The past few months my friends and family has helped me raise over $3000.00 for the Disneyland Half marathon. This race will be my first ever marathon and I am very excited. Knowing that I am not only running in the happiest place on earth, but running for my son.
Earlier this year I joined "Run for our Sons" Team through Parent Project Muscular Dystrophy. I had no idea what I was to expect or how I was going to run 13.1 miles let alone raise $1200.00 to be able to run through MY favorite place in the world! Our fundraising started with simple emails sent to everyone in my contact list, daily postings on Facebook and before I knew it, I raised $1200.00 without any problems. Then I raised my personal goal to $3000. I knew that this would be a little more difficult, but no more difficult than it is for those many boys, men and few girls with Duchenne to be able to simply walk. So I hit the rest of my goal head on, with one thing in mind, FUNDING A CURE.
I decided to have a little Bake sale, WELL this little bake sale turned out to be a large bake sale and we sold sweatshirts, books, and every baked item you could think of. We met our goal of $3000. just by having a little bake sale. I found out that all you need to do is send a little information to your local paper and they will put your event in the local section. We had many Little league teams purchase dozens of cookies and cupcakes, it was a win win situation.
With all the fund raising set on the back burner I started to seriously train. Our whole family changed our eating habits, which is not to bad of an idea for anyone with Duchenne to avoid junk food. We started off with short walks, jogs, and I most recently ran 8.25 miles and felt GREAT. If my son had not had Duchenne I would have thought of every excuse on why I cant run, shouldn't run, or didn't have time to run.
I am still training, not as hard as I think I should be, but training none the less. I run with a double jogging stroller and every time I feel like giving up, I look down and see his little legs hanging over the seat with his body covered by the umbrella. What I see are two little legs with enlarged calves that I stretch everyday, Massage when he gets cramps and little legs that cant run like you or I. That's what keeps me going! I will keep running until I can see those little legs able to run and keep up with everyone else. The half marathon is about a month away and I know its going to be very emotional for me, I sometimes cry on runs. My reason for running is not selfish, its not to be healthier, to be thinner, not to have a sexy body or because its "My thing". My reason for running is my son, plain and simple and when people ask me how? why? I ask them "What would you do if your child was given a diagnosis with no cure"? Usually its no response.
So with all that is said and done, My next Stop is DISNEYLAND! Hope to see you there!
Newborn
Run for Our Son's Donation
Tuesday, July 26, 2011
Monday, July 11, 2011
Butterfly Garden
Most recently Nicholas learned about Butterflies at school. He brings his school projects home to share with his sister, and teaches her all he can. Nicholas really loved learning about the caterpillars and how they turn into Butterflies. We decided to get a Butterfly house, I was worried about keeping bugs captive. But I ordered them online anyways, hoping they would survive. I felt very guilty about ordering a creature and it being sent via mail.
The Caterpillars arrived safe and sound via the post office, and we ripped the box open! Nicholas and Bella gathered around the little container and they both said "OH, WOW", from that moment I knew i made a good choice to allow bugs in my home. Everyday we check on them and see how fat they are getting, they are all now at the top of the cup hanging ready to turn into beautiful painted lady's.
I started looking online at how i was going to release these little guys and give them the opportunity to survive. So...We started a butterfly garden. We planted parsley, ecineacia, Butterfly bush, marigolds, chives and mellons. It came together very nice and I suprised myself with making a "kid/butterfly" garden. This has made me feel so proud that my kids helped me plant and water the plants daily. Not to mention they see that our plants have attracted tons of new butterflies! Nicholas is learning the names of them while Bella is picking the flowers with the catapillars on them.
When I was doing my "Butterfly homework" I came across a wonderfull meaning of the butterfly. It made me think of Duchenne, my kids, my family.
If a child whispers a wish to a butterfly it will take that wish to the great spirit and it WILL come true. Because wishes only come true if the one who is told only shares it with the great spirit, sice butterflies cant make noise, your secret is safe.
So we will all be making our wish when we set our Butterflies free in the Garden. Can you guess what my wish will be?
The Caterpillars arrived safe and sound via the post office, and we ripped the box open! Nicholas and Bella gathered around the little container and they both said "OH, WOW", from that moment I knew i made a good choice to allow bugs in my home. Everyday we check on them and see how fat they are getting, they are all now at the top of the cup hanging ready to turn into beautiful painted lady's.
I started looking online at how i was going to release these little guys and give them the opportunity to survive. So...We started a butterfly garden. We planted parsley, ecineacia, Butterfly bush, marigolds, chives and mellons. It came together very nice and I suprised myself with making a "kid/butterfly" garden. This has made me feel so proud that my kids helped me plant and water the plants daily. Not to mention they see that our plants have attracted tons of new butterflies! Nicholas is learning the names of them while Bella is picking the flowers with the catapillars on them.
When I was doing my "Butterfly homework" I came across a wonderfull meaning of the butterfly. It made me think of Duchenne, my kids, my family.
If a child whispers a wish to a butterfly it will take that wish to the great spirit and it WILL come true. Because wishes only come true if the one who is told only shares it with the great spirit, sice butterflies cant make noise, your secret is safe.
Sunday, June 26, 2011
Heavy Heart
Most recently Nicholas was playing with another child at a function. This child is very kind and open to other adults, yet as I listened closer I could hear the "Normal" society's opinion of Duchenne come out of this young child's mouth and it made my heart very heavy. I could tell it wasn't purposely directed at my son, but ignorance that is taught and passed down from his parents without even realising it.
The day started out very normal for us, chasing the kids around trying to get them ready for our day. Nicholas screaming that he wanted to do something other than getting dressed, and Bella continuously saying she has to sit on the toilet. We finally got to our destination 20 minutes late and feeling full of anxiety,s then being told that we were late didn't make me feel any better. But all was well and the kids settled in as always.
Nicholas of course started playing with cars and wanted to play with the other children. He typically will play side by side and not with other children, but this day was different. Nicholas was trying very hard to interact, which is a huge step for him. I did my best to step back and let him play, but I listened closely just in case I had to intervene due to screaming or throwing toys. The first hour went very well and everyone seemed happy.
I herd a door slam! The first thing I thought was my son got mad, angry, sad and slammed the door on his sister. Nicholas came running straight to me, crying saying "not nice, he pushed me out of the room, he doesn't like me"! So I decided to go around the corner and as I did I herd this "I don't like him, he is slow and he isn't cool, he is following me, tell him to go away", the parent just told the child to go play in the other room away from my son. So in my mind, the parent condoned the behavior of slamming the door in my sons face. Condoned that the child didn't like my child because he was slow and not "cool". I keep thinking to myself, maybe I'm being over-protective, over-looking the situation.
As the month has gone by I have realised that we avoid birthday parties, farmers markets (jump houses) all because the other kids cant understand why my son takes his time climbing onto things, slow to catch a ball, cant get up or run as quickly as them. I have seen him pushed to the ground, yelled at and now rejected. This is so hurtful especially coming from his peers. I believe it could all be avoided if parents took the time to talk with their children, teach their children, not just send them to play in another room or avoid playing with a child who has a disability. They learn how to socialize as adults from playing as a child.
My heart is heavy because my son did not understand why, he wants to be a normal child, he doesn't want to be slow or hard to understand. He just wants to be Nicholas...
The day started out very normal for us, chasing the kids around trying to get them ready for our day. Nicholas screaming that he wanted to do something other than getting dressed, and Bella continuously saying she has to sit on the toilet. We finally got to our destination 20 minutes late and feeling full of anxiety,s then being told that we were late didn't make me feel any better. But all was well and the kids settled in as always.
Nicholas of course started playing with cars and wanted to play with the other children. He typically will play side by side and not with other children, but this day was different. Nicholas was trying very hard to interact, which is a huge step for him. I did my best to step back and let him play, but I listened closely just in case I had to intervene due to screaming or throwing toys. The first hour went very well and everyone seemed happy.
I herd a door slam! The first thing I thought was my son got mad, angry, sad and slammed the door on his sister. Nicholas came running straight to me, crying saying "not nice, he pushed me out of the room, he doesn't like me"! So I decided to go around the corner and as I did I herd this "I don't like him, he is slow and he isn't cool, he is following me, tell him to go away", the parent just told the child to go play in the other room away from my son. So in my mind, the parent condoned the behavior of slamming the door in my sons face. Condoned that the child didn't like my child because he was slow and not "cool". I keep thinking to myself, maybe I'm being over-protective, over-looking the situation.
As the month has gone by I have realised that we avoid birthday parties, farmers markets (jump houses) all because the other kids cant understand why my son takes his time climbing onto things, slow to catch a ball, cant get up or run as quickly as them. I have seen him pushed to the ground, yelled at and now rejected. This is so hurtful especially coming from his peers. I believe it could all be avoided if parents took the time to talk with their children, teach their children, not just send them to play in another room or avoid playing with a child who has a disability. They learn how to socialize as adults from playing as a child.
My heart is heavy because my son did not understand why, he wants to be a normal child, he doesn't want to be slow or hard to understand. He just wants to be Nicholas...
Wednesday, February 9, 2011
Daily life
Today I was thinking about all the simple things that I take for granted.
When I talk I use my arms to express emotion.
When I have a question in a room, I raise my hand.
When I need to use the restroom, I don't think twice, I go.
When I'm Hungry, I go get food out of the kitchen.
When I drop something, I pick it up.
The list can go on and on. Most of us don't think twice about these actions. These are common everyday actions, that we do daily without help.
Then I think of all the boys with Duchenne. All of the above, is hard for them to do. Some of these items such as going to the restroom, they think 100 times over and over again on just how to ask the aide at school for help. When they drop an item, they have to WAIT for someone to get it. These are all common things that you and I do daily, yet most of us don't think twice or seem to care.
I have herd everything from boys with Duchenne not wanting to go back to school because its just not accessible enough and it takes too much energy for them to get around. To schools not understanding the needs, which goes back to my belief that if you don't live it you don't know it. Most boys with Duchenne cant go to private schools because they don't offer all the services that are in a public IEP, which I read this morning and made me so upset. These boys are being pushed from society simply because society doesn't understand the simple measures it should take. The common, healthy person is lazy, and only thinks for themselves. Not that I am saying all people are, but if we think hard on this, you realize that all public areas are made for the walking, non-wheelchair, self sufficient person. Why cant we just make ALL areas, computers, ATMS, schools, stores, ect.... accessible?! Society pleases only those who are "normal". Just my thought for today, take or leave it....
When I talk I use my arms to express emotion.
When I have a question in a room, I raise my hand.
When I need to use the restroom, I don't think twice, I go.
When I'm Hungry, I go get food out of the kitchen.
When I drop something, I pick it up.
The list can go on and on. Most of us don't think twice about these actions. These are common everyday actions, that we do daily without help.
Then I think of all the boys with Duchenne. All of the above, is hard for them to do. Some of these items such as going to the restroom, they think 100 times over and over again on just how to ask the aide at school for help. When they drop an item, they have to WAIT for someone to get it. These are all common things that you and I do daily, yet most of us don't think twice or seem to care.
I have herd everything from boys with Duchenne not wanting to go back to school because its just not accessible enough and it takes too much energy for them to get around. To schools not understanding the needs, which goes back to my belief that if you don't live it you don't know it. Most boys with Duchenne cant go to private schools because they don't offer all the services that are in a public IEP, which I read this morning and made me so upset. These boys are being pushed from society simply because society doesn't understand the simple measures it should take. The common, healthy person is lazy, and only thinks for themselves. Not that I am saying all people are, but if we think hard on this, you realize that all public areas are made for the walking, non-wheelchair, self sufficient person. Why cant we just make ALL areas, computers, ATMS, schools, stores, ect.... accessible?! Society pleases only those who are "normal". Just my thought for today, take or leave it....
Thursday, December 30, 2010
Year one
Well it officially has been one year since Nicholas got pneumonia. This was the start of our roller coaster of health for our precious boy. I would have never thought that the outcome would have landed us here, a place so deep that at times there is no light at the end of our tunnel. The pain in my heart for my son is a pain that pierces my heart and continues to strike everyday as I read story's or emails from parents who have been on this path longer than us. I recently was told by a parent that no matter how long its been since the day of the diagnosis, the pain is the same for all, and we are all in this together to help one another.
Nicholas is now back on his nebulizer and antibiotics due to a cold that most people just take Robitussin, cough drops and 3 days later they are feeling better. This brings back last year to me as if it were yesterday! How I hated giving him all those medications, breathing treatments and Shots! He was such a trooper, that now he says "mom is it time for my treatment"? Its very bittersweet to me. I am grateful for all the other moms that i have met along the way, they hold my hand, tell me its ok to cry, tell me to try something different, and don't ever judge the decisions I make for my son's health, but will not hesitate to tell me there is always another way.
I have come to hate the winter and probably will for a long time, one day we will see light and one day he will be 100% healthy.
Nicholas is now back on his nebulizer and antibiotics due to a cold that most people just take Robitussin, cough drops and 3 days later they are feeling better. This brings back last year to me as if it were yesterday! How I hated giving him all those medications, breathing treatments and Shots! He was such a trooper, that now he says "mom is it time for my treatment"? Its very bittersweet to me. I am grateful for all the other moms that i have met along the way, they hold my hand, tell me its ok to cry, tell me to try something different, and don't ever judge the decisions I make for my son's health, but will not hesitate to tell me there is always another way.
I have come to hate the winter and probably will for a long time, one day we will see light and one day he will be 100% healthy.
Friday, December 17, 2010
WHY?
Christmas time brings joy and happiness to most children. My children are playing, laughing, singing Christmas songs and anticipation is high for the day that they may open the gifts wrapped so neat under our bright, decorated tree. My husband and I are so excited as this year both our children "get " Christmas and they know all about SANTA.
Christmas also brings much sadness to many families who have lost a child to DMD, CANCER, or other circumstances. I am constantly reading that another young boy has lost his life to DUCHENNE. This time of year is very hard for our boys, due to colds that turn to pneumonia in as little as a few days. Duchenne attacks the lungs as well as the heart, and as we have learned our son has not been sparred this too.
Many people who read my face book, blogs, emails, sign on my car, or my sweatshirt, think I am going overboard with DUCHENNE awareness. They commonly ask WHY so much? WHY..well my son can not advocate for himself, he can not take himself to the doctor, he can not speak about his disease. WHY is that so many boys have lost there lives and they can not speak, so I will speak for them, I will speak for the boys who WILL be diagnosed, I will speak for the parents who have yet to hear those words that all DMD parents hear..."your son has Duchenne muscular Dystrophy, there is no cure, and he MAY live to be 20, but there is no guarantee.
In the past month 3 boys, that I know of, have passed away leaving a huge hole in there families hearts and leaving a huge hole in our close community. Imagine one Christmas opening gifts with your child and the next....they are gone. I don't want to imagine that or even live that for my son...SO when you ask WHY?! Well I want my son to beat this, I want all these boys to beat this.
A wise man once said " You are only a failure, the day you stop trying"
This Christmas has really touched me in a way that I have never felt before. I don't take life for granted, I don't question WHY, I question HOW. HOW can we cure this disease.
Christmas also brings much sadness to many families who have lost a child to DMD, CANCER, or other circumstances. I am constantly reading that another young boy has lost his life to DUCHENNE. This time of year is very hard for our boys, due to colds that turn to pneumonia in as little as a few days. Duchenne attacks the lungs as well as the heart, and as we have learned our son has not been sparred this too.
Many people who read my face book, blogs, emails, sign on my car, or my sweatshirt, think I am going overboard with DUCHENNE awareness. They commonly ask WHY so much? WHY..well my son can not advocate for himself, he can not take himself to the doctor, he can not speak about his disease. WHY is that so many boys have lost there lives and they can not speak, so I will speak for them, I will speak for the boys who WILL be diagnosed, I will speak for the parents who have yet to hear those words that all DMD parents hear..."your son has Duchenne muscular Dystrophy, there is no cure, and he MAY live to be 20, but there is no guarantee.
In the past month 3 boys, that I know of, have passed away leaving a huge hole in there families hearts and leaving a huge hole in our close community. Imagine one Christmas opening gifts with your child and the next....they are gone. I don't want to imagine that or even live that for my son...SO when you ask WHY?! Well I want my son to beat this, I want all these boys to beat this.
A wise man once said " You are only a failure, the day you stop trying"
This Christmas has really touched me in a way that I have never felt before. I don't take life for granted, I don't question WHY, I question HOW. HOW can we cure this disease.
Tuesday, December 7, 2010
Winter Journey
We survived Disneyland!Again!
This year Nicholas enjoyed Disneyland much more than any other year, and laughed more than he has ever laughed. Our trip was a short one and started off with the Disney trick or treat (saved us money and rode all the rides;}) the next day we went to California adventure and just took our sweet time as Nicholas lead us through the park to each ride. His favorite part was watching the roller coaster blast off and he would yell "woahhh" each time like it was the first time, over and over again.
Sal and Nicholas then attended the MDA Holiday party and they looked so handsome as they walked out the door, I Just had to take pictures! Isabella and I stayed home, due to her getting the first cold of the season. We did not want to take the chance of getting anyone sick, especially any child or adult with Muscular Dystrophy, it could be very dangerous. So we stayed home and spent girl time together.
Soon after Nicholas would get sick and with much luck we took a very aggressive approach and he is feeling much better. This scared both Sal and I as we looked back to our year. It was exactly this time last year that Nicholas would get so sick and was on every type of breathing treatment and steroid and then hospitalized shortly after. I still feel as if we are on that roller coaster that started a year ago. The roller coaster seems to have jumped the track now and we never know when its going to start going out of control again. I hear many people with "normal" kids tell me that its normal and kids need to get colds. Well there kids doesn't have DMD and they don't realize how a simple cold or flue that affects a "normal" child, could be lethal to mine.
We are preparing for Nicholas' birthday party, its a swim party at the Jim Booth swim school. I thought, What a great way for him to play and still be comfortable! Isabella and Nicholas love swimming and the faculty at Jim booth is awesome! Warm, indoor and shallow! They have been taking lessons on Wednesday and Mondays and are already starting to swim!
The last but I feel is very dear to my heart is that I submitted our short story on DMD to Misty Vanderweele's new book that will be released in February 2011. This was so hard for me to express not only my emotions but tell my sons journey from beginning to current without crying or even hoping not to forget something, which I'm sure i left out a lot! I felt this was so important for my story to be herd, so that the person who doesn't know or understand, or live DMD, could get a small glimpse of what its like to think your life is going so perfect and then in a blink of an eye.....its shattered and your dreams, ideas, and vision of your child's future is destroyed by a Disease that I had never even herd of until that terrible day at the neurologist office. Its important for people to understand that it can happen to ANYONE! I have new dreams now and my dreams are to not only raise awareness, but to one day be able to say to my grandchildren, this is what your father has and he is a surviver, I dream that it will be like a broken bone that will mend with treatment. I stand by PPMD's motto ONE VOICE to END DUCHENNE!
This year Nicholas enjoyed Disneyland much more than any other year, and laughed more than he has ever laughed. Our trip was a short one and started off with the Disney trick or treat (saved us money and rode all the rides;}) the next day we went to California adventure and just took our sweet time as Nicholas lead us through the park to each ride. His favorite part was watching the roller coaster blast off and he would yell "woahhh" each time like it was the first time, over and over again.
Sal and Nicholas then attended the MDA Holiday party and they looked so handsome as they walked out the door, I Just had to take pictures! Isabella and I stayed home, due to her getting the first cold of the season. We did not want to take the chance of getting anyone sick, especially any child or adult with Muscular Dystrophy, it could be very dangerous. So we stayed home and spent girl time together.
Soon after Nicholas would get sick and with much luck we took a very aggressive approach and he is feeling much better. This scared both Sal and I as we looked back to our year. It was exactly this time last year that Nicholas would get so sick and was on every type of breathing treatment and steroid and then hospitalized shortly after. I still feel as if we are on that roller coaster that started a year ago. The roller coaster seems to have jumped the track now and we never know when its going to start going out of control again. I hear many people with "normal" kids tell me that its normal and kids need to get colds. Well there kids doesn't have DMD and they don't realize how a simple cold or flue that affects a "normal" child, could be lethal to mine.
We are preparing for Nicholas' birthday party, its a swim party at the Jim Booth swim school. I thought, What a great way for him to play and still be comfortable! Isabella and Nicholas love swimming and the faculty at Jim booth is awesome! Warm, indoor and shallow! They have been taking lessons on Wednesday and Mondays and are already starting to swim!
The last but I feel is very dear to my heart is that I submitted our short story on DMD to Misty Vanderweele's new book that will be released in February 2011. This was so hard for me to express not only my emotions but tell my sons journey from beginning to current without crying or even hoping not to forget something, which I'm sure i left out a lot! I felt this was so important for my story to be herd, so that the person who doesn't know or understand, or live DMD, could get a small glimpse of what its like to think your life is going so perfect and then in a blink of an eye.....its shattered and your dreams, ideas, and vision of your child's future is destroyed by a Disease that I had never even herd of until that terrible day at the neurologist office. Its important for people to understand that it can happen to ANYONE! I have new dreams now and my dreams are to not only raise awareness, but to one day be able to say to my grandchildren, this is what your father has and he is a surviver, I dream that it will be like a broken bone that will mend with treatment. I stand by PPMD's motto ONE VOICE to END DUCHENNE!
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