Anyone who knows me knows that I would not be a fan of Ms. Huffington. However, she did run an article that needs to be first page news in every publication around the country and maybe around the world.
Are you willing to take a few minutes to comment on the Huffington Post web site in order to bring to light the abuse happening to our children who have no voice? Please visit and speak up for our innocents: http://www.huffingtonpost.com/kim-stagliano/post_701_b_685954.html
Thank y0u, gail
Monday, August 23, 2010
Monday, August 9, 2010
Nearly Spoonless
Conditions this summer have left me nearly spoonless (please see last entry for explanation) for blogging. It has been a hot, humid season and I have had to care for Isabella much more than planned.
As I sit here typing, my bed is calling out to me to take a nap. Himself is out with The Boy and Bells is watching Cinderella for maybe the fifteenth time in a month so I have no option but to stay awake.
Life has been challenging but we are muddling through. God's mercy is evident in that we still have a roof over our heads, food in our bellies and clothing on our backs.
Thinking about the souls I have met here brings a warm feeling to my heart. Do you know that when you come to mind I try to remember to pray for you?
For dear J whose health has been a trial and is awaiting treatment.
For wonderful R who is going to school and taking care of home and hearth whilst battling her own health issues.
For T across the pond who never fails to bring a smile to my face.
For G who lives with some of the same challenges on the "spectrum" that we live with.
B, the survivor whose mom is battling a devastating illness.
Irrepressible 'r as he continues to labor in the Lord's army.
C, a proud professional working to bring justice to a system that is failing. My beloved adopted child W, who has a spirit of adventure and love.
My adopted son, R, working too hard but trying to balance his life with a little fun.
D who keeps me laughing as she lives her life loving her hubby, daughters, grandkids and many pets, hopefully in that order. L who is growing in her faith as she takes the bull by the horns and gets her house, literal and figurative, in order!
CL working away and keeping her mama safe and happy as they both serve Him faithfully.
Optimistic A who kept me riveted with her stories leading up to her wedding and pregnancy.
L, my dear sister separated from birth, sharing her beautiful photography and life on a ranch.
D, another sister who showed me how one little tree can tell a story.
J, persevering no matter what life throws her way and convincing me that I just might have some beauty in me!
R, working to fight a government he finds tyranical.
A, a man who fights his anger and protects his family.
L, a man of God who preaches truth unashamedly.
A, waiting to go home after faithfully following her hubby.
S, another mom gone back to school as she inspires me to think about running again.
C, wonder woman, building her body as she nurtures her boys!
S, the chronicler, traveling and dancing as she keeps her girls and honey supplied with gourmet meals.
L, the hipster, whose are hangs in my home.
A, a sweet mom having fun with her girls, taking pictures to chronicle their antics.
M, another sister separated from birth living far away from me where she teaches and grows her family taking them on wonderful adventures!
J, who is hardly around but can get me to chuckle no matter what.
D, a fellow gram who loves her challenged grandchild so much it hurt and who supports her daughter no matter what.
S, across the pond, too, another gram who has the heart of a poet.
I know there are more and I hope you will forgive me if I have left you out. The Holy Spirit knows and sends prayers for all for me.
Much love, g
How could I forget my partner in crime, J! We've never met but we have so much in common including fms.
As I sit here typing, my bed is calling out to me to take a nap. Himself is out with The Boy and Bells is watching Cinderella for maybe the fifteenth time in a month so I have no option but to stay awake.
Life has been challenging but we are muddling through. God's mercy is evident in that we still have a roof over our heads, food in our bellies and clothing on our backs.
Thinking about the souls I have met here brings a warm feeling to my heart. Do you know that when you come to mind I try to remember to pray for you?
For dear J whose health has been a trial and is awaiting treatment.
For wonderful R who is going to school and taking care of home and hearth whilst battling her own health issues.
For T across the pond who never fails to bring a smile to my face.
For G who lives with some of the same challenges on the "spectrum" that we live with.
B, the survivor whose mom is battling a devastating illness.
Irrepressible 'r as he continues to labor in the Lord's army.
C, a proud professional working to bring justice to a system that is failing. My beloved adopted child W, who has a spirit of adventure and love.
My adopted son, R, working too hard but trying to balance his life with a little fun.
D who keeps me laughing as she lives her life loving her hubby, daughters, grandkids and many pets, hopefully in that order. L who is growing in her faith as she takes the bull by the horns and gets her house, literal and figurative, in order!
CL working away and keeping her mama safe and happy as they both serve Him faithfully.
Optimistic A who kept me riveted with her stories leading up to her wedding and pregnancy.
L, my dear sister separated from birth, sharing her beautiful photography and life on a ranch.
D, another sister who showed me how one little tree can tell a story.
J, persevering no matter what life throws her way and convincing me that I just might have some beauty in me!
R, working to fight a government he finds tyranical.
A, a man who fights his anger and protects his family.
L, a man of God who preaches truth unashamedly.
A, waiting to go home after faithfully following her hubby.
S, another mom gone back to school as she inspires me to think about running again.
C, wonder woman, building her body as she nurtures her boys!
S, the chronicler, traveling and dancing as she keeps her girls and honey supplied with gourmet meals.
L, the hipster, whose are hangs in my home.
A, a sweet mom having fun with her girls, taking pictures to chronicle their antics.
M, another sister separated from birth living far away from me where she teaches and grows her family taking them on wonderful adventures!
J, who is hardly around but can get me to chuckle no matter what.
D, a fellow gram who loves her challenged grandchild so much it hurt and who supports her daughter no matter what.
S, across the pond, too, another gram who has the heart of a poet.
I know there are more and I hope you will forgive me if I have left you out. The Holy Spirit knows and sends prayers for all for me.
Much love, g
How could I forget my partner in crime, J! We've never met but we have so much in common including fms.
Thursday, July 8, 2010
The Spoon Theory
This was sent to me via email and really hits the nail on the head. Just because a person doesn't show overt symptoms dosn't mean they aren't hurting. Let me know what you think.
The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino
The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino
Thursday, June 24, 2010
What a Difference Four Years Makes
Yippers; I have been blogging for four years now. Seems longer somehow.
Four years ago I was still in my 40's and maybe twenty pounds thinner, Isabella wasn't yet a year old and the Boy was still in high school.
We have been through rehab, an autism diagnosis and numerous dramas with our children til I thought I would scream.
We have been through numerous medical emergencies with Himself's parents and lost one of them just a couple of months ago.
We almost lost our house.
We have given and received love from all four of our parents, our children and our wonderful grandchild.
We have seen a little girl who screamed and spoke gibberish become a pretty well behaved child who speaks fairly well and is the happiest person we know. Progress has been fairly steady (not so common in our world of ASD's) and we anticipate even greater things.
We have seen our son keep a job for nearly two years with a company that is Fortune 1oo for best places to work.
I have gained freedom from demons in my life that held me captive since childhood and recognize that God loves me beyond anything I can imagine.
I have met, in person and by phone, several of my blogging buddies and been blessed by them.
We didn't lose our house.
God is good.
Thanks for sticking by me.
Four years ago I was still in my 40's and maybe twenty pounds thinner, Isabella wasn't yet a year old and the Boy was still in high school.
We have been through rehab, an autism diagnosis and numerous dramas with our children til I thought I would scream.
We have been through numerous medical emergencies with Himself's parents and lost one of them just a couple of months ago.
We almost lost our house.
We have given and received love from all four of our parents, our children and our wonderful grandchild.
We have seen a little girl who screamed and spoke gibberish become a pretty well behaved child who speaks fairly well and is the happiest person we know. Progress has been fairly steady (not so common in our world of ASD's) and we anticipate even greater things.
We have seen our son keep a job for nearly two years with a company that is Fortune 1oo for best places to work.
I have gained freedom from demons in my life that held me captive since childhood and recognize that God loves me beyond anything I can imagine.
I have met, in person and by phone, several of my blogging buddies and been blessed by them.
We didn't lose our house.
God is good.
Thanks for sticking by me.
Saturday, May 29, 2010
Success is Sweet
The Walk for Autism Speaks was a resounding success. Over 4000 people showed up and we are nearing the monetary goal set by our chapter. I was so proud of our team. Two people didn't show up for our team due to illness but two other adults and two children took their place unexpectedly!
Recently, I read that, in the future not so distant future, autism will be the health care issue to be more concerned about than elder care when it comes to finances. It's reported that every 20 minutes another child is diagnosed. Sounds like a pandemic to me because the autism rates are consistent around the world.
Himself and his fellow behavior detection officers at the airport were given training having to do with recognizing autistic behavior as opposed to someone just being obnoxious or mentally unstable, e.g. someone exhibiting echolalia. This type of training is taking place in police departments in some areas, too. It is wonderful to see!
Isabella looks at me and asks, "Do you love me?" Where that came from I will never know. I'll bet you know the answer! She is my heart.
Thank you for caring so much, dear ones. Bless you all.
Recently, I read that, in the future not so distant future, autism will be the health care issue to be more concerned about than elder care when it comes to finances. It's reported that every 20 minutes another child is diagnosed. Sounds like a pandemic to me because the autism rates are consistent around the world.
Himself and his fellow behavior detection officers at the airport were given training having to do with recognizing autistic behavior as opposed to someone just being obnoxious or mentally unstable, e.g. someone exhibiting echolalia. This type of training is taking place in police departments in some areas, too. It is wonderful to see!
Isabella looks at me and asks, "Do you love me?" Where that came from I will never know. I'll bet you know the answer! She is my heart.
Thank you for caring so much, dear ones. Bless you all.
Saturday, May 22, 2010
A Walk in the Park
Tomorrow, we walk 1.3 miles to cap off a time of fundraising. My team and I have collected over two thousand dollars for the organization Autism Speaks which raises awareness, funds research and assists families in this "club" we belong to.
Did we choose autism? No. Do we want a cure? I do, some don't. We have a wonderful child in our lives who just happens to have autism. She sometimes makes gains in her journey bringing her more and more into this world and we see our girl's inner self emerge more. She is fun and happy and a joy in our lives.
Other families have no idea if their children are happy or if they know love. They seem to be far, far away in another world. It is for these children and for their loved ones, as much if not more than for our own, that we collect and walk and pray.
When autism speaks, are we able to listen? Sometimes only with our hearts.
Thursday, May 13, 2010
New Routine?
Being someone who doesn't like change all that much, the fact that I have been thinking that I need a change in routine is a bit odd. It's not that my life isn't fulfilling because it is. It would be nice, though, to have some choices.
One choice I would make would be to be fibromyalgia free for a while. Usually, I don't even notice the pain I live with daily. It is just part of my life and I accept it. However, when I have a night like last night, where the pain woke me so often, well, it would be nice to sleep uninterrupted. Also, I would like to be able to make plans without having alternatives planned just in case the fms flares up.
Another choice would be to have the concentration to go back to school or hold down a job. FMS works havoc on one's concentration. Just the thought of going back to work causes anxiety deep within me.
I know that every school day I need to be available to pick up Isabella at 2:30. Do I have a choice in this? I could refuse but who would do it? Today, it would have been lovely to take a nap to make up for last night's lost sleep. Yet, here I sit, with The Little Mermaid on for the fifth time in three days.
A friend recently wondered out loud what her life would have been like had she taken the path she originally planned. We won't ever find out, will we? This is not the life I planned either. However, we are where we are and can either dwell on the past in times of doubt or press on and make the best of where our choices have led us.
Sometimes overwhelmed but always blessed. I suppose that sums up my life right now. That's not too bad, right?
One choice I would make would be to be fibromyalgia free for a while. Usually, I don't even notice the pain I live with daily. It is just part of my life and I accept it. However, when I have a night like last night, where the pain woke me so often, well, it would be nice to sleep uninterrupted. Also, I would like to be able to make plans without having alternatives planned just in case the fms flares up.
Another choice would be to have the concentration to go back to school or hold down a job. FMS works havoc on one's concentration. Just the thought of going back to work causes anxiety deep within me.
I know that every school day I need to be available to pick up Isabella at 2:30. Do I have a choice in this? I could refuse but who would do it? Today, it would have been lovely to take a nap to make up for last night's lost sleep. Yet, here I sit, with The Little Mermaid on for the fifth time in three days.
A friend recently wondered out loud what her life would have been like had she taken the path she originally planned. We won't ever find out, will we? This is not the life I planned either. However, we are where we are and can either dwell on the past in times of doubt or press on and make the best of where our choices have led us.
Sometimes overwhelmed but always blessed. I suppose that sums up my life right now. That's not too bad, right?
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