK, I am healing you. I am here to help you. You are doing my work in raising awareness about the needs of those with disabilities and those that love them. KEEP GOING AND CALL ON ME WHEN IT IS HARD."
So.......... I keep seeking God here on earth, those that offer encouragement, a shoulder to cry on, and new solutions to try. I keep falling on my knees and ask my God to help me. Then I remember it takes only the faith of a mustard seed, that is all the strength you need, to do the work of God.
This morning I participated in a conversation with God and here is what he said to me:
1. You have opened the door. You have helped spread my message but they are not ready to hear it. Pray for them.
2. Being my disciple is difficult and people may not listen NOW. Be patient, let me work on them and move on. If you spend too much time on those that are not ready you won't have time to find those that are.
3. Continue to ask for help. I want you to ask the difficult questions but be sure you are asking them of the right people. Ask me and I will tell you.
4. It's OK to cry, all my disciples do. I am here, I am helping you. Sometimes my people are hard of heart and they can hurt you. Remember, you have hurt others too. Make amends if you need to.
5. You are not wrong, bad, or inadequate. You are strong, loved and doing good work.
6. I AM THERE/HERE wherever you are. You are finding your way, you don't have to feel alone. My people are already in place to help you. Keep asking and pay attention so you don't miss them. I am helping you find them. PAY ATTENTION!
7. Please give those that are helping you a message for me, "You too are doing my work. Thank you and don't stop." They get scared too and need to hear my voice through you.
8. Be kind, be patient, be tolerant, and most of all be loving.
9. You have courage, don't be afraid to use it for me OK? Why don't you read the stories of my other disciples that came before you, Matthew might be a good place to start.
Finally:
10 I need you to help my people... DON'T STOP!
In keeping with #7, GOD AND I SAY THANK YOU for the support you give me each time you read my blog...
Wednesday, January 28, 2009
Shake Up Your Fitness Routine
As the January winter days continue with the dark skies, cold and unpredictable weather, the urge to hibernate is strong. Who wants to lace up running shoes, don the multi layers of clothes and brave the elements to complete a training run? I have been wrestling with these thought of late. So what did I do, I signed up for the Derby 1/2 Marathon on April 25, 2009. I paid my fee, booked my hotel, I am now committed. With 3 months to go I have plenty of time.
I find that setting a goal, a race to run keeps me accountable and if I invest money I have additional motivation to brave the elements.
Having set the goal concentrate on other elements of your physical fitness. I have added the practice of Yoga. Along with the flexibility, and stretching of overused running muscles, I find the breath support and concentration of underused muscle groups refreshing. As a practice, whether running or doing yoga, I use meditative methods to bring awareness to my body, each "Sun Salutation", "Warrior" or "Chair Pose" brings awareness to a new body part while breathing toward extra extension and release.
Stay on the course, focus on the goal but enjoy the journey. The cold will pass, the sun will shine, and the roads will clear. Enjoy the winter stillness knowing with each breath you are strong, protected and blessed.
Namaste
I find that setting a goal, a race to run keeps me accountable and if I invest money I have additional motivation to brave the elements.
Having set the goal concentrate on other elements of your physical fitness. I have added the practice of Yoga. Along with the flexibility, and stretching of overused running muscles, I find the breath support and concentration of underused muscle groups refreshing. As a practice, whether running or doing yoga, I use meditative methods to bring awareness to my body, each "Sun Salutation", "Warrior" or "Chair Pose" brings awareness to a new body part while breathing toward extra extension and release.
Stay on the course, focus on the goal but enjoy the journey. The cold will pass, the sun will shine, and the roads will clear. Enjoy the winter stillness knowing with each breath you are strong, protected and blessed.
Namaste
Monday, January 26, 2009
Feather Rufflers
I am a feather ruffler and proud of it...
In an effort to bring about a new way of thinking about disability: What they bring to us rather than what we bring to them I am aware that feathers get ruffled. People don't like their feathers to get ruffled! Having others look in from the outside is unsettling. People do not want to think in terms of changing their behavior when the action is presented to them.
My thoughts constantly go to: "What am I doing that is wrong?" when my message is not received in a way in which I hope it to be. Sometimes the answer to this question is "nothing" with the realization that changing policy and attitude is difficult, painful even. People will only change what fits into their own concept of right and wrong. "I'm willing to change this, but don't even ask me to look at that."
I have wondered why this is. In the work I have done to get people to think about disability in a different way I have heard the following defenses: "We don't have the resources, it's too expensive." "We don't have that many people affected to warrant such a change." "We're doing enough already." I recognize these as valid concerns but ones that can be addressed with an attitude of willingness: willingness to grow past limitations, discover alternate and creative solutions and elicit the help of others along the way.
I hope you will remember the expression in the disability community: "Not about me without me." If you do not have those with disabilities and their families serving in key roles in your change process you may fail. These people may serve as feather rufflers, do not be afraid.
Blessings on your journey...
In an effort to bring about a new way of thinking about disability: What they bring to us rather than what we bring to them I am aware that feathers get ruffled. People don't like their feathers to get ruffled! Having others look in from the outside is unsettling. People do not want to think in terms of changing their behavior when the action is presented to them.
My thoughts constantly go to: "What am I doing that is wrong?" when my message is not received in a way in which I hope it to be. Sometimes the answer to this question is "nothing" with the realization that changing policy and attitude is difficult, painful even. People will only change what fits into their own concept of right and wrong. "I'm willing to change this, but don't even ask me to look at that."
I have wondered why this is. In the work I have done to get people to think about disability in a different way I have heard the following defenses: "We don't have the resources, it's too expensive." "We don't have that many people affected to warrant such a change." "We're doing enough already." I recognize these as valid concerns but ones that can be addressed with an attitude of willingness: willingness to grow past limitations, discover alternate and creative solutions and elicit the help of others along the way.
I hope you will remember the expression in the disability community: "Not about me without me." If you do not have those with disabilities and their families serving in key roles in your change process you may fail. These people may serve as feather rufflers, do not be afraid.
Blessings on your journey...
Tuesday, January 20, 2009
Is Your Faith Community a Place of Rest?
I have been doing a considerable amount of work with faith based communities in trying to help them be a place of rest and comfort for families that are facing the challenge of disability. I have used my skill as an educator and have drawn on my personal experience to help impart the knowledge that families are looking, desperately seeking a place of rest from the everyday challenge, fight, negotiation, patience, tolerance and persistence that are required to meet the needs of a person with a disability.
Meeting the needs of child can be difficult for any parent but add the additional complication of medical providers, impossible insurance companies, school and system policy, even legal procedures and a parent can come close to complete breakdown. Hillary Clinton was famous for her book about raising children entitled: "It Takes a Village." I have heard one mom comment that if it takes a village to raise a typical child it takes the resources of a small country to raise a child with a disability. I agree with this 100%.
Enter my day with me. My son's power wheelchair had a malfunction. Currently a part in his hand controls is in desperate need of repairs. If the button affected gets hit in the wrong way the chair will be rendered immobile, similar to the complication of running out of gas on a crowded interstate with two broken legs and no crutches within reach while facing a change of health insurance which allows for only two options for the in network benefits to be in affect that would allow for the repair of the broken legs which you learn about only as you are wheeled into the ER. (Did you keep up with that?)
This is what today is like for me. A phone call to the insurance company renders the following information after a 20 minute wait and two less than helpful attendant
who were "only doing their job" and following the necessary procedures:
Me: "My son's Permobile Wheelchair (motorized I explain) is in need of repair. The company that provided the chair does not accept United Healthcare."
Them: "Let me search our data base for a provider within a 30 mile radius."
After several moments of silence the attendant comes up with a list of providers under the category of DURABLE MEDICAL EQUIPMENT. Please note that durable medical equipment covers everything from wheelchair repair to oxygen.
Me: "None of those providers are authorized to fix a Permobile wheelchair. Do you have any listings for Nashville?"
Them: "What is the zip code?"
Me: “There are several zip codes in Nashville; I do not know them all."
Them: "I can't help you without a zip code."
Dialogue goes on for several moments as I try to get her to understand without access to a phone book or the internet at this time I can't identify the zip codes. I am additionally trying to get her to understand that taking a Permobile to an unauthorized dealer is similar to taking a Volvo to a Chevy dealer.
I insist the attendant put several notes regarding our conversation as well as the urgency of the repair into her database, (remember his chair is similar to a person's legs, it is his main form of mobility). I don't know how long the wait will be, she doesn't know how long the wait will be. I struggle to keep the tears back as I pray for faith as well as the patience to wait. I know this is only the first step in the process. Once approval is given, there is some type of negotiations as to the cost and then there is the process of securing a doctor's prescription from Vanderbilt for the repair (a similiarily difficult maze to get through) followed by taking the chair for an assessment, waiting for the part, taking the chair back and hope for a fix on the first shot. (Still with me?)
Sometimes having a child with a disability is like this. Days and weeks of problem solving and difficult procedures make a parent very tired and we struggle for respite from the fight. A faith community is a good place for respite but only if a complicated process of educating and overcoming attitudes is not necessary.
Finding caring and compassionate individuals that will listen to the frustration and anxiety in a parent’s voice is often difficult but vitally necessary! Problem solving, taking some of the weight off weary shoulders is one of the best remedies those who care can offer. In order for a faith community to offer this, they must be willing to enter into the anxiety with the parent and devote time and energy to the needs, knowing often the parent will not know what they need. Sometimes it may just be a prayer, time and a kind ear. Other times a more complicated and innovative solution is required. Caring and compassionate individuals must be willing to enter in and offer peace, hope, and solutions.
Be willing to make things as easy as possible. Cheryl Rosenberg stated in an article for "Church and Society," stated: "It seems (describing parents) the have to fight for everything that their child needs - they do not want to fight for their child in church."
Blessings
Meeting the needs of child can be difficult for any parent but add the additional complication of medical providers, impossible insurance companies, school and system policy, even legal procedures and a parent can come close to complete breakdown. Hillary Clinton was famous for her book about raising children entitled: "It Takes a Village." I have heard one mom comment that if it takes a village to raise a typical child it takes the resources of a small country to raise a child with a disability. I agree with this 100%.
Enter my day with me. My son's power wheelchair had a malfunction. Currently a part in his hand controls is in desperate need of repairs. If the button affected gets hit in the wrong way the chair will be rendered immobile, similar to the complication of running out of gas on a crowded interstate with two broken legs and no crutches within reach while facing a change of health insurance which allows for only two options for the in network benefits to be in affect that would allow for the repair of the broken legs which you learn about only as you are wheeled into the ER. (Did you keep up with that?)
This is what today is like for me. A phone call to the insurance company renders the following information after a 20 minute wait and two less than helpful attendant
who were "only doing their job" and following the necessary procedures:
Me: "My son's Permobile Wheelchair (motorized I explain) is in need of repair. The company that provided the chair does not accept United Healthcare."
Them: "Let me search our data base for a provider within a 30 mile radius."
After several moments of silence the attendant comes up with a list of providers under the category of DURABLE MEDICAL EQUIPMENT. Please note that durable medical equipment covers everything from wheelchair repair to oxygen.
Me: "None of those providers are authorized to fix a Permobile wheelchair. Do you have any listings for Nashville?"
Them: "What is the zip code?"
Me: “There are several zip codes in Nashville; I do not know them all."
Them: "I can't help you without a zip code."
Dialogue goes on for several moments as I try to get her to understand without access to a phone book or the internet at this time I can't identify the zip codes. I am additionally trying to get her to understand that taking a Permobile to an unauthorized dealer is similar to taking a Volvo to a Chevy dealer.
I insist the attendant put several notes regarding our conversation as well as the urgency of the repair into her database, (remember his chair is similar to a person's legs, it is his main form of mobility). I don't know how long the wait will be, she doesn't know how long the wait will be. I struggle to keep the tears back as I pray for faith as well as the patience to wait. I know this is only the first step in the process. Once approval is given, there is some type of negotiations as to the cost and then there is the process of securing a doctor's prescription from Vanderbilt for the repair (a similiarily difficult maze to get through) followed by taking the chair for an assessment, waiting for the part, taking the chair back and hope for a fix on the first shot. (Still with me?)
Sometimes having a child with a disability is like this. Days and weeks of problem solving and difficult procedures make a parent very tired and we struggle for respite from the fight. A faith community is a good place for respite but only if a complicated process of educating and overcoming attitudes is not necessary.
Finding caring and compassionate individuals that will listen to the frustration and anxiety in a parent’s voice is often difficult but vitally necessary! Problem solving, taking some of the weight off weary shoulders is one of the best remedies those who care can offer. In order for a faith community to offer this, they must be willing to enter into the anxiety with the parent and devote time and energy to the needs, knowing often the parent will not know what they need. Sometimes it may just be a prayer, time and a kind ear. Other times a more complicated and innovative solution is required. Caring and compassionate individuals must be willing to enter in and offer peace, hope, and solutions.
Be willing to make things as easy as possible. Cheryl Rosenberg stated in an article for "Church and Society," stated: "It seems (describing parents) the have to fight for everything that their child needs - they do not want to fight for their child in church."
Blessings
Friday, January 16, 2009
What Are My Motives?
I have been wrestling with my commitment to the next race... I was not sure if I wanted to commit to full marathon (26.2 miles) or a half marathon (13.1 miles). As those of you know that run, the training for a full is very time consuming not to mention the incredible discipline and determination it takes to actually complete the run. I am always amazed at the runners I read about that just love the sport and float through 70 miles a week with no problem. Yesterday I was reading about such a woman, Amy Burrow from Nashville, a master's runner(which means she is over 40) who is continuing to clock in 70 miles a week, get her degree in nursing despite a double hip replacement. Is she Wonder Woman? I admire her commitment to running as I know it must be a painful process. She stated that she just loved it.
Then a second though came to my mind. Despite the doctors advice, with a double hip replacement, was she just stubborn. What were her motives? I really have no idea her motives, it seems that it is just something she loves and she is not ready to give it up. This question has been a constant companion of mine as I go through the discerning process in determining the course God wants me to be on in my work with disability. What are my motives? This question has kept me humble. I search for the fame motive, and use that as a guide. If I am seeking recognition, fame and fortune then I am definitely doing the wrong thing as I seem to be getting very little of all three. I have gotten encouragement from others and have edited the efforts of others with similar goals to help me. Fortune has not come yet, but despite this fact God has provided and I continue to "act as if."
What is my motive? is a guiding question, one that keeps me on course and I am grateful for that. While running I know that I will never join the ranks of elite racer, but that is OK with me. Now I continue to put the fact that I will never join the ranks of "elite advocate" in the work I do with disability and most days that is OK.
Blessings and "Remember how great...the Lord is, and fight." ~Nehemiah 4:9
Then a second though came to my mind. Despite the doctors advice, with a double hip replacement, was she just stubborn. What were her motives? I really have no idea her motives, it seems that it is just something she loves and she is not ready to give it up. This question has been a constant companion of mine as I go through the discerning process in determining the course God wants me to be on in my work with disability. What are my motives? This question has kept me humble. I search for the fame motive, and use that as a guide. If I am seeking recognition, fame and fortune then I am definitely doing the wrong thing as I seem to be getting very little of all three. I have gotten encouragement from others and have edited the efforts of others with similar goals to help me. Fortune has not come yet, but despite this fact God has provided and I continue to "act as if."
What is my motive? is a guiding question, one that keeps me on course and I am grateful for that. While running I know that I will never join the ranks of elite racer, but that is OK with me. Now I continue to put the fact that I will never join the ranks of "elite advocate" in the work I do with disability and most days that is OK.
Blessings and "Remember how great...the Lord is, and fight." ~Nehemiah 4:9
Subscribe to:
Posts (Atom)
