A friend's dream of owning a gift and floral shop dies after two years; the bankruptcy thrusts her family into a personal financial crisis as well.
A company that thrives on customers' abilities to spend hefty amounts of disposable income begins the tough business of staying afloat by laying off hundreds - eventually thousand - of employees.
A college that existed for more than a century through the grace of supporters and grit of tenacious faculty, staff and administrators boldly decides to sell its assets in an act of faith some regard as faithless.
Individuals across this country (indeed, the world) continue to experience tough - even dire - times because they do not have sufficient means to continue living as they've been accustomed.
I found this audio file tonight and was reminded that this radio ministry, too, has become a casualty of the economy. Rev. Peter Marty did such a beautiful job with this unique ministry. I know many are missing the blessing of his weekly broadcasts.
I couldn't resist listening again to the opportunity he offered me to join him in a broadcast more than a year ago. The interview - his questions, my musings, his wonderful way of tying it all together - made me smile.
Yes, there still is involuntary joy in the midst of it all. May you experience joy as you have need!
http://gracematters.org/2008listen.html#March
Saturday, June 20, 2009
Sunday, May 3, 2009
What You See, What You Get
As printed in
BE Magazine / Spring 2009 issue
My first strands of gray hair made themselves known during Mrs. Singer’s 8th Grade English class. Actually, Mark Bostrom, the young man who would—in my freshman year—become my first official date, leaned forward to softly herald their arrival from the desk immediately behind mine: “You have gray hair. Did you know that?”
“Where?” I inquired, for I had not known it.
“Back here,” he said, reaching up to move a section of hair near the nape of my neck.
I pretended to listen to Mrs. Singer and tried not to flinch when Mark—without warning—pulled out a strand. He handed it over my shoulder to affirm his discovery, and I looked with fascination at the evidence. Before I could formulate a response, he said: “Do you want me to pull them out? There are probably eight. Maybe more.”
What!?!
I cocked my head just enough to let him know I had heard his offer, but not enough to attract Mrs. Singer’s attention. Eight of them? He had counted? The thought fascinated me, but his offer to pull them out fascinated me even more. Obviously Mark believed that women weren’t supposed to have gray hair—that we were to rid ourselves of its existence by removal or, possibly, concealment.
Too young to have peers facing similar propositions, the moment felt momentous: My 13-year-old body was aging prematurely. How was I to respond? What kind of woman I would I be?
I shifted my position enough to lean back and whisper a decisive answer.
“No,” I told him. “Don’t pull them. They’re mine.”
Then I turned, looked him in the eye and flashed a smile. He smiled back.
Thirty years and tens of thousands of gray and white strands later, I have not looked back. I am now in my middle 40s with hair color that defies my age. I’m not as old as some believe me to be, and I’m ok with that. It is what it is.
In 8th Grade, I had no way of knowing that this don’t-assume-you-know-me-by-my-looks testament would help me identify with my oldest son, a young man of nearly 18 years who was born with physical and intellectual disabilities. His life-limiting circumstances have shaped not only his life’s course, but mine. And from the moment I first laid eyes on him, the deepest part of me continues to cry out, “Don’t regard him as less than anyone else. He’s mine.”
I certainly understand Stross is not “mine” in the most possessive sense of the word. I regard his life as mine to protect and guide. I also revere the wonder of who he is and regard him as a treasure to be shared with whomever can accept him for who he is: an incredible young man who lives nearly every moment with palpable joy.
As an infant, the extent of Stross’ disabilities was nearly imperceptible, for others couldn’t see he lacked the nerves necessary to walk, nor could they notice that he soiled ostomy pouches rather than diapers. Most of all, they certainly couldn’t tell that he would grow up only possessing the problem-solving skills of a seven-year-old. It took his father and me more than a decade to discover that ourselves.
Unlike that day in Mrs. Singer’s classroom, no one leaned forward to tap my husband and me on the shoulder then whisper the revelation of Stross’ rare birth condition into our ears. Our knowledge came as suddenly and surprisingly as the moment of his birth. Then, as with the moment of clarity when I accepted my gray hair, I accepted the reality of Stross’ altered existence by answering a question. This time the question was: “What kind of mother am I going to be?”
Since the day of his birth, Stross has helped me define my role by living as a constant source of unadulterated joy; and his joy exists regardless of circumstance. It’s a witness I value more with every passing year, and I continue to aspire to live as he does, taking in each moment as if it was designed for pleasure.
For instance, some legal papers arrived in our mailbox a few weeks ago, outlining the need for him to establish my husband and me as his legal guardians. As the papers clearly indicate, the action is necessary because his “decision-making capacity is so impaired that [he] is unable to care for [his] personal safety or to attend to or provide for necessities [food, clothing, shelter, medical needs] without which physical injury or illness may occur.”
As I read the stark legalese, a renewed sense of grief swept over me, and I choked with emotion. My son was nearly 18. He should be anticipating new relationships with roommates and dorm-mates, not being asked to re-define his relationship with his parents by relinquishing his right to make certain life decisions.
When my husband noticed I had been crying, I held up the papers in explanation and offered a simple statement: “The guardianship paperwork arrived.”
Stross snapped to attention and looked my direction with a face that beamed excitement. He sat taller in his wheelchair and lifted his hands with exclamation: “My lawyer sent me papers? Are those from my lawyer, Mom? Do I need to sign?”
I was momentarily speechless—just long enough to make the emotional trek from my path of self-pity to his land of endless delight.
He cued my response again: “Do I need to come up there and sign my lawyer’s papers, Mom?”
His repeated use of the term “my lawyer” brought an involuntary smile. This was about his life, and he owned it. He deserved a response.
“Well, yes,” I said. “I guess we should just get these signed right now, huh? Why wait?”
“Yeah. Let’s do it,” he said, beginning to wheel up the ramp to our dining room.
Why indeed? Our life as a family is what it is. We have a 17-year-old son who won’t be doing the same things his chronological peers are when his eighteenth birthday arrives. In fact, he’ll likely never keep pace with others his age for most of the things that comprise daily life. And that’s ok. It really is.
Maybe I started to learn that lesson in 8th grade and I have my early strands of gray hair to thank. Maybe realizing that my life might not track like that of my chronological peers has helped me as a mom.
As Stross regularly demonstrates, you just have to claim the life you are given, and then keep moving forward. After all, what you see and what you get don’t have to match. Sometimes what you get is far, far better.
BE Magazine / Spring 2009 issue
My first strands of gray hair made themselves known during Mrs. Singer’s 8th Grade English class. Actually, Mark Bostrom, the young man who would—in my freshman year—become my first official date, leaned forward to softly herald their arrival from the desk immediately behind mine: “You have gray hair. Did you know that?”
“Where?” I inquired, for I had not known it.
“Back here,” he said, reaching up to move a section of hair near the nape of my neck.
I pretended to listen to Mrs. Singer and tried not to flinch when Mark—without warning—pulled out a strand. He handed it over my shoulder to affirm his discovery, and I looked with fascination at the evidence. Before I could formulate a response, he said: “Do you want me to pull them out? There are probably eight. Maybe more.”
What!?!
I cocked my head just enough to let him know I had heard his offer, but not enough to attract Mrs. Singer’s attention. Eight of them? He had counted? The thought fascinated me, but his offer to pull them out fascinated me even more. Obviously Mark believed that women weren’t supposed to have gray hair—that we were to rid ourselves of its existence by removal or, possibly, concealment.
Too young to have peers facing similar propositions, the moment felt momentous: My 13-year-old body was aging prematurely. How was I to respond? What kind of woman I would I be?
I shifted my position enough to lean back and whisper a decisive answer.
“No,” I told him. “Don’t pull them. They’re mine.”
Then I turned, looked him in the eye and flashed a smile. He smiled back.
Thirty years and tens of thousands of gray and white strands later, I have not looked back. I am now in my middle 40s with hair color that defies my age. I’m not as old as some believe me to be, and I’m ok with that. It is what it is.
In 8th Grade, I had no way of knowing that this don’t-assume-you-know-me-by-my-looks testament would help me identify with my oldest son, a young man of nearly 18 years who was born with physical and intellectual disabilities. His life-limiting circumstances have shaped not only his life’s course, but mine. And from the moment I first laid eyes on him, the deepest part of me continues to cry out, “Don’t regard him as less than anyone else. He’s mine.”
I certainly understand Stross is not “mine” in the most possessive sense of the word. I regard his life as mine to protect and guide. I also revere the wonder of who he is and regard him as a treasure to be shared with whomever can accept him for who he is: an incredible young man who lives nearly every moment with palpable joy.
As an infant, the extent of Stross’ disabilities was nearly imperceptible, for others couldn’t see he lacked the nerves necessary to walk, nor could they notice that he soiled ostomy pouches rather than diapers. Most of all, they certainly couldn’t tell that he would grow up only possessing the problem-solving skills of a seven-year-old. It took his father and me more than a decade to discover that ourselves.
Unlike that day in Mrs. Singer’s classroom, no one leaned forward to tap my husband and me on the shoulder then whisper the revelation of Stross’ rare birth condition into our ears. Our knowledge came as suddenly and surprisingly as the moment of his birth. Then, as with the moment of clarity when I accepted my gray hair, I accepted the reality of Stross’ altered existence by answering a question. This time the question was: “What kind of mother am I going to be?”
Since the day of his birth, Stross has helped me define my role by living as a constant source of unadulterated joy; and his joy exists regardless of circumstance. It’s a witness I value more with every passing year, and I continue to aspire to live as he does, taking in each moment as if it was designed for pleasure.
For instance, some legal papers arrived in our mailbox a few weeks ago, outlining the need for him to establish my husband and me as his legal guardians. As the papers clearly indicate, the action is necessary because his “decision-making capacity is so impaired that [he] is unable to care for [his] personal safety or to attend to or provide for necessities [food, clothing, shelter, medical needs] without which physical injury or illness may occur.”
As I read the stark legalese, a renewed sense of grief swept over me, and I choked with emotion. My son was nearly 18. He should be anticipating new relationships with roommates and dorm-mates, not being asked to re-define his relationship with his parents by relinquishing his right to make certain life decisions.
When my husband noticed I had been crying, I held up the papers in explanation and offered a simple statement: “The guardianship paperwork arrived.”
Stross snapped to attention and looked my direction with a face that beamed excitement. He sat taller in his wheelchair and lifted his hands with exclamation: “My lawyer sent me papers? Are those from my lawyer, Mom? Do I need to sign?”
I was momentarily speechless—just long enough to make the emotional trek from my path of self-pity to his land of endless delight.
He cued my response again: “Do I need to come up there and sign my lawyer’s papers, Mom?”
His repeated use of the term “my lawyer” brought an involuntary smile. This was about his life, and he owned it. He deserved a response.
“Well, yes,” I said. “I guess we should just get these signed right now, huh? Why wait?”
“Yeah. Let’s do it,” he said, beginning to wheel up the ramp to our dining room.
Why indeed? Our life as a family is what it is. We have a 17-year-old son who won’t be doing the same things his chronological peers are when his eighteenth birthday arrives. In fact, he’ll likely never keep pace with others his age for most of the things that comprise daily life. And that’s ok. It really is.
Maybe I started to learn that lesson in 8th grade and I have my early strands of gray hair to thank. Maybe realizing that my life might not track like that of my chronological peers has helped me as a mom.
As Stross regularly demonstrates, you just have to claim the life you are given, and then keep moving forward. After all, what you see and what you get don’t have to match. Sometimes what you get is far, far better.
Sunday, April 26, 2009
Lessons My Son and I Need to Learn
I spoke at a Friends and Family Recognition Dinner at Opportunity Village in Clear Lake, Iowa, today. What a wonderful place with wonderful staff, volunteers and financial supporters.
Mark and I are deeply grateful for the services Stross receives through them. It's clear that those connected to the Village value and respect each person who is benefitting from their services.
Afterward, a man asked if I had the "five things" I mentioned in my speech written within the pages of Involuntary Joy. I don't. He reassured me that he had them written on his napkin and then showed me precisely that.
In case anyone else finds them worth noting -- either on a napkin or something else -- here are the five life lessons I am aware that both Stross and I need to keep working on:
1 - Brief encounters are deceiving: Don't judge anyone by what you see-or even hear. Get to know them and accept them for who they are. They are using the skills and abilities they've developed to this point, just like you are. No one's farther down the path - just on a journey different than yours. You should look for the life lessons they can teach you as you continue on your own life's course.
2 - Focus on your abilities and what you can do, not what you cannot. Abilities are the starting point for possibilities. They just are.
3 - Ask for help when in need. This one works best when you've gotten fairly good at #2. Others can help you accomplish things that may seem overwhelming on your own. It's not a sign of weakness to ask for help. On the contrary: It's wisdom at work. Empowerment begins when you facilitate accommodations that can help you overcome things in your path. Don't be satisfied to stay in one place if someone else can help you maneuver a bit farther down the road.
4 - Embrace a way of living and doing that works for you. Your life and how you live it needs to be as unique as you are. This may mean redefining things you used to take for granted: Who comprises family, what measures success, how you regard faith. Something happened that caused your world to feel a bit upside down. It makes sense you'll have gained a new perspective on a lot of things because of that.
5 - Look for joy in the midst of it all - it's there. It really is. Holocaust survivors attest to this truth. Even victims of other horrendous crimes have discovered this truth on their way back from despair. Life is amazing and deeply beautiful. Your life is no exception.
I think everyone has something or someone they can look to as a "joy compass." It's my deep prayer that you find yours. Mine is named Stross. I'll forever be grateful for the lessons he brings my way, even if involuntarily so.
Mark and I are deeply grateful for the services Stross receives through them. It's clear that those connected to the Village value and respect each person who is benefitting from their services.
Afterward, a man asked if I had the "five things" I mentioned in my speech written within the pages of Involuntary Joy. I don't. He reassured me that he had them written on his napkin and then showed me precisely that.
In case anyone else finds them worth noting -- either on a napkin or something else -- here are the five life lessons I am aware that both Stross and I need to keep working on:
1 - Brief encounters are deceiving: Don't judge anyone by what you see-or even hear. Get to know them and accept them for who they are. They are using the skills and abilities they've developed to this point, just like you are. No one's farther down the path - just on a journey different than yours. You should look for the life lessons they can teach you as you continue on your own life's course.
2 - Focus on your abilities and what you can do, not what you cannot. Abilities are the starting point for possibilities. They just are.
3 - Ask for help when in need. This one works best when you've gotten fairly good at #2. Others can help you accomplish things that may seem overwhelming on your own. It's not a sign of weakness to ask for help. On the contrary: It's wisdom at work. Empowerment begins when you facilitate accommodations that can help you overcome things in your path. Don't be satisfied to stay in one place if someone else can help you maneuver a bit farther down the road.
4 - Embrace a way of living and doing that works for you. Your life and how you live it needs to be as unique as you are. This may mean redefining things you used to take for granted: Who comprises family, what measures success, how you regard faith. Something happened that caused your world to feel a bit upside down. It makes sense you'll have gained a new perspective on a lot of things because of that.
5 - Look for joy in the midst of it all - it's there. It really is. Holocaust survivors attest to this truth. Even victims of other horrendous crimes have discovered this truth on their way back from despair. Life is amazing and deeply beautiful. Your life is no exception.
I think everyone has something or someone they can look to as a "joy compass." It's my deep prayer that you find yours. Mine is named Stross. I'll forever be grateful for the lessons he brings my way, even if involuntarily so.
Wednesday, April 1, 2009
April Fools' Day
So why is it?
Who thought it wise
To meddle with mortals
Regardless of lies?
A day for fools I'm ok with.
A day for fooling, no thanks.
Does anyone suffer fools gladly?
Do glad fools enjoy what I can't?
Who thought it wise
To meddle with mortals
Regardless of lies?
A day for fools I'm ok with.
A day for fooling, no thanks.
Does anyone suffer fools gladly?
Do glad fools enjoy what I can't?
Sunday, March 1, 2009
I wish...
I wish I could have done a better job explaining what I feel about the topic I attempted to write about below.
How's that for...what's the opposite of "clarity"?
Murky? Muddy? Opaque?
Ah. Life.
Perhaps sometimes living equates a series of days spent attempting to be understood. At least by humans.
My faith assures me life is palpably divine. Therefore, someone -- some One -- understands without me needing to say or write or even think a word.
I like believing that.
A lot.
How's that for...what's the opposite of "clarity"?
Murky? Muddy? Opaque?
Ah. Life.
Perhaps sometimes living equates a series of days spent attempting to be understood. At least by humans.
My faith assures me life is palpably divine. Therefore, someone -- some One -- understands without me needing to say or write or even think a word.
I like believing that.
A lot.
Saturday, February 28, 2009
The Hope of Living in Community with Others
dedicated to another Joy living with Grace: Hang in there, keep moving forward
I think one of the most difficult things anyone deals with in life is becoming a parent. Time and again we hear first-time parents sharing comments that reveal they had absolutely no idea what they were getting themselves into. What’s more, they had no idea how dramatically their lives would shift focus. To become a parent means your life is no longer your own.
We flirt with that notion in marriage. Parenthood kisses us squarely in the face with it.
When your child puts you in a “special” category of parenthood, you wrestle with added burdens of what that “specialness” means. So many stereotypes and preconceptions. So many unacknowledged prejudices and oversights--all while friends and loved ones are attempting to soothe your grief and anger with compliments of how admirably you are dealing with your personal tragedy.
And let’s be frank: Having a child with a disability is a personal tragedy. To acknowledge that doesn’t mean we don’t love our child or that we regard our child as tragic. It’s the circumstances wrought by our child’s altered existence that are tragic.
And let’s not forget: In our ancient cultural past, our children’s lives were regarded as God’s abomination for sinful living. In our not so distant cultural past, our children died because society wasn’t equipped to care for them. Today our children live because medicine makes it possible for them to do so, yet our society hasn’t fully figured out what that means for the rest of us. Our society now includes adults living with severe disabilities, and they are living a quality of life not imagined possible just a generation ago. So where does that leave the moms and dads of these children? Our culture hasn’t figured that out yet, and I don’t think its come to terms with God’s perceived role in all of it either.
People living outside the special reality that belongs to parents of children with disabilities simply cannot see what we do. I don’t like positioning it as a “we v. they” perspective, but I once was them and that’s how I know. Each day I (we) live a gut-wrenching truth outside their realm of existence. That’s just what it is. I (we) remember the difference. It’s as real a phenomenon as me not fully understanding the brutal horrors of famine or the helplessness of abuse because I’ve not lived them firsthand.
I cannot fully understand something I do not intimately know. But that doesn’t mean I shouldn’t try.
Those intimately connected to "the disabled community" understand the term is a bit of an oxymoron. Society doesn't make it easy for those with disabilities to live with a sense of community. Their sense of community is created within a contained system intended to protect persons with disabilities. At the same time it incubates others from the inconveniences their lives cause. It’s this disconnect that leads me to think of society itself as a disabled community. Living apart from the greater community is not living in community with the world.
Shame on any coworker, friend or relative who attempts to define my life only in the context of a parent of a child with a disability. Confining me to that role may make their understanding of life and their opportunities in it less complicated but it keeps us separate. For them, I’m now on a trajectory to professional advocacy rather than professional achievement, a path outside their collegial realm. It seems that makes me easier to deal with somehow. What they forget is that relegating me to a role that's one step removed means not having my voice at the table. And I now understand how my voice—my child’s voice—needs to be heard in regular daily living. Not just in the realm of some distant special needs world.
All parents are—in the best of circumstances—a child’s best advocate. We advocate, even putting our lives on hold for a time, in order to place our children first. That’s just what parents do. But that doesn’t mean we forsake our dreams forever. Keeping our dreams and passions alive, even if in a transformed version, sustains us.
Others may need to be reminded that our child’s arrival did not erase our dreams and passions—our professional and personal goals. Instead our child likely ignited a fierce need to keep them alive for our sake and for our child’s. They are part of our identity. They existed before our child, and they will live on after.
Our dreams and passions fuel the energy needed for our demanding daily existence. Our societal companions need to understand that. Supporting us directly impacts our children and enriches the communities in which we live. We learn more about who we are through our children just like “normal” parents do. That doesn’t mean being a good parent for our child is our only aspiration. Parenthood is probably not their sole aspiration either. It just makes it easier for them if we carry the bulk of society’s disability burden.
Feelings of wanting more, doing more and being more should not be discounted. They won’t be assuaged by well-meaning admonitions to be grateful for the lives we have. We are grateful. In fact we know a gratitude that runs deeper than what our coworkers, friends or relatives with “normal” children can comprehend.
Writing the words above makes me frustrated. I can hear them sounding almost self-righteous, courting a sort of egotism that belies the life that I and so many others lead. I just wish I could be better at explaining what I see and what I feel. These words are coming from a bold sense of purpose: I have to try.
Why do I feel so bold anyway? It's my answer to the frustration of my altered reality. I used to be one of "them." I remember my naïvete when I’d not had the privilege of living an altered existence. My son ushered me to a new understanding of my identity and my place in the world: I am no greater or less than anyone else. Because of that, I live open to many things: How the mother of a child dying from hunger might regard grief as a precursor to new life, how the mother of a child living with an abuser could fear living without means more than remaining alive, and how the mother of a child born gay understands her son was born perfect in God’s sight. I’ve found a way to live closer to those realms of existence, and I am better for it.
Life is big and long and large. The needs my child has today are far different than what he will require even next month or next year. The same goes for me. What does that mean for him? For me? For us?
I don’t know. But I sure look forward to finding out. One day at a time, one person at a time, one step closer to life lived fully in community with all things divine.
I think one of the most difficult things anyone deals with in life is becoming a parent. Time and again we hear first-time parents sharing comments that reveal they had absolutely no idea what they were getting themselves into. What’s more, they had no idea how dramatically their lives would shift focus. To become a parent means your life is no longer your own.
We flirt with that notion in marriage. Parenthood kisses us squarely in the face with it.
When your child puts you in a “special” category of parenthood, you wrestle with added burdens of what that “specialness” means. So many stereotypes and preconceptions. So many unacknowledged prejudices and oversights--all while friends and loved ones are attempting to soothe your grief and anger with compliments of how admirably you are dealing with your personal tragedy.
And let’s be frank: Having a child with a disability is a personal tragedy. To acknowledge that doesn’t mean we don’t love our child or that we regard our child as tragic. It’s the circumstances wrought by our child’s altered existence that are tragic.
And let’s not forget: In our ancient cultural past, our children’s lives were regarded as God’s abomination for sinful living. In our not so distant cultural past, our children died because society wasn’t equipped to care for them. Today our children live because medicine makes it possible for them to do so, yet our society hasn’t fully figured out what that means for the rest of us. Our society now includes adults living with severe disabilities, and they are living a quality of life not imagined possible just a generation ago. So where does that leave the moms and dads of these children? Our culture hasn’t figured that out yet, and I don’t think its come to terms with God’s perceived role in all of it either.
People living outside the special reality that belongs to parents of children with disabilities simply cannot see what we do. I don’t like positioning it as a “we v. they” perspective, but I once was them and that’s how I know. Each day I (we) live a gut-wrenching truth outside their realm of existence. That’s just what it is. I (we) remember the difference. It’s as real a phenomenon as me not fully understanding the brutal horrors of famine or the helplessness of abuse because I’ve not lived them firsthand.
I cannot fully understand something I do not intimately know. But that doesn’t mean I shouldn’t try.
Those intimately connected to "the disabled community" understand the term is a bit of an oxymoron. Society doesn't make it easy for those with disabilities to live with a sense of community. Their sense of community is created within a contained system intended to protect persons with disabilities. At the same time it incubates others from the inconveniences their lives cause. It’s this disconnect that leads me to think of society itself as a disabled community. Living apart from the greater community is not living in community with the world.
Shame on any coworker, friend or relative who attempts to define my life only in the context of a parent of a child with a disability. Confining me to that role may make their understanding of life and their opportunities in it less complicated but it keeps us separate. For them, I’m now on a trajectory to professional advocacy rather than professional achievement, a path outside their collegial realm. It seems that makes me easier to deal with somehow. What they forget is that relegating me to a role that's one step removed means not having my voice at the table. And I now understand how my voice—my child’s voice—needs to be heard in regular daily living. Not just in the realm of some distant special needs world.
All parents are—in the best of circumstances—a child’s best advocate. We advocate, even putting our lives on hold for a time, in order to place our children first. That’s just what parents do. But that doesn’t mean we forsake our dreams forever. Keeping our dreams and passions alive, even if in a transformed version, sustains us.
Others may need to be reminded that our child’s arrival did not erase our dreams and passions—our professional and personal goals. Instead our child likely ignited a fierce need to keep them alive for our sake and for our child’s. They are part of our identity. They existed before our child, and they will live on after.
Our dreams and passions fuel the energy needed for our demanding daily existence. Our societal companions need to understand that. Supporting us directly impacts our children and enriches the communities in which we live. We learn more about who we are through our children just like “normal” parents do. That doesn’t mean being a good parent for our child is our only aspiration. Parenthood is probably not their sole aspiration either. It just makes it easier for them if we carry the bulk of society’s disability burden.
Feelings of wanting more, doing more and being more should not be discounted. They won’t be assuaged by well-meaning admonitions to be grateful for the lives we have. We are grateful. In fact we know a gratitude that runs deeper than what our coworkers, friends or relatives with “normal” children can comprehend.
Writing the words above makes me frustrated. I can hear them sounding almost self-righteous, courting a sort of egotism that belies the life that I and so many others lead. I just wish I could be better at explaining what I see and what I feel. These words are coming from a bold sense of purpose: I have to try.
Why do I feel so bold anyway? It's my answer to the frustration of my altered reality. I used to be one of "them." I remember my naïvete when I’d not had the privilege of living an altered existence. My son ushered me to a new understanding of my identity and my place in the world: I am no greater or less than anyone else. Because of that, I live open to many things: How the mother of a child dying from hunger might regard grief as a precursor to new life, how the mother of a child living with an abuser could fear living without means more than remaining alive, and how the mother of a child born gay understands her son was born perfect in God’s sight. I’ve found a way to live closer to those realms of existence, and I am better for it.
Life is big and long and large. The needs my child has today are far different than what he will require even next month or next year. The same goes for me. What does that mean for him? For me? For us?
I don’t know. But I sure look forward to finding out. One day at a time, one person at a time, one step closer to life lived fully in community with all things divine.
Sunday, February 1, 2009
Grouchy Day
I was looking through files in my computer and ran across this piece. I thought this blog would be a nice place to share it. And even though I wrote it more than a year ago, I recognize the day described as similar to ones I've lived more recently.
Grouchy Day - written Oct. 7, 2007
On Wednesday of last week, I was having too many “special mom” moments—those are moments when being the mom of a child with both intellectual and physical disabilities is more bother than blessing. My oldest son, Stross, had not managed his own medical cares well the day before, causing him to miss out on our specialized studying time. As a result, he totally bombed a modified test that his teacher’s aide had fretted over, causing her to write a very detailed note that required a very detailed response from me. Then the school nurse called needing my help (and of course I had not copied the handout the public relations class that I teach yet). Still I headed off to the high school on a rescue mission, missing my chance for lunch.
There were some more things: I didn’t get to exercise that morning; my scale seemed to be weighing me heavier than I’d remembered somehow; my computer chose an inconvenient time to display a “black box of death”; and some other pretty trivial stuff happened that I don’t care to mention here. But “things” were adding up in a way that made me grouchy; and the mood lasted into the next day. To lift my spirits, I put on a dress before heading out the door. And I felt better.
Now, some people might call that “faking it until you make it” – but I believe that’s a dangerous notion. I prefer to think of it as relying on a coping technique I know works for me. There’s nothing fake about it.
I own the life I lead, and I know how to lift my spirit in life-affirming ways when necessary. On that particular Wednesday it took a dress. On another day it might take singing a Broadway album in full voice or paging through a photo album. I might even need to call a distant friend I haven’t spoken to in months or even years.
I know what it takes to feel like me again. But only I know what that fully means. That thought alone might require me to lift my spirits to a place where I don't feel so alone. I think I'll grab a piece of dark chocolate and think about that some more.
Grouchy Day - written Oct. 7, 2007
On Wednesday of last week, I was having too many “special mom” moments—those are moments when being the mom of a child with both intellectual and physical disabilities is more bother than blessing. My oldest son, Stross, had not managed his own medical cares well the day before, causing him to miss out on our specialized studying time. As a result, he totally bombed a modified test that his teacher’s aide had fretted over, causing her to write a very detailed note that required a very detailed response from me. Then the school nurse called needing my help (and of course I had not copied the handout the public relations class that I teach yet). Still I headed off to the high school on a rescue mission, missing my chance for lunch.
There were some more things: I didn’t get to exercise that morning; my scale seemed to be weighing me heavier than I’d remembered somehow; my computer chose an inconvenient time to display a “black box of death”; and some other pretty trivial stuff happened that I don’t care to mention here. But “things” were adding up in a way that made me grouchy; and the mood lasted into the next day. To lift my spirits, I put on a dress before heading out the door. And I felt better.
Now, some people might call that “faking it until you make it” – but I believe that’s a dangerous notion. I prefer to think of it as relying on a coping technique I know works for me. There’s nothing fake about it.
I own the life I lead, and I know how to lift my spirit in life-affirming ways when necessary. On that particular Wednesday it took a dress. On another day it might take singing a Broadway album in full voice or paging through a photo album. I might even need to call a distant friend I haven’t spoken to in months or even years.
I know what it takes to feel like me again. But only I know what that fully means. That thought alone might require me to lift my spirits to a place where I don't feel so alone. I think I'll grab a piece of dark chocolate and think about that some more.
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