I just finished reading the book "Alex: Life of a Child" by Frank DeFord. It's a work of non-fiction by an author whose daughter passed away at age 8, from CF.
Although the book thoroughly depressed me- Todd tried to read it, he reached about page 2 and gave up, he was to sad to go on - it also was a huge slap of reality for me. I guess, because Hayden "looks" so healthy right now, I had forgotten about the seriousness of his illness. The book reminded me that CF is a progressive disease, that Hayden will never get any better, he can only get worse. I'm so terrified for my little boy. Right now, his whole life depends on the treatments that Todd and I give him. His LIFE, and the length of it, is totally in our hands. It may happen that he will live to be 50-something, but there is also a chance that his health could suddenly take a turn early on in life.
Every parent has the fear that they will outlive their child, the fear of losing them to a car accident or some other freak incident. The hardest part is not knowing whether or not it will happen. When Hayden was diagnosed, I felt that he was given a sort of death sentence. I know he will not live to be an old man (unless they find a cure or a miracle drug!), I know that he may have to endure a lung transplant at some point in his life, I know that he may not be able to have kids, and I know that he is going to suffer from a lot of pain in his life, and as a parent, it kills me inside.
My biggest wish for him, besides a cure, is that I could take the pain away, just rip the CF right out of his body, throw it in the incinerator...gone for good. I know that, in reality, this can't happen- so for now, I will pray - something that is awkward for me, but hey, I'm willing to overcome that for the sake of my baby. I will pray for a cure to come soon. I will pray for him to outlive me, for our family to be a whole, loving unit. I will pray that he can beat the odds and this nasty disease that he harbors. And last but not least, I will pray that he knows and understands how much his family loves him, that we never wished this horrible thing upon him, and that maybe, possibly, through his illness, he can teach the world, or even just a few people, the value of life and love for one another ....the REAL important things about living.
P. Sunshine
My Flickr Fotos
Monday, August 29, 2005
Tuesday, August 23, 2005
and another thing...
I can't believe I left out the part about baby H. saying "mama"! He said it the other day when we were in the car. I was floored, and so was the 4 year-old. Now baby H. says mama mama mama all the time. I'm so proud (even if he is just making noise indiscriminately)!!!
UPDATE!
I can't believe this is happening to me, I knew it would, it's inevitable, I just assumed it would be later in life, but here it is, happening now. At 6 1/2 months, baby H., the one that I thought would be BEHIND in the game, is CRAWLING!!!!!!!!!
I forgot how quick those little rugrats can get once they start to be mobile. Todd and I had gotten lazy, and have neglected to utilize our shelf-space. How quickly we are learning to put the phone books, computer wires and various broken- objects- in- the -midst- of- repair up up and away from baby H.'s reach.
The vacuum cleaner is also constantly in use. I once placed H. on the floor in the dining room and during the millisecond that I turned around, he had managed to find the one tiny piece of pretzel that had fallen on the floor (leftover from Todd's poker party no doubt) and had it dangling just outside his gaping mouth. Supermama's bionic arm quickly snatched that from his grasp. I can't complain, though, I'm getting exercize!
In other news, Todd and I have decided to put our house up for sale. We're searching for houses in the Eastown or Mulick Park area or somewhere else if it's cool and close to neat things. ...and safe, of course.
With our current life's schedule, we have discovered that we need a smaller house, smaller yard, smaller heating bills and a smaller mortgage! So here we go again, on the oh, so enlightening journey that is the buying and selling of houses. Wish us luck, we'll need it!
I forgot how quick those little rugrats can get once they start to be mobile. Todd and I had gotten lazy, and have neglected to utilize our shelf-space. How quickly we are learning to put the phone books, computer wires and various broken- objects- in- the -midst- of- repair up up and away from baby H.'s reach.
The vacuum cleaner is also constantly in use. I once placed H. on the floor in the dining room and during the millisecond that I turned around, he had managed to find the one tiny piece of pretzel that had fallen on the floor (leftover from Todd's poker party no doubt) and had it dangling just outside his gaping mouth. Supermama's bionic arm quickly snatched that from his grasp. I can't complain, though, I'm getting exercize!
In other news, Todd and I have decided to put our house up for sale. We're searching for houses in the Eastown or Mulick Park area or somewhere else if it's cool and close to neat things. ...and safe, of course.
With our current life's schedule, we have discovered that we need a smaller house, smaller yard, smaller heating bills and a smaller mortgage! So here we go again, on the oh, so enlightening journey that is the buying and selling of houses. Wish us luck, we'll need it!
Thursday, August 18, 2005
I'm cured!
There's nothing like laughter to kick a streak of the blues. My coworker Melissa and I found ourselves on a big fat laugh track this morning, and couldn't (or wouldn't?) get off. I don't even know what sparked the craziness, but we both fell into the giggle trap simultaneously. Man, was that fun (and NEEDED!) I feel better now.
Sunday, August 14, 2005
Saturday, August 13, 2005
4 year-old's self-portrait
He is a true artistic genius ( in his mama's eyes)He even added the stripes in the shirt. Someday he'll buy me a pool.
Friday, August 12, 2005
drowning in tears
I'm having a hard time keeping it together today. Every little thing is setting me off. I really hope it's PMS because that will pass. I'd hate to have to start therapy again - no time or cashflow for that. It's so embarassing when the tears start a-flowing at work, I have to pretend that I have allergies because the minute someone asks me what's wrong, and acknowledges the fact that i can't contain my emotions, the dam in my head releases and out comes the waterfall .
It's very difficult being a woman who works with a bunch of men, they don't understand the female mood pendulum - at home, it's the same, I'm surrounded by maleness. Luckily, I live with men that are less afraid to show their feelings than the stereotypical male - my older son is very receptive to human emotions. He's the first one to come running with a hug or a pat on the back when we are hurt or sad. My husband is not afraid to cry, either, and with those deep, blue (& one green) ocean-like eyes, you can't help but get drawn in and want to swim in and out of his sadness.
Sometimes I like to take long drives with the music blaring, to sort of "purge" the tears out. Perhaps I will do that today. Coldplay is always a helper on that front. I'm also getting my hair cut today for the first time in quite a while. The last time I sat in the chair was 2 days before Hayden went into the hospital. Here's hoping I don't lose it in the salon when the hair stylist asks me how he's doing. She has no idea what sort of can she'll be opening with that one!
Ahhhh, writing all this down has made me feel better. Thanks!!!!
It's very difficult being a woman who works with a bunch of men, they don't understand the female mood pendulum - at home, it's the same, I'm surrounded by maleness. Luckily, I live with men that are less afraid to show their feelings than the stereotypical male - my older son is very receptive to human emotions. He's the first one to come running with a hug or a pat on the back when we are hurt or sad. My husband is not afraid to cry, either, and with those deep, blue (& one green) ocean-like eyes, you can't help but get drawn in and want to swim in and out of his sadness.
Sometimes I like to take long drives with the music blaring, to sort of "purge" the tears out. Perhaps I will do that today. Coldplay is always a helper on that front. I'm also getting my hair cut today for the first time in quite a while. The last time I sat in the chair was 2 days before Hayden went into the hospital. Here's hoping I don't lose it in the salon when the hair stylist asks me how he's doing. She has no idea what sort of can she'll be opening with that one!
Ahhhh, writing all this down has made me feel better. Thanks!!!!
Thursday, August 11, 2005
THe nose knows
Currently reading: Drop City
Of all the things to be depressed about, this seems very trite - I wanted to update my picture for my blogs, so I took about 50 pictures of myself last night and not one was good. Not because they weren't clear or had a good composition, but because of my huge obnoxious nose that does not fit on my face. All I could see in the pictures was nose, nose and more nose. So that's it! I am getting it fixed.
Right now we are in a financial pinch, but I am determined to find a way to raise funds for this cause. I've wantred a different nose since I was about seven, and as you know, that particular feature, like our ears, only gets bigger as we age. I can't afford it, but it's got to be done.
There have been studies and field tests done on the way that attractive people get treated as apposed to the unattractive. It was found that people who have a nice face get farther in their careers, get more offers, and are generally treated better than those with not-so-pretty looks. I have a bit of social anxiety, and most of it is due to the fact that I am constantly afraid of what people are thinking of me and my uneven facial features. I ruin family and friend's pictures with my mug. One of my high school friends was mad because I made a "devil face" in her prom pictures - but i wasn't making a face, that is just the way I am! When someone has a camera, I duck and run for cover. I wouldn't want to break it.
My husband says that if we had the money for surgery, it should go to him since he has a body part that he doesn't like. He doesn't understand that the face cannot be covered by clothing, the face is the first thing people see when they meet you, the first thing on which judgement is passed. HE doesn't understand, because he has perfect facial features!! I want a new nose so that I can feel comfortable around people, and to feel less judged. Either that or we can move to a country where big noses are a sign of prestige, yeah, that'd do it!
Maybe I'm just having a PMS ramble - we'll see in a couple days. For now, if you see a tall white chick walking around town with a scarf over her face, don't be afraid- it's me!
Of all the things to be depressed about, this seems very trite - I wanted to update my picture for my blogs, so I took about 50 pictures of myself last night and not one was good. Not because they weren't clear or had a good composition, but because of my huge obnoxious nose that does not fit on my face. All I could see in the pictures was nose, nose and more nose. So that's it! I am getting it fixed.
Right now we are in a financial pinch, but I am determined to find a way to raise funds for this cause. I've wantred a different nose since I was about seven, and as you know, that particular feature, like our ears, only gets bigger as we age. I can't afford it, but it's got to be done.
There have been studies and field tests done on the way that attractive people get treated as apposed to the unattractive. It was found that people who have a nice face get farther in their careers, get more offers, and are generally treated better than those with not-so-pretty looks. I have a bit of social anxiety, and most of it is due to the fact that I am constantly afraid of what people are thinking of me and my uneven facial features. I ruin family and friend's pictures with my mug. One of my high school friends was mad because I made a "devil face" in her prom pictures - but i wasn't making a face, that is just the way I am! When someone has a camera, I duck and run for cover. I wouldn't want to break it.
My husband says that if we had the money for surgery, it should go to him since he has a body part that he doesn't like. He doesn't understand that the face cannot be covered by clothing, the face is the first thing people see when they meet you, the first thing on which judgement is passed. HE doesn't understand, because he has perfect facial features!! I want a new nose so that I can feel comfortable around people, and to feel less judged. Either that or we can move to a country where big noses are a sign of prestige, yeah, that'd do it!
Maybe I'm just having a PMS ramble - we'll see in a couple days. For now, if you see a tall white chick walking around town with a scarf over her face, don't be afraid- it's me!
Saturday, August 06, 2005
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