I go back to St. David's a lot. It's the hospital where the twins were born, the place where I have had all of my cancer surgeries and the home of the Breast Cancer Resource Center. I am running there at least once a week while we plan Graphic 4: the Art Bra Fashion Show to benefit the BCRC. But that's not what this post is about.
Each time I swing around the drive to pull into the parking garage, I pass the main entrance to the hospital. And each time, almost any hour of the day, there is inevitably a new mom waiting to leave the place with a newborn infant in tow - eager to position that stupid, ungainly baby carrier in the back seat so she can sit next to it and ooh and ahh while some husband, partner or chauffeur drives them home. There are balloons, there are smiles. And each time I see this, I still cringe. It's been almost 5 years, my twins are healthy and thriving and it seems like eons ago that they were born 3 months early and so very, very ill. Evan called them little grey squirrels at just 2 lbs each. And the hardest day of my life up until now - even harder than cancer, even harder than finding out that Zelda was born blind, and perhaps rivaling the pain I felt when my Dad died - was the day I left that hospital without my newborn twins. I was so pissed off that day. I was so angry at those other happy moms.
My friends and family were wonderful. They brought food, they brought flowers but they were afraid. We were afraid. They tiptoed around the questions about the "non-perfect" children, they mourned our "loss" of an idyllic birth experience...And it was hard. It did suck. Our friends were reverent and concerned and worried about us and the babies. I loved and appreciated all of them for it despite my feelings of guilt about going into premature labor and overwhelming post-partum depression.
But the other day, I ran into a friend. He and his wife just had a baby born with Down's Syndrome. I looked at him and smiled knowingly. I asked him how she was doing, empathized over the lengthy NICU stay but most of all I said "Congratulations! I am so happy for you and your wife and your new daughter."
We are so lucky. I am so lucky to be a mom. Whatever the experience, whatever the birth, please don't ever forget to say those words...they mean more to the parents than you'll ever know...tell them "Congratulations"...
Monday, May 17, 2010
Wednesday, May 5, 2010
franglais...
So, as most of you know, the twins attend a French Immersion Montessori Preschool that we lovingly refer to as Ecole. This is year #2 and they'll be there for one more year before kindergarten. There are 3 teachers and less then 20 kids - it's a great, loving and nurturing environment. It's also funny when I tell people that's where they go to school, because then they expect Creed and Zelda to just start spitting out French. One has to remember that although the teachers only speak to the kids in French, the students are American (or at least half) and communicate effortlessly in English.
Creed and Zelda understand pretty much everything that I or their beloved teachers say to them. They answer questions and easily follow directions. They automatically respond with "Merci" and greet with "Bonjour". If I say, "Fais voir ton visage" to Zelda, she lifts her head and smiles. If I ask, "Ou sont vos chaussures?", they'll scurry to put on their shoes.
But the aspect that I am loving the most are Creed's questions, requests and interpretations. His half French/half English. His reference to particular objects only with the French word. His Franglais...
The other day, upon spilling some popcorn in the kitchen, he ran up to me and asked: "Mommy, may I have the balai?" That would be the broom. And then "How about the pelle?" Dustpan. He shook Evan awake the other day, "Daddy, I want to see your travail!" Show me your work!
And finally this morning while gathering his supplies for Ecole, "Hey, where's a grand bag?" As opposed to a petit...
Et alors, ca marche, cette histoire....It's fun to watch the way their little brains process and interpret language. It's interesting to think that they're not translating as one does when learning a language when later in school. Hopefully we'll keep doing this with them...at least until they start to complain - in French, of course.
Creed and Zelda understand pretty much everything that I or their beloved teachers say to them. They answer questions and easily follow directions. They automatically respond with "Merci" and greet with "Bonjour". If I say, "Fais voir ton visage" to Zelda, she lifts her head and smiles. If I ask, "Ou sont vos chaussures?", they'll scurry to put on their shoes.
But the aspect that I am loving the most are Creed's questions, requests and interpretations. His half French/half English. His reference to particular objects only with the French word. His Franglais...
The other day, upon spilling some popcorn in the kitchen, he ran up to me and asked: "Mommy, may I have the balai?" That would be the broom. And then "How about the pelle?" Dustpan. He shook Evan awake the other day, "Daddy, I want to see your travail!" Show me your work!
And finally this morning while gathering his supplies for Ecole, "Hey, where's a grand bag?" As opposed to a petit...
Et alors, ca marche, cette histoire....It's fun to watch the way their little brains process and interpret language. It's interesting to think that they're not translating as one does when learning a language when later in school. Hopefully we'll keep doing this with them...at least until they start to complain - in French, of course.
Monday, April 26, 2010
See with your eyes, not with your hands...
WRONG! But how many times have you heard a parent say this to a child while shopping or at someone's house or in a museum, etc...
We love to go the City Wide Garage Sale every month. All of our favorite antique and junk vendors and friends come in from everywhere to peddle their wares in a big auditorium. Evan and I have been going for years so it's only natural that we continue with this Saturday morning tradition of paying a bit extra to get in beforehand for "Early Shoppers" time. We've been taking the twins since they were in their Baby Bjorns. All of the vendors know them and love to catch up on their news.
Usually we divide and conquer - Evan will take one and I'll take the other. Creed is a rascal and usually gets out of there with a bunch of free vintage cars or balls of string or even a plastic little horse or something. Yesterday was no different, yet as he scampered around and was feeling like he owned the place, I found the dreaded words leaving my mouth. "Credence, we see with our eyes, not with our hands!" Ouch. Wrong. So, I stopped and explained about other's possessions, that we were shopping and that we had to ask before touching. How can I condemn one child's curiosity when his sister uses her hands to see?
When Zelda and I hit the aisles, it's a bit different. First, we'll go and see Deborah and Harrell, they're have vintage guitars and cowboy boots, and racks of rayon slips and old crinolines. Zelda will bury her body in them and walk away with a hanger (one of her favorite items to play with). We'll stop by and see the piles of ropas usadas from Ahab Bowen. With each different table of old linens, scarves, t-shirts, even old furs, Zelda will touch each piece and hold it to her cheek, asking, "Mom, what's this?" Our lesson in textiles will unfold. We'll see Miss Linda Parker, whose booth is artfully arranged with shabby hues of off-white linens, lace, books and curiosities. She loves Zelda's hugs and tries to always find old Braille books for her. Miss Linda introduces her to friends and Zelda hugs each of them. Sandy Schor sells tables of collectible jewelry, strings of beads and chain and underneath the tables - heaven! Zelda sorts through plastic containers of buttons; all the time seeing with her hands.
We stop at one table and a there sits a school autograph book from the late 1880's. Zelda: "I want to touch it." "Mommy, I want to read it." I carefully explain how fragile it was and we turn the pages together, with each page, her tiny fingers search for Braille.
Our final stop is Sarah Lawson, her trays of beads and jewelry findings are the perfect height for la petite Z to rearrange round glass orbs and small metal clasps. Sarah doesn't seem to mind that Zelda has confused her system and says that it will give her something to do for the rest of the afternoon. When I tell Zelda that it's time to go, she tells me that she's staying with Sarah.
The City Wide Garage Sale, like so many places in Austin, is another aspect of our playground. And with each different place or outing, a discussion ensues...we can see with our hands, all of us can...
We love to go the City Wide Garage Sale every month. All of our favorite antique and junk vendors and friends come in from everywhere to peddle their wares in a big auditorium. Evan and I have been going for years so it's only natural that we continue with this Saturday morning tradition of paying a bit extra to get in beforehand for "Early Shoppers" time. We've been taking the twins since they were in their Baby Bjorns. All of the vendors know them and love to catch up on their news.
Usually we divide and conquer - Evan will take one and I'll take the other. Creed is a rascal and usually gets out of there with a bunch of free vintage cars or balls of string or even a plastic little horse or something. Yesterday was no different, yet as he scampered around and was feeling like he owned the place, I found the dreaded words leaving my mouth. "Credence, we see with our eyes, not with our hands!" Ouch. Wrong. So, I stopped and explained about other's possessions, that we were shopping and that we had to ask before touching. How can I condemn one child's curiosity when his sister uses her hands to see?
When Zelda and I hit the aisles, it's a bit different. First, we'll go and see Deborah and Harrell, they're have vintage guitars and cowboy boots, and racks of rayon slips and old crinolines. Zelda will bury her body in them and walk away with a hanger (one of her favorite items to play with). We'll stop by and see the piles of ropas usadas from Ahab Bowen. With each different table of old linens, scarves, t-shirts, even old furs, Zelda will touch each piece and hold it to her cheek, asking, "Mom, what's this?" Our lesson in textiles will unfold. We'll see Miss Linda Parker, whose booth is artfully arranged with shabby hues of off-white linens, lace, books and curiosities. She loves Zelda's hugs and tries to always find old Braille books for her. Miss Linda introduces her to friends and Zelda hugs each of them. Sandy Schor sells tables of collectible jewelry, strings of beads and chain and underneath the tables - heaven! Zelda sorts through plastic containers of buttons; all the time seeing with her hands.
We stop at one table and a there sits a school autograph book from the late 1880's. Zelda: "I want to touch it." "Mommy, I want to read it." I carefully explain how fragile it was and we turn the pages together, with each page, her tiny fingers search for Braille.
Our final stop is Sarah Lawson, her trays of beads and jewelry findings are the perfect height for la petite Z to rearrange round glass orbs and small metal clasps. Sarah doesn't seem to mind that Zelda has confused her system and says that it will give her something to do for the rest of the afternoon. When I tell Zelda that it's time to go, she tells me that she's staying with Sarah.
The City Wide Garage Sale, like so many places in Austin, is another aspect of our playground. And with each different place or outing, a discussion ensues...we can see with our hands, all of us can...
Thursday, April 15, 2010
Real Housewives of Austin, TX...
...so, everyone is gaga about Reality TV and I don't even watch it - mainly because I don't have cable, thank goodness. As I drove the kids to Ecole this morning...I pitched this series in my mind:
Evan, self-employed artist/signmaker husband, is off on a week long trip to Florida to deliver 3 big ole' vintage signs to a rich client in Boca. I sleep through the alarm and wake up with the sleepy twins in bed with me and 15 minutes to make their lunches, feed them, get them dressed and out the door. Meanwhile, Zelda, with her particular potty training, insists that she spends at least 10 minutes sitting on the potty listening to glam rock, Triple Cobra. Creed, on the other hand is preparing a HUGE bag of various cars, dump trucks and jeeps to haul to Ecole for extended day play.
Loading the car - me, still in my PJ's and my post chemo, platinum blond hair resembling Phylis Diller - I have our builder, Tattoo John, watch the kids as I run in and out to get Zelda extra shoes and leggings in case she pees on them...
Up Mopac, I am writing this scenario in my head. Deliver kids, first Zelda to Gullet, then Creed to Ecole. My sleeping pill still hasn't worn off from the night before. Home to find out we have no electricity on our house renovation job sight, Tattoo John is dealing with inspectors (we haven't passed - yet) and Carlo, our steel guy has just arrived to install 3 flights of our staircase and needs 220 power to run his welder. What to do? Tap into the neighbors fuse box. Woohoo!
I guess I am missing the drama of: lady friends in tight spandex dresses, pedicures, cocktails, plastic surgery, cat fights & such to make this a viable Reality TV show...but this is it...for now...
Tune in for more.
Oh, and by the way, now I am at work, running my own shop and trying to finish a bunch of sewing...
while Daddy's away...
Evan, self-employed artist/signmaker husband, is off on a week long trip to Florida to deliver 3 big ole' vintage signs to a rich client in Boca. I sleep through the alarm and wake up with the sleepy twins in bed with me and 15 minutes to make their lunches, feed them, get them dressed and out the door. Meanwhile, Zelda, with her particular potty training, insists that she spends at least 10 minutes sitting on the potty listening to glam rock, Triple Cobra. Creed, on the other hand is preparing a HUGE bag of various cars, dump trucks and jeeps to haul to Ecole for extended day play.
Loading the car - me, still in my PJ's and my post chemo, platinum blond hair resembling Phylis Diller - I have our builder, Tattoo John, watch the kids as I run in and out to get Zelda extra shoes and leggings in case she pees on them...
Up Mopac, I am writing this scenario in my head. Deliver kids, first Zelda to Gullet, then Creed to Ecole. My sleeping pill still hasn't worn off from the night before. Home to find out we have no electricity on our house renovation job sight, Tattoo John is dealing with inspectors (we haven't passed - yet) and Carlo, our steel guy has just arrived to install 3 flights of our staircase and needs 220 power to run his welder. What to do? Tap into the neighbors fuse box. Woohoo!
I guess I am missing the drama of: lady friends in tight spandex dresses, pedicures, cocktails, plastic surgery, cat fights & such to make this a viable Reality TV show...but this is it...for now...
Tune in for more.
Oh, and by the way, now I am at work, running my own shop and trying to finish a bunch of sewing...
while Daddy's away...
Monday, February 22, 2010
Ce n'est pas normal...
I've had this friend for a very long time in France - going on 30 years now. She's a bit difficult, very Parisian, very particular and quite bitchy. But we've been through a lot together. I remember when I first moved there years ago, I stayed with her while I looked for an apartment. We would fold the linens in the morning, she at one end and me, holding the opposite corners of the sheets. If you've ever tried to fold sheets with someone, it's inevitable that one person will fold in the opposite direction. When this would occur, Marianne would stop and say, "Gail, ce n'est pas normal." - It's not normal to do it that way...When cooking, she would ask me to prepare the salade. As I broke the lettuce and prepared to wash it, again she would say, "Ce n'est pas normal." Any time I would do something that wasn't in tune with the way she was taught or accustomed to living: to her, it wasn't normal. We had explosive discussions about this. And to this day, the semantics have never been resolved.
So, the other day, I had my first appointment with a plastic surgeon. I must interject that throughout these past several years of fertility treatments, premature births, retinal and neurosurgeries and cancer, I/we - the family have had the most wonderful health care professionals. From the ER doctors down to the nurses and PCA's. So, whenever I go to see a new doctor, I come well equipped with my questions and also an attitude of "this ain't my first rodeo". But as I entered this surgeon's office, I felt vulnerable about my discussion of breast reconstruction as an option after my upcoming bilateral mastectomy.
First of all, I have had 4 surgeries in the past 14 months, plus dose dense chemo and weeks of radiation. Now, with this positive BART result to my genetic testing, I am due to have my breasts cut off. Thus reigns the question: to reconstruct or not to reconstruct? I am a AA at best. Perfectly small, Marie Antoinette, non-sagging breasts for which I have never had to invest in any sort of brassiere. I don't want anything bigger and I quite like myself the way I am. That, obviously is not an option. I have grappled with this decision for a while now - do I need breasts? I haven't really had them my entire life and these little ones that I've had have served me well. They nourished my preemies for the first 13 months of life and now, they're done. So, why not just have them taken off and not replaced?
Well, I had hoped to have had an open, frank discussion about this dilemma but unfortunately I have learned that women walk into a plastic surgeons office and are confronted with one thing: the options for the type of reconstruction, NOT whether or not to have it done at all. When I tried to approach the subject, I heard the dreaded words "Women do it to feel normal, to look normal again". Marianne's voice was ringing in my ears. "Ce n'est pas normal."
What the f**k is normal? But moreover, why would anyone want to be...? I will choose abnormal anyday. We will fly the abnormal flag: my daughter who can't see, my twins' who live with tubes in their brains, my husband who went to an Ivy League school and became a cowboy boot collector and artist instead of an attorney, and me...without breasts.
Sigh...I STILL don't know what I am going to do but I do know one thing: I won't be going back to that plastic surgeon.
So, the other day, I had my first appointment with a plastic surgeon. I must interject that throughout these past several years of fertility treatments, premature births, retinal and neurosurgeries and cancer, I/we - the family have had the most wonderful health care professionals. From the ER doctors down to the nurses and PCA's. So, whenever I go to see a new doctor, I come well equipped with my questions and also an attitude of "this ain't my first rodeo". But as I entered this surgeon's office, I felt vulnerable about my discussion of breast reconstruction as an option after my upcoming bilateral mastectomy.
First of all, I have had 4 surgeries in the past 14 months, plus dose dense chemo and weeks of radiation. Now, with this positive BART result to my genetic testing, I am due to have my breasts cut off. Thus reigns the question: to reconstruct or not to reconstruct? I am a AA at best. Perfectly small, Marie Antoinette, non-sagging breasts for which I have never had to invest in any sort of brassiere. I don't want anything bigger and I quite like myself the way I am. That, obviously is not an option. I have grappled with this decision for a while now - do I need breasts? I haven't really had them my entire life and these little ones that I've had have served me well. They nourished my preemies for the first 13 months of life and now, they're done. So, why not just have them taken off and not replaced?
Well, I had hoped to have had an open, frank discussion about this dilemma but unfortunately I have learned that women walk into a plastic surgeons office and are confronted with one thing: the options for the type of reconstruction, NOT whether or not to have it done at all. When I tried to approach the subject, I heard the dreaded words "Women do it to feel normal, to look normal again". Marianne's voice was ringing in my ears. "Ce n'est pas normal."
What the f**k is normal? But moreover, why would anyone want to be...? I will choose abnormal anyday. We will fly the abnormal flag: my daughter who can't see, my twins' who live with tubes in their brains, my husband who went to an Ivy League school and became a cowboy boot collector and artist instead of an attorney, and me...without breasts.
Sigh...I STILL don't know what I am going to do but I do know one thing: I won't be going back to that plastic surgeon.
Saturday, January 9, 2010
Missing you...
It would have been my Dad's 90th birthday this week. This photo was taken in 1944. I am missing him so very much...
Thursday, January 7, 2010
2010 workin' on a dream...
Trying to break into the New Year while still reflecting on the Old. It's hard to sum up 2009 with good memories so I've decided to do a + and - look back...
Although I was diagnosed with breast cancer in 2008 and had my first surgery before Christmas, 2009 still feels like the year of Cancer, so here we go:
- Had my port-a-cath put in by Dr Ames Smith, BUT +, it was a flawless surgery and easy to recover from.
- Creed hit his chin at Ecole and had his first experience with stitches, BUT +, he was a happy, cheerful, trooper.
- started my first chemo on January 20th, BUT +, Obama was inagurated.
- Had all of my hair cut off and my head shaved, BUT +, shared it with beautiful friends and have amazing photos, thanks to Todd.
- Mom was diagnosed with Stage 2 breast cancer, BUT +, she didn't have to suffer through chemo...
- Lori was diagnosed with Stage 2 breast cancer, BUT +, they were able to shrink the tumor before her surgery.
- 2 months of chemo was hideous, BUT, +, we took the twins to a wonderful outdoor Alejandro Escovedo concert during SXSW.
- Month 3 of chemo was awful, BUT, +, Jerry and Mary visited from NY and we went to see Bruce in concert. Also, modeled in Graphic - the BCRC Art Bra fashion show.
- Final month of chemo was debilitating, BUT +, Manu came from Paris for 3 weeks and I auditioned for a Nike commercial. Also, was contacted by People magazine to do an article about our family's fight with cancer.
- Started Radiation in June, BUT +, got the role in "Driven" - the Nike commercial! Also, took a family trip to the beach and Zelda & Creed LOVED it!! And the People magazine photographer came to shoot us on Father's Day weekend.
- finished 7 weeks of radiation in July, BUT +, headed to Sturgeon Bay, WI to stay with Bill & Kathryn, and then into Chicago to see Margo & Luke and their girls and Gemma, Rowley and Fin and of course, Dr McLeod and the toxoplasmosis research group.
- I was still bald and exhausted, BUT +, Craig and Seth came down to help me take the twins back to the beach.
- Was asked to participate in a Myriad study for genetic predisposition to breast cancer, BUT +, the twins went back to Ecole and and Zelda started her PPCD program.
- Hair was still only under 2 inches long and hated it, BUT +, Zelda and I flew to Pasadena, CA to see Dr Tawansy. Her retinas have remained attached! Creed and Evan took a road trip to El Paso.
- Dad was sick and in and out of the hospital, BUT +, he made it to the twins' 4th birthday party and I was named Honorary Chair of the Breast Cancer Resource Center's Annual Luncheon. I gave the keynote speech.
- Dad was still sick, BUT +, I flew to New Jersey to attend the Camp Beisler reunion and had a wonderful time reconnecting with old friends.
- Lori and tested positive for the BRAT genetic coding and now we have new things to consider in our treatment - which we thought was over, BUT +, I am flown to Beaumount, TX with my friend Deborah to give my speech "Cancer tries on my shoes.." before 1500 people.
- New options for treatment are not good news, BUT +, I am asked to present at Pecha Kucha night with 9 other Austin creatives.
- Dad died...
- Zelda had her 3rd seizure of the year...
- I had my ovaries removed to cut the risk of developing ovarian cancer from 45% down to 4%...there were no cancerous cells in my ovaries.
- Alton visited and Seth and Craig came back for Christmas and New Year's. The kids had a blast. They are happy. healthy and cheerful. We have 3 floors on our house that is under construction. Evan is busy, busy, busy and this year....I will have my breasts cut off.
Happy New Year...
Although I was diagnosed with breast cancer in 2008 and had my first surgery before Christmas, 2009 still feels like the year of Cancer, so here we go:
- Had my port-a-cath put in by Dr Ames Smith, BUT +, it was a flawless surgery and easy to recover from.
- Creed hit his chin at Ecole and had his first experience with stitches, BUT +, he was a happy, cheerful, trooper.
- started my first chemo on January 20th, BUT +, Obama was inagurated.
- Had all of my hair cut off and my head shaved, BUT +, shared it with beautiful friends and have amazing photos, thanks to Todd.
- Mom was diagnosed with Stage 2 breast cancer, BUT +, she didn't have to suffer through chemo...
- Lori was diagnosed with Stage 2 breast cancer, BUT +, they were able to shrink the tumor before her surgery.
- 2 months of chemo was hideous, BUT, +, we took the twins to a wonderful outdoor Alejandro Escovedo concert during SXSW.
- Month 3 of chemo was awful, BUT, +, Jerry and Mary visited from NY and we went to see Bruce in concert. Also, modeled in Graphic - the BCRC Art Bra fashion show.
- Final month of chemo was debilitating, BUT +, Manu came from Paris for 3 weeks and I auditioned for a Nike commercial. Also, was contacted by People magazine to do an article about our family's fight with cancer.
- Started Radiation in June, BUT +, got the role in "Driven" - the Nike commercial! Also, took a family trip to the beach and Zelda & Creed LOVED it!! And the People magazine photographer came to shoot us on Father's Day weekend.
- finished 7 weeks of radiation in July, BUT +, headed to Sturgeon Bay, WI to stay with Bill & Kathryn, and then into Chicago to see Margo & Luke and their girls and Gemma, Rowley and Fin and of course, Dr McLeod and the toxoplasmosis research group.
- I was still bald and exhausted, BUT +, Craig and Seth came down to help me take the twins back to the beach.
- Was asked to participate in a Myriad study for genetic predisposition to breast cancer, BUT +, the twins went back to Ecole and and Zelda started her PPCD program.
- Hair was still only under 2 inches long and hated it, BUT +, Zelda and I flew to Pasadena, CA to see Dr Tawansy. Her retinas have remained attached! Creed and Evan took a road trip to El Paso.
- Dad was sick and in and out of the hospital, BUT +, he made it to the twins' 4th birthday party and I was named Honorary Chair of the Breast Cancer Resource Center's Annual Luncheon. I gave the keynote speech.
- Dad was still sick, BUT +, I flew to New Jersey to attend the Camp Beisler reunion and had a wonderful time reconnecting with old friends.
- Lori and tested positive for the BRAT genetic coding and now we have new things to consider in our treatment - which we thought was over, BUT +, I am flown to Beaumount, TX with my friend Deborah to give my speech "Cancer tries on my shoes.." before 1500 people.
- New options for treatment are not good news, BUT +, I am asked to present at Pecha Kucha night with 9 other Austin creatives.
- Dad died...
- Zelda had her 3rd seizure of the year...
- I had my ovaries removed to cut the risk of developing ovarian cancer from 45% down to 4%...there were no cancerous cells in my ovaries.
- Alton visited and Seth and Craig came back for Christmas and New Year's. The kids had a blast. They are happy. healthy and cheerful. We have 3 floors on our house that is under construction. Evan is busy, busy, busy and this year....I will have my breasts cut off.
Happy New Year...
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