Here is a short film that Justin and Ojaio put together for our Great Strides team, Liam's Legacy for Ojaio's Hope...
If you would like to learn more about Ojaio and what living with CF entails, or to make a donation, click here.
Friday, May 27, 2011
Saturday, July 10, 2010
Friday, February 12, 2010
People Like Eva
I don't know what to write about this. I just want you to know. This is real. This is someone I've been rooting for for a few years now. She is amazing. Eva, and everyone else who has lived with CF, and shared their story with the world. People like Eva who have touched the lives of others, spreading awareness for this disease. It's people like Eva that have changed CF for my Ojaio.
Beautiful Eva.
Thank you for your legacy.
You have been and will always be an inspiration to me.
65redroses.livejournal.com
Beautiful Eva.
Thank you for your legacy.
You have been and will always be an inspiration to me.
65redroses.livejournal.com
Monday, February 1, 2010
Friday, January 29, 2010
Tuesday, January 5, 2010
Stranger
A few weeks back I had an interesting conversation with a stranger. Somehow it came out that I have a daughter with CF. It's rare that this fact comes out while conversing with strangers. I don't like to tell everyone. I definitely told more strangers right after Ojaio was born, I don't know why, perhaps as a way to process it all? Though, for some reason I had to tell this stranger, who is also a mother, that my daughter has CF. Was she asking about preschool? I don't remember.
This stranger was very talkative and blunt, but very genuine and concerning with the many questions she asked me in regards to being a mother to a child with special needs. Questions like, "Is it hard for you to be friends with parents who do not have a child with special needs?"
This intrigues me. Being a first time mother to a child with CF means I will never know what it is like to have a child without special needs. On the contrary, parents with "healthy" children will never know what it's like to have a child with special needs. Obviously, right?
Yes, for me it creates a little bit of a divide. I can't always relate to the worries of other mothers. Concerns over routine vaccinations when Ojaio was poked at least 100 times in her first year of life, or forking over money on trendy baby clothing and gear when all of mine goes to prescriptions and food/supplements. Not to mention my "oven" that may never be filled again with a "bun". However, I love all of my mom friends with healthy children and can't get enough of them. We may not have had all of the same parenting experiences, but they listen to me whine and vent, and there are some experiences we do share. But that's not what this post is about.
This is about a comment that this stranger made. I wish I could remember it word for word, but all I remember was the gist of it. She basically told me that parents with healthy children feel guilty for having healthy children. Like they cheated. She was obviously grateful for her children's health, but also feels kind of like I took one for the team, you know? At least this is what I gathered.
I remember growing up and hearing about parents with children with special needs. It always seemed like they were held on such a pedestal. It was so tragic that they were put into this situation. I felt sorry for them. How did they ever go on with their lives?
When I was pregnant with Ojaio, probably around five months pregnant, at which point we knew I carried the CF mutation but Justin's status was still unknown, we were watching TV and just happened to come across what must have been a news special on a woman living with CF. We sat and watched all of the pills and the medications. We listened to the statistics and the life expectancy, we heard the hoarse voice and nasty cough, and we saw The Vest for the first time. I sat and thought to myself, "How could I love my child if I have to go through all of that with her?" I'm just being honest. I really could not comprehend being the mother to a child with CF. It wasn't at all what I had planned for my child. There was no room for all of that stuff this woman on TV had to do! Even though it was a very uplifting special on CF, discussing the wonderful new treatments and what not, I saw nothing but sadness and resentment. I saw doom.
It saddens me to think back to that moment. How could I ever feel that way? Ojaio is my everything and I will do whatever it takes to make sure she lives the longest and healthiest life possible. Not only do I love this creature the same as any other mother loves her child, but I love her more. Having a child with special needs, a child with a chronic, life threatening disease has taught me how to live. My child has given me the best gift second to the gift of being her mother: the gift to truly appreciate life. To stop in the moment and take it all in. To stop worrying about the silly things.
Today Ojaio and I went to the beach. Yes, the beach in January. It was a beautiful day, at least 75 degrees with no breeze allowing me to bask in the So Cal sun wearing only a tank top and cuffed jeans. We had a picnic and Ojaio made sand angels and sand castles and chased after the seagulls and the pigeons. Her curious eyes followed the lifeguard in his truck with concern until he was out of sight. I just laid on the blanket watching her the entire time. I couldn't take my eyes off of her. Admiring her beauty, her contagious smile, her curiosity. She has a beauty that's raw and wild.
Sometimes I feel like I'm high. Really. Since having Ojaio in my life, it seems as though all of my senses have been heightened.
For me, life stands still. I often catch myself smiling in a daze while staring at my girl.
Sure, having a child with CF is a lot of work. More often than not my life is very serious and there's a lot of pressure to get everything done every day. I've seen my 5'6" frame weigh only 103 pounds due to stress and depression. At times I torture my heart and my mind with the what-ifs of Ojaio's future, and some nights I have to shut myself in the bathroom while I try to calm and quiet a gut wrenching cry usually stemming from the feeling of "it's just not fair".
But most of the time it isn't that way. By now I've gotten used to the extra work and the nighttime-cries have been coming fewer and farther between. It's more than likely you'll find me feeling high nowadays (not literally, I promise!).
Before I finish up this post I'll leave you with one more memory...
You know when someone's expecting and you ask them, "So, do you want a girl or a boy?" Then they reply with, "I don't care, as long as it's healthy." Well once, after having Ojaio, I asked a coworkers husband this question. He of course responded with, "I don't care, as long as the baby's heal... uh," he stopped. It was obvious that he remembered he was speaking with Ojaio's mother. I then added, "Yes, healthy is a good thing!" Talk about awkward.
It's true though. Everyone wants their baby to be healthy. It would be cruel to want otherwise. However, it has been my experience that an unhealthy child or a child with special needs isn't doom, it's just different.
This stranger was very talkative and blunt, but very genuine and concerning with the many questions she asked me in regards to being a mother to a child with special needs. Questions like, "Is it hard for you to be friends with parents who do not have a child with special needs?"
This intrigues me. Being a first time mother to a child with CF means I will never know what it is like to have a child without special needs. On the contrary, parents with "healthy" children will never know what it's like to have a child with special needs. Obviously, right?
Yes, for me it creates a little bit of a divide. I can't always relate to the worries of other mothers. Concerns over routine vaccinations when Ojaio was poked at least 100 times in her first year of life, or forking over money on trendy baby clothing and gear when all of mine goes to prescriptions and food/supplements. Not to mention my "oven" that may never be filled again with a "bun". However, I love all of my mom friends with healthy children and can't get enough of them. We may not have had all of the same parenting experiences, but they listen to me whine and vent, and there are some experiences we do share. But that's not what this post is about.
This is about a comment that this stranger made. I wish I could remember it word for word, but all I remember was the gist of it. She basically told me that parents with healthy children feel guilty for having healthy children. Like they cheated. She was obviously grateful for her children's health, but also feels kind of like I took one for the team, you know? At least this is what I gathered.
I remember growing up and hearing about parents with children with special needs. It always seemed like they were held on such a pedestal. It was so tragic that they were put into this situation. I felt sorry for them. How did they ever go on with their lives?
When I was pregnant with Ojaio, probably around five months pregnant, at which point we knew I carried the CF mutation but Justin's status was still unknown, we were watching TV and just happened to come across what must have been a news special on a woman living with CF. We sat and watched all of the pills and the medications. We listened to the statistics and the life expectancy, we heard the hoarse voice and nasty cough, and we saw The Vest for the first time. I sat and thought to myself, "How could I love my child if I have to go through all of that with her?" I'm just being honest. I really could not comprehend being the mother to a child with CF. It wasn't at all what I had planned for my child. There was no room for all of that stuff this woman on TV had to do! Even though it was a very uplifting special on CF, discussing the wonderful new treatments and what not, I saw nothing but sadness and resentment. I saw doom.
It saddens me to think back to that moment. How could I ever feel that way? Ojaio is my everything and I will do whatever it takes to make sure she lives the longest and healthiest life possible. Not only do I love this creature the same as any other mother loves her child, but I love her more. Having a child with special needs, a child with a chronic, life threatening disease has taught me how to live. My child has given me the best gift second to the gift of being her mother: the gift to truly appreciate life. To stop in the moment and take it all in. To stop worrying about the silly things.
Today Ojaio and I went to the beach. Yes, the beach in January. It was a beautiful day, at least 75 degrees with no breeze allowing me to bask in the So Cal sun wearing only a tank top and cuffed jeans. We had a picnic and Ojaio made sand angels and sand castles and chased after the seagulls and the pigeons. Her curious eyes followed the lifeguard in his truck with concern until he was out of sight. I just laid on the blanket watching her the entire time. I couldn't take my eyes off of her. Admiring her beauty, her contagious smile, her curiosity. She has a beauty that's raw and wild.
Sometimes I feel like I'm high. Really. Since having Ojaio in my life, it seems as though all of my senses have been heightened.
For me, life stands still. I often catch myself smiling in a daze while staring at my girl.
Sure, having a child with CF is a lot of work. More often than not my life is very serious and there's a lot of pressure to get everything done every day. I've seen my 5'6" frame weigh only 103 pounds due to stress and depression. At times I torture my heart and my mind with the what-ifs of Ojaio's future, and some nights I have to shut myself in the bathroom while I try to calm and quiet a gut wrenching cry usually stemming from the feeling of "it's just not fair".
But most of the time it isn't that way. By now I've gotten used to the extra work and the nighttime-cries have been coming fewer and farther between. It's more than likely you'll find me feeling high nowadays (not literally, I promise!).
Before I finish up this post I'll leave you with one more memory...
You know when someone's expecting and you ask them, "So, do you want a girl or a boy?" Then they reply with, "I don't care, as long as it's healthy." Well once, after having Ojaio, I asked a coworkers husband this question. He of course responded with, "I don't care, as long as the baby's heal... uh," he stopped. It was obvious that he remembered he was speaking with Ojaio's mother. I then added, "Yes, healthy is a good thing!" Talk about awkward.
It's true though. Everyone wants their baby to be healthy. It would be cruel to want otherwise. However, it has been my experience that an unhealthy child or a child with special needs isn't doom, it's just different.
Tuesday, December 29, 2009
My kid is so cool.
I really wanted to get into a good, regular blogging habit. But then Christmas and work and bills and husband on vacation and child and child with runny nose and new years and.....you know. So this is all you get. No witty words (not that I ever consider my words to be witty), because who needs words when you have this?
Yes, she has a wand tucked into her tights. And yes that is a pink breast cancer awareness cape tied around her neck, falling between her wings.
My kid is so cool.
Yes, she has a wand tucked into her tights. And yes that is a pink breast cancer awareness cape tied around her neck, falling between her wings.
My kid is so cool.
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