About My Mom...
Donation protected
Hello friends and strangers. I’m writing today to ask for some help. (Ok, I need a lot of help.) You see, it’s about my mom, Terri Sartwell-Rathbun…
She was born in Independence, Missouri in 1949 (sorry, Mom), right at the end of the polio epidemic. While still a toddler, she contracted the disease and like so many others, the polio consumed her neuromuscular system - all the way up to her neck. The polio receded - but left her unable to walk. Despite this, she has survived and thrived as an independent woman, providing for herself and contributing to society and her community. For her first four decades, she made due with braces and crutches. When her shoulders gave out, she switched to a wheelchair. When post-polio syndrome appeared, she switched to an automatic wheelchair. She does not stop and you don’t want to get in front of that chair when she is on a mission!
As a boy, I just assumed that I too would grow up to walk on crutches. But really, what I learned is that we all take our legs, and our mobility, totally for granted. (If you doubt this, try dragging yourself across the room with your arms and hoisting yourself onto the toilet without using your legs - then imagine that’s every night for the rest of your life. Sounds awesome!)
Mobility. Is. Life. You have to be able to move from one place to another.
I also learned that subtle and unintended discrimination against the disabled compounds their struggle of living with a disability. Mom always just pushed through those barriers the best she could. As a disabled woman, she put herself through college and built a career as a substance abuse counselor - working mostly with people who were also very poor and dealing with mental illness. That’s not an easy job (and the pay is nowhere near commensurate) but she did it and she loved it.
For most of my life, I’ve watched my mom struggle with her self-worth and inherent value as a human being because of this disability. In many ways, that struggle has defined her journey. The beautiful thing is that it is this personal pain that helped her empathize with and seek to help others who were struggling to find their own value - and to find healing of addiction and mental wounds through that process. For me, she’s always been an example of strength that I look to in moments of weakness. When I think that I can’t do something, I remember what she has done. Even in retirement - she learned to dance in a manual wheelchair and has performed with various groups, at various events - one time with the Heart of America Wind Symphony. She has shared her story with dance students throughout her area via talks about inclusivity. She goes and sings for people dying in hospice care. She volunteers weekly with the Child Abuse Prevention Association. She participates in her community - advising on issues of accessibility. She keeps the Barnes & Noble Cafe solvent.
My mom was single from the time I was 5 until I was 18. I worried constantly about her being on her own. What would happen if she fell and no-one was around? What would happen if she had car trouble? What would happen if there were an accident? She made it through safely, though, and that fear largely subsided when she re-married during my first year of college - to her long time friend and now wonderful husband Hubert.
This brings me to last week. This was my step-dad’s Facebook post:
“Well, Terri Sartwell-Rathbun cheated death today. As she was turning off of Noland Rd onto I 70 she felt something kind of pop in the steering and it became harder to make left turns. She made it home OK. I went out and looked at the front end and the left front wheel was straight but the right front wheel was angled about 15 degrees to the right. I started the engine and turning the steering to the right was easy but very hard to turn left. I called a tow service to take it to our mechanic. As the tow truck driver was backing it out of the garage the right front wheel went totally to the right. The tow driver said the steering gear had just broken. Terri was lucky, blessed, fortunate(what ever you want to call it) to make it the 10 miles she had to drive to get home. Wow, what a close call!”
My mom was driving her specially equipped van. This van, for which they had to take a second mortgage on the house in order to acquire (used), has been a constant pain. I’ve been with my mom on many occasions when the door won’t open, or the ramp won’t deploy - sometimes leaving her sitting in her wheelchair in a freezing cold parking lot. Sometimes she can’t get out of the van and just has to go home. Sometimes Hubert has to come and rescue her somewhere. All of this is irritating but she’s been dealing with “irritating” all her life. What happened last week, however, would have almost certainly killed her (and hurt others) had it happened 5 minutes sooner while she was on the freeway. The reality is that her van, going 70 mph, would have flipped and rolled until it stopped. Literally, my worst nightmare.
The cruel irony of being disabled is that you have increased costs and decreased earning potential. My mom and stepfather are both retired and survive on a modest, fixed income. They both worked very hard, saved and enjoy relative financial stability but a new, reliable van costs between $58,000.00 to $65,000.00 and this is simply out-of-reach for them, as it would be for any lower middle income family. Why so expensive? The van has to be adapted for wheelchair accessibility and then have hand controls added. People who can’t use their legs can drive, but they control the gas pedal and the brake pedal with their hands!
I have fantasized about being able to buy her a new, specialized van and surprise her with it in the driveway. (Yes, when you have a disabled mother, you fantasize about safe mini-vans.) That is just not possible for me to do in the near future but after last week’s “close call”, I feel like I have to do something NOW. So, humbly, I’m asking for help to get my mother into a safe and reliable vehicle so that she can continue to live her life - so that this one, giant burden is lifted. If you want to help and chip in $50 or more, I’ll send you a cool abstract artwork (by me), printed on a license plate - just make sure you email me so I know where to send it! If you want a super cool license plate but can’t give $50 - just let me know, contribute what you can, and I’ll send you one too. I have one on my car. If we exceed our goal - the excess funds will be given to Rotary International to help with their work in aiding the disabled.
Every little bit will help. Although repairs have been made to her existing van, I want to get her out of it as soon as possible, so the funds are needed immediately.
I can’t thank you enough for reading.
She was born in Independence, Missouri in 1949 (sorry, Mom), right at the end of the polio epidemic. While still a toddler, she contracted the disease and like so many others, the polio consumed her neuromuscular system - all the way up to her neck. The polio receded - but left her unable to walk. Despite this, she has survived and thrived as an independent woman, providing for herself and contributing to society and her community. For her first four decades, she made due with braces and crutches. When her shoulders gave out, she switched to a wheelchair. When post-polio syndrome appeared, she switched to an automatic wheelchair. She does not stop and you don’t want to get in front of that chair when she is on a mission!
As a boy, I just assumed that I too would grow up to walk on crutches. But really, what I learned is that we all take our legs, and our mobility, totally for granted. (If you doubt this, try dragging yourself across the room with your arms and hoisting yourself onto the toilet without using your legs - then imagine that’s every night for the rest of your life. Sounds awesome!)
Mobility. Is. Life. You have to be able to move from one place to another.
I also learned that subtle and unintended discrimination against the disabled compounds their struggle of living with a disability. Mom always just pushed through those barriers the best she could. As a disabled woman, she put herself through college and built a career as a substance abuse counselor - working mostly with people who were also very poor and dealing with mental illness. That’s not an easy job (and the pay is nowhere near commensurate) but she did it and she loved it.
For most of my life, I’ve watched my mom struggle with her self-worth and inherent value as a human being because of this disability. In many ways, that struggle has defined her journey. The beautiful thing is that it is this personal pain that helped her empathize with and seek to help others who were struggling to find their own value - and to find healing of addiction and mental wounds through that process. For me, she’s always been an example of strength that I look to in moments of weakness. When I think that I can’t do something, I remember what she has done. Even in retirement - she learned to dance in a manual wheelchair and has performed with various groups, at various events - one time with the Heart of America Wind Symphony. She has shared her story with dance students throughout her area via talks about inclusivity. She goes and sings for people dying in hospice care. She volunteers weekly with the Child Abuse Prevention Association. She participates in her community - advising on issues of accessibility. She keeps the Barnes & Noble Cafe solvent.
My mom was single from the time I was 5 until I was 18. I worried constantly about her being on her own. What would happen if she fell and no-one was around? What would happen if she had car trouble? What would happen if there were an accident? She made it through safely, though, and that fear largely subsided when she re-married during my first year of college - to her long time friend and now wonderful husband Hubert.
This brings me to last week. This was my step-dad’s Facebook post:
“Well, Terri Sartwell-Rathbun cheated death today. As she was turning off of Noland Rd onto I 70 she felt something kind of pop in the steering and it became harder to make left turns. She made it home OK. I went out and looked at the front end and the left front wheel was straight but the right front wheel was angled about 15 degrees to the right. I started the engine and turning the steering to the right was easy but very hard to turn left. I called a tow service to take it to our mechanic. As the tow truck driver was backing it out of the garage the right front wheel went totally to the right. The tow driver said the steering gear had just broken. Terri was lucky, blessed, fortunate(what ever you want to call it) to make it the 10 miles she had to drive to get home. Wow, what a close call!”
My mom was driving her specially equipped van. This van, for which they had to take a second mortgage on the house in order to acquire (used), has been a constant pain. I’ve been with my mom on many occasions when the door won’t open, or the ramp won’t deploy - sometimes leaving her sitting in her wheelchair in a freezing cold parking lot. Sometimes she can’t get out of the van and just has to go home. Sometimes Hubert has to come and rescue her somewhere. All of this is irritating but she’s been dealing with “irritating” all her life. What happened last week, however, would have almost certainly killed her (and hurt others) had it happened 5 minutes sooner while she was on the freeway. The reality is that her van, going 70 mph, would have flipped and rolled until it stopped. Literally, my worst nightmare.
The cruel irony of being disabled is that you have increased costs and decreased earning potential. My mom and stepfather are both retired and survive on a modest, fixed income. They both worked very hard, saved and enjoy relative financial stability but a new, reliable van costs between $58,000.00 to $65,000.00 and this is simply out-of-reach for them, as it would be for any lower middle income family. Why so expensive? The van has to be adapted for wheelchair accessibility and then have hand controls added. People who can’t use their legs can drive, but they control the gas pedal and the brake pedal with their hands!
I have fantasized about being able to buy her a new, specialized van and surprise her with it in the driveway. (Yes, when you have a disabled mother, you fantasize about safe mini-vans.) That is just not possible for me to do in the near future but after last week’s “close call”, I feel like I have to do something NOW. So, humbly, I’m asking for help to get my mother into a safe and reliable vehicle so that she can continue to live her life - so that this one, giant burden is lifted. If you want to help and chip in $50 or more, I’ll send you a cool abstract artwork (by me), printed on a license plate - just make sure you email me so I know where to send it! If you want a super cool license plate but can’t give $50 - just let me know, contribute what you can, and I’ll send you one too. I have one on my car. If we exceed our goal - the excess funds will be given to Rotary International to help with their work in aiding the disabled.
Every little bit will help. Although repairs have been made to her existing van, I want to get her out of it as soon as possible, so the funds are needed immediately.
I can’t thank you enough for reading.
Organizer and beneficiary
Shawn Ewbank
Organizer
Blue Springs, MO
Theresa Rathbun
Beneficiary
