when she was 2 days old by our friends Pete and Diane. Bunny has been with her every day since, except for the couple of weeks we thought we lost her when she was really at the bottom of Fred's closet. When I say Bunny goes everywhere with June, I mean everywhere. At school, she stays in June's cubby while June works (Montessori school). There are some people close to us who are a bit afraid of the germs Bunny carries but in fact I am sure that June's immune system is all the stronger for having such a loved, filthy bunny by her side.
Bunny is now a character in June's pretend play; there was a big to-do this afternoon, in fact, when Bunny pushed June. They worked it out, with me playing the teacher. Right now, there are a number of other dolls/animals who travel with us through the day; this week it is a baby doll called "Baby Moses," a Precious Moments doll my mother-in-law gave June for Chanukah whom June either calls "Mariel" or "Moona" depending on her mood, and a stuffed mommy and baby elephant.
June surprises me every day with how complex her narratives are becoming; she weaves in conversations she's overheard, tv shows she watched weeks ago, accounts from school and home, fairy tales and bible stories. It's fascinating for me to experience the way her stories change and grow. It is hard not to see myself as a child in June; I remember from a very young age making up stories and acting them out. June has the dramatic flair, too, and will find just the perfect prop to act out her tale.
June has been giving Mariel/Moona and the elephants little bandages under their arms made out of my gauze tape. June likes to watch me shower and get dressed and she is very interested in the bandage under my arm. "Yeah, it's just there to help me heal," I tell her when she asks me for the thousandth time, "What you got there?" looking up at my incisions. "It feels so good that my body is strong and healing," I say.
Today I heard June say,"You're okay, Moona, you're healing now" as she put on Moona's bandage.
"Junie," I said, "God gave us amazing bodies that do so many amazing things!"
"Let's go on a treasure hunt," June said.
****
Georgie processes and expresses things differently. He is not like me or June at all in that language is so unnatural for him. Georgie's brain is naturally suited to doing visual-spatial tasks, like completing new jigsaw puzzles that I would struggle to do.
But being George's mom has taught me to look beyond how a child presents intellectually; George has taught me how to quiet my own mind so I can be really present with him without thinking a zillion thoughts a second. There is an openness, a spiritual energy that flows easily between George and me when I can do this (not always possible for me to do). He senses presence and I think appreciates it. He is sort of like a dog in his communication, in the way that he reacts to energy. You might be a total stranger but if you put out an open, loving vibe, George will cuddle up in your lap. If you emit tension or fear, he will avoid or test you.
So right now, George's processing of what is happening with Mom is all about the vibe I put out. Friday afternoon when I went completely mental (I must say) and screamed, George had a very good fight or flight response and totally tuned me out. June, in turn, put her little finger in my face and said "Mommy, you don't yelling at me!!!" and stamped upstairs.
These kids and our adventures together are pretty humbling for me. Saturday morning when I woke up feeling rested and regulated, George welcomed me with his beautiful smile and his smiling brown eyes. George forgives by his nature. He doesn't possess the ability to hold onto anger.
June had a new drama going on Saturday; it seemed Bunny was the hero Daddy who came home and gave crazy Moona mommy a glass of purple juice.
****
We are working with George doing a wonderful cognitive therapy called RDI that is allowing him to experience more nuanced emotions. But the process of learning things, like sharing joint attention with another person, that do not occur naturally in his specific neurological make-up is a long, slow process; a marathon, says Dr. Steven Gutstein, the creator of RDI, not a sprint.
In this particular moment in our lives, I don't think it's bad that he's missing some of the nuances of what is happening here.
****
June made up a treasure hunt. She drew a map (primarily scribbles), just like they have on the Dora show, she gathered an umbrella, her fairy wings, Bunny, George and me and said we had to cross the toll bridge. June's arms were full and George dashed away from her for a moment. I thought maybe he had had just enough of her for one day and was making his escape, but in fact, he ran to the table and picked up Moona, where June had left her, and then re-joined us.
"Oh thank you, Georgie!" June exclaimed. "You can carry Mariel."
June bossed us around for a while; the umbrella was to protect us from a snow storm and then we had to jump to an island and eat dinner made of legos. George carried Moona for June all the while.
I forget that I have no idea, really, what is happening inside his mind. Maybe he sees the bandages. Maybe he gets the whole thing.
****
People comment frequently about how good it is for George to have June around; how engaging she is, how she must help him with language. All of that is very, very true, but what it takes a more nuanced eye to see is how very good George is for June, as well. George supports June. George is kind to her. George is not a typical 6-year-old brother who might make fun of her, tease her, call her stupid and refuse to play her silly games. No, George validates her strength and her creativity and her gumption.
I think about how their unique gifts will help each other all of their lives and how June is growing up knowing that differences are part of life and how George is growing up seeing how to be your own self, proudly, always.
****
Peg Kessler, the visiting nurse who pulled the tube out of my arm just a little over a week ago, discharged me today. "You're terrific," she told me. "You've just done a terrific job here..." no doubt referring not only to the way that I didn't scream or actually pass out when she pulled the tube out and how I'm a good diabetic because my wound is healing so quickly but also to the general way she's seen me manage my health and home through this little ordeal.
Dammit, Peg! I thought. I have been doing a "terrific job" at this kind of thing my whole life, I am actually trying to let go and fuck up and not be so terrific here. I am trying to be honest and vulnerable and when I am, I know that it doesn't read as "terrific."
****
Maybe what I'm learning is how to navigate between worlds. How to trust my feelings are just feelings and to find safe places to let them out. How to pull myself together and out of my feelings when it's time to be present and mom. How to vent and scream when I need to without actually screaming at anybody (except maybe Bunny if June's not around?)How to make space for praying and healing and meditating even when there is no "illness" to remind me to do so.
I need a long life to work this all out and Fred assures me that I will have one because after all, I'm a "fighter" (Was that a fight? I thought that was a conversation.)
Amen.
Monday, March 30, 2009
Friday, March 27, 2009
Yesterday I did my first load of laundry
and it felt incredible to do (mom, when you're reading this, yes, Dr. Frankel said I could start doing chores like that and I'm not pushing it too much).
Today, I had a pretty "regular" day, taking the kids to school for the first time, spending the afternoon with them at the playground, getting dinner ready...and I felt weepy throughout.
Yesterday I was so ecstatic about not needing more surgery and about my appointment Wednesday with the oncologist who is recommending a very manageable round of chemo (4 treatments, spaced 3 weeks apart) and today I can't hold onto the details of anything and I hate looking at the pile of mail and bills that I haven't gone through getting bigger every day.
Yesterday I could feel all of the things I've learned from this strange experience. I was thinking about the conversation my friend Yitz and I had when he was talking about a Buddhist teaching and gave the example of an apple and how we know "this is an apple, it has seeds, a core, a peel." And how it's the same thing with life, we know "this is life"--people get diseases and life is hard. And how I was feeling that this is life, accepting that, I am just a soul here in a body and my body became ill
and I thanked God for my doctors and my husband and my family and my friends and my children and my synagogue and my home and my body's ability to heal so quickly.
And today I yelled at a lady at the playground and I yelled at my kids.
Yesterday I was okay with the fact that I can't be a supermom right now and I laughed when I found the Purim puppets strewn in with the Sesame Street toys in the toy box. I never got them back into the box marked "Purim" and now it's time to teach the kids about Passover and here Junie is still running around telling her version of the Purim story, how Haman was mean and then Nemo fish came to talk to the King and then the big bad wolf came and ate Queen Esther's Grandma. And yesterday I was thinking about how for Georgie I usually make special picture cards with all of the symbols of the holidays to teach him the stories and how I've just understandably fallen down on that job.
And today I feel worried that I can't do what I normally do to teach George and that what if he regresses in the next few months and that someone needs to show Fred how to organize all of the holiday stuff in case anything ever happened to me.
And yesterday I loved all of my meditation/affirmation cds about healing my body from cancer and the space I've made to listen to them. And right now I would prefer to drink a bottle of wine and not meditate at all. and I'm even annoyed by that word cancer
And tonight I am going to meditate and then I'm going to watch a movie with Fred and drink some wine and I bet tomorrow will be a day like
yesterday
and that every day (even the sucky ones) are a gift.
Today, I had a pretty "regular" day, taking the kids to school for the first time, spending the afternoon with them at the playground, getting dinner ready...and I felt weepy throughout.
Yesterday I was so ecstatic about not needing more surgery and about my appointment Wednesday with the oncologist who is recommending a very manageable round of chemo (4 treatments, spaced 3 weeks apart) and today I can't hold onto the details of anything and I hate looking at the pile of mail and bills that I haven't gone through getting bigger every day.
Yesterday I could feel all of the things I've learned from this strange experience. I was thinking about the conversation my friend Yitz and I had when he was talking about a Buddhist teaching and gave the example of an apple and how we know "this is an apple, it has seeds, a core, a peel." And how it's the same thing with life, we know "this is life"--people get diseases and life is hard. And how I was feeling that this is life, accepting that, I am just a soul here in a body and my body became ill
and I thanked God for my doctors and my husband and my family and my friends and my children and my synagogue and my home and my body's ability to heal so quickly.
And today I yelled at a lady at the playground and I yelled at my kids.
Yesterday I was okay with the fact that I can't be a supermom right now and I laughed when I found the Purim puppets strewn in with the Sesame Street toys in the toy box. I never got them back into the box marked "Purim" and now it's time to teach the kids about Passover and here Junie is still running around telling her version of the Purim story, how Haman was mean and then Nemo fish came to talk to the King and then the big bad wolf came and ate Queen Esther's Grandma. And yesterday I was thinking about how for Georgie I usually make special picture cards with all of the symbols of the holidays to teach him the stories and how I've just understandably fallen down on that job.
And today I feel worried that I can't do what I normally do to teach George and that what if he regresses in the next few months and that someone needs to show Fred how to organize all of the holiday stuff in case anything ever happened to me.
And yesterday I loved all of my meditation/affirmation cds about healing my body from cancer and the space I've made to listen to them. And right now I would prefer to drink a bottle of wine and not meditate at all. and I'm even annoyed by that word cancer
And tonight I am going to meditate and then I'm going to watch a movie with Fred and drink some wine and I bet tomorrow will be a day like
yesterday
and that every day (even the sucky ones) are a gift.
Tuesday, March 24, 2009
surgery is fun, but--
I was 100% ecstatic when Dr. Frankle called me this morning and said that my margins of error were clear and I would not need more surgery! Yeah!!! After two c-sections in three years and last Tuesday's adventure just three years after the last c-section, I'm officially announcing that I am done with surgery.
(Incidentally, Dr. Frankle shared that of the thirteen lymph nodes he removed, only one came back cancerous. This was good news! And surprising, since Fred told me that Dr. Frankle told him that he had removed five lymph nodes during my surgery.)
((There are several theories floating around about this small confusion: 1) Dr. Frankle (a surgeon of 35+ years) told Fred the wrong number of lymph nodes that he removed; 2) Fred was understandably exhausted and confused after my surgery and misheard Dr. Frankle; 3)Fred heard Dr. Frankle but told me 5 rather than 13 so I wouldn't be worried all week; 4) Both Fred and Dr. Frankle were stoned out of their minds during my surgery. Since Fred denies theory number 3, we can take that one off the table, and since Fred has never smoked a joint in his life and Dr. Frankle's eyes looked clear last Tuesday, we can also remove number 4. Note, I am simply reporting, not editorializing, about this news.))
5 lymph nodes, 13, it's all water under the bridge--they were clear except for that one little pest! My arm probably has been healing faster because I was thinking only 5 nodes were removed. The body/mind thing is powerful and I'm more interested in it than ever. Another example from this week: I asked Fred to bring up my bottle of percoset before going to bed the other night; he did, I took it, the pain went away, I fell asleep. Funny thing was in the morning when I went to take my thyroid medicine, I couldn't find it. Here it was on my bedroom dresser--Fred had brought it up it last night, thinking it was percoset. Hhhhhmmm.
But we won't put Fred on another trial. Everyone read the last post and knows I love him. The guy is doing an amazing job of keeping things running in the house--and truth to tell, maybe one "detail" person is plenty in a relationship. On to other news...
So I was sitting outside with my kids a few hours ago and I suddenly realized that this one old close friend of mine hasn't gotten in touch with me. I've sent her a few emails and I started thinking maybe she hasn't gotten them, maybe she doesn't know. We were really close at one point in our lives, during my mid-twenties when I was doing theater in Chicago; she directed my most successful one-woman show. Has she not read my emails or is she actually ignoring me?
I started thinking. A lot of people around me at that time of my life thought she was pretty superficial, but I never did. I started feeling really disappointed and sad at the idea that she knew what I was going through and hasn't reached out in anyway. And
just then as I was getting all caught up in whether she knew or not and whether she was superficial or not and whether I was stupid for not seeing it before or not and whether I should give her a call or not, the phone rang and it was someone I was so happy to hear from. My friend Amy, from high school. We hadn't talked for such a long, long time. Her sister is on facebook with me and told Ame what was going on.
Ame is a science person; she works as a veterinarian. She asked me how I was doing and it was perfect because I'd been developing this material in my mind all day and she was just an ideal person to share it with: I get breast cancer, right, and everyone around is so happy and confidant that I'll be cured and how it just makes me so f--ing pissed that all of the brilliant doctors and researchers have been working in oncology while for the last 27 years that I've been living with Type 1 diabetes apparantly all of the morons go into endocrinology and can't figure out how to make a freakin artificial pancreas. I kept going with it--all the oncologists graduate from Johns Hopkins and Harvard and Penn and all the endos get their MDs from some school in the Caribbean and I had us both really, really laughing hysterically and I know I'm losing it in translation now but seriously, a side effect of getting this breast cancer diagnosis is that I'm seriously pissed off that they can cut away and chemo the hell out of the cancer but no one can figure out how to implant a few beta cells and get my pancreas to produce insulin again.
But it was funny when I told Amy that. Yeah, we laughed like hell about it and I was like, how did the most non-superficial person in the world, who gets my dark sense of humor and will enjoy these medical references, happen to call me just now? F-- the theater director. Amy literally sticks her hand up cows and horses' butts for a living. And she's damn good at it. That's the kind of friend I can talk to right now.
And I don't want to sound like my life has become a twisted version of "My Name is Earl," but there's been a lot of karma/coincidence stuff happening with me. Amy gets her breath from laughing at my shtick and she asks me if I've been visualizing myself as healthy.
Now you have to understand--if you don't know Ame--that the word "visualize" is not a word that I've ever heard come out of her mouth. Ame and I met on the school bus; I was in 6th grade, she was in 7th. We sat in a seat together, along with an annoying boy named Alan Riga who tried to push us against the window every afternoon. We bonded (Ame and I, not Alan.)Even then, she was the scientist and I was the artist. There was a lot of respect between us and a lot of yin/yang sympatico. We talked about Einstein. We grew up together. In high school, we drank together and went to Denny's late at night for onion rings and engaged in some petty acts of vandalism. Amy's father died of leukemia. It was the first funeral I ever went to where I saw an open casket. There was Mr. Platko, the nicest dad, the one who used to drive us to the mall, the one who was the star of his bowling league. And he was dead.
I went to theater school, Ame went to vet school. I never heard her say something like "visualize" before today.
"Yes, Ame, I am," I told her. And I have been. Twice a day, listening to a meditation/visualization/affirmation CD.
"That's good," she said. "You're going to beat this."
"Do you promise me?"
"Yes, Gab, I do."
"I'm a little worried about my immune system. First type 1 diabetes, graves's disease, now this. I don't want anymore."
"Well...we'll get it stronger. We'll figure it out. We'll get your immune system strong."
It was what I needed to hear at 5:30PM today when she called me. We made some plans for her to come down and hang with me during my chemo and we laughed about how lame it is that we are actually using chemo to carve out some girls time. But we are both busy moms and she is a busy vet and I am a busy writer/teacher/artsy lady.
"You are funny, Gab," she said before hanging up. "You are so f--ing funny."
Thank God I've got all of you guys who are reading this now around me because you know, like Ame, you are the real ones for me.
Oh yeah, one more thing I have to share about this "funny" thing...I've gotten a few cards from people who indicated how surprised/shocked they were to find out that someone as "funny" and "creative" as I am is dealing with cancer. I am serious. One person actually also included "adorable", that she was shocked that someone as "adorable" as me is dealing with this disease. So, I'm thinking that if being "funny" and "creative" and possibly also "adorable" prevented cancer, you would generally find more funny and creative (and some adorable)people around and maybe even the nightmare that was just the Bush administration would never have occurred.
So my tip is that if Hallmark doesn't make cards that say (cover), "Gee...sorry to hear you got cancer..." (inside)"I always thought you were so funny/creative/adorable. That sucks!" then probably that's not the most appropriate message to write in on a card to someone who in fact is funny and creative (not going to accept adorable)and did just get diagnosed with cancer. It's just a thought.
(Incidentally, Dr. Frankle shared that of the thirteen lymph nodes he removed, only one came back cancerous. This was good news! And surprising, since Fred told me that Dr. Frankle told him that he had removed five lymph nodes during my surgery.)
((There are several theories floating around about this small confusion: 1) Dr. Frankle (a surgeon of 35+ years) told Fred the wrong number of lymph nodes that he removed; 2) Fred was understandably exhausted and confused after my surgery and misheard Dr. Frankle; 3)Fred heard Dr. Frankle but told me 5 rather than 13 so I wouldn't be worried all week; 4) Both Fred and Dr. Frankle were stoned out of their minds during my surgery. Since Fred denies theory number 3, we can take that one off the table, and since Fred has never smoked a joint in his life and Dr. Frankle's eyes looked clear last Tuesday, we can also remove number 4. Note, I am simply reporting, not editorializing, about this news.))
5 lymph nodes, 13, it's all water under the bridge--they were clear except for that one little pest! My arm probably has been healing faster because I was thinking only 5 nodes were removed. The body/mind thing is powerful and I'm more interested in it than ever. Another example from this week: I asked Fred to bring up my bottle of percoset before going to bed the other night; he did, I took it, the pain went away, I fell asleep. Funny thing was in the morning when I went to take my thyroid medicine, I couldn't find it. Here it was on my bedroom dresser--Fred had brought it up it last night, thinking it was percoset. Hhhhhmmm.
But we won't put Fred on another trial. Everyone read the last post and knows I love him. The guy is doing an amazing job of keeping things running in the house--and truth to tell, maybe one "detail" person is plenty in a relationship. On to other news...
So I was sitting outside with my kids a few hours ago and I suddenly realized that this one old close friend of mine hasn't gotten in touch with me. I've sent her a few emails and I started thinking maybe she hasn't gotten them, maybe she doesn't know. We were really close at one point in our lives, during my mid-twenties when I was doing theater in Chicago; she directed my most successful one-woman show. Has she not read my emails or is she actually ignoring me?
I started thinking. A lot of people around me at that time of my life thought she was pretty superficial, but I never did. I started feeling really disappointed and sad at the idea that she knew what I was going through and hasn't reached out in anyway. And
just then as I was getting all caught up in whether she knew or not and whether she was superficial or not and whether I was stupid for not seeing it before or not and whether I should give her a call or not, the phone rang and it was someone I was so happy to hear from. My friend Amy, from high school. We hadn't talked for such a long, long time. Her sister is on facebook with me and told Ame what was going on.
Ame is a science person; she works as a veterinarian. She asked me how I was doing and it was perfect because I'd been developing this material in my mind all day and she was just an ideal person to share it with: I get breast cancer, right, and everyone around is so happy and confidant that I'll be cured and how it just makes me so f--ing pissed that all of the brilliant doctors and researchers have been working in oncology while for the last 27 years that I've been living with Type 1 diabetes apparantly all of the morons go into endocrinology and can't figure out how to make a freakin artificial pancreas. I kept going with it--all the oncologists graduate from Johns Hopkins and Harvard and Penn and all the endos get their MDs from some school in the Caribbean and I had us both really, really laughing hysterically and I know I'm losing it in translation now but seriously, a side effect of getting this breast cancer diagnosis is that I'm seriously pissed off that they can cut away and chemo the hell out of the cancer but no one can figure out how to implant a few beta cells and get my pancreas to produce insulin again.
But it was funny when I told Amy that. Yeah, we laughed like hell about it and I was like, how did the most non-superficial person in the world, who gets my dark sense of humor and will enjoy these medical references, happen to call me just now? F-- the theater director. Amy literally sticks her hand up cows and horses' butts for a living. And she's damn good at it. That's the kind of friend I can talk to right now.
And I don't want to sound like my life has become a twisted version of "My Name is Earl," but there's been a lot of karma/coincidence stuff happening with me. Amy gets her breath from laughing at my shtick and she asks me if I've been visualizing myself as healthy.
Now you have to understand--if you don't know Ame--that the word "visualize" is not a word that I've ever heard come out of her mouth. Ame and I met on the school bus; I was in 6th grade, she was in 7th. We sat in a seat together, along with an annoying boy named Alan Riga who tried to push us against the window every afternoon. We bonded (Ame and I, not Alan.)Even then, she was the scientist and I was the artist. There was a lot of respect between us and a lot of yin/yang sympatico. We talked about Einstein. We grew up together. In high school, we drank together and went to Denny's late at night for onion rings and engaged in some petty acts of vandalism. Amy's father died of leukemia. It was the first funeral I ever went to where I saw an open casket. There was Mr. Platko, the nicest dad, the one who used to drive us to the mall, the one who was the star of his bowling league. And he was dead.
I went to theater school, Ame went to vet school. I never heard her say something like "visualize" before today.
"Yes, Ame, I am," I told her. And I have been. Twice a day, listening to a meditation/visualization/affirmation CD.
"That's good," she said. "You're going to beat this."
"Do you promise me?"
"Yes, Gab, I do."
"I'm a little worried about my immune system. First type 1 diabetes, graves's disease, now this. I don't want anymore."
"Well...we'll get it stronger. We'll figure it out. We'll get your immune system strong."
It was what I needed to hear at 5:30PM today when she called me. We made some plans for her to come down and hang with me during my chemo and we laughed about how lame it is that we are actually using chemo to carve out some girls time. But we are both busy moms and she is a busy vet and I am a busy writer/teacher/artsy lady.
"You are funny, Gab," she said before hanging up. "You are so f--ing funny."
Thank God I've got all of you guys who are reading this now around me because you know, like Ame, you are the real ones for me.
Oh yeah, one more thing I have to share about this "funny" thing...I've gotten a few cards from people who indicated how surprised/shocked they were to find out that someone as "funny" and "creative" as I am is dealing with cancer. I am serious. One person actually also included "adorable", that she was shocked that someone as "adorable" as me is dealing with this disease. So, I'm thinking that if being "funny" and "creative" and possibly also "adorable" prevented cancer, you would generally find more funny and creative (and some adorable)people around and maybe even the nightmare that was just the Bush administration would never have occurred.
So my tip is that if Hallmark doesn't make cards that say (cover), "Gee...sorry to hear you got cancer..." (inside)"I always thought you were so funny/creative/adorable. That sucks!" then probably that's not the most appropriate message to write in on a card to someone who in fact is funny and creative (not going to accept adorable)and did just get diagnosed with cancer. It's just a thought.
Sunday, March 22, 2009
light and clouds
Friday was a shit day. (By the way, if you think every blog entry is going to be about spring flowers coming up, stop reading now). It began around 8AM when I went online to check my checking account and discovered that my work check, which goes in by direct deposit on the 20th of the month, wasn’t deposited. In eleven years of working at Mishkan, that has never happened. I took me a few hours of phone calls to figure out what happened. I’ll spare you the details but share that Wachovia sucks as a bank. My check was deposited in someone’s account in South Carolina who works at the Piggly Wiggly (not kidding). Mishkan, as an employer, and specifically Maria, our office manager and Sylvia, our bookkeeper, on the other hand do not suck in the least and because Maria and Sylvia did not want me to worry about a thing, they printed me a paper check and deposited into my account for me. (Friday, I meant to say, was a shit day with lots of blessings in it).
It was Fred’s 44th birthday. I knew that I couldn’t do a lot to help him celebrate. A few weeks ago, I got the idea that I could dedicate a “select-a-set” for him on WXPN. I emailed DJ Michaela Mijoun and wrote her all about our situation and picked out three love songs to dedicate to Fred on XPN for Friday morning March 20th, his birthday. Wednesday morning, my friend Marisol told me that her husband David heard my dedication to Fred—Michaela played it on Wednesday the 18th instead of Friday, the 20th. We missed it. I emailed her (still doped on percoset) about what happened and she explained no, the show wasn’t archived and no, she couldn’t replay on Friday because it was women’s music hour. Shit.
Fred didn’t care. He loved the idea of what I did, even if it was played on the wrong day and we missed it. I didn’t love the idea of it; I wanted it and I was pissed. Or maybe I should say the old me, the me of a month ago before this diagnosis, was pissed, and the new me, who is getting better at noticing my feelings and not being attached to them, noticed how pissed I was. And tried to let it go.
(Maybe I’ll mention now that I am recovering perfectionist and part of what has been very, very hard about this experience is that I don’t have the physical strength at the moment to manage things perfectly. There is a lot of mess in my life right now and I am being forced to just “be” with it).
So I couldn’t fix Fred’s birthday select-a-set and I hadn’t done any of the things I would have normally done to make his birthday special: make homemade cards with the kids, surprise him with a cake for breakfast. No, instead, I spent the morning dealing with Wachovia and then my visiting nurse, Peg. Peg is a kind, large woman who came to check my incision. When she was looking at the tube attached to my lymph node incision holding my draining blood, she accidentally pulled the whole thing out. It was the only time all week I thought I might pass out. But I didn’t. We took some deep breaths and called Dr. Frankle’s office. Of course, he was in surgery. We waited a while to see if he would call back, but he was still in surgery when Peg had to go on to her next appointment. So I sat there, with some gauze covering the incision, waiting for Dr. Frankle’s call.
On Tuesday, when I was waiting to go into surgery, Rabbi Yael was there with Fred and me. She sang my favorite psalms and shared some Torah with us. She talked about how God’s presence accompanied the Israelites when they were wandering in the desert and how it (I’m paraphrasing) sometimes appeared to the people as a light guiding the Mishkan and how sometimes, the light was gone and there was only a cloud around the Mishkan and how both were God, the light and the cloud. And that even when it feels like the clouds are over and around me, that is God, too. This was just before surgery when she shared this teaching and I was as vulnerable as I could be then, weak and dehydrated, with no water, food or coffee for 15 hours, hooked up to the IV, with Dr. Frankle’s initials penned onto my breast with his marker. But I understood Yael’s teaching very clearly and as cloudly as I felt, I knew God was with me.
And sort of the same on Friday. Dr. Frankle called back and said not to come in, just keep the incision clean and covered with gauze. My arm hurt a lot less with the tube and bottle out, so Peg Kessler did me a favor with her overeager reach. Fred brought the kids home from school and went back to work. My friend Ellyn came over to play with them. They were both really happy to be with her, since it had clearly been a long week for all of us and June especially did not appreciate a tired, grouchy mommy.
Fred got home from work and I was trying to feed the kids (Ellyn just left) because Sandra was going to watch them so Fred and I could go out for his birthday dinner. Of course, neither of them liked what was on their dinner plates and were acting whiny and fussy. Fred was looking through the mail while they fussed. I hit my breaking point. I didn’t have any reserve or energy to deal with the dinner situation or to him not being tuned in to the fact that I really needed his help in that moment.
If it had been the “me” of a month ago, I would have thrown the spatula across the room, aiming just a few inches away from Fred’s butt. I would have called him an asshole and angrily pulled something else out of the fridge for the kids. But I didn’t. I noticed what I was feeling. I said to Fred, “ I had a hard fucking day. I have no energy. Please give the kids dinner,” and I went upstairs and lay on our guest bed (well, futon) for fifteen minutes.
I could hear that downstairs everyone liked what Daddy was fixing. I went to the bathroom to attempt to make myself look like a human being since it was my first time really out in public since the surgery. I put on some lipstick and mascara and sat on the toilet and let myself have a long cry (post-mascara application—brilliant!).
I really hadn’t had a cry like that all week. Fred brought the kids upstairs and got them in pajamas and put on Noggin (please don’t ask me how much Noggin June has watched this week). He came into the bathroom. He held me for a long time. I apologized that his birthday was a shit birthday, but he assured me that it wasn’t. He said some things that were very intimate and that are between the two of us, but I will share that I think he likes me better weepy than throwing spatulas.
I like me better, too, and I’m frankly embarrassed that it took me this illness to realize the ridiculousness my pretense of being in control of all things at all times and not seeing all of the blessings in the clouds, but this is the truth of what is happening. I should say, the old me would feel embarrassed by all of this, while the new me is trying to feel compassion for the old spatula-throwing me, because clearly she/I needed/need some compassion and forgiveness…we all do…and I can give it easily to others but it is fucking hard to just be and give it to myself.
Fred and I went to dinner at Brigid’s. It’s a little pub in the Fairmount neighborhood of Philly, where Fred used to live when we first met. In fact, we went there on our first date. It was a little hard to be there and not think back to that night and of the innocence between the two of us and the hope and the attraction and the way I felt like I could tell him anything and he could hold it and I did and it was true.
I got a little weepy a few times during dinner but I knew it was okay and I let myself feel what I was feeling and here, sitting with this man I love ten years later in the pub where we had our first date, I knew that our love and intimacy had reached a new level and that the cloudiness of this hard month was turning to light for me, for us, for our family and future.
And I am so thankful for that.
And PS, Fred has just the kind of waitress he likes, the kind who is just really good at her job and efficient and friendly but not at all chatty and doesn’t stick around too long and notices if your wife is weepy and gives you your space. And for someone in his industry, this was important to make his meal a great one, so thank you, Universe, for that blessing.
And PPS, I gave my brother Jon the songs I had meant to play for Fred on XPN plus 11 more and he got them on itunes and burned them on a disk and sent them priority mail and it came and Fred got it yesterday, the day after his birthday, which was just perfect enough.
It was Fred’s 44th birthday. I knew that I couldn’t do a lot to help him celebrate. A few weeks ago, I got the idea that I could dedicate a “select-a-set” for him on WXPN. I emailed DJ Michaela Mijoun and wrote her all about our situation and picked out three love songs to dedicate to Fred on XPN for Friday morning March 20th, his birthday. Wednesday morning, my friend Marisol told me that her husband David heard my dedication to Fred—Michaela played it on Wednesday the 18th instead of Friday, the 20th. We missed it. I emailed her (still doped on percoset) about what happened and she explained no, the show wasn’t archived and no, she couldn’t replay on Friday because it was women’s music hour. Shit.
Fred didn’t care. He loved the idea of what I did, even if it was played on the wrong day and we missed it. I didn’t love the idea of it; I wanted it and I was pissed. Or maybe I should say the old me, the me of a month ago before this diagnosis, was pissed, and the new me, who is getting better at noticing my feelings and not being attached to them, noticed how pissed I was. And tried to let it go.
(Maybe I’ll mention now that I am recovering perfectionist and part of what has been very, very hard about this experience is that I don’t have the physical strength at the moment to manage things perfectly. There is a lot of mess in my life right now and I am being forced to just “be” with it).
So I couldn’t fix Fred’s birthday select-a-set and I hadn’t done any of the things I would have normally done to make his birthday special: make homemade cards with the kids, surprise him with a cake for breakfast. No, instead, I spent the morning dealing with Wachovia and then my visiting nurse, Peg. Peg is a kind, large woman who came to check my incision. When she was looking at the tube attached to my lymph node incision holding my draining blood, she accidentally pulled the whole thing out. It was the only time all week I thought I might pass out. But I didn’t. We took some deep breaths and called Dr. Frankle’s office. Of course, he was in surgery. We waited a while to see if he would call back, but he was still in surgery when Peg had to go on to her next appointment. So I sat there, with some gauze covering the incision, waiting for Dr. Frankle’s call.
On Tuesday, when I was waiting to go into surgery, Rabbi Yael was there with Fred and me. She sang my favorite psalms and shared some Torah with us. She talked about how God’s presence accompanied the Israelites when they were wandering in the desert and how it (I’m paraphrasing) sometimes appeared to the people as a light guiding the Mishkan and how sometimes, the light was gone and there was only a cloud around the Mishkan and how both were God, the light and the cloud. And that even when it feels like the clouds are over and around me, that is God, too. This was just before surgery when she shared this teaching and I was as vulnerable as I could be then, weak and dehydrated, with no water, food or coffee for 15 hours, hooked up to the IV, with Dr. Frankle’s initials penned onto my breast with his marker. But I understood Yael’s teaching very clearly and as cloudly as I felt, I knew God was with me.
And sort of the same on Friday. Dr. Frankle called back and said not to come in, just keep the incision clean and covered with gauze. My arm hurt a lot less with the tube and bottle out, so Peg Kessler did me a favor with her overeager reach. Fred brought the kids home from school and went back to work. My friend Ellyn came over to play with them. They were both really happy to be with her, since it had clearly been a long week for all of us and June especially did not appreciate a tired, grouchy mommy.
Fred got home from work and I was trying to feed the kids (Ellyn just left) because Sandra was going to watch them so Fred and I could go out for his birthday dinner. Of course, neither of them liked what was on their dinner plates and were acting whiny and fussy. Fred was looking through the mail while they fussed. I hit my breaking point. I didn’t have any reserve or energy to deal with the dinner situation or to him not being tuned in to the fact that I really needed his help in that moment.
If it had been the “me” of a month ago, I would have thrown the spatula across the room, aiming just a few inches away from Fred’s butt. I would have called him an asshole and angrily pulled something else out of the fridge for the kids. But I didn’t. I noticed what I was feeling. I said to Fred, “ I had a hard fucking day. I have no energy. Please give the kids dinner,” and I went upstairs and lay on our guest bed (well, futon) for fifteen minutes.
I could hear that downstairs everyone liked what Daddy was fixing. I went to the bathroom to attempt to make myself look like a human being since it was my first time really out in public since the surgery. I put on some lipstick and mascara and sat on the toilet and let myself have a long cry (post-mascara application—brilliant!).
I really hadn’t had a cry like that all week. Fred brought the kids upstairs and got them in pajamas and put on Noggin (please don’t ask me how much Noggin June has watched this week). He came into the bathroom. He held me for a long time. I apologized that his birthday was a shit birthday, but he assured me that it wasn’t. He said some things that were very intimate and that are between the two of us, but I will share that I think he likes me better weepy than throwing spatulas.
I like me better, too, and I’m frankly embarrassed that it took me this illness to realize the ridiculousness my pretense of being in control of all things at all times and not seeing all of the blessings in the clouds, but this is the truth of what is happening. I should say, the old me would feel embarrassed by all of this, while the new me is trying to feel compassion for the old spatula-throwing me, because clearly she/I needed/need some compassion and forgiveness…we all do…and I can give it easily to others but it is fucking hard to just be and give it to myself.
Fred and I went to dinner at Brigid’s. It’s a little pub in the Fairmount neighborhood of Philly, where Fred used to live when we first met. In fact, we went there on our first date. It was a little hard to be there and not think back to that night and of the innocence between the two of us and the hope and the attraction and the way I felt like I could tell him anything and he could hold it and I did and it was true.
I got a little weepy a few times during dinner but I knew it was okay and I let myself feel what I was feeling and here, sitting with this man I love ten years later in the pub where we had our first date, I knew that our love and intimacy had reached a new level and that the cloudiness of this hard month was turning to light for me, for us, for our family and future.
And I am so thankful for that.
And PS, Fred has just the kind of waitress he likes, the kind who is just really good at her job and efficient and friendly but not at all chatty and doesn’t stick around too long and notices if your wife is weepy and gives you your space. And for someone in his industry, this was important to make his meal a great one, so thank you, Universe, for that blessing.
And PPS, I gave my brother Jon the songs I had meant to play for Fred on XPN plus 11 more and he got them on itunes and burned them on a disk and sent them priority mail and it came and Fred got it yesterday, the day after his birthday, which was just perfect enough.
Thursday, March 19, 2009
March 19, 2009
It was raining most of the day but it stopped around 3PM. George really needed to get out and let off steam. I realized that I hadn't had any fresh air since I came home from the hospital at 6:30PM on Tuesday and that was just the two minutes from the car into the house. We got on our socks, shoes and jackets. June was giving her mermaid a bath and refused to put pants on and luckily with Sandra here, I could let her just keep doing what she was doing. George and I went out the front door and walked down Union Avenue towards Ashbourne. Everywhere I looked were little buds coming out of the ground.
It was great to see them coming up on this gray, rainy day with me groggy from percoset. Spring flowers coming up, just the green part now, I can't tell what will be tulips, what will be daffodils. George and I walked hand in hand, down Ashbourne and then left up Mill Road.
So many afternoons we've taken this walk together, George and me. Sometimes I count in rhythm with him, sometimes we sing the 'ABCs', sometimes I point out interesting things. Today we just walked in silence and it was precious for me, to be out of the house, to be holding his hand, to see what a big, beautiful boy he is, to notice the buds coming up. We got to a big house at the end of Mill Road. George looked up at me. I knew he wanted to climb the stairs to the top of the house.
"Go ahead," I said and he climbed up. It was a quiet hour. He reached the top. I said, "Come down now, Georgie," and he did and we turned up Glenwood Avenue together.
It has been years of work together that have created these smooth moments of our shared communication. George is 6 now and because of his apraxia, he is still learning how to talk.
But he knows how to communicate, better than many people around me. When I came home from the hospital Tuesday, I sat down on the couch and he cuddled up against me. He didn't leave my side. Fred tried to take him and June up for a bath and he wouldn't go. He snuggled against my left side and fell asleep there, nestling like a baby.
We made it back to Union Avenue and stopped in front of our house. I stood in awe looking at all of the bulbs coming up in my lawn. How did they get there? Had I planted them last fall and couldn't remember? Had they all come up last spring but I don't remember that? All through the yard--on the side of the house--in the back--there are flowers coming up.
I don't remember planting them. Was my fall such a busy blur that I've just spaced it out?
I'm honestly not sure but my backyard is incredibly full and in a week or two, I'll be able to see what are tulips, what are daffodils, what are something else. In a week or two, I'll know if I'm getting chemo or radiation and when it will all begin.
There is something so amazing about this moment in time, being just on the cusp of spring's awakening, how the whole world changes from the dead of winter into a great big garden. And how my life is strangely full and wondrous at this moment, the loving pouring out from everywhere, bursting up from teh earth like bulbs I can't remember ever planting.
Here I am standing in the garden on the dreariest day, springtime pangs erupting in my heart.
It was great to see them coming up on this gray, rainy day with me groggy from percoset. Spring flowers coming up, just the green part now, I can't tell what will be tulips, what will be daffodils. George and I walked hand in hand, down Ashbourne and then left up Mill Road.
So many afternoons we've taken this walk together, George and me. Sometimes I count in rhythm with him, sometimes we sing the 'ABCs', sometimes I point out interesting things. Today we just walked in silence and it was precious for me, to be out of the house, to be holding his hand, to see what a big, beautiful boy he is, to notice the buds coming up. We got to a big house at the end of Mill Road. George looked up at me. I knew he wanted to climb the stairs to the top of the house.
"Go ahead," I said and he climbed up. It was a quiet hour. He reached the top. I said, "Come down now, Georgie," and he did and we turned up Glenwood Avenue together.
It has been years of work together that have created these smooth moments of our shared communication. George is 6 now and because of his apraxia, he is still learning how to talk.
But he knows how to communicate, better than many people around me. When I came home from the hospital Tuesday, I sat down on the couch and he cuddled up against me. He didn't leave my side. Fred tried to take him and June up for a bath and he wouldn't go. He snuggled against my left side and fell asleep there, nestling like a baby.
We made it back to Union Avenue and stopped in front of our house. I stood in awe looking at all of the bulbs coming up in my lawn. How did they get there? Had I planted them last fall and couldn't remember? Had they all come up last spring but I don't remember that? All through the yard--on the side of the house--in the back--there are flowers coming up.
I don't remember planting them. Was my fall such a busy blur that I've just spaced it out?
I'm honestly not sure but my backyard is incredibly full and in a week or two, I'll be able to see what are tulips, what are daffodils, what are something else. In a week or two, I'll know if I'm getting chemo or radiation and when it will all begin.
There is something so amazing about this moment in time, being just on the cusp of spring's awakening, how the whole world changes from the dead of winter into a great big garden. And how my life is strangely full and wondrous at this moment, the loving pouring out from everywhere, bursting up from teh earth like bulbs I can't remember ever planting.
Here I am standing in the garden on the dreariest day, springtime pangs erupting in my heart.
Subscribe to:
Posts (Atom)