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...
Saturday, January 31, 2009
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
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