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.
Newborn
Run for Our Son's Donation
Thursday, December 30, 2010
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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