Last weekend we drove to Big Bear and went camping. After a long drive up the mountain, we found a very cool place to hike. After getting out of the car and walking up the hill, Froggy said, "We've arrived at our destiny!"
After dinner the other night, we stopped at a store for coffee. Froggy found saw a toy, picked it up and said, "Well that got caught in my eye!" I think she meant, 'that caught my eye.' But I like her expression better. Very visceral.
Froggy is really picking up on wordplay and puns. I couldn't be more proud! The other day she put a slinky on her arm and said, "It's armor! Get it? Arm--or?" Yeah, we got it kiddo!
A bedtime conversation:
Me: Froggy, it's time for bed.
Froggy: Really Mom, really? I expected more from you!
Sissysnuggiekins (Froggy's sister) is a model now. She's been traveling around the world and has become quite successful. While talking to Froggy's Grandma, I asked her where Sissysnuggiekins was. Froggy picked up on the conversation and said, "New York, Paris, Hamsterdam?" Hamsterdam!
While drinking a diet ginger ale the other day, Froggy asked if she could have a sip. I said, "No, it's not good for kids, it's diet." Froggy replied, "Is it called die-et, cause you die from it?" Yikes, didn't really want to have the aspertame conversation. Maybe she's onto something.
While at Big Bear, we walked into a very cool toy story. Froggy walked in and immediately found a big bin of stuffed animals. She already has a million, and I am not keen on buying her more. She found a meer cat and asked if I would buy it for her. When I replied 'no' she said, "So we came here for nothing!" The woman who owned the store almost peed her pants.
Tuesday, August 30, 2011
Friday, August 12, 2011
She's ALIVE!!!
It's been a while since I've spilled my guts.
Sometimes when writing, I think about the bloody visual of words; guts exposed, an open rib cage on a table, a disgusting but honest display of our insides; the innards of a person; a life, a marriage, a divorce.
I see a surgery where parts are taken out and placed in a kidney-shaped pan. Scissors and clamps are passed around, quiet murmurs of 'hand me this' and 'hand me that,' with some blame and bleeding, but in the end, the patient taking in new breath. Chest rising and falling. Day after day. Because it's necessary.
Sometimes when writing, I think about the bloody visual of words; guts exposed, an open rib cage on a table, a disgusting but honest display of our insides; the innards of a person; a life, a marriage, a divorce.
I see a surgery where parts are taken out and placed in a kidney-shaped pan. Scissors and clamps are passed around, quiet murmurs of 'hand me this' and 'hand me that,' with some blame and bleeding, but in the end, the patient taking in new breath. Chest rising and falling. Day after day. Because it's necessary.
Catgut sews up the wounds of a sentence, piecing together the fragments of a paragraph, a life. And somehow, somehow when I look down at the table of all the pieces apart, a person suspended above their own surgery, the body dissected, I see the whole story.
Words thrown into the air - a Scrabble game knocked over, letters falling to the floor, forming a jabberwocky that suddenly makes sense. And I know.
What took place in the subtext of our anatomy, what fell apart.
Organs starved of oxygen. Pieces, although scattered, are still alive, red, beating, In a new body, a new life. Miraculously, the patient survives.
For the first time. In a long time. I am excited. To wake up. To take in a deep breath of this new life. Whole, pink and thriving.
Words thrown into the air - a Scrabble game knocked over, letters falling to the floor, forming a jabberwocky that suddenly makes sense. And I know.
What took place in the subtext of our anatomy, what fell apart.
Organs starved of oxygen. Pieces, although scattered, are still alive, red, beating, In a new body, a new life. Miraculously, the patient survives.
For the first time. In a long time. I am excited. To wake up. To take in a deep breath of this new life. Whole, pink and thriving.
Tuesday, August 02, 2011
Neurology Update
Froggy's neurologist called and said that indeed her EEG was normal. I was so happy that I forgot to be angry about how they screwed up and thought it wasn't. Apparently she had 'normal' spikes on the EEG because of the type of sleep she was in. They were higher than normal brain waves, but it was normal for sleep cycle. So, we can start tapering off her seizure meds. So from good news to bad news, back to good news again - tis never a dull moment.
Monday, July 25, 2011
CF Clinic Appointment
Froggy had her CF appointment on Friday. Our new hospital is WONDERFUL! They are very aggressive and want to do a bronchoscopy and GI scope. Because Froggy cultured pseudomonas and a cousin bacteria to b. cepacia (a while ago) they want to go deep into her lungs to search for bacterias that maybe hiding out and not showing up on her throat cultures. I'm not sure how I feel about it, because it is so invasive and they need to use general anesthesia. But I also feel like this clinic has a genuine interest in Froggy's well-being that I never felt with our old clinic. It will take a week or two before we receive the results of her latest throat swab and blood panel, so wish us luck on both of those! She also has a CT scan this Thursday to check out her lungs and sinuses.
Froggy rocked her PFT's and scored a 112% on her FEV1, 107 on her FVC (full volume capacity), and she weighs 40lbs and is 44 1/4 inches. We need to increase her weight a little, so we may add some bolus feeds in the day. But for now, we'll stick with what we've been doing.
In other health news, Froggy had an EEG a few weeks ago. Her neurologist was out of town so another neurologist called to tell me the results were normal. But tonight her regular neurologist emailed saying that her EEG was abnormal, so he doesn't want to decrease her meds. I'm crushed because I thought her seizure disorder was on it's way out. I'll know more tomorrow and hopefully and we can figure out what's going on.
A lot is happening with Froggy, even though she is thriving and healthy and doing great, we will always be awaiting tests. But I think that is the personality of Cystic Fibrosis, even when things are going well, there will always be something lurking in the shadows. It is the nature of this beast. But for now she is healthy, super active, enjoying gymnastics camp, and having a fabulous summer. So no complaints. She's happy, healthy and loving life. What else is there?
Froggy rocked her PFT's and scored a 112% on her FEV1, 107 on her FVC (full volume capacity), and she weighs 40lbs and is 44 1/4 inches. We need to increase her weight a little, so we may add some bolus feeds in the day. But for now, we'll stick with what we've been doing.
In other health news, Froggy had an EEG a few weeks ago. Her neurologist was out of town so another neurologist called to tell me the results were normal. But tonight her regular neurologist emailed saying that her EEG was abnormal, so he doesn't want to decrease her meds. I'm crushed because I thought her seizure disorder was on it's way out. I'll know more tomorrow and hopefully and we can figure out what's going on.
A lot is happening with Froggy, even though she is thriving and healthy and doing great, we will always be awaiting tests. But I think that is the personality of Cystic Fibrosis, even when things are going well, there will always be something lurking in the shadows. It is the nature of this beast. But for now she is healthy, super active, enjoying gymnastics camp, and having a fabulous summer. So no complaints. She's happy, healthy and loving life. What else is there?
Sunday, June 19, 2011
Froggy Goes Surfing
Pro-surfer giving Froggy some advice.
They said that she should go out like a queen!
So she did!
The Mauli Ola Foundation is a non-profit foundation where professional surfers donate their time and expertise to teach kiddos with CF how to surf. Salt water and swimming are incredible respiratory treatments to help loosen mucus in the lungs. These pro-surfers fly in from Hawaii and all over the US, to teach kiddos like Froggy how to surf. It was very touching to see these "dudes" get so emotionally invested.Froggy surfed her very first time trying. The water was chilly and she got some salt water up the nose, so she wasn't too thrilled at the end. But she did great, and we were so proud of her!!!
Friday, June 10, 2011
Funny, Fabulous, Froggyisms
Froggy shows me her stuffed animal shark and says:
Froggy: You can tell it's a shark by it's extra fin.
And then she looks at me like she's not sure I'll understand, but goes ahead anyway.
Froggy: It's called a dorsal fin.
We haven't been to Iowa in a while, evident by this next question:
Froggy: Does pork come from a porcupine?
And the other day on our walk to the car, this was our conversation:
Froggy: I wish I was a dingo so I could eat animals.
Froggymama: You eat animals.
Froggy: I eat ants.
Froggymama: No you don't.
Froggy: Yes, I do. Everyone does.
Froggymama: Your friend Beeman doesn't.
Froggy: Of course not! He's a vegetarian.
And some great Confucius Froggyisms:
Froggy: We're not the type of people who litter.
and
Froggy: I'll wear my bathing suit to the sun.
and
Froggy: I wonder what's really on the dark side of the moon?
On a hike the other day, Froggy takes two sticks and swings them in the air and said...
Froggy: I'm conducting nature.
When I told Froggy we would see her friend Mr. O the next day, she said:
Froggy: We can't see Mr. O. tomorrow because I will be busy making evil plans.
I'll leave you with that.
Froggy: You can tell it's a shark by it's extra fin.
And then she looks at me like she's not sure I'll understand, but goes ahead anyway.
Froggy: It's called a dorsal fin.
We haven't been to Iowa in a while, evident by this next question:
Froggy: Does pork come from a porcupine?
And the other day on our walk to the car, this was our conversation:
Froggy: I wish I was a dingo so I could eat animals.
Froggymama: You eat animals.
Froggy: I eat ants.
Froggymama: No you don't.
Froggy: Yes, I do. Everyone does.
Froggymama: Your friend Beeman doesn't.
Froggy: Of course not! He's a vegetarian.
And some great Confucius Froggyisms:
Froggy: We're not the type of people who litter.
and
Froggy: I'll wear my bathing suit to the sun.
and
Froggy: I wonder what's really on the dark side of the moon?
On a hike the other day, Froggy takes two sticks and swings them in the air and said...
Froggy: I'm conducting nature.
When I told Froggy we would see her friend Mr. O the next day, she said:
Froggy: We can't see Mr. O. tomorrow because I will be busy making evil plans.
I'll leave you with that.
Saturday, May 28, 2011
Where Have You Been Froggymama?
In Topanga, climbing mountains.
Searching for WILD things.
Rock climbing with good friends and Buddy!
Enjoying the view.
Swimming, like a frog of course.
Hunting for Easter Eggs
In her Easter dress that she picked out. Can you say Fancy Frog?
Eating lots of candy.
Finding tons of Easter eggs
Posing.
This Easter Egg stuff is serious business.
Getting lots of snuggles from Daddy.
No time for kisses, must...find...more...eggs!
Found a secret garden.
Opened up treasures.
Raised money for the cure.
Swam in the ocean.
It was too cold for mommy. She's a wimp, says the Frog.
And sported very cool Froggy goggles.So as you can see, we've been a bit busy. I wrote a script, fundraised, and have been entertaining a very busy little tadpole. Life is good.
Friday, April 15, 2011
Monday, March 14, 2011
Froggyisms
I have been terrible lately about writing down Froggyisms.
A week ago on a hike Froggy ran down a hill and said, "Go for it Mother Nature!"
When we came to a grassy clearing, she said, "It's so bright it looks like we're in a cartoon." And it did. After the rains, the greens were almost neon and surreal. It was one of the best hikes we've ever had. She's at this incredible age where she wants to know EVERYTHING. And now that I own a smartphone Mommy can google all of her questions! And I appear much smarter than I actually am.
Today while reading some of the tsunami news on my computer while doing Froggy's treatment, she saw a photo of the earth from space, and quipped, "Do earth cameras work in outer space?" I told her they probably have special cameras that can take photos of things from far away in great detail. To which she replied, "Can we get one?" Yeah honey, let's put space camera on your birthday wish list.
A week ago on a hike Froggy ran down a hill and said, "Go for it Mother Nature!"
When we came to a grassy clearing, she said, "It's so bright it looks like we're in a cartoon." And it did. After the rains, the greens were almost neon and surreal. It was one of the best hikes we've ever had. She's at this incredible age where she wants to know EVERYTHING. And now that I own a smartphone Mommy can google all of her questions! And I appear much smarter than I actually am.
Today while reading some of the tsunami news on my computer while doing Froggy's treatment, she saw a photo of the earth from space, and quipped, "Do earth cameras work in outer space?" I told her they probably have special cameras that can take photos of things from far away in great detail. To which she replied, "Can we get one?" Yeah honey, let's put space camera on your birthday wish list.
Sunday, March 06, 2011
Sunday, February 27, 2011
Dirty Laundry
I have written 50 blog posts I can't publish.
I can write about being a mom, I can write about CF, about Froggy, about being a writer, about Los Angeles, about a million things. But I can't write about the big D. How could I write about that without hanging our dirty laundry on the cyberspace line?
And yet it encompasses so much of our lives. It is our everyday, our new life, yet it mostly remains private. We have to keep up appearances and pretend that a family didn't really break up, that everyone is still whole. That a child isn't in the middle. Because that would be embarrassing. So we'll smile and nod and just hop over that great chasm that is... well you know.
I can say that I'm tired, disheartened, frustrated, over-worked and angry.
The other day I heard a quote that made the hair on the back of my neck stand up:
"Anger is like drinking poison and expecting the other person to die."
Every day I drink this poison, when I come home to dirty dishes, a list of calls, a stack of bills, a dusty house and there is no partner, no one at 9pm when the dog needs to go out and the clothes are in the machine downstairs, and I still have nebulizers to boil, meds to prepare, and all I want to do is say, "Someone else do it!"
Someone else get up in the middle of the night, someone else wake up to the dog and the cats and the kid, just for one day." And when I do ask for help, there is instant regret. Because the repercussions of entitlement, apathy, or passive aggressiveness are worse than just doing it myself. Okay, maybe a little dirty laundry. Just a bra or sock. What do you expect?
When I ask for help it's what a mom must feel like when she asks her teenager to clean her room. Clothes shoved under the rug, a naked mattress, and a moldy cheese sandwich in the closet. The bare minimum, just enough to say, "I did what you asked, geeeeez." But it never resembles actual help. And ultimately, I come in, rake the clothes out from under the rug, put the sheets on the mattress, and throw away the moldy cheese sandwich.
And then I find myself chugging poison like it's red kool-aid in a South American cult. Because asking for help and getting half-ass is worse than nothing. It looks like help, it smells like help. But it isn't help. It's the cardboard cut-out of help.
Every night I go to bed with the weight of the world on my shoulders. Ultimately, realistically I am responsible for Froggy. What doctors she sees, what school she attends, if her clothes are clean, if she's had her meds, if her bed is made, prescriptions called in, if her teeth are brushed. It's up to me. And it's tough and it's even tougher keeping it to myself. So I'm sorry if I threw in a sheet or two, a towel from the hamper. But you should've seen the other 50 posts.
I can write about being a mom, I can write about CF, about Froggy, about being a writer, about Los Angeles, about a million things. But I can't write about the big D. How could I write about that without hanging our dirty laundry on the cyberspace line?
And yet it encompasses so much of our lives. It is our everyday, our new life, yet it mostly remains private. We have to keep up appearances and pretend that a family didn't really break up, that everyone is still whole. That a child isn't in the middle. Because that would be embarrassing. So we'll smile and nod and just hop over that great chasm that is... well you know.
I can say that I'm tired, disheartened, frustrated, over-worked and angry.
The other day I heard a quote that made the hair on the back of my neck stand up:
"Anger is like drinking poison and expecting the other person to die."
Every day I drink this poison, when I come home to dirty dishes, a list of calls, a stack of bills, a dusty house and there is no partner, no one at 9pm when the dog needs to go out and the clothes are in the machine downstairs, and I still have nebulizers to boil, meds to prepare, and all I want to do is say, "Someone else do it!"
Someone else get up in the middle of the night, someone else wake up to the dog and the cats and the kid, just for one day." And when I do ask for help, there is instant regret. Because the repercussions of entitlement, apathy, or passive aggressiveness are worse than just doing it myself. Okay, maybe a little dirty laundry. Just a bra or sock. What do you expect?
When I ask for help it's what a mom must feel like when she asks her teenager to clean her room. Clothes shoved under the rug, a naked mattress, and a moldy cheese sandwich in the closet. The bare minimum, just enough to say, "I did what you asked, geeeeez." But it never resembles actual help. And ultimately, I come in, rake the clothes out from under the rug, put the sheets on the mattress, and throw away the moldy cheese sandwich.
And then I find myself chugging poison like it's red kool-aid in a South American cult. Because asking for help and getting half-ass is worse than nothing. It looks like help, it smells like help. But it isn't help. It's the cardboard cut-out of help.
Every night I go to bed with the weight of the world on my shoulders. Ultimately, realistically I am responsible for Froggy. What doctors she sees, what school she attends, if her clothes are clean, if she's had her meds, if her bed is made, prescriptions called in, if her teeth are brushed. It's up to me. And it's tough and it's even tougher keeping it to myself. So I'm sorry if I threw in a sheet or two, a towel from the hamper. But you should've seen the other 50 posts.
Monday, January 31, 2011
Books Read 2010
Memoir
Sixty Five Roses - A Sister's Memoir - by Heather Summerhayes Cariou - incredible book about a family dealing with CF. Told from the sister's POV. It was tough to get through emotionally, but the parents were incredible. Their devotion and endurance was something I will never forget. Not sure I will ever live up to their tireless dedication.
The Kid - by Dan Savage - Hilarious memoir about a man and his partner going through the trials and tribulations of an open adoption. David Sedaris has nothing on Dan Savage. It was laugh-out-loud, pee your pants funny and then cry a little kind of book. Not for the faint of heart, so if you're even the slightest homophobic, don't read, and yet, maybe you should.
Non-fiction
Parenting Children With Health Issues - by Foster Cline and Lisa Greene - I have to re-read this one. It had fabulous advice for kiddos struggling with treatments and the emotional junk that goes along with CF. It stresses how important natural consequences are and if you protect your child from consequences you're not protecting them, you're robbing them of experience. Loved this book. I hope to live up to it. Not only will I no longer protect my kid from her consequences, but I'll never protect anyone else. This book goes to the heart of the 'enabler,' and says, "knock it off!" Lesson learned.
When Everything Changed - The Amazing Journey of American Women From 1960-the Present - by Gail Collins - Wow, this book taught me that I learned nothing in school or college. And I took a ton of women's lit, feminism classes, but still learned so little about the actual history of women... what a great book about how far we've come, and how far we have to go. Even in the 1970's a woman who paid a parking ticket dressed in pants was sent to jail for not wearing a dress! I am so thankful for the brave women who paved the way for jeans, my job and freedom!
Too Much Happiness - by Alice Munro - Okay, I appreciate the art of the short story. It is one of the most difficult literary forms. But I've found most compilations too easy to put down, unlike a novel. Not so with this one. I read it during Froggy's treatments, doing dishes, walking down the hall. It was beautiful, impossible to put down, one of my all time favorites! Thanks Grandma W. for this wonderful gift.
The History of Love - by Nicole Krauss - Go, buy, read. My favorite novel this year. Lovely storytelling, interesting characters and a whole lotta lovin'. This was the first book since The Shadow of the Wind that it actually hurt to reach the last page.
One Good Turn - by Kate Atkinson - I know everyone is coo-koo for The Girl With the Dragon Tattoo, and I am too. But Kate Atkinson is underrated. Her mysteries are fantastic.
Research for Work:
State of War - The secret History of the CIA and the Bush Administration, by James Rise
Vice: Dick Cheney the Hijacking of the American President by Lou Doose and Jake Bernstein
Bush at War by Bob Woodward
What Happened: Inside the Bush Administration and Washington Culture of Deception by Scott McClellan
Cheney: The Untold Story of America's Most Powerful and Controversial Vice President, by Stephen F. Hayes
No comment. I have enough problems. :)
Sixty Five Roses - A Sister's Memoir - by Heather Summerhayes Cariou - incredible book about a family dealing with CF. Told from the sister's POV. It was tough to get through emotionally, but the parents were incredible. Their devotion and endurance was something I will never forget. Not sure I will ever live up to their tireless dedication.
The Kid - by Dan Savage - Hilarious memoir about a man and his partner going through the trials and tribulations of an open adoption. David Sedaris has nothing on Dan Savage. It was laugh-out-loud, pee your pants funny and then cry a little kind of book. Not for the faint of heart, so if you're even the slightest homophobic, don't read, and yet, maybe you should.
Non-fiction
Parenting Children With Health Issues - by Foster Cline and Lisa Greene - I have to re-read this one. It had fabulous advice for kiddos struggling with treatments and the emotional junk that goes along with CF. It stresses how important natural consequences are and if you protect your child from consequences you're not protecting them, you're robbing them of experience. Loved this book. I hope to live up to it. Not only will I no longer protect my kid from her consequences, but I'll never protect anyone else. This book goes to the heart of the 'enabler,' and says, "knock it off!" Lesson learned.
When Everything Changed - The Amazing Journey of American Women From 1960-the Present - by Gail Collins - Wow, this book taught me that I learned nothing in school or college. And I took a ton of women's lit, feminism classes, but still learned so little about the actual history of women... what a great book about how far we've come, and how far we have to go. Even in the 1970's a woman who paid a parking ticket dressed in pants was sent to jail for not wearing a dress! I am so thankful for the brave women who paved the way for jeans, my job and freedom!
The Good Divorce - by Constance Ahrons - You mean I'm not an evil woman going to hell for getting a divorce? Whew. This book was incredibly insightful and helpful about the horrible process of divorce. It sucks by the way, the process, not the book.
Stiff - the Curious Lives of Human Cadavors by Mary Roach - A good book to follow The Good Divorce. Anyway, I'm always keen on the macabre, and this one takes the decomposing cake. A fascinating read on what happens after. Surprisingly funny.
A Case for Creation - by Lee Strobel - I've been meaning to write this play about a man who becomes born again, but three years later I'm still doing the research, anyway.... This was a very interesting book about the miracle of life. It doesn't matter which side you stand on, creation vs. evolution or a combo of the two, how we came to exist is fascinating.
Stranger Danger - How to Keep Your Child Safe by Carol Soret Cope - A great book to keep your kiddo safe.
Short Story Collection
Too Much Happiness - by Alice Munro - Okay, I appreciate the art of the short story. It is one of the most difficult literary forms. But I've found most compilations too easy to put down, unlike a novel. Not so with this one. I read it during Froggy's treatments, doing dishes, walking down the hall. It was beautiful, impossible to put down, one of my all time favorites! Thanks Grandma W. for this wonderful gift.
Bad Dirt - by Annie Proulx - Another incredible book of short stories. Beautiful, dark, stark, simple.
Fiction
The Lacuna - by Barbara Kingsolver - I've read just about everything Ms. Kingsolver has written. She is a master storyteller. Love, love, love her.
Dear American Airlines - by Jonathan Miles - Very funny book about a father stranded in an airport on his way to his estranged daughter's wedding. What begins as a complaint letter, ends as a life confession that is a wild, funny, meaningful ride.
Away - by Amy Bloom - Very enjoyable novel.
A Separate Peace - by John Knowles - Pretaay good.The History of Love - by Nicole Krauss - Go, buy, read. My favorite novel this year. Lovely storytelling, interesting characters and a whole lotta lovin'. This was the first book since The Shadow of the Wind that it actually hurt to reach the last page.
One Good Turn - by Kate Atkinson - I know everyone is coo-koo for The Girl With the Dragon Tattoo, and I am too. But Kate Atkinson is underrated. Her mysteries are fantastic.
Little Bee - by Chris Cleave - Just okay. Loved the first half, but it lost it's fizzle and believability in the second half.
A Visit from the Goon Squad - by Jennifer Egan - I didn't expect to love this book about a band and it's players as they aged. But it was suprising, funny and the only novel I've read that in one chapter took you on an African Safari and the next, a lesson in powerpoint.Research for Work:
State of War - The secret History of the CIA and the Bush Administration, by James Rise
Vice: Dick Cheney the Hijacking of the American President by Lou Doose and Jake Bernstein
Bush at War by Bob Woodward
What Happened: Inside the Bush Administration and Washington Culture of Deception by Scott McClellan
Cheney: The Untold Story of America's Most Powerful and Controversial Vice President, by Stephen F. Hayes
No comment. I have enough problems. :)
Wednesday, January 12, 2011
I'm kind of over it.
How it's supposed to be. I don't really care anymore how it was supposed to be. Had things been perfect, had Froggy not been born with CF, had our marriage lasted, had things turned out the way you hope it will in the beginning .... when you're standing in a room full of family and friends in a white dress and everything is ahead of you. And it is all hope from that moment on.
As Madeleine says to the tiger, in Froggy's favorite movie, "poo poo."
This best laid plan went awry, and guess what? Oh well.
I love my kid. I love being alone. The work, the time involved, the responsibility I have is overwhelming, but at the end of the day I think this: I live in Los Angeles, where it is perpetually 70 degrees. I have friends that if you looked up the definition of the word in the dictionary you would find their pictures, smiling and asking, "what can I do?" My family although far away supports us in a million loving ways.
We are not hungry. We are free. We are able to live our lives without the threat of malaria or warfare, without poverty or destitution. My child has healthcare. And even though it is a major pain in the ass, we have it, and we are the lucky ones. We have a lovely apartment 100 feet from a park. We live two miles from the Pacific Ocean and ten miles from the mountains. I have two bosses. One is a writer, the other a director, and they are both the nicest guys in Hollywood. After every assignment or project they thank me profusely. My hard work is appreciated.
I struggle and somedays I have to repeat a very loving mantra so I don't strangle a certain someone, to 'live and let live, live and let live, live and let live," and later, I feel better and can go about my day because it is not my job to live anyone else's life. I am only accountable for me. And that took a long time and a lot of therapy to realize.
Tonight I went to a Kindergarten open house and met with the principal of Froggy's potential school. I told her that my kiddo has CF and asked questions about the nurse's schedule and their health policy. And at the end of our conversation she gave me that look that a lot of people give when I tell them my kid has CF, that "oh poor you" look. And I didn't want it. Defensively I said, "Froggy is totally healthy, I just want to make sure she stays that way."
There is such a fine line between pity and empathy. It's only distinguishable by moms of kids who have 'special health needs.' On one hand you want people to take your child's healthcare seriously and not say stuff like, "Oh I'm sure they'll find a cure," like "I'm sure Diet Coke will come up with a more tasty formula." But at the same time, you don't want that LOOK, that "Sweet Jesus, you're child is dying, how do you cope? I'm so glad my child is healthy, but I feel guilty, so I'm just going to stare at you with major sympathy," look. We all know that look because we know how we would look at someone had our best laid plan actually happened.
I could scream a million times a day to people who don't get it, who don't know how lucky they are, I could say, "Your kids are healthy, why, why are you bitching about how it took your Pediatrician 35 minutes before they saw you, when we are at the doctors office for 7 hours!" And I bite my tongue because I know that when I complain about our hospital or PFT's or CF stuff, someone with CF in their 20's or 30's, who has had a transplant or two, who has lived through and survived the darkest hour is saying the same thing to me, "Who cares that she spent 7 hours at the CF clinic, your kiddo can breathe. Enjoy these years. Because later, later, later?"
It is all perspective. It is all perspective. Everyday I must remind myself of this. It would be easy to say, "I'm a single mom of a kiddo with CF, my career is on hold, my husband left, my dreams are deferred, I don't know what will happen, poor me." But I'm over it.
I am so lucky. Not everyone has a Froggy. Being a single mom was not my plan. This was not my idea of "perfect" but who cares? There is no point to the what-if's. What-if's are for people who have the time to feel sorry for themselves. And I don't. My kiddo is five and then she's ten and then she's thirty. And I don't know what that will look like. I don't know how much time we have where she has the breath to swim and climb and play. So I don't have time for 'supposed to be.' Who cares. This is our life. Our life and it deserves to be lived. No matter how long. No matter how perfect. No matter. No matter.
How it's supposed to be. I don't really care anymore how it was supposed to be. Had things been perfect, had Froggy not been born with CF, had our marriage lasted, had things turned out the way you hope it will in the beginning .... when you're standing in a room full of family and friends in a white dress and everything is ahead of you. And it is all hope from that moment on.
As Madeleine says to the tiger, in Froggy's favorite movie, "poo poo."
This best laid plan went awry, and guess what? Oh well.
I love my kid. I love being alone. The work, the time involved, the responsibility I have is overwhelming, but at the end of the day I think this: I live in Los Angeles, where it is perpetually 70 degrees. I have friends that if you looked up the definition of the word in the dictionary you would find their pictures, smiling and asking, "what can I do?" My family although far away supports us in a million loving ways.
We are not hungry. We are free. We are able to live our lives without the threat of malaria or warfare, without poverty or destitution. My child has healthcare. And even though it is a major pain in the ass, we have it, and we are the lucky ones. We have a lovely apartment 100 feet from a park. We live two miles from the Pacific Ocean and ten miles from the mountains. I have two bosses. One is a writer, the other a director, and they are both the nicest guys in Hollywood. After every assignment or project they thank me profusely. My hard work is appreciated.
I struggle and somedays I have to repeat a very loving mantra so I don't strangle a certain someone, to 'live and let live, live and let live, live and let live," and later, I feel better and can go about my day because it is not my job to live anyone else's life. I am only accountable for me. And that took a long time and a lot of therapy to realize.
Tonight I went to a Kindergarten open house and met with the principal of Froggy's potential school. I told her that my kiddo has CF and asked questions about the nurse's schedule and their health policy. And at the end of our conversation she gave me that look that a lot of people give when I tell them my kid has CF, that "oh poor you" look. And I didn't want it. Defensively I said, "Froggy is totally healthy, I just want to make sure she stays that way."
There is such a fine line between pity and empathy. It's only distinguishable by moms of kids who have 'special health needs.' On one hand you want people to take your child's healthcare seriously and not say stuff like, "Oh I'm sure they'll find a cure," like "I'm sure Diet Coke will come up with a more tasty formula." But at the same time, you don't want that LOOK, that "Sweet Jesus, you're child is dying, how do you cope? I'm so glad my child is healthy, but I feel guilty, so I'm just going to stare at you with major sympathy," look. We all know that look because we know how we would look at someone had our best laid plan actually happened.
I could scream a million times a day to people who don't get it, who don't know how lucky they are, I could say, "Your kids are healthy, why, why are you bitching about how it took your Pediatrician 35 minutes before they saw you, when we are at the doctors office for 7 hours!" And I bite my tongue because I know that when I complain about our hospital or PFT's or CF stuff, someone with CF in their 20's or 30's, who has had a transplant or two, who has lived through and survived the darkest hour is saying the same thing to me, "Who cares that she spent 7 hours at the CF clinic, your kiddo can breathe. Enjoy these years. Because later, later, later?"
It is all perspective. It is all perspective. Everyday I must remind myself of this. It would be easy to say, "I'm a single mom of a kiddo with CF, my career is on hold, my husband left, my dreams are deferred, I don't know what will happen, poor me." But I'm over it.
I am so lucky. Not everyone has a Froggy. Being a single mom was not my plan. This was not my idea of "perfect" but who cares? There is no point to the what-if's. What-if's are for people who have the time to feel sorry for themselves. And I don't. My kiddo is five and then she's ten and then she's thirty. And I don't know what that will look like. I don't know how much time we have where she has the breath to swim and climb and play. So I don't have time for 'supposed to be.' Who cares. This is our life. Our life and it deserves to be lived. No matter how long. No matter how perfect. No matter. No matter.
Monday, January 10, 2011
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