Oh dear God………

March 15, 2013

The idea might come as a whisper when God speaks, or when the Universe moves me in the right direction.  Once I decide to follow this whispering, suddenly all I hear is whimpering that grows fainter each day.

I don’t believe in God in the same way most religious people do, I am sure.  Still, I would pray with the children every night before I’d climb in with them.  Snuggling each to sleep.  Pillow talk time.  It was the only time each day that they would get my undivided attention.  And, I had theirs.  One on one.  In the dark.  Heads soft in the pillows.  This is when secrets were shared, ideas explored, and stories were told.

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Cassie was only four when she knelt by her bed exhausted from a day of arguing and fighting with her brother.  She was particularly jealous of his ‘older brother abilities’ that she had yet to discover for herself.  Before we pray, I tell her how God has a plan for each one of us.  And, with this plan, we are given our own special gift.  It is our job to discover, nurture and then use our gift for the greater good of all.  I was sure she understood.

Cassie prays, “Dear God, I know you want me to get along with my brother, Christopher.  And I know you want me to find my own gift.  I just wish you would speak up louder, cause I can not hear you!”

This is how I feel today.

I stopped writing about my journey with cancer, here in this blog, so that I can write for publication.  My whispering angels gave me the idea.  I am to write not only my journal, but, to incorporate true-life stories with my journal.  And, I am to find one-hundred of these stories.  One hundred.

It’s part of the title.

So far, I have found two.  I am already thinking that the title will be changed to Two (—undisclosed title)…not One-Hundred (—-).

Listening to the Universe is easy.  Following the path can get hazy.  I am groping in a thick fog unable to see all of the pieces scattered along the path.  Before, this was simple.  I already had a journal written.  A full year and a half of life with a husband, life with five children, life with cancer.  I just wrote each chapter into the blog and hit publish.

But, now, there is this blog, which is still a journal, but, it is now a current journal.  No transcribing from a pre-written journal.  And, now, instead of cancer, it is only about writing. Writing about writing.  Nothing about cancer, because the cancer stuff is in the book. There is also, the rest of the original journal, the cancer journal.  The rest of that year after diagnosis.  What do I do with that?  This makes me feel like I am trying to keep three separate journals; a current about writing, a current with research involved, about cancer, and somehow adding pieces from the past journal left off from the original blog.

I am driving myself crazy.  And my dear sweet angels seem to have hushed.

So.  Today, I make a plan.  First, I write a little blog post here.  Check in.  Update.  Think out loud.  Second, I take a chapter from the cancer journal, the one already written, and find a way to weave this into the current book writing.

The one with the One Hundred (–)   Two (–).

Oh this is so much work.  I miss the flow of just letting words flow onto the paper.  Well, they no longer flow from the pen, they are more or less punched onto a screen that looks like white paper.   Still, it was so much easier before.

Maybe I will just ask Cassie to pray for me.  She’s done well.  If anyone can get God to speak up louder, it is Cassie.

I am Genki…………

May 14, 2012

Grayson is coming. The call comes at five thirty in the morning. This time is really it, after three false alarms, three trips to three different hospitals with false labor.  Each time they were away from home and had to go to the nearest hospital.  This time is it.  Cassie knows it.  And once again, they are no where near their hospital.

We will have to meet in Newport.

A one hour drive for me. Greg has to work. He will meet his grandson after.  I will go alone for the birth. Cassie asked that I be there. I want to be there. I can not believe I am going to be there to watch my daughter give birth. My hypochondriac daughter. The daughter whom never played with baby dolls. She was too busy making her Barbie Dolls perform on stage. Or, having mommy play restaurant as we made lunch together everyday. The restaurant where Donnie, from New Kids on the Block singing group, would come in for lunch and take Cassie away to be one of their first girl singers in the band.

The same play-acting every single day.

None of which, included practice in nurturing and loving a baby. None of Cassie’s play time ever involved babies. Not the way I had played as a little girl. My neighbor friend, Debbie and I would even pretend to nurse our little plastic baby dolls. All of Cassie’s Christmas present baby dolls would end up in Michelley’s arms.

We always figured that it would be Michelley to have children and that Cassie would go off to be a star in a rock band. Though Cassie was not ever a full blown hypochondriac, she had tendencies toward this. I certainly worried that she would never survive child birthing. Or, better yet, that her doctor would not survive Cassie’s child birthing.

I am sure that she will slap the doctor with the first hard contraction.

Maybe I don’t really want to be there for the birth after all. I slow my car down a bit on the I-5 North. It is still dark outside. Watching the sun come up on the West coast is never as beautiful as on the East. But, there is a sweetness to the air at this hour. The wide open ocean is to my left. It’s massive darkness sends a chill through my spine. I can’t see it yet, but I know it is there and a dark ocean feels scary to me.

Morning rises on the West coast as quietly and softly as a baby blanket lies upon bare shoulders. Before I know it the first light of the day is upon me. A dimmer switch on daylight that is turning ever so slowly. There is pink in the air. I roll down my window and let it fill my lungs. I should hurry. A baby is going to be born into our family today. And, I want to drink in every moment.

Contractions have been seven minutes apart. Consistently. It will not surprise me in the least if they have this baby in the car on the way. With Cassie, life has never been normal for us. She is an adventure filled with drama. An action-packed movie whose love and passion draws in the viewer over and over again. I just hope this hospital staff can take it.

Cassie and Justin have written out their birth plan.

No drugs. None. Even if she is slapping the doctor. No drugs. There are a lot of other no’s in there. Mostly, they want a peaceful, loving and patient atmosphere. They want Grayson to be born naturally. No intervention unless it is life and death.

I smile and straighten my hand-woven hat with one hand as I picture Cassie not only slapping the doctor, but the nurse, Justin, his sister, Hannah, who is a mid-wife, and me. Her mom. I just know it’s coming. Cassie calls between contractions. She sounds great. Normal. Happy. They are there, just minutes from the hospital. But they are not going in yet. She is hungry. They are at Denny’s. I am to meet them there.

I know I am in the right Denny’s by the frightened look on the waiters face as he greets me at the door. I guess he recognizes me as the mother of the pregnant lady. Maybe I am looking frightened too. We walk to the far end of Denny’s. The closed portion. “I seated them back here,” he looks over his shoulder at me, using the menu in his hand as a pointer, and whispers, “you know, just in case.”

I just hope Cassie and Justin don’t feel obligated to name him Denny if he happens to be born here.

Justin and Hannah are sitting at a table with a place waiting for me. Cassie is sitting at the neighboring table. Alone. It makes me laugh. The fat girl at a table alone. Not welcome at the popular table. Okay. That is not really funny.  In fact, that is just down right awful.  Already, I can see that I am not the right person for birth coaching. Justin and Hannah look up from their grand-slam breakfasts and carry on their conversations as they motion for me to join them. I look over to see my daughter in the middle of a contraction and I am filled with pride.

Oh?  Another contraction?

Oh?
Another contraction?

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Have fun with that while we eat our breakfast.

It is in this moment that I know that Cassie is going to be fine.

I watch her close her eyes, hands to her belly and her slow, concentrated breathing. This is nothing like I had expected. In this moment, I am witnessing my daughter, my child, become a woman. A strong woman. My eyes well with tears. And, this time, it is not a chemo reaction. “Oh, Lowes,” (a nick name Greg has used for me for all of our married life) Justin calls me this too. I think it was an accident the first time. He didn’t know this was my nick name. I think he was nervous to use my real name when we first met and in one of his adorable awkward moments, it came out as Lowes instead of Lori. “You are not crying already?”

This will be my job.

I brought my camera. Cassie wants me to document the birth. Everything except the gooey stuff. I can not cry throughout the birth. I pull myself together and order breakfast, too. The three of us carry on a conversation and eat away. I like Denny’s for breakfast. This is fun. Every once in a while, we hear a little moan, look up and realize Cassie is having another contraction. I laugh when I see Justin look at her for a moment, realize she is okay and go back to a big bite of his eggs. We are cool. We have got this.

Until Cassie starts to get up and says, “It’s time. I think we better hurry.”

The three of us scramble to get out of our booth. We grab her purse, my camera bag, the car keys. Justin will go get the car. We run out the door and look back. We left Cassie. She is holding her belly with two hands. Down low, right at the base of her round and huge belly, as though this baby is about to slip out as she tries to keep up with us. She makes it out of the doors but needs to sit on the bench for another contraction.

This is it. We are really doing this. Grayson Chance Halliwell is on his way.

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Every thing happens so fast. We check in at seven-twenty in the morning. Just two hours after my wake up call this morning. I watch Cassie with utter amazement and pride. I watch a birth as nature intended. I suddenly become a wild-life nature photographer, moving like a ninja in the jungle. This is not the way I had envisioned myself in attendance to my daughter’s child-bearing day. I thought I would be at her pillow, mopping her brow, whispering encouragement.

Justin is there. Better than I ever could.

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I snap photos and curse my inabilities to know my camera technology better. I pray that luck will join me and give us a good photo. Bella Baby photography is not as easy as it looks. Maybe I will just go back to doing stupid little crafts and painting.  No more photography after this.

Michelley calls. We had made plans to skype during the birth. She would want to be here for this. We forgot to call her. Thank goodness she has good intuition. Michelle knew it was time. Cassie forgot to bring her laptop so we can not skype.  I put her on speaker instead and set the phone down so I can keep taking photos. Cassie has been quiet throughout each contraction as they are coming harder and closer with every minute. But, there is concern. Grayson’s heart beat is slowing. He appears to be under stress. Something is wrong. They roll Cassie to her side and mention C-section. Michelley starts asking questions. The doctor looks up at each one of us in the room. He is puzzled and can not figure out where that voice is coming from. I run to the phone and whisper to Michelley to just listen. Every thing is going to be okay. I see Cassie’s face and recognize a look in her eyes.

Determination.

Cassie heard C-section. The doctor leaves to prepare. And my stubborn, strong and strong-minded daughter gets determined. There is no way she is going to go for that. If her baby is stressed she is going to get him out. And she does.

It is the only time we hear a sound out of her. And it is a scream. One scream and he is out. Grayson is born.

Justin and Cassie are crying. He is kissing her sweaty forehead. Hannah is crying and squeezing her hand. Michelle is breathing over the phone. And I am taking more pictures.  Through tears.  Through my lens, Grayson looks at me.

The photo I promised I would not take and one that I would never post.  However, this must be shared.It is evidence of a truth.

The photo I promised I would not take and one that I would never post. However, this must be shared.
It is evidence of a truth.

Grayson is here.

It is eight thirty on Monday morning the fourteenth of May.  Just one hour and ten minutes after checking into this hospital. And, he is perfect. Grayson enters this world with eyes wide open. He is so calm in fact, that Cassie starts to ask what is wrong. They want to know why he is not crying? I see his slimy little body through my lens and I see his big round eyes looking about. I tell her, “nothing is wrong. Every thing is absolutely right. He is perfect.”

“Hey guys, hey guys,” it is Michelle. We forgot the phone. I pick it up. “My sister is a mommy.” She is crying, “is she okay? I heard her screaming.  Is the baby okay?”

Cassie was perfect.  He is perfect.  Everything is perfect.

From the moment Cassie and Michelley walked me out into our parking lot that day so long ago, the day Cassie told us that she was pregnant, I felt a connection to this baby.  His timing was too perfect.  For Cassie to get confirmation on the pregnancy test on the same day that I am going in for a cancer diagnosis was no coincidence.  There is purpose.

I believe Grayson and I made a pact with each other on that day.  We would go through our nine months with him growing into a perfect little baby and I would heal.  I would be cancer free when he arrives.  We had a deal.

Grayson holding my finger.

Grayson holding my finger.

He would be my little hero.  And I will be his Genki.  Since Michelley is away in Japan, we choose a Japanese word for my grandma name.  Genki.  It means happy, doing well.  I am.

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I am Genki.

Put the wet stuff on the hot stuff………..

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“Put the wet stuff on the hot stuff, and put that fire out….” it is part of the song the ‘firemen recruits’ perform in Legoland’s “The Big Test” show.  A song I can perform by heart after seeing Trevor do this show for six years. Then, Michelley in the same show. And, now, it is Michael and Christopher’s turn!

Michael auditioned.

Trevor will not be available for Legoland much during his second season at Cirque de la Mer. This created an opening and an immediate need. An audition was announced and held with a good number of acrobats attending.

And, Michael made it.

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Michael as Vern.

At this same time, the part of Chief was opening as well. The part that had four or five actors already committed and entrenched in this position for years. The part that Chris said he would love to do after seeing the show for the first time.  Some day.  Maybe.  Knowing this would most likely never happen. Not with a cast this deep for just one main role.

Sometimes, impossible things can suddenly become most possible.

The Entertainment Department put out the call. An audition for Chief. The other four actors suddenly had other gigs elsewhere, or moved over to other shows at Lego. Chief was open. Another audition was held.  Chris answered the call.

And, Christopher made it.

Chris as Chief with his brother, Trevor behind him as Marco as they enter to perform together.

Chris as Chief with his brother, Trevor, behind him as Marco as they enter to perform together.

Michelley and Trevor are out and Michael and Chris are in. I guess I will be hearing the ‘wet stuff on the hot stuff’ for a bit longer.  Before Trevor leaves for Cirque I get to see all three brothers perform together.  It would have been awesome if Michelley had been here to perform with them. They are all so good at their parts. I can never tire of this show and seeing my kids performing in it. The song, however, is another story.  It sticks in my head.

For days later.

I pull the bottom of my shirt away from my body, creating a fan, and try not to let it rub my skin too much. My burnt skin. This song goes through my mind over and over as I wait for Dr. K to enter. I wish it were that easy, to just put the wet stuff on the hot stuff.

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How Michael fights fires as Vern.

I am on fire.

We had expected the chemo to boost the side effects of radiation. Doing both at once, necessary, but, not part of the original plan.  Dr. K said it would amplify the side effects from radiation.

I do not think she expected it to burn quite this bad.

I am crying all of the time. Even though I am not actually crying. I am not sad.  My eyes are crying. Tearing. Welling up my lower lids and spilling over. Unannounced. Unwelcome.

Like a little old lady, I do not travel farther than a few steps away from the nearest box of tissues.  I look around this doctor’s examination room and can not believe that there is not one box of Kleenex any where.  I gingerly maneuver a little wad of tissue I have stuffed in my jeans pocket.  Still damp and falling apart.  I am using this to dab my eyes when Dr. K enters.

We say our usual hellos.  She does ask how Trevor is doing and smiles, but we skip the usual hugs.  I  lift my shirt so Dr. K can take a look at her piece of art, a left boob disfigured by cancer and re-designed by her radiation therapy.  Burned by radiation. She looks up to see my tears, she rubs my arm and pats my hand. There is a look of guilt in her eyes.

“Oh, I am not crying,” I tell her as I try to find a dry spot on my wad of Kleenex with one hand as I hold up my shirt with the other, “it is just the chemo.” Pieces of tissue have stuck to my face. I can see a piece on the one eye lash left after the second round of going bald.

Dr. K brushes off the tiny flecks of tissue still stuck to my cheek, “Oh, Lori,” she does a little tsk tsk with her tongue, “we sure put you through it, didn’t we?” She tells me to go ahead and pull my shirt back down while she goes to get Dr. L. “I would like her to see this if you don’t mind?”

At this point in time, baring my breasts for another nurse or doctor is no longer an issue. Much in the way my modesty flew out the window with each baby I had nursed. My first born and I would make a comical scene with the baby blanket over my head so that we could privately nurse in public.  One big nursing tent.  By the time baby number five, the last, came along, I was whipping up my shirt, exposing everything, to nurse while standing in the grocery store check-out line. I wasn’t about to lose my place in line.  Not after shopping with five kids.  Who cares if anyone saw my breast.

So, what’s one more doctor that I have yet to meet asking me to lift my shirt?

I fiddle with the thread that is fraying at the bottom of my shirt. It is old and loose. Like a favorite pajama top. It feels good. Worn. A bare film over my bare breasts. The burn is too bad for anything tight or for any bra wearing. I look down at my hands and see new nail growth. In spite of the radiation burn, there is new growth. In the aftermath of a forest fire, a tiny tree begins to bud. My growing nail buds feel like this. I am happy as Spring to see them, even though I’ve already learned to do without fingernails, hiding paperclips in several inconspicuous places around the house. The paperclips do the duty of fingernails.  I grab the paper clip I have attached with a leather strap to my purse.

I’ll just use this to clean under my new nails while I wait.

The two ladies enter. Two radiologists. Dr. K enters first with her little legs and short black hair curling around her face exposing the red dot on her third eye. Everything about her says doctor. She even wears the white coat and stethoscope.  Dr. L towers over Dr. K.  Nothing about this woman spells doctor.  Her loud German or Russian accent, I can not tell the difference, booms over the top of Dr. K’s head.  She wears loud, attention grabbing clothes. Tight skirt over gray, mesh stockings, high heels, flowery blouse and bright yellow cardigan sweater.  Something seen in a fancy dress shop, not in a professional office.  Certainly not the usual doctor’s attire.  Her blond hair, done up in an old fashioned French twist adds to her stature.  Clearly, Dr. L is the boss of this place.

I am lifting my shirt before they even close the door.

I watch eyes widen. They both take a step back. In unison.  A practiced dance step. Only, both doctors agree this is something new for them. “You probably see this all of the time, right?” I am looking for confirmation that my burn is not really so bad.  Dr. L is slowly shaking her head back and forth.  A sort of disbelief gesture. Dr. K answers for them both,

“No. This is the worst I have seen in my career. In in in, both of our careers?” She looks to Dr. L for an answer.

Dr. L just keeps shaking her head back and forth as if in a trance, “oh, oh, right, right.” She looks to Dr. K, eyes still wide. “Aquaphor, she should be putting Aquaphor on this.” They both nod. I say I am. We stare at each other a bit longer.  Dr. L watches tears stream down my face as I dab at them with the same wet spit-wad of a tissue.  “She is not crying”.  Dr. K explains to Dr. L, “it is just the chemo.”  She looks back at me as she is turning Dr. L around, “you can put your shirt down.”  They scurry out of the small room like a couple of kids who suddenly realize that playing with matches actually does start fires.

“Put the wet stuff on the hot stuff…..”

Dr. K comes back in. Alone this time. “As soon as we let this rest a bit,” she is sitting in her rolling chair now and facing me. Close. Dr. K grimaces, “We will need to schedule a few more rounds.” She winces, “Boosters.” I am not alarmed, but I ask, “is this because the first round did not work?” I do not know why I am asking. I know with my ‘Knowing like a feather perched in my soul’, that it did, in fact, work.

I know that the cancer is gone.

“No, no. This is something that I had planned. Although, I did not plan on burning you quite so bad.” I think I hear her say ‘damn chemo’ under her breath. But, I may have just imagined that part.

I know I am not imagining the sadness in her eyes.

I tell Dr. K that it is okay. It is not so bad. This stuff passes. I show her my new nails beginning to stretch up the nubs of my fingers. I pull back my hat and rub my head for her to see the new sprouts of coarse little hair buds. It all passes. We are on a journey and this is just a bumpy part of the road.

This new hair growth is different than the first time it started growing back. This time, I don’t have fear that cancer is sprouting along with them. It’s just not there.

I tell Dr. K that it has all been worth it because the cancer is gone. And, that she can do another ‘booster’ round if it makes her feel better. “don’t worry,” I say as we exit the examination room together, “the cancer is gone but, I will just keep coming so that you can keep your job.”  We both laugh.

But, I actually mean it.

Watching my boys so happy to be performing is the most healing remedy. Think I will go get a Legoland shopper’s pass.  A free pass into the park for one hour of shopping.  And,  I’ll just peek at another Big Test show.

Maybe even shop for a new coffee mug for Dr. K while I am there.

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The youngest brother giving the oldest brother a difficult time! Nothing new.
Maybe this isn’t really acting after all!!!!

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Trevor takes a turn at playing Vern. Chris as Chief and Michael as Chef Basil.
Three clowns for sure.

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They ‘wet his pants’.                 I am thinking I would not mind getting the wet stuff on the hot stuff this way right now!

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My boys. My super heroes.
This is how I heal.
Laughing.

Hope is a thing…………

April 11, 2012

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Let Hope Fly

Hope is the thing with feathers

That perches in the soul

And sings the tune without the words

And never stops at all.

~Emily Dickinson

“That perches in my soul”.  I love this line.  There is a Knowing that perches in all of our souls.  It may be as light as a feather. And, maybe that is why we sometimes have trouble listening to this Knowing.  But, it is there.  Singing.

This is how I birthed and how we have raised our children.

Listening to this ‘Knowing’ in my soul, rather than what society was telling me.  It is why we ended up home-birthing and home-schooling. It is what keeps me calm and gives me trust.  Hope when one of the kids appeared to not meet the proper criteria on the scale of expectation created by society.  It is the thing that perches in my soul.  Light as a feather.  I listen.

Maybe this is how I am healing from stage four breast cancer now.

Well, this along with the chemo and radiation that have my whole upper left torso completely burned and blistering. And, along with the juicing and raw foods. Those delicious colorful leafy healing foods. And, of course, along with my guides and angels.

I miss Michelle. An angel on this sweet Earth.  She has already been gone for nearly two months.  Our phone calls are better now.  We are past the first month of those dreadful skype calls.  The calls that came everyday with fears and tears.  Calls where I not only listened to her but could see her misery. Her dismay in finding herself in a foreign country. Alone in a studio apartment no bigger than the bedroom she so recently left empty in my home. Alone. She cried everyday for the first two weeks. “I wish Trevor made it into the show too.  He was so close. One of the top three.  Why didn’t he make it too?”  She would get the words out through sobs, “then, he would be here with me now.”

“I just want to come home.”

Skyping makes these far more than mere words. It’s one thing as a mother to just hear these words over the phone. Skype lets me see her. I am not sure I like such modern technology.  I am miserable too.

And I can’t wipe away the tears that I see streaming her face.

The song in my soul tells me she is doing the right thing.  The song without words.  I just know.

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This is Knowing, with feathers, who perches in my soul.

 “No.” I tell her. “This is a good thing. Hard. But good.” Trevor did not get the show in Japan. “And, though that seemed bad at the time, he ended up getting Cirque de la Mer again, stunt performing in the San Diego Opera-Moby Dick, and tramp wall show at the SD Zoo.  These are all great for Trevor.”  I remind Michelley of the Taoist story her daddy used to tell them all whenever they thought something bad just happened to us.  The story of the old farmer whose only response to any news, good or bad, was the same;

“We shall see.”

We thought it was bad, sad, that Michelley made it but Trevor did not.  Especially since he was the one who researched the audition and thought about doing that show for over a year.  We forgot to say, “we shall see.”  Trevor is in a far better place right now and could not have done this if he was in Japan.  “Besides,” I tell her, “something tells me that you need this experience on your own.”  I see myself in the little screen that sits over the top of her beautiful face on my laptop screen.

I try not to keep looking at myself when I talk to her over skype.

It makes me so self conscious. I check my teeth for spinach like I am looking into a mirror. She mimics me and laughs. Skyping will take some getting used to.  It will need a new set of proper etiquette, yet to be written. I try to stay focused on the conversation but it’s so hard to do.  It’s like talking to someone who has their back to a mirror and all I see is myself. “Besides, this experience is going to be life-changing for you. It is exactly the right thing for you at the right time. You will be fine.”

She says, “We shall see.”

I say these last four words with confidence. Yet, underneath this air of confidence the words are whispered more as a prayer of hope. Oh dear God I hope she will be fine. Let her be fine. During those tearful conversations I would find myself wondering……

How long will it take me to swim across the ocean?

I am just on the other side of the Pacific. Almost a direct line to Osaka. I look across my horizon when I stand on the pier. I like knowing she is just beyond this view. Fine. Doing fine. Momo used to tell the kids that whenever she missed them when she was back home in Florida, all she had to do was look up to the moon and the stars and know that they (the kids) were under the same big glow. “I see the moon, and the moon sees me…..”

I would say this to Michelley now, but, I know she would think I am being corny.  Already, she is doing fine.  She sends me a photo of herself.  Performing in the rain.  Smiling in the rain.

She is fine.288138_293371067428810_1621713322_o

I not only miss her, I am in a little panic. Did I teach her enough? The important stuff. Like, how to cook a meal, how to wash clothes, how not to get kidnapped. I know we taught her how to do gymnastics and how to brush her teeth, I remember doing that.

We just get so freaking busy living life. And in my defense, there were five of them.  The only thing I know for sure that I covered for each one of them was where babies come from.  I only know this, because to this day, I still ask if I had had this talk with him or her yet. I always worried that I might have told one child twice and then left one of them out of this little fact of life.

But, I never ask them if I covered any other important ‘how to live life’ topics.  Well, except, maybe to tell them that it was okay to be gay.  Another repetitive lesson.  I wanted them to be sure that if they happened to be gay, I would still love them to the moon and back.  So, this question, I know for sure, I asked each one of them.  Often.  Hundreds of times over their young lifetime.  Why didn’t I make sure I taught them other life skills?  I wish I had done a check list for raising my kids right. Maybe I should not have just listened to that thing with feathers perching on my soul, singing without words.  A song with words may have been a wiser ‘Knowing’.  Michelley’s not just down the road a piece so when she makes a mistake she can run home and lick her wounds. She is 6078.49 nautical miles away.

That is one big ocean between us.

I dig deep to my ‘Knowing’ with feathers.  I find Trust is also a thing. Perching right there beside Knowing and Hope.   I have to just trust at this point. Trust that Greg and I have done enough in raising her. Trust that she is part of this big beautiful universe. A universe that knows exactly what is right for her. Trust that she has guiding angels. I know that she listens. So, now I just have to trust.

Michelley sends me a photo of a meal she just made for herself.  She thinks it is chicken.  Shopping in Japan without knowing how to read the language can be a little surprising.  I see spinach and tomatoes on her plate and breathe a sigh of relief.  It is not a meal made from Doritos and Top Ramen.

I just hope she knows that poultry should not be eaten raw.

To name a hero…………

April 6, 2012

Sometimes super heroes have capes. Sometimes super heroes have webs shoot  from the palms of their hands. One thing that all heroes seem to have in common is perfect timing. They show up at just the right moment. The crucial minute that determines life or death. The moment that lives between despair and hope.

I had always hoped for a knight in shining armor. Someone to save me from my stupid mistakes, my poor decisions, my lack. A knight to come along with a bag of gold. Well, a bag of dollar bills, actually. To pay off my debts, buy me a house, a car, and a sewing machine. I like sewing.

A knight would fix everything that I had screwed up. Things that I now see weren’t ever really screwed up. It was just scenarios I had created by focusing on lack. Then, pulling on pity strings and waiting for that dang knight to show.cropped-13.jpg I thought I was defeated. All of this pales in the shadow of a cancer diagnosis. A true wake up call. And of all times, I stopped wanting pity. No longer expecting a knight in shining armor. Probably when I need one the most. This was serious. I knew that I needed to make changes. But, occasionally, I’d still look up to see if a white knight was on the horizon. What I did not know is that I would get a hero.

And, that sometimes, a hero can be a hero even before he or she is born.

We just found out. It’s a boy. This baby boy who had the perfect timing of a true hero. Who stands on that thin thread between despair and hope, balancing like a practiced tight-rope walker, fists on hips, red cape bellowing in the wind. This little hero who puts a stiff arm up to the side of despair and takes my hand into hope. This little boy, yet to be born, has no idea what a true hero he is with just being.

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Maybe we all are true heroes. If only we could just be. Just be. Nothing more. Just be who we are. Stop asking what do you want to be when you grow up. Start being. That’s enough. The people that I love the most, I love because of who they are, not because of what they have done. And, in this moment, I am finally realizing how this unborn child has already taught me this most important lesson. I hadn’t painted since high school.  But, I wanted to paint a little hero series for him.  Conceived at the most perfect time.  He is a hero just by being born.

A perfect little hero.

photophoto (2)His name will be Grayson. Grayson Chance. But, we are not to tell anyone yet. Cassie doesn’t want to be influenced by other people’s opinions. This is his name. And that is that.

I hope I can keep my mouth shut.

There is meaning behind each name. Chance, because it takes willingness and courage to take chances, to take risks and to not be afraid of failing. Failure is necessary and part of succeeding. The more you chance, the more chance you will no longer fear failure. The more chance you will succeed. Cassie picked the middle name of Chance for this reason. Justin picked Grayson for other reasons.

Justin is a life-long fan of Super Heroes. Particularly, Batman. And, Justin chose a name that is strong and meaningful.  Grayson.

I looked it up in Wikipedia: “Richard John “Dick” Grayson is just a fictional character, a superhero in the DC Comics. He was the youngest in a family of acrobats known as the “Flying Graysons”. Dick watches the mafia boss kill his parents in order to extort money from the circus that employed them. Batman takes him in as his legal ward, and later, Dick becomes his partner~Robin. He is the one that Batman cares about the most.”  So, there it is.  A little hero is named.  Grayson.

Grayson Chance. My own personal super hero.

Cassie decides we should prepare the nursery.  For my birthday.  Which, happens to be this Sunday. She wants me to paint a mural.  I know exactly what I want to do for it. I’ll go up on the train at six thirty tomorrow morning. I just have to time the painting so I am done by Sunday. To be back by Monday so I don’t miss radiation. And chemo. The duo that is setting me on fire. I am watching Shirley Maclaine and Jack Lemmon on the lobby tv at the radiation center. This might be another day that I stay to watch the ending. A new, fun habit. I think I am the only patient to take their warm welcome to heart. Maybe wearing out the welcome mat a bit.

“Lori Rubino, cooooome oooooon dowwwwnnnnn!” It’s Emil. He’s on the intercom. There is a camera poised on the lobby. He sees me watching tv, sipping coffee from their paper cups. Once I slide my card upon arrival, my information scans into the system and let’s the techs in the back know I have arrived. Still, I like to go to the clipboard and also sign in. This way I can say hello to Sharrone at the front desk. Then, I wait to be called back.

Emil turns it into a game show.

After going to the small locker room, hanging my clothes and slipping into the hospital robe, I wait again on the little chair by the locker room. This is when Emil physically comes to get me. And, usually in some surprising way. Today, he is waving a sticky note in the entrance with a smiley face. My flag to “Go”. I walk in to the treatment room to see birthday signs hanging from the robot arm.  “Happy Birthday Grandma Lori.”  I hop onto the cold metal, the techs get my spongy thing, the ice-cold sponge pack to fit across the area we radiate. It intensifies the radiation to the area. There is no getting used to this part. I squeak every single time it hits my skin. Particularly now that the skin is burned. Today, Tiffany pauses before laying the sponge. They all come to take a look.

This burn is getting bad.  Really really bad.

Emil wonders how many more they are going to be able to do. Dr. K is out so they call in one of the other doctors. I’ve never seen him. He tells me to go get Aquaphor. That’s all. We continue. We talk as we go through the routine. The, now, rote routine. I lay on the metal, someone puts the triangle pillow under my knees, someone else puts a warm blanket over my legs while someone else puts the cold sponge on me. Emil laughs at my reaction. Every time. They position things, check placements. I grab the handle bars and wiggle around several times. Always saying, “wait…wait..there…no…wait..okay….. now….yes…okay….oh crap….my nose…..wait….okay….now”. We carry  on a conversation about each others lives all the while.

I think of how Momo would.

“So, how is Cassie?” Tiffany always asks. The memory of the pain of childbearing still so recent in her mind. She usually asks about the pregnancy. I tell them it’s a boy. Emil wants to know if they have a name for him yet?

“Grayson Chance.” Oh my God. It’s the first time anyone has asked and I didn’t even hesitate. Oh well. I figure they will never get to meet Cassie. So, they can’t try to influence her.

“Grayson?” Emil fiddles with the remote control adjusting my bed alignment with the red light lines across my body. “The Flying Graysons,” he says and nods with approval.

“You know about the Flying Graysons?” I am amazed.

“Well, duh.” That’s it. That’s his answer. “Grayson is a good name. A strong name. A little super hero.”

‘Oh, Emil’, I think, ‘you know it.’  He turns up my music, hits the lights and the switch to close the door.  Last one out he laughs, “better than calling him Robin!”

I don’t even watch my handsome dance partner, the robot arm, this time as he works through the maneuvers of our dance number. As I usually do to make sure he doesn’t miss a beat. This time, I close my eyes and think about the nursery mural I am going to paint.

I think about how grateful I am for the little heroes in our world.

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She paints the crib.
I paint the wall.
She sings while we work.


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A little message for my little hero;
Grayson’s Grandma loves Grayson H.

Goodbye to Precious Moment…………..

February 16, 2012
I drive so that she can just pop in and out of the car, gathering last minute items to stuff into her travel bags. Without warning, we’re hit. Right there in the parking lot. Broad-sided on my side of the car. I swear. My usual reaction to a surprise catastrophe.

Like a drunken sailor. I swear. I don’t mean too. It just happens. I do this on wild roller coaster rides, too. With little six year old boys staring at me as we swoop, swirl and jerk around. These rides my kids push me onto, because they think this is funny. I have to apologize every time a ride ends, and tell the kids that it’s not nice to use such bad words. They shouldn’t do this.

This time, it’s pretty tame. No F-bombs. Just an, “Oh, shit. What the heck was that?”

I didn’t see it coming. The girl just crashes into us backing out of her parking spot. Getting out of our cars, she has swear words of her own. Loudly. And, she does drop a few F-bombs on us. It is her fault, and she is the one pissed off. Royally.

Michelley and I get out and examine the damage. In her usual manner, Michelle tries to calm the young woman. The crazy woman. We exchange looks. Raise eyebrows. Take a few steps backwards. Yup. We decide. She’s crazy. Clearly, this is not that bad. Michelle’s car has a little dent. A few scrapes. The crazy lady’s car has…..nothing. We look again, both of us, and can’t find anything wrong with her car. She’s on her phone already, freaking out with a body shop about getting a paint job appointment and how much it’s going to cost her. Between her phone calls, another, to a boyfriend, we manage to get her information. Michelley tries to calm her the whole time, telling her that even though it is her fault, it’s not that bad. She’s not upset about her car. Not to worry.

That’s Michelley. As a little girl, her little rose-bud lips and super huge eyes would remind me of the Precious Moments figurines. 13369_1197845040385_1998013_nShe became my own Precious Moment. My nick-name for her. The other nick-name, the one everyone who knows Michelley so freely used for many years, was given to her by her daddy. The Bomb. Things exploded anytime she walked into a room. Broke. Crumpled. Disintegrated. Just with her presence. So, she became a precious moment with a powerful presence. Bomb.

A globe I bought Michelle when she was very young.  It looked just like her at the time.

A globe I bought Michelle when she was very young. It looked just like her at the time.

Over the years, she not only continued to look like a Precious Moment drawing, Michelley became a precious moment. Like this one. Here we are, the clock ticking, counting down the minutes to a plane ride to Japan. A deadline we can not change. A departure that will last a little more than a year. She is not ready. Not packed yet. We are under pressure and stressed. But, in this moment, this car crash, all she can do is comfort a stranger.

We make a quick get away. We are going to sleep-over at Cassie and Justin’s. She has to work and can’t come to the airport with us. Which is just as well. I think Cassie would make the biggest, sappiest goodbye scene at the airport anyway. Her carrying on would draw attention, raise concerns. We’d probably all get arrested and detained. Instead, we will have a sleepover. We can have one last game night and they can say goodbye at the house.

But first, we have to pack.

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But, every time I come in to check on her progress, this is how I find her! She is determined to group and print out every single photo she has ever taken of her friends and family, so she can make a photo album to take along.

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This is serious. Over-whelming. Impossible to let go.

Like in a fashion my two older sisters taught me when times got desperate and there is a deadline to meet. Set a timer.

My parents would leave us home alone with a long list of chores to accomplish before they returned. Of course, I was in a panic the entire time. My sisters would play. Go outside, do tricks in the yard, take naps on the living room couches, the ones we never sit on unless company came over. I do not break rules well. Even now, I am short of breath at just the thought of this behavior. I couldn’t do all of the chores by myself. So, I would wait and moan and pace. And then, just thirty minutes before the parents arrival time, Pam would go to the stove top timer. She’d roll the dial back, look over her shoulder at Chari and me. We’d hear that first click on the timer and Pam would yell, “Goooooooooooo!!!!”

We could clean and finish the chores that should take three of us two hours, all within that thirty minutes.

I tell Michelley, “That’s it! I am setting the timer and I will help you pack. I will print all of your pictures after you are gone and mail them to you.” And, just as my sister Pam had done so many years ago, I scream gooooooo! Michelley just looks at me, hugging her yellow ducky and her dog, Reese.028

I pack. She cries.

We gather into Cassie’s small living room. Each with our own blankets and pillows. A real slumber party. Even though we try to play a game and we do share a few laughs, the atmosphere is tainted. The reality of a dreaded departure now all too real. 048395676_3125162102107_1732762182_n075

We manage the night. Wall to wall bodies sleeping across the living room. Holding hands every where. Why did we think this job in Japan was a good idea? I just want to hold her close and never let go. Maybe I will pull out the Cancer Card right now. Use it to hold on to my baby girl. My precious moment.

But, even I know this would be wrong.

This is it. She says her goodbyes to Cassie and Justin at the house. The two sisters hold each other for a long time. Silent. There are no words for this moment. Justin takes over and holds Cassie. Cassie holds her belly likes she is cradling their baby. We watch them standing in their doorway as we all drive away.

We make it to the airport pleased that we are on time. Proud that we actually got everything packed in the allotted two cases. Everything she will need for a year.418824_3125165662196_1570415712_n (1)

All of us wait together with her at every step. We huddle over the ticket counter. We gather in a long line for the first security check in. This is where we begin our goodbyes. Michelley starts with each individual. We watch as she hugs, whispers, pats cheeks and holds on. Tanner, her boyfriend, is trying to hold it together. Not successfully. Michelley kisses him. It doesn’t even matter that we are all standing there. Watching.

Aubree is crying. Quietly. Even though she is Trevor’s girlfriend now, she was first Michelley’s friend and co-worker. They love each other. Michelley wipes away Aubree’s tear and cries as they hug.

She goes to her baby brother and wraps her arms around his neck. He is so much taller than her now. These two best friends since the day he was born. He strokes the back of her hair and tells her she will be okay. She presses her face into Christopher’s chest and wraps her arms around his waist. This brother that she so recently reunited with. A brother she couldn’t wait to see after each gymnastic meet, running through the doors, jumping on him to tell him every last detail. Even, though, he would always feign disinterest. He whispers in her ear. There is a tear in his eye. I am okay. I am not falling apart, even when she jumps up into Trevor’s arms like she used to as a four year old, arms around his neck, legs around his waist. He holds her this way for a long time.

She looks at me. How can I say goodbye to her? I wait for Greg to lighten the burden. To make a joke. He doesn’t. This is hard for him, too.423692_3125162422115_5271528_n (1)He whispers, “Goodbye, Bomb.”

Everyone snaps up. We look around like a bunch of thieves hiding the loot. Praying no one outside our circle heard him. We had warned Daddy and Michael all night about inappropriate airport jokes. But, we forgot about warning him against calling his baby girl by her nickname.

The burden was lifted. There is laughter again. We can do this. She blows kisses. We smile. And, that’s it. She walks through to customs. Our group left standing alone, a bit bewildered. Not ready to move yet. So, we just stand there.

Suddenly, we hear her. She is yelling. “Wait, wait, wait!!!” We see her. Running back to us. We want to stop her. If she comes out, she will have to go through the whole process again. And, possibly miss her flight. Everyone puts their hands up, like a stop sign. I am particularly good at this, seeing how I was a third grade cross-guard. But, she doesn’t stop. She comes right back out of the customs clearance. Right back to the fold.

“I forgot Ducky!”

Well, we were there in time. Now, we fear, she will miss her flight. Ducky is in the car. Ducky, the Christmas gift from Cassie for the sole purpose of bringing comfort to her whenever she might feel lonely in Japan. There is no way Michelley is getting on the plane without him.

Michael and Tanner start to sprint out the door. We wait. This is awkward. We’ve already gone through a rather dramatic goodbye scene. What do we talk about now? We all turn to face the window. The window overlooking the parking lot. There is a brick wall, but, we can see Michael and Tanner’s heads bobbing up and down just above the wall. Like a cartoon, or a bit from the Three Stooges, we see their two heads turn around and bob back in the other direction. Every now and then, we see Ducky, too, as Tanner pumps his arms in the full-speed run back to the terminal.

Ducky under her arm, she is ready. This time, the goodbyes are quick and sweet. No tears. We are running out of boarding time. She turns to enter through the custom gates again.

They are closed.

We are directed to another gate. This requires a full-speed run of all of us. This is a scary looking group. Ducky leads the way. We arrive to this gate in another long line. Panic has entered the room. A policeman comes to tell us that only the passenger can wait in this line.

We back up, toes on the yellow line we are to wait behind. We all just watch her inch forward. Finally, she makes it through a gate and we are behind a glass wall. Faces pressed against it.

We can’t hear the security guards with her, but, we can see she has already made friends. They smile and wave to us. They ask her questions and point in our direction. She nods and points at each one of us, too. We are blowing kisses, dancing, making peace signs and holding each other. And, then, she has to move on. We wave as she disappears behind a wall, only to appear again on the other side of this.

We cheer and then, frantically wave some more as she disappears for good down the airplane ramp. The security guards wave back at us. As they wave, I see Michelley, my precious moment, her daddy’s Bomb, she peeks her face back around that wall. Her and her Ducky.

We blow kisses. Then, I see her mouth the words, “I love you.” And she is gone.

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Rocking down the isle……

February 3, 2012

Here I am again.  Reclining.  Sinking, a not very sick body, into the rich brown leather of my doctor’s chair.  It’s the first break I have had in two months.  Though, it is forced upon me via Herceptin dripping into my veins as I write this.

Still, it is a welcome break.

Today is the first time I will get Herceptin only.  Goodbye Caroplatin and Taxotere.  No more of your harsh behavior.  Your wreaking havoc.

Already, I see a problem with dropping these two drugs from my chemo treatment plan. With the mixture of receiving all three drugs I could easily spend the six hours it took to drip.  Now, with just Herceptin, I am lucky to get just an hour in this chair.

I will miss the big bag of ‘to-do’s’ that usually accompany me.  Moreso, I will miss my chair-side companion.  Now that the worst is over in chemo-land, it doesn’t make sense to force someone to come along for such a short time in the chairs.  Maybe this is good.  Maybe it is time I use my chair experience to reflect.  Alone.

So much has happened in this past month.  I couldn’t even keep up with keeping a journal. So very much like the day Christopher Alan Rubino was born.  That same afternoon, still in the hospital with a sleeping baby in my arms, I opened my newly purchased journal.  The one I bought just for this purpose, wanting to capture and record the remarkable experience of birthing and parenting.  I wrote,  “I want to write.”  That’s it.  That is all that was ever written in that most important journal.

I want to write.

Instead, I believe I fell asleep.  And, then, I started living as a mommy.  Full swing.  For twenty-some years that journal stayed empty.  Except for that one sentence of course.

This past month feels the same.  My list has finally bowled me over.  I am already asking Nurse Pam if I can just stay past the last drip from my IV bag. My bag is already half empty and this recliner feels way too good.  So does writing again.  Writing.

As necessary as the drugs.

Mom and Dad had arrived for a second visit from Florida with my sisters, Chari and Pam. They came for the wedding and to help.  We painted the glass jars that held candles throughout the wedding garden and clubhouse, with little hearts and love quotes. I think I use every event and holiday as an excuse to do crafts.  I also made the cake topper—in honor of Justin’s favorite super hero…417871_10150643320993417_80423341_n

Cassie and Justin Wedding 012

Cassie and Justin Wedding 013

I am happiest when doing crafty things with our hands, while sitting around my dining table.  Conversations seem more free and natural this way.  I am loving this time with them.

Chari

Chari, like Mom, works seriously and diligently.

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Mom concentrates.

of course, Pam always thinks Dad is funny!

of course, Pam always thinks Dad is funny!


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We finally took away the jars from Dad. He was doing his own thing on them, not entirely wedding appropriate.

Also, during this past month among all of the other normal wedding preparations, we had a bridal shower, Michael’s call-backs for Hook and I’ve had my first consultation for radiation. I love Dr. K. We talked about our families, children, and the importance of a good coffee mug.  A mug with just the right weight and the right color or design.  This lady is smart.

We talked about Trevor’s break up with Shannon and of Dr. K’s daughter, nearly the same age as Trevor, of how, like Trevor, all she really wants is to have a real and loving relationship.  We talked about Cassie and how the wedding is just five days away.  We talked about Michael and how theatre is saving him.

January has been a good month.  Michael got Hook.

And, Cassie got hitched.  The wedding happened.

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Cassie and Justin rocked it.

Literally.

This was no ordinary walk down the isle.  Well, this is no ordinary couple.  I guess it’s safe to say that this is not an ordinary family, either.  “Besides,” Cassie said as she rubbed her belly and kissed my cheek, “there is so much to celebrate”.

She decides that we will be rocking  down the isle.

No, typical did not fit into Cassie’s desires for this wedding day.  Although, she did draw the line and refused to let Justin enter the way he really wanted to; dropping Ninja style from out of the tree over-hanging the altar.

The three brothers kicked it off with a choreographed dance number.

The Rubino Brothers

The Rubino Brothers

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Yup.  The mother of the bride!

Yup. The mother of the bride!

Then, the wedding party danced in.

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Michelle in the Maid of Honor’s dress that she begged Cassie to allow her to get…..more fitting to her personal style!
Cassie made sure that everybody was happy at this wedding!!!



Here Comes the Bride!

Here Comes the Bride!

Her brothers danced back in order to “walk” Cassie down the isle.  As the Reverend Dr. Greg Rubino Daddy was Officiating the ceremony, so she didn’t have daddy walk her.  He and Groom Justin waited at the other end.

I would love to have seen the two of them rock down the isle.

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Justin's nephews, Honey and Cooper bring the rings on teddy bears.

Justin’s nephews, Honey and Cooper bring the rings on puppy dogs….with the agreement that if they bring rings, they get to keep the puppies afterwards.

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The Halliwells

The Halliwells

Nurse Pam unhooks my IV from the port in my chest.  She sees my computer open on my lap.  My tea is still steaming from the cup beside me.  Pam looks around the chemo room, it’s nearly empty, “Go ahead,” she smiles at me, “stay as long as you’d like.”

I think I’ll just close the laptop and close my eyes, too.

Just for a little while.

List this……….

January 14, 2012

I roll off my yoga mat just as the morning light gently opens my bedroom curtains.  The first thing I do is reach for my cell phone.

Checking in with my to-do list.

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Something I have not had to do since running Cat’s Pajamas Gymnastics.  All while I was either birthing, nursing or both.  And, while Greg and I built the business, raising the kids together.

I couldn’t function without a to-do list back then.

Today, my list is so long, I am not sure any normal person can begin to accomplish it all. Let alone me. A breast cancer patient on chemotherapy. I am a disabled person. Not allowed to work.

Yet, suddenly, I have a to-do list.

Cassie and Justin’s wedding is fifteen days away. Just eight weeks and nine days from proposal to wedding. With a few interruptions along the way; Thanksgiving, Christmas and New Years. This, along  with no budget, make the planning doubly challenging.

So, I list this. The ‘we’re going to have a wedding’ list.

Michelley leaves for Japan February 17, just one day before Cassie’s twenty-sixth birthday. Packets arrive. Her contract. There is paper work to be filled out with deadlines to meet. We have to come up with a winter wardrobe that is non-existent in San Diego, (unless Uggs are considered true winter boots?) but absolutely necessary when arriving in Japan in the middle of winter.  We are learning how to pack for a year and fit it all into the maximum two bags allotment set forth by the housing Universal Studios will be providing her. This is like a scavenger hunt that never ends.

So, I list this.  The ‘Michelley moves to Japan for a year’ list.

Christopher has won auditions into the Second City Conservatory. He now has shows we can and want to attend.  I list this. Trevor just received a contract for a second season with Cirque de la Mer. I don’t need to do much for him.  He is set.

However, Michael still works rides at Lego, as boring as this is, he never misses a day, never late, and offers to fill in for anyone and everyone who calls in sick. This happens often. I am his driver.  To and from Legoland everyday.  Plus, he is auditioning for Capt. Hook in Hook.  Another play. He has done back to back plays for the past few of years with only a few weeks between productions.

Michael's first play production ~Oliver.

Michael’s first play production ~Oliver.

I drive him to all of this. I like this time with him in the car alone. I will miss this when he gets his license.  For now, I am happy to drive.

So, I list this. The ‘to and from’ list.

I have always taken the production photos for each of these shows. It’s my hobby.  My friend, Michael Wallot is the director and he is also part of a singing group. He asked if I’d take a few photos of them for an upcoming event.

So, I list this.  The ‘Fun photos to take’ list.

While shooting this group, I meet a woman who says her father is dying of cancer. Her long-time boyfriend just proposed so that they can be married while her father is still able to be at her wedding. They only have a couple of weeks to plan and wonder if I could do the wedding photos. They don’t have a budget. I understand this better than anyone. I agree to do them. This wedding takes place February 11th.  I need to make another list. A list real photographers use for weddings. I google this.

So, I list this.  The ‘shot list–photos never to miss when shooting a wedding’ list.

There are doctor appointments on my list too. But, these seem such a minor part of my life right now. I put them at the bottom of my priority lists.  Dr. B wants to draw blood.  I am doing well, though I am still fatigued most often and my skin makes me look like I am ninety years old. I am doing better than he expects. I feel sure of this. I think I now know my own cure for cancer.

Make lists. Get busy.  Live.

I just had my last chemo of the harsh Carboplatin and Taxotere drugs. Next time, on Feb. 3, I get Herceptin only. Even though I have an appointment with Dr. K, the radiologist just five days before the wedding, Dr. B thinks we might just pause everything. See how I do on Herceptin only for a while.

I like this idea.  I list this.  Pause to heal.

I also have appointments to meet with Breast Cancer Solutions, a non-profit group. I will meet with the Jewish Family Center, even though I am not Jewish, I am told they help women with breast cancer. There’s an appointment with the Social Security office.

I list this.  The ‘nap when you need to’ list.  Then, go on appointments.

There is no income from me. So, I must meet with any and every organization that can help us. American Cancer Society doesn’t offer much help.  A gas card.  Which I am grateful to have.  We wait to see if I can get disability insurance.

This morning, I am looking for something that is accomplished on my list. I want to put a big check mark across something to show it is done. Complete. Finished.

I also look for something on the list that is easily tackled. I am tired. I need something I can start my day with that doesn’t require too much effort. Sometimes getting started is so hard. Then, I see it. This is what I will do first today. There have been a few stragglers that just won’t fall off, and they are long and annoying. I feel good about starting my day with this particular to-do.

Yes, I did list this…..’Shave my head’.

Ah…yeah…about that knight……

December 31, 2011

I don’t remember ever having a story read to me as a child.  I don’t remember any children’s books in our house.  My dad was an avid reader.  My mom may have wanted to read, too.  I don’t know.  She was probably too busy and tired from working a full time job outside of the home, while raising four girls, as well as taking care of her retarded sister in our home.  Attending my sister’s high school functions, both parents were “Band-Aids” for the school band.  All while keeping an immaculate five bedroom, three bath, tri-level home with a two tiered backyard garden and a pool.

My mom was a rock star.

And, my dad could read books thicker than my right arm.  There must have been books in the house.  I just don’t remember seeing them.  I discovered a love for children’s books somewhere between becoming a teen and becoming a mother.  Yet, long before ever collecting these fairy tale books, I have always known about this one guy.

The Knight in Shining Armor.

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It occurs to me since being diagnosed with cancer, that I have always wanted a Knight in Shining Armor of my own.  I have always been waiting for this knight to show up.  I knew that all I needed to do was pull a few strings and my Knight would finally arrive.

Pulling on the pity strings.  Oh, I knew how to do this.

But, this guy just never showed up.

Having cancer gives great pause.  My life does not stop here.  It merely pauses.  I have needed this pause to get the story straight.  It is time I tell myself the truth.

There are no Knights in Shining Armor.

It is kind of like the day when my mom told me the truth about Santa Clause.  She couldn’t imagine that I still believed.  After all, I was eight years old.  Oh, I believed.

I sobbed.  For hours.

Now, I am telling myself this other truth.  About the knight.  But, I am not sobbing. I’m over him.  Besides, if there were a knight in shining armor, then, he hasn’t seen battle or his armor would be all dirty and blood stained.  I should have figured that one out about Santa, too.  All of those Santas in the malls with their clean red suits.  A sure sign they weren’t real.  They didn’t have a stitch of soot on those suits.  Those Santas never saw a chimney. How did I miss that?  A knight without dirt and blood has never seen a battle and who needs an inexperienced knight when it is time to battle for your life?  No.

A Knight in Shining Armor is not coming.  And even if he did.  He can’t be my hero.

Maybe all of my life I have created situations so that a knight could come and save me. Similar scenarios would play over and over again like pages of favorite books.  Moments where we gasp for the heroine, and fear for her life.  Always her hand reaching and ready for the moment the knight enters and swoops her up and away from so much strife and grief.  I couldn’t figure out why my life would play this loop, and the knight never showed.

Until now.

Well, really, until a year and a half ago.  Where, instead of a knight showing up, I had a lump make an appearance. This is when it really begins to occur to me that there are no knights.  My little loop of self pity just got serious.  Pulling on pity strings can be dangerous. It’s time to put away the fairy tale stories and recognize one thing.

I have to be my own knight.

It is New Years Eve (day).  And when most people are making resolutions for a new year, I am taking a long hard look at this little story that is my life.  This resolution of mine is more like a revolution.  And, for me, this is huge.

Yesterday I read a quote by Deepak Choppra, M.D.

~”Complete healing depends on our ability to stop struggling.”

Yes.  I get this.  I have sensed this from the moment Dr. B entered the room and told our dazed faces that it was breast cancer.  The nurses seemed to immediately go into a new vocabulary for me.  Not just medical terms that I had yet to learn, but the most common terminology associated with the word-CANCER.  Words like: battle, fight, war against…

Words a Knight in Shining Armor might use.

Words we might hear him yell, that is, if we could understand him from within that armor. Words that I refuse to use.  Now, this makes more sense.  I don’t need this knight.  And, I don’t need his dang battle cries.  For, they would keep me battling.  Struggling.

This fairy tale ends today.  And it is no New Year’s Resolution.  It just is.

Acceptance.  Okay.  So, I have cancer.  So what?  I will mount my own white horse and trot along this path of spirituality.  I believe that is what illness truly is.  A pause.  A path, if we allow it, into a deeper sense of self and purpose.  Of spirit.  Spirituality.  And I accept.   Me and my horse, a white one, of course, will follow it.  Without fear.

For I have an armor of my own.  Though, it is used, dirtied, bloodied and dented.  It is an armor of truth.  Of soul.  Of Spirit.

And, of love.

Right now I am looking at Trevor’s “Goddess Guidance Oracle Cards” by Doreen Virtue, PH.D.  Yes, I borrowed them again.  With their bent corners.  A couple of them chewed around the edges from “Halo”, a dog he once had and loved.  These are like the fairy tale books I never had.  I shuffle them and pull one out when it feels right.

I pull out Ostara.   So beautifully illustrated by Wendy Andrew.

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The goddess of fertility.

“It is the perfect time for you to start new projects, access new ideas, and give birth to new conditions.”  I swear, this is the card that comes up.  On New Year’s Eve.

Give birth to new conditions?

Okay.  I will birth a condition of new health.  Good health.

And, I won’t wait up for that knight.

Of the stories we weave…….

December 30, 2011

She was mean.  Supposedly.  I don’t know, I wasn’t even born yet.  But, the stories of my grandmother always frightened me a little.  I have heard them over and over again throughout my life, yet, I probably still have all of the details screwed up and wrong.

Probably, I don’t remember the stories quite right because I did not want to hear them.

I was the most sensitive child ever planted on this Earth.  I am sure I listened to these stories in the way I watch scary movies.  Shielding myself behind a blanket.  One that I can still see through, of course.

I was so sensitive that I became the neighborhood side-show.  My sister Pam used to love to show me off.  All she would ever have to say to her friends was, “do you want to see my sister, Lori, cry?”  And, I would.  I could without a cause.  Right on cue.

I suppose it was kind of funny.

The stories of my grandmother weren’t.  I didn’t want to hear that my dad didn’t feel cared for by her.  Nor, maybe, even more so, I did not want to hear that her children did not care much for her either.  There is a story of how Grandma didn’t want to be a mom.  She was frustrated.  One day she announced that she was going to just go and drown herself in the lake.  Evidently, the children clapped as she departed from the dinner table.

I particularly did not like the story of when she took a broom handle to my uncle’s back. That was the day that he and my dad both walked out.  Moved away from home.  On their own.  My dad was just sixteen.

Whenever Grandma did come over, I just knew the stories must be true.  Where Grandpa had arms to hug and didn’t care how long I needed to cling ( I was very clingy once someone let me latch on), Grandma only had a pat for me.  A pat on top of my head. Then, she’d make her way to the couch.  Sit briefly and tell Grandpa it was time to go.  She had a dog to feed and crossword puzzles to finish.

He never wanted to go.

I secretly wanted a pudgy little grandma with soft arms and loving eyes.  I imagined her stealing me away for the day, just the two of us, off to her house where she would teach me to bake cookies and how to sew big warm quilts.   By hand.  We would eat the cookies still steaming fresh out of the oven and then she would listen to me talk on and on while we stitched away at our quilt making.  I wanted a grandma that made me feel special.  Wanted.  Important.

Years later, after having children of my own, I did learn how to quilt.  Though, Reita was not a grandmother, and was quite a bit younger than me, she was soft, pudgy and had loving eyes.  She taught me to hand-make quilts.  And, as I would stitch late into the night, those quiet nights when children were finally safely asleep in their little beds, I would think about my grandmother.  The only one I ever knew.  My mom’s mother had died when my mom was still a teenager.

Like me, that grandmother had breast cancer.

Now, both grandmothers are gone.  I had begun to think about those stories I had heard of my dad’s mother.  Stories that were woven into my life as if they were memories of my own.  As my own babies slept, I would create patterns in the quilts I was sewing and begin to realize that we weave stories into our lives that create patterns as well.  I began to remember that there were other stories about Grandma, too.  Although, barely a mere thread in the horror stories, there were stories that were glimmering.  Gold threads of achievements.

For my Grandmother, Fern Miles.

For my Grandmother, Fern Miles.

Stories that made me proud of this woman.  This woman who’s name was Fern.

Grandma was a writer.  A sports writer.  A female sports writer.  In the 1930’s.  Women didn’t work outside the home then.   Much less work in a man’s field.  She was not allowed in the press box with the other writers.  The male sports writers.  Grandma would have to stand outside the box and get information through the window.

Grandma knew Gerald Ford.  The man who was vice president of the United States and tripped his way into presidency.  She wrote for his campaigns when he started his political career in Grand Rapids, Michigan.  Our home.   And, somewhere in this family, there is a personal note hand written to her by Carl Sandburg.  I guess she knew him as well.

It made me think.  Maybe this woman, trying to make ends meet during the great depression, loved her children.  Deeply.  What mother doesn’t?  Maybe, she felt tremendous frustration for holding great talent in writing that she could never fully bring to fruition because she also happened to have bared five children.  Maybe, being a mother back then meant only that mother’s were to make sure the children were fed, and that they learn to be seen and not heard.   Maybe being a woman in those times meant birthing and cleaning with no hope of personal expression in any other way.  Particularly not in the man’s world of sports writing.

And, just maybe, my dad was a sensitive little child like I was.  Maybe he secretively wished for a mother that baked cookies, listened to him talk on and on, made him feel special and important. Wanted.

Maybe, the horror stories only seem worse when felt and seen through the sensitive child. It makes me want to heal that little child within my dad.  He must have been such a cute little boy, filled with emotion that little boys were never allowed to express in the 1930’s.

not my dad and uncle...but, what I imagine, as children of the 1930's.

not my dad and uncle…but, what I imagine, as children of the 1930’s.

I hold onto this thread of gold.  The good things that I know my grandmother must have held.  And, I continue to weave this into my memories quilt.

Greg and the kids had a quilt made for me this Christmas.  A most beautiful gift.

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It is baby blue and white with hearts at the center of each square.  The most beautiful part is how each square also contains a quote, hand-written by each of our five kids, by Justin and by Greg.

I cover myself daily with this quilt.  During the naps I still must take.  The chemo driven naps.  I cover myself with this quilt as I sleep at night.  Covering myself with the loving words of my loves.  I have used this quilt so much already since Christmas, I fear that the writing will fade and I will lose these loving words.  So, I will write them here in my journal.

“I love you because you make me laugh, and laugh, and laugh”…..~ Greg

“I love you because you’re my best friend through everything.”…~Greg

“I love you because you are joy, you are happiness, you are love.”…~Chris

“I love you because your smile brings light, your laugh breathes life, your embrace gives strength.”…~Chris

“I love you because you are my heart, you take life with a smile.  I hope to be half the mom that you are.  You’re my hero.  You always beat the odds.” ~<3Cassie

“I love you because you have always been there and I know that you always will be.”…~Trevor

“I love you because you have taught me to be positive in every step that I take.”…~Trevor

“I love you because you inspire me to be better in all aspects of life.”…~Michelle

“I love you because you love the ones who need it.  You accept the ones who don’t show it.  Your love knows no limits.”…~Michelle

“I love you because you have always been the best mother anyone could ever ask for.”…~Michael

“I love you because….when I am sad you know what to say and when I’m lost you know the way.”….~Michael

“I love you because you always see the best in people whether they deserve it or not…. You keep cooking….even after everyone has asked you to stop…You made Trevor!!!.”…~Justin

I wish Grandma had been given a quilt like this.  To know she was loved by her children.  Because, in the deepest part of my soul, I know that they did.

What child doesn’t truly love his mother?  No matter what.

As I cover myself tonight, I pull on the little gold thread that is the goodness of my grandmother.  Maybe she wasn’t the kind of grandmother I had wished her to be.  Nor the mother that my dad might have secretly wished for, either.  But, I will make sure the gold thread gets woven into the quilted memories for my children, her great grandchildren.  I will cover them with the healing of understanding that we are all just people trying only our best in raising the children we are given.

And, then, I cover myself with my own little healing quilt with it’s blue and white hearts.