On Thursday I was hurrying to the BART station to catch a train in time to make Fremont for my 9:00 am class. The sun was very bright as I walked directly east and the sidewalk was shaded by parked cars. I was thinking about all the homework I still had to do and the O and M skills test coming on Monday and the fact I have yet to update the Medusa's Muse website and.... BAM! I was sprawled out on the sidewalk. I had fallen into one of those large, square holes where there used to be a tree. The tree was gone, leaving a gaping trap for anyone blinded by sunshine and not watching where they were going to fall into.
I got up slowly and realized my foot hurt, but didn't seem too bad. My left knee throbbed, the palms of my hands were scraped, but I hadn't hit my head and wasn't limping. However, by the time I got off the BART train over an hour later, I was limping horribly with stabbing pain in my right foot. I made it to class, found an icepack, and spent the rest of the day long workshop (we were learning how to do vision assessments) with my foot propped up. Luckily one of my fellow students gave me a ride back to San Francisco where my car was parked at a friend's house. But I still had to drive the 2 hours back home that night, my foot and knee throbbing like crazy. Thank goodness for cruise control.
The next day, I felt every area that had made contact with the cement, namely the entire front of my body. I was bruised and aching and no amount of Tylenol could fix it. I spent the day working on my assessment report while watching Barabara Stanwyck movies, trying not to move.
If I'd been paying attention to where I was walking, I doubt I would've fallen. The hole was enormous, so regardless of the sun shining directly into my eyes, I probably would've seen it in time and avoided it. Instead, I plowed right through and ended up front down on the sidewalk.
It took falling to make me realize I am too much in my head these days. Not surprising; there's just too much to do and I feel that I'm constantly playing catch up, scrambling up a rocky hill that is collapsing under my feet. The amount of work is impossible and all needs to be done now. I made my list, distinguishing "Important" from "Unimportant," but everything is so dang IMPORTANT right now, not the least being a mom to my daughter. Because it all needs to be done, I'm not doing any of it very well. For a type A perfectionist like me, half-assed work is unacceptable.
Because I am such a perfectionist, it takes an injury to get me to slow down. I wish I'd learn to stop and breath BEFORE I fall into a gigantic hole in the sidewalk that anyone who'd been watching where they were going would've noticed. Now I'm stuck on the couch with my foot propped up, forced to sit still and pay attention to right now.
Right now I will make a pumpkin pie with my daughter, help her work on her scrap book, and practice Orientation and Mobility skills for the practicum on Monday (I wonder if I can guide someone while limping?). The rest of my homework and the edits due on my book will just have to wait. I promised my daughter we'd spend time together this weekend and I won't go back on my word. School and work will just have to be the half assed portion of the evening. My daughter comes first.
Saturday, November 8, 2008
Wednesday, November 5, 2008
How can I Help?
I watched Obama's acceptance speech last night, stunned and weeping with joy. This is an incredible moment in history and I am so thankful I'm here to see it. Think about it. When I was a baby, Martin Luther King Jr was murdered. 40 years later, a black man has been elected to be our president.
His message, though, is important for us to grasp. We can't rest on our laurels and wait for him to "fix things." With two wars, a global economy on the brink of collapse, and anti-America sentiment vocally high, we all need to step up and ask, How can I help? Everyone must work for the change we desired when we voted for Obama. Even people who voted for McCain did so because they believed he was the best person to lead us out of this darkness. No one person, even one president, can get our country back on track and prosperous. It takes a village.
What can you do? Here's an example...
'Good Samaritan' saves crying woman's foreclosed home
Tracy Orr sat in the back of the room and prepared to watch her foreclosed home go up for auction this past Saturday. That's when a pesky stranger sat down beside her and struck up a conversation.
Tracy Orr faced losing her home to foreclosure when Marilyn Mock, a stranger, stepped in to buy it.
"Are you here to buy a house?" Marilyn Mock said.
Orr couldn't hold it in. The tears flowed. She pointed to the auction brochure at a home that didn't have a picture. "That's my house," she said.
Within moments, the four-bedroom, two-bath home in Pottsboro, Texas, went up for sale. People up front began casting their bids. The home that Orr purchased in September 2004 was slipping away.
She stood and moved toward the crowd. Behind her, Mock got into the action.
"She didn't know I was doing it," Mock says. "I just kept asking her if [her home] was worth it, and she just kept crying. She probably thought I was crazy, 'Why does this woman keep asking me that?' "
Mock says she bought the home for about $30,000. That's when Mock did what most bidders at a foreclosure auction never do. Watch why a woman would buy back a stranger's home »
"She said, 'I did this for you. I'm doing this for you,' " Orr says. "When it was all done, I was just in shock."
"I thought maybe her and her husband do these types of things to buy them and turn them. She said, 'No, you just look like you needed a friend.' "
"All this happened within like 5 minutes. She never even asked me my name. She didn't ask me my financial situation. She had no idea what [the house] looked like. She just did it out of the graciousness of her heart, just a 'Good Samaritan,' " Orr says. "It's amazing."
Not many of us have the cash to buy someones home back, but there are things we can do every day to help our neighbors, even something as simple as dragging the garbage cans out to the curb for the little old lady with arthritis who lives across the street. Our own food cupboards hold less than last year, but if we each give just one thing to the food bank their shelves won't be empty. Actions small and large are what it will take to create the change Obama talked about.
Queen Teen is currently going through her clothes and toys to find the things she doesn't play with or wear anymore so that "another child can have something new." This is a person who doesn't have a clear understanding of who the president even is. All she knows is that she wants to help someone.
Regardless of who you voted for, lets keep the flame alive and help Obama bring about the change we all hunger for, one tiny step at a time.
His message, though, is important for us to grasp. We can't rest on our laurels and wait for him to "fix things." With two wars, a global economy on the brink of collapse, and anti-America sentiment vocally high, we all need to step up and ask, How can I help? Everyone must work for the change we desired when we voted for Obama. Even people who voted for McCain did so because they believed he was the best person to lead us out of this darkness. No one person, even one president, can get our country back on track and prosperous. It takes a village.
What can you do? Here's an example...
'Good Samaritan' saves crying woman's foreclosed home
Tracy Orr sat in the back of the room and prepared to watch her foreclosed home go up for auction this past Saturday. That's when a pesky stranger sat down beside her and struck up a conversation.
Tracy Orr faced losing her home to foreclosure when Marilyn Mock, a stranger, stepped in to buy it.
"Are you here to buy a house?" Marilyn Mock said.
Orr couldn't hold it in. The tears flowed. She pointed to the auction brochure at a home that didn't have a picture. "That's my house," she said.
Within moments, the four-bedroom, two-bath home in Pottsboro, Texas, went up for sale. People up front began casting their bids. The home that Orr purchased in September 2004 was slipping away.
She stood and moved toward the crowd. Behind her, Mock got into the action.
"She didn't know I was doing it," Mock says. "I just kept asking her if [her home] was worth it, and she just kept crying. She probably thought I was crazy, 'Why does this woman keep asking me that?' "
Mock says she bought the home for about $30,000. That's when Mock did what most bidders at a foreclosure auction never do. Watch why a woman would buy back a stranger's home »
"She said, 'I did this for you. I'm doing this for you,' " Orr says. "When it was all done, I was just in shock."
"I thought maybe her and her husband do these types of things to buy them and turn them. She said, 'No, you just look like you needed a friend.' "
"All this happened within like 5 minutes. She never even asked me my name. She didn't ask me my financial situation. She had no idea what [the house] looked like. She just did it out of the graciousness of her heart, just a 'Good Samaritan,' " Orr says. "It's amazing."
Not many of us have the cash to buy someones home back, but there are things we can do every day to help our neighbors, even something as simple as dragging the garbage cans out to the curb for the little old lady with arthritis who lives across the street. Our own food cupboards hold less than last year, but if we each give just one thing to the food bank their shelves won't be empty. Actions small and large are what it will take to create the change Obama talked about.
Queen Teen is currently going through her clothes and toys to find the things she doesn't play with or wear anymore so that "another child can have something new." This is a person who doesn't have a clear understanding of who the president even is. All she knows is that she wants to help someone.
Regardless of who you voted for, lets keep the flame alive and help Obama bring about the change we all hunger for, one tiny step at a time.
Thursday, October 23, 2008
The Bill of Rights for Caregivers
The following is a list of rights caregivers must have to remain strong and take care of themselves. All too often, caregivers forget that they need support just as much as the people they care for. This includes me.
A Caregiver's Bill of Rights
by Jo Horne
I have the right:
To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.
To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.
To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
To get angry, be depressed, and express other difficult feelings occasionally.
To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.
To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.
To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.
Recently, I forgot about this list, which is why I'm now completely exhausted. I forgot to ask for help, take breaks, and give my body the food and rest she needs. It's not surprising; parents of children with disabilities tend to devote their entire lives to caring for their children, even at the expense of their own health and well being. After 13 years and hundreds of hours of caregiver training, I know better, and yet I do it all the time. I get busy and focused on Queen Teen and slowly forget to take care of myself, only remembering that my body requires a certain amount of calories every day when I get the shakes and feel dizzy. Oh yeah, food. When did I last eat, I mean, some kind of food other than just a protein shake and a bottle of water?
Maybe one of these days I'll realize I'm falling into the old mother-of-a-child-with-special-needs, sacrificial trap before I get caught. For now, I can only give myself a good stern lecture, forgive myself for becoming a martyr, and find something really good and healthy to eat. Then tomorrow I can try to balance my own needs with the needs of my daughter and hope I figure this out a little better one day.
Or not. Has anyone managed to keep this all in balance?
A Caregiver's Bill of Rights
by Jo Horne
I have the right:
To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.
To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.
To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
To get angry, be depressed, and express other difficult feelings occasionally.
To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.
To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.
To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.
Recently, I forgot about this list, which is why I'm now completely exhausted. I forgot to ask for help, take breaks, and give my body the food and rest she needs. It's not surprising; parents of children with disabilities tend to devote their entire lives to caring for their children, even at the expense of their own health and well being. After 13 years and hundreds of hours of caregiver training, I know better, and yet I do it all the time. I get busy and focused on Queen Teen and slowly forget to take care of myself, only remembering that my body requires a certain amount of calories every day when I get the shakes and feel dizzy. Oh yeah, food. When did I last eat, I mean, some kind of food other than just a protein shake and a bottle of water?
Maybe one of these days I'll realize I'm falling into the old mother-of-a-child-with-special-needs, sacrificial trap before I get caught. For now, I can only give myself a good stern lecture, forgive myself for becoming a martyr, and find something really good and healthy to eat. Then tomorrow I can try to balance my own needs with the needs of my daughter and hope I figure this out a little better one day.
Or not. Has anyone managed to keep this all in balance?
Saturday, October 18, 2008
Depleted Mother Syndrome
Yes, it's real, and I'm pretty sure I have it.
Depleted Mother Syndrome is a serious problem that affects mothers of young children, especially toddlers. It's not postpartum depression or PMS, it's a condition created by the nonstop, 24/7 care of small children who require ALL of our time and attention. According to Rick Hanson, PHD, who coined the phrase Depleted Mother Syndrome in his book, "Mother Nurture," the causes of DMS are:
"... lack of sleep and exercise, poor diet, hormonal imbalances, nutrient loss, neurotransmitter deficiencies, guilt, anxiety, conflicting role expectations, marital conflict, and a breakdown of social supports. Its symptoms include chronic fatigue, susceptibility to illness, connective tissue problems including back pain and headaches, emotional numbing, depression, mood swings, irritability, hopelessness, confusion, running battles with husbands, and a turning inward away from friends and family."
Think about it. You've just given birth, a process that robs your body of vital nutrients to create another human being, and then you spend the next 4-5 years compulsively nurturing that child while getting little sleep and probably having another child during that same time.
Yes, I know my daughter is a teenager, and the syndrome is considered a condition of mothers with young children, but I think mothers of children with disabilities also suffer from depletion. We are still giving the same amount of energy and care to our children that we did when they were 2 and 3 years old. After several years of this, our bodies will begin to suffer. There is only so much a human being can do, and ultimately, mothers are still human.
I've been seeing my doctor to try and find some kind of medication to help get my anxiety level under control, but nothing is working. Every pill I take just makes me more agitated. And really, I don't feel depressed, not in an emotional way. I feel worn out, like my body is honestly running on empty and I'm coasting on what little is left in my bones. The problem is I have to keep going; I'm a mom and my daughter needs me. What can a mother do to care for herself when the demands of her child require super hero powers?
Time to change my plan of attack. Instead of looking at my exhaustion as something I need to medicate away, I need to look at what I give to myself and what is lacking. I had a physical so I know I'm not anemic or have anything like hypothyroidism, so what I really need is rest and good nutrition. Are there times in my day when I could put my feet up for a few minutes? Am I eating nutritious food, or just grabbing anything to stave off hunger? This is an opportunity to learn to nurture myself while also nurturing my child.
What kinds of things do you do to care for yourself? And do you think mothers of children with disabilities are just as depleted as new mothers, or do you have another theory? Send me your comments. I'd love to hear from you.
Depleted Mother Syndrome is a serious problem that affects mothers of young children, especially toddlers. It's not postpartum depression or PMS, it's a condition created by the nonstop, 24/7 care of small children who require ALL of our time and attention. According to Rick Hanson, PHD, who coined the phrase Depleted Mother Syndrome in his book, "Mother Nurture," the causes of DMS are:
"... lack of sleep and exercise, poor diet, hormonal imbalances, nutrient loss, neurotransmitter deficiencies, guilt, anxiety, conflicting role expectations, marital conflict, and a breakdown of social supports. Its symptoms include chronic fatigue, susceptibility to illness, connective tissue problems including back pain and headaches, emotional numbing, depression, mood swings, irritability, hopelessness, confusion, running battles with husbands, and a turning inward away from friends and family."
Think about it. You've just given birth, a process that robs your body of vital nutrients to create another human being, and then you spend the next 4-5 years compulsively nurturing that child while getting little sleep and probably having another child during that same time.
Yes, I know my daughter is a teenager, and the syndrome is considered a condition of mothers with young children, but I think mothers of children with disabilities also suffer from depletion. We are still giving the same amount of energy and care to our children that we did when they were 2 and 3 years old. After several years of this, our bodies will begin to suffer. There is only so much a human being can do, and ultimately, mothers are still human.
I've been seeing my doctor to try and find some kind of medication to help get my anxiety level under control, but nothing is working. Every pill I take just makes me more agitated. And really, I don't feel depressed, not in an emotional way. I feel worn out, like my body is honestly running on empty and I'm coasting on what little is left in my bones. The problem is I have to keep going; I'm a mom and my daughter needs me. What can a mother do to care for herself when the demands of her child require super hero powers?
Time to change my plan of attack. Instead of looking at my exhaustion as something I need to medicate away, I need to look at what I give to myself and what is lacking. I had a physical so I know I'm not anemic or have anything like hypothyroidism, so what I really need is rest and good nutrition. Are there times in my day when I could put my feet up for a few minutes? Am I eating nutritious food, or just grabbing anything to stave off hunger? This is an opportunity to learn to nurture myself while also nurturing my child.
What kinds of things do you do to care for yourself? And do you think mothers of children with disabilities are just as depleted as new mothers, or do you have another theory? Send me your comments. I'd love to hear from you.
Tuesday, October 7, 2008
Still Recovering from our Make A Wish Trip
"The Tightrope Walker" by Jean-Louis Forain
It's been two weeks since our Make A Wish adventure and Queen Teen is still smiling from the joy and excitement of meeting Laurie Berkner. She and I put the photos in the album Make A Wish gave her and we talked about the trip. She giggled as she looked at the pictures of Laurie, especially the one I took during the concert when Laurie had a "pig on her head."
I wasn't prepared for the emotional hurricane the trip created two days after our return, though. The exhaustion from traveling and caring for Queen Teen alone in a hotel for four days hit me hard, followed immediately by the blues so deep I couldn't stop crying. Make A Wish is a marvelous gift, but I suddenly realized I didn't want it.
For over ten years I've understood that Queen Teen's yet-to-be-named condition is degenerative, but I've avoided the idea that it could kill her. We focus on the here and now. The future is unknown because her condition is unknown. Some people say not knowing the outcome is harder, but for me, I like not knowing because that leaves the future open. Anything is possible, including Queen Teen's degeneration plateauing with no further damage to her cerebellum. Her neurologist explained that could happen and he's admitted that he really doesn't know what the degeneration will mean in the long run. Fine, then lets just deal with today and live with joy and determination. I refuse to mourn my child while she's standing right next to me.
Qualifying for Make A Wish shattered my healthy denial, especially when I saw the look on people's faces when I told them Queen Teen's wish was being granted. Everyone looked at me with a frozen, startled smile as I explained her Make A Wish dream. They wanted to be happy for us, but at the same time I could see the questions in their eyes. Is Queen Teen dying? I had no idea! Why didn't you tell me?
Now I'm having to tell myself the same thing I wanted to tell them. No, Queen Teen isn't dying, but she is at risk. We don't know what will happen. So please, can we just focus on the FUN part of this trip?
I wonder how many other parents have the same reaction I did about Make A Wish? The gift is incredible and life-affirming, while at the same time frightening. Perhaps Make A Wish should include that in the info packets they give to the families before the trip. Now don't be surprised if you feel overwhelming grief at the same time you are excited for your child.
I'm feeling more centered and calmer now, but it took several days and a call to my therapist. I see him whenever I feel like I've lost my balance on this tightrope called raising a special needs child. Sometimes we all need someone to steady us so we can move forward, one cautious step at a time.
Thursday, September 25, 2008
Our Make A Wish Adventure
Anyone who has ever walked the streets of New York City can attest to this. New York City, at least Manhattan's South Central Park District (5th Ave, Columbus Circle, Ave of the Americas, Broadway...) where my daughter and I stayed during her Make A Wish Adventure IS an example of Chaos Theory in action. The streets are throbbing with constant movement, noise, and activity, flowing with concentrated propulsion. Somehow, this sea of people manages to function, even move from place to place without crashing into one another. It may look like pandemonium, but there actually is a logical pattern. There's a current, and when you're walking the streets you need to plunge in and ride it. If you hesitate, you'll get hit by a cab.
My daughter and I spent two days and three nights in Manhattan to see Laurie Berkner in concert at the Lincoln Center for the Performing Arts. The concert was amazing! Laurie Berkner gave a show even a grown up would enjoy. And the toddlers were screaming like she was Paul McCartney. "Laurie! Laurie! I love you, Laurie!" They were bashing in the aisles, moshing to the groove of "Laurie's got a pig on her head" and singing along at the top of their little baby lungs. My daughter laughed and grinned through the whole concert. I have truly never seen her so happy, not even when she got Barbie's Dream House for Christmas three years ago.
After the concert we went back stage to meet Laurie and the band. She is wonderful! She got really close to Queen Teen as if intuitively knowing Queen Teen needed that connection to understand what Laurie was saying. And then Queen Teen surprised me. She was wearing a bracelet that she had insisted on bringing to the concert. I thought it was a fashion thing, but it turned out she wanted to give it to Laurie. Her whole body shook as she took it off her wrist and thrust it at Laurie. "This is for you." Laurie took it gently and put it on. "Thank you. It matches my dress. I love it." Then she hugged Queen Teen. Queen Teen hugged her back, her entire being glowing with joy. I wiped tears from my eyes and tried not to completely lose it.
Laurie spent several minutes with us before she had to join the reception in the main room, but she invited us to the party. We stayed a few minutes, eating chocolate covered strawberries, but it was packed with people and Queen Teen was exhausted, so we hopped back in the limo (yes, we got to ride in a limo to the concert. We rode in five limos during the trip to be exact).
The next day was our free day when we travelled the streets of Manhattan. Surprisingly, the stream of people stepped aside to let us pass when they saw us coming. The whole current adapted to our presence, and once when we got stuck on the edge of curb a man in a business suit stopped and helped us, then quickly jumped back into the flow and was gone. Queen Teen has a problem with loud noises, and the streets of Manhattan are nothing but one giant noise, but she hung in there, really hungry to explore. We hopped from store to store for breaks from the chaos, and I made sure to navigate back to our hotel so she could get her bearings again. I was really proud of her.
We flew home on Tuesday and met our limo driver, Duke, who drove us all the way back home. As I sat in the back of the limo with Queen Teen asleep beside me, watching the tiny LCD lights in the ceiling of the car as we sped through the blackness of the night, I felt perfectly calm and safe. I knew Duke would get us home safely. I fell asleep.
Queen Teen went back to school today, weary, but excited and still grinning after her trip. She can't believe she actually MET Laurie Berkner.
Today, I'm playing catch up. A thousand emails and phone calls to make. Stacks of bills and dirty laundry. I don't mind. My daughter is happy, and I'm still tingling from Manhattan and the joy on my child's face.
Tuesday, September 16, 2008
"Make A Wish" and Laurie Berkner
This Saturday, Queen Teen and I are flying to New York City to see Queen Teen's favorite singer, Laurie Berkner, in concert at Lincoln Center for the Arts, all thanks to the Make A Wish Foundation. Queen Teen was referred to the program four months ago by one of the social workers we work with. At the time Queen Teen had no idea what she wanted, but the two volunteers who came to interview her discovered that she LOVES Laurie Berkner. When they asked her if she'd like to meet Laurie Berkner, Queen Teen giggled and smiled so big her pony-tales practically pointed straight up. That settled it! We would meet Laurie Berkner.
The team warned us that celebrity wishes can take a year or longer to arrange, but Laurie Berkner is not your average celebrity. She has been more than accommodating and seems really eager to help make Queen Teen's dream come true TODAY. We've been invited back stage to meet Laurie after the concert and she asked what Queen Teen's favorite song is so that they can sing it together.
While Queen Teen was recovering from surgery last year, I contacted Laurie Berkner and requested a note from her to help cheer Queen Teen while she lounged around in two big casts. Laurie sent a postcard and a hand written note within the week.
Queen Teen says that listening to Laurie cheers her up. Even though Queen Teen is a teenager now, she still loves listening to the silly, children's songs of Laurie. I think partially it's because Queen Teen is losing her hearing, but since she knows every one of Laurie's songs by heart, she can still enjoy the music no matter how muffled it may become.
Make A Wish is sending a car to our home and driving us to the airport, paying for all the travel and accommodations, helping us navigate Manhattan, and providing meals and "incidentals." They want us to have fun without stress or worry about how much something costs. For that, I am deeply grateful. And I am grateful to the hundreds of volunteers and people who donate to the program who help make these dreams come true for kids who really have a rough road to travel.
When we found out her wish was granted, Queen Teen asked, "Why are they sending me to New York to meet Laurie?" She watched me very carefully and I knew I had to say something that would help her understand what the program is about without making her think people were feeling sorry for her. I was really stumped for a bit. I mean, what do I say? Um gee... because you have a degenerative disorder and who knows what the future will bring?
After a moment, I said, "They're giving you this chance to meet Laurie because the people know how hard things can be for you sometimes and they want you to have something that will make you super happy. You've been through a lot and have worked really hard and this is a present so you can just do something fun and not have to worry about anything."
She nodded while she thought about what I said. "Okay." Then she smiled and we started planning for the trip. I think I said the right thing because now all she talks about is WHAT we're going to do and not WHY we're doing it.
"Make A Wish" isn't about pity, it's about joy; a way to try and balance out some of the anger and frustration, pain and discomfort, of coping with a chronic illness. It's about giving a family time together doing something fun and care free.
To tell the truth, I'm really excited to meet Laurie Berkner too! It's Laurie Berkner!!!! She's awesome! Really! Check out her website and play some of her songs. Not just silly preschool stuff, grown ups can enjoy them too.
"I've got a song in my tummy and it wants to come out, I've got a song in my tummy..."
So okay, maybe that one's silly, but what's wrong with a little silly?
"I've got a song in my tummy and it wants to come out. And when it does, I'm gonna sing and shout... La La, La La, La La..."
Thursday, September 11, 2008
How it Feels to be a Traveler
Monday was my first day of class in the Orientation and Mobility Program at San Francisco State University and my first opportunity to try walking the hall as a "traveler;" wearing a blind fold while being led by a "guide."
Before I was a traveler, I was a guide, something very natural to me. My class partner put on her own blindfold and then gripped my arm as I led her up and down the hallway. I think I may have talked too much, though.
"Here we go... we're passing a garbage can on our right... here comes a large group of people, oh good they're stepping aside to let us pass... we're now passing a chair propping open a door... another group is coming, this time we'll move aside for them... okay they're gone, lets move on... we're turning left to walk up another hallway..."
The banter felt so natural because this is what I do with Queen Teen as we travel together. Even if she's in her wheelchair, I talk about the trees and point out the squirrels and ask if she sees the flowers, and take a look at this leaf... filling in the gaps in her vision. Since she isn't completely blind, she'll often point things out to me as well. My classmate said she felt very comfortable walking with me, but I'll hear back from our instructor if I was talking too much.
Then it was my turn to be blindfolded. At first I felt dizzy and had to force myself to breath through it and fight panic. After about a minute the dizziness went away, except every time we turned I would get momentarily dizzy again. With the blind fold on, I didn't talk. My guide was also quiet, only giving me verbal cues when we were making a turn or avoiding and obstacle. I tried to hear what was going on around me but the echos in the hallway from the voices of other students were so loud I couldn't navigate by sound. I was truly blind, visually and auditorally, and had to completely trust my partner to keep me safe.
I have classes every Monday night, and since I get out so late I'm staying with friends, which means I get one full night of sleep a week. An extra bonus! Queen Teen helped Rick by doing an excellent job getting ready for school without me. Rather than whining that I was gone and punishing both Rick and I for my absence, she got her own school things organized and cheerfully greeted me when I met the bus on Tuesday. This is a big change from even this summer, when any time I left for any reason I was given the "grumpy-teen-I-hate-the-world-how-dare-you-leave-me" treatment. Queen Teen is definitely growing up.
Before I was a traveler, I was a guide, something very natural to me. My class partner put on her own blindfold and then gripped my arm as I led her up and down the hallway. I think I may have talked too much, though.
"Here we go... we're passing a garbage can on our right... here comes a large group of people, oh good they're stepping aside to let us pass... we're now passing a chair propping open a door... another group is coming, this time we'll move aside for them... okay they're gone, lets move on... we're turning left to walk up another hallway..."
The banter felt so natural because this is what I do with Queen Teen as we travel together. Even if she's in her wheelchair, I talk about the trees and point out the squirrels and ask if she sees the flowers, and take a look at this leaf... filling in the gaps in her vision. Since she isn't completely blind, she'll often point things out to me as well. My classmate said she felt very comfortable walking with me, but I'll hear back from our instructor if I was talking too much.
Then it was my turn to be blindfolded. At first I felt dizzy and had to force myself to breath through it and fight panic. After about a minute the dizziness went away, except every time we turned I would get momentarily dizzy again. With the blind fold on, I didn't talk. My guide was also quiet, only giving me verbal cues when we were making a turn or avoiding and obstacle. I tried to hear what was going on around me but the echos in the hallway from the voices of other students were so loud I couldn't navigate by sound. I was truly blind, visually and auditorally, and had to completely trust my partner to keep me safe.
I have classes every Monday night, and since I get out so late I'm staying with friends, which means I get one full night of sleep a week. An extra bonus! Queen Teen helped Rick by doing an excellent job getting ready for school without me. Rather than whining that I was gone and punishing both Rick and I for my absence, she got her own school things organized and cheerfully greeted me when I met the bus on Tuesday. This is a big change from even this summer, when any time I left for any reason I was given the "grumpy-teen-I-hate-the-world-how-dare-you-leave-me" treatment. Queen Teen is definitely growing up.
Thursday, September 4, 2008
At 8:30 all the Moms come out to Walk
I love to walk. When I lived in San Francisco I didn't own a car and rarely took the bus. Instead, I walked several miles a day, loving the feel of the pavement under my feet and the flow of the city all around me. Today, I go out walking in the mornings as soon as I drop Queen Teen at school. I plug in my IPod and leave the sad dog at home (I take her later, but she can't keep up with me when I power walk), letting my arms swing as my body gets into the zone. The stress dissolves from my shoulders and my heart rate keeps time. I love it!
Yesterday while walking, I passed two women my own age who were walking together and chatting. I nodded, zipping past as the music of Pearl Jam pushed me faster. A block later, I passed another small group of women, also my own age, and then in the next block four more women. Around the corner I had to slow down for a group of women who looked like they were on a break from work because they wore dresses with tennie's while they strolled. When I finally passed them up I looked around and realized the neighborhood was FULL of walking women, mostly my age and mostly in shorts or lose pants and t-shirts.
I suspected they were all like me, moms who'd just dropped their kids at school and were now pacing the neighborhood. It was 8:30 am. The first bell of every school had rung and every child in town was in class. We moms were free!
Then I realized that not only was I walking with every mom in town, I was COMPETING with them. I couldn't just comfortably walk; for some bizarre reason I had to out pace every group of women I came to.
I laughed at myself, cranked up the tunes, and tried to relax again. Come on, Terena, this isn't a race. Just listen to the music and get your flow back.
If you go out walking at 8:30 am, look for the moms. We'll all be out there in our baggy t-shirts and tennies, walking before the day gets away from us.
Yesterday while walking, I passed two women my own age who were walking together and chatting. I nodded, zipping past as the music of Pearl Jam pushed me faster. A block later, I passed another small group of women, also my own age, and then in the next block four more women. Around the corner I had to slow down for a group of women who looked like they were on a break from work because they wore dresses with tennie's while they strolled. When I finally passed them up I looked around and realized the neighborhood was FULL of walking women, mostly my age and mostly in shorts or lose pants and t-shirts.
I suspected they were all like me, moms who'd just dropped their kids at school and were now pacing the neighborhood. It was 8:30 am. The first bell of every school had rung and every child in town was in class. We moms were free!
Then I realized that not only was I walking with every mom in town, I was COMPETING with them. I couldn't just comfortably walk; for some bizarre reason I had to out pace every group of women I came to.
I laughed at myself, cranked up the tunes, and tried to relax again. Come on, Terena, this isn't a race. Just listen to the music and get your flow back.
If you go out walking at 8:30 am, look for the moms. We'll all be out there in our baggy t-shirts and tennies, walking before the day gets away from us.
Tuesday, September 2, 2008
Root and Sprout
Last week, I posted about the odd mix of guilt and joy I feel every time the first day of school arrives. While pondering that fact, I stumbled upon Root and Sprout, an on-line parenting magazine and saw that their deadline for the September issue was the end of the week. So I decided to go for it. I frantically wrote a 500 word essay, sent it in the following day, and it was accepted! Called "It's Back to School Time. Why am I so Happy?" it is about the glee and guilt we parents feel when we toss our children out of the car on their butts in the school parking lot lovingly send our little darlings to school. Look for it in the Grow Through Laughter section of the zine.
You'll also find articles about marriage (Dating Your Spouse: How to Reclaim Your Marriage, by Teresa Hirst), volunteering at your child's school (No Time to Volunteer? by John Boynton) and being a special needs student (Dear Mom and Dad: What It’s Like to Be A Child with Special Needs, by Kirk Martin).
You'll also find articles about marriage (Dating Your Spouse: How to Reclaim Your Marriage, by Teresa Hirst), volunteering at your child's school (No Time to Volunteer? by John Boynton) and being a special needs student (Dear Mom and Dad: What It’s Like to Be A Child with Special Needs, by Kirk Martin).
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