The cancer club may be the first club I've ever really belonged to. Back in 5th grade, my classmates and I would form clubs, but they were more about excluding the kids we hated than they were about loving each other. Most of the time, I'm introspective and socially awkward (ie. Terrified of people and their possible rejection). I'm not a joiner. My shy kids are not joiners.
But here we are, in a club so tightly wound around the lives of the other members, so intimately familiar with each other's most painful thoughts and experiences, that we are committed to a lifelong membership.
We are the Cancer Club. Specifically, it's the My Child Has/Had Cancer Club. I like to believe we're an elite breed, specifically chosen for our strength, resilience, and grace under pressure...Though we often feel clumsy and weak and sad...But we're good at propping each other up during those dark moments, and collectively, we stand strong as the oak in the meadow you visit every Spring...year, after year, after year...
Just like that, we will be here in the club, fighting for our kids, fighting for each other's kids, fighting for kids that don't know yet that they're headed our way. In more ways than we're cursed, we've been blessed. We've seen the worst work the devil can perform on little bodies and the brightest lights of heaven shine through our children, those who help us, and through each other.
While I would jump at the chance to throw my membership key out the window if it could erase Nick's cancer, I would miss the tender club friends I would leave behind, fighting on for their kids and each other....
Sent from my iPhone
Sunday, June 14, 2015
Wednesday, May 13, 2015
Teens v. Parents
As the school year winds down, summer plans are being made, and finals have tensions high, I've been talking to some parent friends who are worried about their teens' activities, fought with my own teens over messy rooms and attitude problems, and begun giving this whole teenage angst issue a lot of consideration.
If I could say one thing to the teens of this world and really have it stick with them, I would say "Understand that everything your parents say or do for you or to you comes from both a place of love and a place of fear. Parents love you so much that they want the absolute best for you...your happiest happy, your greatest love, your fondest dreams. Mostly though, parents want you to be able to survive and thrive on your own, without them. Parents greatest fear is that you won't have the tools and skills required to build an independent life on your own or worse, that you will throw your gifts away with dangerous behavior that compromises your quality of life or ends your life completely. When your parent nags, instructs, seems frustrated, and lectures you, it's not because they want to be mean or damage your relationship or ruin all your fun. It's because they are afraid your current path of behavior will ruin your chance of living your best life now and when they've passed, leaving you to make your own choices. Grant your parent the same grace and patience you beg for, and take responsibility for making your life ."
If I had understood the role of parents better as a child, I would have been a better child. I would have shown my parents a better me, so they could relax in the confidence that I would "be fine."
Good luck parents! Good luck teens!
Sent from my iPhone
If I could say one thing to the teens of this world and really have it stick with them, I would say "Understand that everything your parents say or do for you or to you comes from both a place of love and a place of fear. Parents love you so much that they want the absolute best for you...your happiest happy, your greatest love, your fondest dreams. Mostly though, parents want you to be able to survive and thrive on your own, without them. Parents greatest fear is that you won't have the tools and skills required to build an independent life on your own or worse, that you will throw your gifts away with dangerous behavior that compromises your quality of life or ends your life completely. When your parent nags, instructs, seems frustrated, and lectures you, it's not because they want to be mean or damage your relationship or ruin all your fun. It's because they are afraid your current path of behavior will ruin your chance of living your best life now and when they've passed, leaving you to make your own choices. Grant your parent the same grace and patience you beg for, and take responsibility for making your life ."
If I had understood the role of parents better as a child, I would have been a better child. I would have shown my parents a better me, so they could relax in the confidence that I would "be fine."
Good luck parents! Good luck teens!
Sent from my iPhone
Thursday, July 24, 2014
best gift ever
When people asked me what I wanted for my birthday this year, I mentioned a couple things like a cool hat I saw online or a pair of new shoes. From the morning the sun peeked through the windows this morning to this moment as I fight to keep my heavy lids from closing before I'm done with this post, I have had a beautiful, special, noteworthy, loving birthday. The kids were thoughtful in their gift shopping and doting in their care for me all day and night. Mike arranged for a pizza dinner at home with family, and it was fun and funny, and it was, as Dylan said, "...an awesome party!"
The sweetest gift came last night though. I took several of the kids to a certain favorite trendy has everything you could ever want under one roof superstore, and we saw back to school clothes and supplies. Yes, it's July. Yes, it's early to think about going back to school, but we were there...and the store was quiet...and we had a couple bucks in the checking account this week...So we shopped for school. Nick got excited and picked out a big pile of jeans, and shorts, and tees, and we headed to the fitting room. A couple items were a tad too long or a little bigger than perfect for right now, but I said things like "You'll grow into that." and "It'll fit in a couple months." Grinning like he just won the lotto, Nick headed out of the dressing room and toward the checkout line feeling good about how he would look on his first day at his new middle school.
Then I realized...I realized that we went through that whole exercise without me thinking about keeping shopping to a minimum in case he was too sick to go to school, or worse, died soon. For over 3 years, the "what if he dies?" script has run through my head in every situation. He should spend his Journeys gift card now in case he dies before he can use it all up. We shouldn't buy more than one set of PE clothes in case he dies and obviously can't go to school anymore. We shouldn't buy too many expensive shoes in case he dies and doesn't get use of them all.
Even after treatment. Even after many "clean" MRI's, the script, the fears, the heartache...They flooded my head and my heart in almost every situation involving decisions about the future and how much to invest in Nick's.
Last night, we just shopped for the school year ahead of us. I didn't think about cancer or death or not having the chance to grow into those jeans. That moment of peace. What a gift. The best gift. I'm not naive, and I know the cancer could come back. I know this soul stillness...this glimpse of the old normal vs. the new normal we had to get used to during cancer treatment...could be fleeting. But for right now, I am celebrating both the gift of another year of life and the best gift of all...a peaceful soul, and quiet heart, and the hope, the hope we all have right now for great things to come...
Thursday, June 19, 2014
Kensie's 3rd Birthday
Sweet Kensie's life is so intertwined with Nick's for me. I was 6 months pregnant with her when Nick was diagnosed. Even my labor induction with her was scheduled around Nick's in-patient chemo. Before she was too mobile, I used to bring her with us to the hospital with Nick because he said "I like it better when she's here." When she first learned how to give kisses, she couldn't stop herself. She kissed everyone...frequently. Her "Kensie Kisses" brought light and love to rooms filled with poison and fear.
Today, Kensie turned 3. I was prepared to reminisce. Like when we were remembering how she stopped breathing--twice--during her first day of life and had to spend the night in the nursery for observation. Or when we were looking at her newborn photos and the photos of her second birthday. I think every mom feels a little melancholy over how fast time flies when their little ones have a birthday or graduation or wedding or whatever milestone they reach that punctuates how these babies grow up and away far faster than a mother would like.
When Kensie has a birthday, my mind jumps right back to where we were when she was born. Being pregnant, her low amniotic fluid, her birth, having a newborn to love and care for...They were all concepts that I couldn't fully grasp at the time. My whole heart. My whole head. My whole being was dedicated to Nick. I wish she had been born to a mother who could plan a layette and buy make a scrapbook and clean the house to nest for her. Despite having 8 children before her, the experience of pregnancy felt foreign and surreal.
Even though I feel guilt and loss for not fully appreciating her pregnancy and early days, she never noticed a thing. She burst into the world full of love and spunk and life. She embraced us and supported us, all of us--but especially Nick, innocently and passionately. I can't think about Kensie at any stage of her life and not laugh...She is such a spark plug and brings our family so much energy and joy.
Drifting back in time made me remember the baby clothes and gifts people gave us for Kensie before she arrived. Which made me remember the garage sale our school friends organized to benefit our family. Which made me remember the t-shirts one of the parents made for the event. Which made me remember the kids who shaved their heads...some over and over...to support Nick as he lost his hair to radiation and chemo. Mostly, I am always amazed that these parents allowed, and probably even pushed, their kids to support Nick...play with him...embrace him...At a time when many would run away. I imagine there was fear for these families that Nick would die, and the closer their child was to him, the more that would damage their own child. But these friends and their parents didn't flinch. One family in particular shaved their sons hair over and over again all through treatment and beyond. They came to the hospital and took Nick on vacation with them. They drew him closer during treatment and continue to hold him close today. I feel that so deeply...that kindness...It overwhelms me sometimes.
Remembering the bittersweet early months of her life is leaving me a little raw. I hate to remember the fear and the pain and the anger that took over my heart while Nick was in treatment. I hate to remember that Nick was sick. I hate to remember that Nick could get sick again.
But the joy, the light. I hold onto that today and every day of Kensie's life. That is Kensie's gift, our gift. Love. Hope. Grace. I will never fully understand God's plan, but I celebrate Kensie's birthday and her life with a grateful heart--sentimental and wounded--but very grateful.
Happy Birthday Kensie Rosie Baby!
Today, Kensie turned 3. I was prepared to reminisce. Like when we were remembering how she stopped breathing--twice--during her first day of life and had to spend the night in the nursery for observation. Or when we were looking at her newborn photos and the photos of her second birthday. I think every mom feels a little melancholy over how fast time flies when their little ones have a birthday or graduation or wedding or whatever milestone they reach that punctuates how these babies grow up and away far faster than a mother would like.
Even though I feel guilt and loss for not fully appreciating her pregnancy and early days, she never noticed a thing. She burst into the world full of love and spunk and life. She embraced us and supported us, all of us--but especially Nick, innocently and passionately. I can't think about Kensie at any stage of her life and not laugh...She is such a spark plug and brings our family so much energy and joy.
Drifting back in time made me remember the baby clothes and gifts people gave us for Kensie before she arrived. Which made me remember the garage sale our school friends organized to benefit our family. Which made me remember the t-shirts one of the parents made for the event. Which made me remember the kids who shaved their heads...some over and over...to support Nick as he lost his hair to radiation and chemo. Mostly, I am always amazed that these parents allowed, and probably even pushed, their kids to support Nick...play with him...embrace him...At a time when many would run away. I imagine there was fear for these families that Nick would die, and the closer their child was to him, the more that would damage their own child. But these friends and their parents didn't flinch. One family in particular shaved their sons hair over and over again all through treatment and beyond. They came to the hospital and took Nick on vacation with them. They drew him closer during treatment and continue to hold him close today. I feel that so deeply...that kindness...It overwhelms me sometimes.
Remembering the bittersweet early months of her life is leaving me a little raw. I hate to remember the fear and the pain and the anger that took over my heart while Nick was in treatment. I hate to remember that Nick was sick. I hate to remember that Nick could get sick again.
But the joy, the light. I hold onto that today and every day of Kensie's life. That is Kensie's gift, our gift. Love. Hope. Grace. I will never fully understand God's plan, but I celebrate Kensie's birthday and her life with a grateful heart--sentimental and wounded--but very grateful.
Happy Birthday Kensie Rosie Baby!
Tuesday, June 17, 2014
Sunrise Strong
Recently, as I both started working on larger fundraisers for the hospital and evaluating whether or not to continue with Mini & Me where and how it exists today (the lease is ending soon...), I decided my fundraising needed to be more organized to be more effective. It needs a name. It needs a business plan. A mission statement. Something people can understand, sympathize with, identify with, and easily recognize by name and logo.
After Nick told me after his brain surgery "This is going to be life changing...But I'm strong," I knew that "STRONG" was my new favorite word...my theme...the name of a foundation if we ever built one. When the time came, our family sat around the computer dreaming up names and checking them against available websites on GoDaddy.com. We finally tossed "Sunrise" into the ring...A symbol of hope and renewal. Bright, happy, warm. And www.sunrisestrong.com was available on GoDaddy.com!! So our foundation was founded...On a Sunday afternoon. In our living room. "Sunrise Strong"
So far, we've hosted a lemonade stand at Mini & Me (www.miniandmeboutique.com)
And we've started a GoFundMe.com page--http://www.gofundme.com/SunriseStrong
We even filmed for a promotional video yesterday with the awesome Christina Fleming of Murasaki Media!
We still need a logo and non-profit paperwork filed, but we have amazing friends willing to work on both projects for us...pro bono. I sometimes feel like I've put the cart in front of the horse, things are coming together so quickly. But things that are meant to be sometimes do that...They just click and work and get started quickly and smoothly. I pray every day that Sunrise Strong will be that foundation that grows easily and quickly and provides comfort and support for decades and decades for families struggling through hardships caused by childhood cancer.
Nick and I and JoAnn Sloan went to Rady's with our first load of official Sunrise Strong donations yesterday. We talked to Andie, a child life specialist, and we're a little clearer on the needs at the hospital. We look forward to working more with Rady's and eventually hospitals across the country.
And no, I don't know the future of Mini & Me...We will continue to exist as a web store, but I'm not sure if we will continue to have a store front presence in San Diego. Ideally, I will be able to rent a more industrial space that is larger than the store front we have now. We need space for storage and distribution. We need a workroom. And if we can have a small retail showroom, too, that would be awesome! Stay tuned on that project...
And while I'm thinking about it--San Diego folks, please mark your calendars--AJ from Energy 103.7 will be going up in the Crane for AJ'S KIDS on November 7th in the IKEA parking lot in Mission Valley. He lives in the crane for a week until he collects at least 100,000 toys for Rady's kids every year. This year, on November 8th, his morning show producer, Hula Ramos, is hosting the first "Babyfest at the Crane" from 10:00-2:00. I'm helping coordinate vendors and entertainers, and this event will be AWESOME!!! Please join us!!
Tuesday, April 15, 2014
moved
We moved. Again. Down the road a couple miles to a completely different world where the house is smaller but feels like home. The neighbors on both sides have introduced themselves, and our commutes have been slashed by at least half the time, miles, and gasoline. Normal...Maybe we just moved a little closer to normal.
It's been a long, long time since I've felt my feet touching the ground, known up from down, or been able to see the details of a day with clarity. I've described my life since Nick got sick as feeling like I'm caught in a wave, one that grabbed me and kept me spinning until I couldn't tell ocean floor from surface and sky. As I emerged from the wave, I still felt that after the dizzy dance spinning blur. No longer delirious but not quite able to bring my scenery into focus. That's getting better. Slowly. Better.
The longer Nick stays healthy, the easier it is to forget. Like childbirth...I know it hurt, but I can't quite recall the intensity, the exact ache, or the sharp pangs that stripped my self control. My memories shift from realism to impressionism over time, and the clarity and control I once took for granted return to my grasp.
Cancer isn't as easy as childbirth to put away and forget...People, babies and children, are still fighting cancer every day. Nick could relapse, and we could join that fight again. Cancer remission or even "cure" isn't as final as other traumatic events because it's so good at finding ways to creep back in when you least expect it. Relapse. That's what it's called when the primary cancer returns, and there is currently no cure for relapsed medulloblastoma (Nick's cancer).
A boy, a year or so older than Nick, was diagnosed with medulloblastoma right after Nick. His tumor was smaller than Nick's--Just the size of a walnut vs. the Nick's "small orange." They went through the same treatment protocol at the same time. We saw this boy in audiology while they waited to get their hearing tested. We saw this boy in the waiting room at clinic while his mom tutored him. We admired this boy when we heard that his Make A Wish was to build a playground for the kids in his neighborhood instead of using that wish for something more selfish. As Nick finished treatment and passed his first, then his second post-treatment MRI with clear results...As we prepared for Nick's first post-treatment Christmas...As we complained about real estate troubles and financial woes...This boy relapsed. He started treatment again. We watched him on Facebook, saw his soft brown eyes and serious expression honored for hours and hours of time spent gathering donations and packing bags, so he could deliver healthy snack bags to other patients at Rady's. There was a fundraising walk. Rewards and awards. Sports teams. Corporations. News stories and interviews. He lost his hair again in this second round of treatment, but his stoic expression never waivered. His work ethic never faltered. Our admiration grew. But so did the cancer, and this sweet 12 year old passed away yesterday.
Despite knowing there is no cure for his relapse, I somehow lived in the delusion that his good deeds shielded him from death...believed that he might be the one exception...And if he could survive, maybe Nick could if he relapsed, too. His death is the needle in that dream balloon, and I am angry and hurt and scared and sad and disappointed. I try not to ask "why?" very often, but I want to know...Why him? Why not Nick? What is Nick meant to do? What am I meant to do? If we are spared, for now, what are we supposed to be accomplishing to deserve that gift?
People rant on Facebook. Talented filmmakers create moving documentaries. Musicians write songs. Telethons plead with the nation on tv. But childhood cancer research is still under-funded. What do we need to do? What do we need to show? To say? To make change and find cures?
These are real kids. These are not aliens. They are not actors. Yesterday, they had curls framing their chubby faces, eyelashes batting around their big eyes, strong muscles peddling bicycles and throwing balls...Just like your kids. Just like your nieces and nephews and grandchildren. Their parents love them and dream for them and plan for their futures. Their parents hold them and love them and kiss their foreheads as they sleep...Just like you. The cancer and the chemo and the radiation make them bald or crippled...unable to eat on their own or walk on their own...their faces swollen beyond recognition from steroids...They are not freaks that belong to "somebody else." They are loved. They are babies. They could be yours, and this could be your life.
When you see a telethon, donate. When you can offer support to a family in crisis with cancer, offer it. Sign petitions. Share Facebook posts. Walk in the 5k's or donate to those who are. Please don't ignore our stories. Please don't ignore our kids.
I didn't mean for this to be a PSA or a soapbox lecture, but we do need help raising awareness and raising funds for research. The world can't afford to lose any more awesome kids to cancer.
Thank God we have Nick to hold close tonight. Thank God we are blessed with this opportunity to move forward with our plans and our dreams...for now. I pray we are worthy. I pray for guidance moving forward with our lives, and I pray for peace for the kids in treatment and the families grieving losses. And I pray we find a way to cure and prevent this serial killer...soon.
It's been a long, long time since I've felt my feet touching the ground, known up from down, or been able to see the details of a day with clarity. I've described my life since Nick got sick as feeling like I'm caught in a wave, one that grabbed me and kept me spinning until I couldn't tell ocean floor from surface and sky. As I emerged from the wave, I still felt that after the dizzy dance spinning blur. No longer delirious but not quite able to bring my scenery into focus. That's getting better. Slowly. Better.
The longer Nick stays healthy, the easier it is to forget. Like childbirth...I know it hurt, but I can't quite recall the intensity, the exact ache, or the sharp pangs that stripped my self control. My memories shift from realism to impressionism over time, and the clarity and control I once took for granted return to my grasp.
Cancer isn't as easy as childbirth to put away and forget...People, babies and children, are still fighting cancer every day. Nick could relapse, and we could join that fight again. Cancer remission or even "cure" isn't as final as other traumatic events because it's so good at finding ways to creep back in when you least expect it. Relapse. That's what it's called when the primary cancer returns, and there is currently no cure for relapsed medulloblastoma (Nick's cancer).
A boy, a year or so older than Nick, was diagnosed with medulloblastoma right after Nick. His tumor was smaller than Nick's--Just the size of a walnut vs. the Nick's "small orange." They went through the same treatment protocol at the same time. We saw this boy in audiology while they waited to get their hearing tested. We saw this boy in the waiting room at clinic while his mom tutored him. We admired this boy when we heard that his Make A Wish was to build a playground for the kids in his neighborhood instead of using that wish for something more selfish. As Nick finished treatment and passed his first, then his second post-treatment MRI with clear results...As we prepared for Nick's first post-treatment Christmas...As we complained about real estate troubles and financial woes...This boy relapsed. He started treatment again. We watched him on Facebook, saw his soft brown eyes and serious expression honored for hours and hours of time spent gathering donations and packing bags, so he could deliver healthy snack bags to other patients at Rady's. There was a fundraising walk. Rewards and awards. Sports teams. Corporations. News stories and interviews. He lost his hair again in this second round of treatment, but his stoic expression never waivered. His work ethic never faltered. Our admiration grew. But so did the cancer, and this sweet 12 year old passed away yesterday.
Despite knowing there is no cure for his relapse, I somehow lived in the delusion that his good deeds shielded him from death...believed that he might be the one exception...And if he could survive, maybe Nick could if he relapsed, too. His death is the needle in that dream balloon, and I am angry and hurt and scared and sad and disappointed. I try not to ask "why?" very often, but I want to know...Why him? Why not Nick? What is Nick meant to do? What am I meant to do? If we are spared, for now, what are we supposed to be accomplishing to deserve that gift?
People rant on Facebook. Talented filmmakers create moving documentaries. Musicians write songs. Telethons plead with the nation on tv. But childhood cancer research is still under-funded. What do we need to do? What do we need to show? To say? To make change and find cures?
These are real kids. These are not aliens. They are not actors. Yesterday, they had curls framing their chubby faces, eyelashes batting around their big eyes, strong muscles peddling bicycles and throwing balls...Just like your kids. Just like your nieces and nephews and grandchildren. Their parents love them and dream for them and plan for their futures. Their parents hold them and love them and kiss their foreheads as they sleep...Just like you. The cancer and the chemo and the radiation make them bald or crippled...unable to eat on their own or walk on their own...their faces swollen beyond recognition from steroids...They are not freaks that belong to "somebody else." They are loved. They are babies. They could be yours, and this could be your life.
When you see a telethon, donate. When you can offer support to a family in crisis with cancer, offer it. Sign petitions. Share Facebook posts. Walk in the 5k's or donate to those who are. Please don't ignore our stories. Please don't ignore our kids.
I didn't mean for this to be a PSA or a soapbox lecture, but we do need help raising awareness and raising funds for research. The world can't afford to lose any more awesome kids to cancer.
Thank God we have Nick to hold close tonight. Thank God we are blessed with this opportunity to move forward with our plans and our dreams...for now. I pray we are worthy. I pray for guidance moving forward with our lives, and I pray for peace for the kids in treatment and the families grieving losses. And I pray we find a way to cure and prevent this serial killer...soon.
Sunday, March 9, 2014
mixed up.
"Happy 3rd Birthday Nick!" We said that over and over today. We had Nick's friends and family over for swimming and pizza. I posted on Facebook about how happy we are today. Because three years ago today, March 9, 2011, was the day we found out Nick had cancer. He has survived for three years past that moment.
And we are happy. We are happy that Nick is still alive. We are happy that he is cancer free. We are. So happy. So f*%#ing happy to be "celebrating" a holiday we should never have to "celebrate."
We are intelligent people. In good, strong moments, we understand that we are the "lucky" ones. We know, there are many, many parents who are not hosting survivor parties but rather grieving the loss of their precious babies. We are grateful to hold Nick, full of life, cancer free Nick, in our arms every day. We are very, very grateful.
But Mike and I both had anxiety and anger attacks today...separately. It was good when we came together for a moment and said "you, too?" Because sometimes when you're supposed to be something, and you're pretending to be that thing...But your heart is feeling differently, it feels lonely. It feels like you're doing something wrong.
March 9th, 2011 is a day I want to curse. I want to blow up. I want to scream at and shoot at and stab in the heart. I don't want to celebrate it. It was the worst day of my life. I remember hearing that my 8 year old son had brain cancer. I remember calling Mike, my parents, my other kids...hearing their horror and their voices crack as they cried. I remember how sick my tiny boy looked in that hospital bed. I remember explaining to him what a tumor was while carefully leaving the word "cancer" out. I remember willing every nerve in my body to turn to steel, so I could smile at Nick and tell him "I'm so happy they finally found out what's wrong with you, so we can fix it." I had no idea if he could be fixed, but he was going to see strength in my eyes and hear power in my words. I remember getting him the stuffed panda he wanted from the gift shop and how he hugged it and slept with it. I remember crawling into his narrow bed with my enormous pregnant body, so I could hold him while he slept.
I remember every moment of March 9th, 2011, and every March 9th takes me right back there. It's not the same as a "real" birthday when you remember the happy delivery room scene. New life. Hope. So much joy. We call today a "birthday" for Nick, but it's not the same...at all.
Instead of skipping through the grocery store as I bought party supplies, I felt anxious and confused and like I wasn't capable even a little bit of hosting a party today. Once I got to the car and started driving, all the "wrong" emotions flooded my heart. At the moment I was supposed to be heading home to celebrate Nick's life, I was spilling tears over the brokenness his cancer caused.
I'm mad. I'm mad that innocent children get cancer. I'm mad that mine did. I'm mad that Nick's cancer took his athleticism and his energy. I'm mad that his grades are slipping, probably from his radiation treatments. I'm mad that he can't grow. I'm mad that I have to stick him with needles full of growth hormone every single day to try to help him grow. I'm mad that his cancer broke relationships with people I cared about. I'm mad that his treatments cost so much financially. I'm mad that his siblings worried and cried and lost opportunities in their lives. I'm mad that three years later our lives are still unstable. I'm mad that even as we rebuild, it feels like building on quicksand. I'm mad that we spend every day looking over our shoulders, worried that the cancer will come chasing Nick again.
Is that wrong? Should I take Prozac? Push the "wrong" feelings away into some vault in my heart? Do other people's lives really look the same in real life as they do on Facebook? Do other people only feel "right" feelings? Or is it normal to have mad and sad living alongside grateful and hopeful inside yourself? Right or wrong, today, it all lives in me. Smiles in me, cries in me, laughs in me, and rages in me.
No cancer mom looks back on the day her child was diagnosed with joy. No memory of that news and that day in her life is anything other than traumatic and terrifying. But Nick is watching me. Just as he was in that emergency room 3 years ago. Every March 9th, I have a choice. Show Nick the tears or show Nick the strength.
Nick saw no tears today. He saw smiles and people who loved him and treats and presents. He heard how very glad we are that he is in our lives. He heard how proud we are of his courage and grace. He is our amazing gift, and he will always deserve the best version of me I can show him.
Why do I still feel like crying?
And we are happy. We are happy that Nick is still alive. We are happy that he is cancer free. We are. So happy. So f*%#ing happy to be "celebrating" a holiday we should never have to "celebrate."
We are intelligent people. In good, strong moments, we understand that we are the "lucky" ones. We know, there are many, many parents who are not hosting survivor parties but rather grieving the loss of their precious babies. We are grateful to hold Nick, full of life, cancer free Nick, in our arms every day. We are very, very grateful.
But Mike and I both had anxiety and anger attacks today...separately. It was good when we came together for a moment and said "you, too?" Because sometimes when you're supposed to be something, and you're pretending to be that thing...But your heart is feeling differently, it feels lonely. It feels like you're doing something wrong.
March 9th, 2011 is a day I want to curse. I want to blow up. I want to scream at and shoot at and stab in the heart. I don't want to celebrate it. It was the worst day of my life. I remember hearing that my 8 year old son had brain cancer. I remember calling Mike, my parents, my other kids...hearing their horror and their voices crack as they cried. I remember how sick my tiny boy looked in that hospital bed. I remember explaining to him what a tumor was while carefully leaving the word "cancer" out. I remember willing every nerve in my body to turn to steel, so I could smile at Nick and tell him "I'm so happy they finally found out what's wrong with you, so we can fix it." I had no idea if he could be fixed, but he was going to see strength in my eyes and hear power in my words. I remember getting him the stuffed panda he wanted from the gift shop and how he hugged it and slept with it. I remember crawling into his narrow bed with my enormous pregnant body, so I could hold him while he slept.
I remember every moment of March 9th, 2011, and every March 9th takes me right back there. It's not the same as a "real" birthday when you remember the happy delivery room scene. New life. Hope. So much joy. We call today a "birthday" for Nick, but it's not the same...at all.
Instead of skipping through the grocery store as I bought party supplies, I felt anxious and confused and like I wasn't capable even a little bit of hosting a party today. Once I got to the car and started driving, all the "wrong" emotions flooded my heart. At the moment I was supposed to be heading home to celebrate Nick's life, I was spilling tears over the brokenness his cancer caused.
I'm mad. I'm mad that innocent children get cancer. I'm mad that mine did. I'm mad that Nick's cancer took his athleticism and his energy. I'm mad that his grades are slipping, probably from his radiation treatments. I'm mad that he can't grow. I'm mad that I have to stick him with needles full of growth hormone every single day to try to help him grow. I'm mad that his cancer broke relationships with people I cared about. I'm mad that his treatments cost so much financially. I'm mad that his siblings worried and cried and lost opportunities in their lives. I'm mad that three years later our lives are still unstable. I'm mad that even as we rebuild, it feels like building on quicksand. I'm mad that we spend every day looking over our shoulders, worried that the cancer will come chasing Nick again.
Is that wrong? Should I take Prozac? Push the "wrong" feelings away into some vault in my heart? Do other people's lives really look the same in real life as they do on Facebook? Do other people only feel "right" feelings? Or is it normal to have mad and sad living alongside grateful and hopeful inside yourself? Right or wrong, today, it all lives in me. Smiles in me, cries in me, laughs in me, and rages in me.
No cancer mom looks back on the day her child was diagnosed with joy. No memory of that news and that day in her life is anything other than traumatic and terrifying. But Nick is watching me. Just as he was in that emergency room 3 years ago. Every March 9th, I have a choice. Show Nick the tears or show Nick the strength.
Nick saw no tears today. He saw smiles and people who loved him and treats and presents. He heard how very glad we are that he is in our lives. He heard how proud we are of his courage and grace. He is our amazing gift, and he will always deserve the best version of me I can show him.
Why do I still feel like crying?
Tuesday, February 25, 2014
best afternoon ever
Monday, February 24, 2014
just wondering...
"It's a good day to have a good day!"
I've been reading "The Secret" for a couple days. I heard about the movie. Then I started reading "The Law of Attraction." Finally, my slightly used copy of "The Secret" arrived in the mail this weekend, and I'm about halfway through the book already. I would really like to believe what I've read so far...The power of my own thoughts is all I need to get anything I want in life. If I'm not careful about what I'm consciously or sub-consciously thinking about though, I may get things that are unpleasant. I'm paraphrasing here, but my take away is that if I put happy, positive, wealthy, smart, friendly, healthy vibes into the "Universe," I will be super successful in every important way.
The good--I now spend a moment interrupting a series of negative events and cranky thoughts to think a happy thought and feel grateful and hopeful. I haven't, yet, had showers of money pouring on my head or throngs of people beating down my door trying to be my friend, but I have experienced an immediate sense of calm and positivity when I've spent that moment feeling grateful and focusing on positive instead of negative thoughts and feelings.
The bad--I'm wondering if it is a form of mental disease to actually believe one's thoughts can control things...any things...Just thinking that mind control seems a little not grounded in reality. Also wondering if this is going to get me sent straight to Hell or something! When I pause in gratefulness, I do remember to say "Thank you God...," but I still wonder if I'm being sacrilegious to follow this theory at all.
I learned this:
I've been reading "The Secret" for a couple days. I heard about the movie. Then I started reading "The Law of Attraction." Finally, my slightly used copy of "The Secret" arrived in the mail this weekend, and I'm about halfway through the book already. I would really like to believe what I've read so far...The power of my own thoughts is all I need to get anything I want in life. If I'm not careful about what I'm consciously or sub-consciously thinking about though, I may get things that are unpleasant. I'm paraphrasing here, but my take away is that if I put happy, positive, wealthy, smart, friendly, healthy vibes into the "Universe," I will be super successful in every important way.
The good--I now spend a moment interrupting a series of negative events and cranky thoughts to think a happy thought and feel grateful and hopeful. I haven't, yet, had showers of money pouring on my head or throngs of people beating down my door trying to be my friend, but I have experienced an immediate sense of calm and positivity when I've spent that moment feeling grateful and focusing on positive instead of negative thoughts and feelings.
The bad--I'm wondering if it is a form of mental disease to actually believe one's thoughts can control things...any things...Just thinking that mind control seems a little not grounded in reality. Also wondering if this is going to get me sent straight to Hell or something! When I pause in gratefulness, I do remember to say "Thank you God...," but I still wonder if I'm being sacrilegious to follow this theory at all.
I learned this:
Proverbs 3:5-6
New International Version (NIV)
5 Trust in the Lord with all your heart
and lean not on your own understanding;
6 in all your ways submit to him,
and he will make your paths straight.[a]
and lean not on your own understanding;
6 in all your ways submit to him,
and he will make your paths straight.[a]
Can "The Secret" co-exist with "The Bible" on my night table? In my brain? And my heart? Are they one in the same? Praying does feel a lot like the meditating and focusing of thought I do when trying the exercises of "The Secret."
Time to find a chat board...Or a member of the clergy...Or something to enlighten me here. Or maybe I can just finish the books before I struggle with this guilt too mightily...Maybe if I could just win the Lotto using the power of positive thought before I talk to a pastor?!?!
Wednesday, February 19, 2014
positive enough?
If you're a beach person, you know how it feels to be tumbled in a wave and to feel that instant of panic and confusion when you don't know which way is sky and which way is ocean floor. You need to breath, and you're uncertain if you will find the surface to gasp for air. That is how our life has felt to me for much longer than an instant.
Our once almost stereotypical middle class predictability was replaced with uncertainty the day Nick was diagnosed with cancer. Uncertainty makes me angry. Cancer makes me angry. Especially in kids. Especially in my kid. So I've been angry. A lot.
I like to think of myself as an optimist, but these last three years...they've worn me down, and I often feel tired...and frustrated...and confused...and yes, here it is again, angry.
Expecting my life to bloom from this dark place is like expecting a flower seed to grow in the middle of a rock. I cannot cultivate friendships, dream with my children, or grown my business from here.
Honestly, I wish I could find my peace and my positivity in my faith, in God. Unfortunately
(please don't judge, especially if you haven't been a cancer mom), I am still struggling with my faith and with finding my church home...And while I believe, and I pray, and I know God is there for me even when I can't see Him...I need more tools and more crutches right now, even practical exercises, to turn the sunshine on in my daily life.
Enter "The Secret." I haven't read the book or seen the movie, but our babysitter saw the movie and introduced its (paraphrased) theories to me last week. It sounded like positive thought combined with a grateful heart could bring you anything you could possibly ask for...money, fame, friends...anything, so why not give positive thinking a try? For a week now, I have worked on learning more about the power of positive vs. negative energy and have observed their powers in my own life.
Based on my limited research on the "laws of attraction" and positive attracting positive, negative attracting negative, I've decided a couple things...1) Asking for what you want is not magic...You won't magically have a Maserati show up on your doorstep just because you tossed that request out to the universe, but it does help you get what you want because it organizes you. It's easier to get what you want if you identify and define what you want. 2) Positive does attract positive. Your world is your mirror. If you are putting angry and negative vibes out to the people around you, you are likely to get the same back.
I am working really, really hard to be positive. Re-phrasing verbal statements. Choosing to be grateful in every moment (ie. "Thank you God that I have a car to be breaking down right now. Some people don't have cars at all.") I try to help my kids identify their negativity and re-frame and re-define their situations with positivity and gratefulness. I am being clear and concise and sincere in my requests to the universe, and I focus positive thought beams onto those wants as often as I think about them during the day.
Let's be real though...I cannot possibly transform from exhausted, skeptical, and (dare I say) negative to a joyous Pollyanna in only a few days, so while my efforts are commendable (really, really working hard here), I still get angry when something breaks or the house is a mess, feel negative when the alarm goes off 2 hours before I want to wake up in the morning, and feel frustrated when I look at my bank account. My automatic reactions are not always (or even frequently) positive, and when I catch myself being negative, I feel guilty for not having a more positive response. Ironically, positivity has caused a new problem for me.
As many people (women, mothers, in particular) are, I am a not enough'er. I am not thin enough, rich enough, smart enough, kind enough, generous enough, pretty enough...I play the "not enough" tape on endless re-play in my head every day and have done so for as long as I can remember. Contrary to what most psychologists would say, I don't think this is entirely a bad thing...If I was completely satisfied with myself, what would I strive for? Maybe this is another essay (debate?!?!) altogether, but I think my feelings of inadequacy have often prodded me along to work harder to be better...As though "enough" is a tangible, reachable finish line.
My new positivity campaign gave me one more thing to be not enough of...I am not positive enough. The thought of not being enough causes me stress which causes me negativity which causes me guilt for not being positive which causes stress...See that cycle starting? Yep. That's where I am right now.
Do I keep going? Should I keep studying the theories of attraction and positive energy and throwing wishes into the universe? Examining every reaction to every thought, feeling, and situation I ever have? As I sit here considering whether positive really is so much better than negative, wondering if I'm just giving myself one more thing to worry about and be frustrated by...Kensie is crawling into my lap (with as much grace as a Great Dane trying to be a lap dog), grabbing my typing hand and saying "hold my hand." Choosing to be grateful to have the world's most adorable 2 year old girl loving me and wanting to sit with me instead of being annoyed that she knocked my computer cord out and interrupted the writing of this blog post, I get to hear "Me like your hand...Love you much..." As I stop typing and tell her I love her, she curls up and falls asleep snuggled into my side. If being more positive brings more love and more moments like these to my life, then this energy experiment is definitely good enough to keep going with!
Our once almost stereotypical middle class predictability was replaced with uncertainty the day Nick was diagnosed with cancer. Uncertainty makes me angry. Cancer makes me angry. Especially in kids. Especially in my kid. So I've been angry. A lot.
I like to think of myself as an optimist, but these last three years...they've worn me down, and I often feel tired...and frustrated...and confused...and yes, here it is again, angry.
Expecting my life to bloom from this dark place is like expecting a flower seed to grow in the middle of a rock. I cannot cultivate friendships, dream with my children, or grown my business from here.
Honestly, I wish I could find my peace and my positivity in my faith, in God. Unfortunately
(please don't judge, especially if you haven't been a cancer mom), I am still struggling with my faith and with finding my church home...And while I believe, and I pray, and I know God is there for me even when I can't see Him...I need more tools and more crutches right now, even practical exercises, to turn the sunshine on in my daily life.
Enter "The Secret." I haven't read the book or seen the movie, but our babysitter saw the movie and introduced its (paraphrased) theories to me last week. It sounded like positive thought combined with a grateful heart could bring you anything you could possibly ask for...money, fame, friends...anything, so why not give positive thinking a try? For a week now, I have worked on learning more about the power of positive vs. negative energy and have observed their powers in my own life.
Based on my limited research on the "laws of attraction" and positive attracting positive, negative attracting negative, I've decided a couple things...1) Asking for what you want is not magic...You won't magically have a Maserati show up on your doorstep just because you tossed that request out to the universe, but it does help you get what you want because it organizes you. It's easier to get what you want if you identify and define what you want. 2) Positive does attract positive. Your world is your mirror. If you are putting angry and negative vibes out to the people around you, you are likely to get the same back.
I am working really, really hard to be positive. Re-phrasing verbal statements. Choosing to be grateful in every moment (ie. "Thank you God that I have a car to be breaking down right now. Some people don't have cars at all.") I try to help my kids identify their negativity and re-frame and re-define their situations with positivity and gratefulness. I am being clear and concise and sincere in my requests to the universe, and I focus positive thought beams onto those wants as often as I think about them during the day.
Let's be real though...I cannot possibly transform from exhausted, skeptical, and (dare I say) negative to a joyous Pollyanna in only a few days, so while my efforts are commendable (really, really working hard here), I still get angry when something breaks or the house is a mess, feel negative when the alarm goes off 2 hours before I want to wake up in the morning, and feel frustrated when I look at my bank account. My automatic reactions are not always (or even frequently) positive, and when I catch myself being negative, I feel guilty for not having a more positive response. Ironically, positivity has caused a new problem for me.
As many people (women, mothers, in particular) are, I am a not enough'er. I am not thin enough, rich enough, smart enough, kind enough, generous enough, pretty enough...I play the "not enough" tape on endless re-play in my head every day and have done so for as long as I can remember. Contrary to what most psychologists would say, I don't think this is entirely a bad thing...If I was completely satisfied with myself, what would I strive for? Maybe this is another essay (debate?!?!) altogether, but I think my feelings of inadequacy have often prodded me along to work harder to be better...As though "enough" is a tangible, reachable finish line.
My new positivity campaign gave me one more thing to be not enough of...I am not positive enough. The thought of not being enough causes me stress which causes me negativity which causes me guilt for not being positive which causes stress...See that cycle starting? Yep. That's where I am right now.
Do I keep going? Should I keep studying the theories of attraction and positive energy and throwing wishes into the universe? Examining every reaction to every thought, feeling, and situation I ever have? As I sit here considering whether positive really is so much better than negative, wondering if I'm just giving myself one more thing to worry about and be frustrated by...Kensie is crawling into my lap (with as much grace as a Great Dane trying to be a lap dog), grabbing my typing hand and saying "hold my hand." Choosing to be grateful to have the world's most adorable 2 year old girl loving me and wanting to sit with me instead of being annoyed that she knocked my computer cord out and interrupted the writing of this blog post, I get to hear "Me like your hand...Love you much..." As I stop typing and tell her I love her, she curls up and falls asleep snuggled into my side. If being more positive brings more love and more moments like these to my life, then this energy experiment is definitely good enough to keep going with!
Wednesday, January 1, 2014
Happy 2014!
It'll be a good one. I feel it. Everyone around me seems to feel it. Good is coming.
We ushered the year in with nachos, peach almond champagne, Martinelli's, and just our family. I took Kensie outside and told her to gather all the positive energy in the universe and then bring it back inside for the new year. She said "uh-huh," waved her arms around, then ran inside.
We're still going through a lot. I feel like I've already over-shared here about our money and our nomadic lifestyle and the fear that grips our hearts over Nick's future...So I won't bore you with the specifics again tonight. But it's still just...a lot.
Somehow this year feels hopeful, and I hope my psychic skills are working. I'm ready for a good year!
I feel a little like this baby...bringing some 2011, 2012, and 2013 baggage along with me into 2014, but I don't think that's all terrible. Once you've gone through cancer (yourself, a loved one, your BABY), you never really move forward without carrying that with you. Those bags are packed with pain, but they're also packed with appreciation, hope, and compassion that we might not have had with such passion if we hadn't had the cancer.
Some really amazing people have lost their battles with cancer this year...Most recently, Loren Nancarrow, a local newscaster and blogger and brain cancer victim and all around good guy. He inspired so many of us to look outside of ourselves and give more...focus on the truly important things in life. When 2013 started, he didn't even know he was sick.
What do we not know about 2014?
I've been sipping peach almond champagne and reading Facebook, and I'm really feeling the pain parents like Jessie's, Liam's, Talia's, and Bella's parents are feeling. There are so many today. Photos of healthy babies with full heads of hair...Gone. Just gone.
I pray God guides me even more in prosperous times than lean times to do everything I can to help and support childhood cancer charities and the oncology families that so need and deserve financial and emotional assistance.
Truth be told, I also pray that we do not face recurrence in Nick. When we were actually going through his treatment, I was just angry and sad and exhausted. I can do so much more good now...now when I'm not in the trenches...when my heart isn't being ripped out of my chest every moment of every day in quite the same way it is when Nick, my child, my baby, is yellow and skinny and bald and frail and fragile and in imminent danger of death.
I feel hopeful about 2014. I think we will see more prosperity as business owners, a family, and as a nation. I pray that prosperity means we will have more research and more cures in the cancer world.
Happy New Year! I really hope that whatever your situation is when you read this, you either provide help and share your heart or you accept the love and the resources available to you if you're in need.
2014 is unwritten. Let's write a story of joy, and love, and generosity...and cures for childhood cancers!!
We ushered the year in with nachos, peach almond champagne, Martinelli's, and just our family. I took Kensie outside and told her to gather all the positive energy in the universe and then bring it back inside for the new year. She said "uh-huh," waved her arms around, then ran inside.
We're still going through a lot. I feel like I've already over-shared here about our money and our nomadic lifestyle and the fear that grips our hearts over Nick's future...So I won't bore you with the specifics again tonight. But it's still just...a lot.
Somehow this year feels hopeful, and I hope my psychic skills are working. I'm ready for a good year!
I feel a little like this baby...bringing some 2011, 2012, and 2013 baggage along with me into 2014, but I don't think that's all terrible. Once you've gone through cancer (yourself, a loved one, your BABY), you never really move forward without carrying that with you. Those bags are packed with pain, but they're also packed with appreciation, hope, and compassion that we might not have had with such passion if we hadn't had the cancer.
Some really amazing people have lost their battles with cancer this year...Most recently, Loren Nancarrow, a local newscaster and blogger and brain cancer victim and all around good guy. He inspired so many of us to look outside of ourselves and give more...focus on the truly important things in life. When 2013 started, he didn't even know he was sick.
What do we not know about 2014?
I've been sipping peach almond champagne and reading Facebook, and I'm really feeling the pain parents like Jessie's, Liam's, Talia's, and Bella's parents are feeling. There are so many today. Photos of healthy babies with full heads of hair...Gone. Just gone.
I pray God guides me even more in prosperous times than lean times to do everything I can to help and support childhood cancer charities and the oncology families that so need and deserve financial and emotional assistance.
Truth be told, I also pray that we do not face recurrence in Nick. When we were actually going through his treatment, I was just angry and sad and exhausted. I can do so much more good now...now when I'm not in the trenches...when my heart isn't being ripped out of my chest every moment of every day in quite the same way it is when Nick, my child, my baby, is yellow and skinny and bald and frail and fragile and in imminent danger of death.
I feel hopeful about 2014. I think we will see more prosperity as business owners, a family, and as a nation. I pray that prosperity means we will have more research and more cures in the cancer world.
Happy New Year! I really hope that whatever your situation is when you read this, you either provide help and share your heart or you accept the love and the resources available to you if you're in need.
2014 is unwritten. Let's write a story of joy, and love, and generosity...and cures for childhood cancers!!
Monday, August 12, 2013
with and without
More often than I share here, my emotions swell until I feel the stitches that bind me straining and stretching and aching for some relief. If I weren't afraid, I would let my feelings leak and ooze into words, into this blog, into something that feels like sense and logic. I would write and write and write until I felt some relief or stumbled on some clarity. But I worry. I worry that if I only write about negativity that is nagging and churning, that someday the writing will be the only thing my children and my children's children have to remember me by, and what they will know of me will be dark and one dimensional.
I've realized that happy grows slowly, glimmers from under covers and peeks around corners. Rarely, does joy appear and then grow and then stay in quite the same heart racing, ears pounding, stomach clenching way that pain or fear do. Joy doesn't knock tenaciously on my brain, begging me to write it's story, the same way pain does.
I apologize. I apologize for not sharing more. I apologize for long absences when I am afraid to cement for posterity the darkness I am experiencing. I apologize for being so inept at capturing happiness and love and lightness in words but so proficient at capturing and describing beasts and terrors.
As I ramble now, I know I've already deviated from the path I thought this entry would take, but isn't that how my life seems to go? Seems to be God's little entertainment sometimes...to watch us make plans knowing so many of them will run off the rails before they have a chance at all.
For the first time in 20 years, our family is without a home. We have a roof, but we don't own it. We've lost our money. We've lost our confidence. We've lost things we never had like our ideas of the future, security, retirement. We've lost our way, and we've lost our security, or at least the façade of and belief in security.
Following a stress induced physical breakdown this summer, I've even lost my food. Being forced into a gluten free, dairy free lifestyle took away one of my lifetime crutches. Yes, I can eat, but I can't eat mac and cheese or a pizza at the end of a long day like I used to. Having battled eating disorders and weight issues all my life, food was big for me...a relationship all it's own...One I've had to break off as I face a lifetime of eating more like a cavewoman than a modern American carb lover.
We are without a lot of things. Things we miss. Things we mourn. Things we want back.
As we've traveled with cancer these past few years, we have met and loved and prayed for many children. Many parents. We have cried as babies died, and their mothers and fathers crumbled, wishing they could go in their place...or go with them. Every remission, every relapse, every loss is another stabbing reminder to fear the monster. Every day with Nick is a reminder to turn our faces to God and thank Him for one more day, one more chance to love him and be grateful for the grace of just one more day.
For the past week, Nick and Krissy have been traveling in Canada with my parents, and I miss them, I'll be honest, especially Nick, much more than I expected to. When my healthy kids travel, I worry and wonder about them. When Nick left, it felt like my right arm got ripped away from my body. This little person I have protected and fought for and guided and loved with a fierceness I didn't even know I possessed, was in someone else's care...Not for a few hours during the school day or for a sleepover at his friend's house...His life was now in the hands of my parents and every airline pilot that would fly him, taxi driver that would drive him, stranger who would cross his path...His life was not my responsibility this week. His life was not breathing and beating next to mine this week. And in my yearning to feel him near me, to hear his voice, and see his sarcastic little grin, I know in the truest way, I am without nothing.
If we are all alive, our family is not without.
And there, right there...did you feel it as it sprinted across the moment? Joy. It's there, woven into our story and the stories of all the other families who have gone through childhood cancer.
People don't always like to read our stories or even look into our eyes because they fear the pain, but if we, especially the parents of children lost, could find the right words, we would ask everyone to please know that during the cancer journey, it's not just the pain and fear that amplify; the love and the joy and the poignancy in small moments does, too. I would ask the general public as well as all my future relatives who may only know me through my writing, please see the love, and please remember the joy (even when we can't express or explain it as thoroughly or as often as we do the ugly parts). Please see our child, or remember our child, and their happiness and their love...not just their cancer.
I've realized that happy grows slowly, glimmers from under covers and peeks around corners. Rarely, does joy appear and then grow and then stay in quite the same heart racing, ears pounding, stomach clenching way that pain or fear do. Joy doesn't knock tenaciously on my brain, begging me to write it's story, the same way pain does.
I apologize. I apologize for not sharing more. I apologize for long absences when I am afraid to cement for posterity the darkness I am experiencing. I apologize for being so inept at capturing happiness and love and lightness in words but so proficient at capturing and describing beasts and terrors.
As I ramble now, I know I've already deviated from the path I thought this entry would take, but isn't that how my life seems to go? Seems to be God's little entertainment sometimes...to watch us make plans knowing so many of them will run off the rails before they have a chance at all.
For the first time in 20 years, our family is without a home. We have a roof, but we don't own it. We've lost our money. We've lost our confidence. We've lost things we never had like our ideas of the future, security, retirement. We've lost our way, and we've lost our security, or at least the façade of and belief in security.
Following a stress induced physical breakdown this summer, I've even lost my food. Being forced into a gluten free, dairy free lifestyle took away one of my lifetime crutches. Yes, I can eat, but I can't eat mac and cheese or a pizza at the end of a long day like I used to. Having battled eating disorders and weight issues all my life, food was big for me...a relationship all it's own...One I've had to break off as I face a lifetime of eating more like a cavewoman than a modern American carb lover.
We are without a lot of things. Things we miss. Things we mourn. Things we want back.
As we've traveled with cancer these past few years, we have met and loved and prayed for many children. Many parents. We have cried as babies died, and their mothers and fathers crumbled, wishing they could go in their place...or go with them. Every remission, every relapse, every loss is another stabbing reminder to fear the monster. Every day with Nick is a reminder to turn our faces to God and thank Him for one more day, one more chance to love him and be grateful for the grace of just one more day.
For the past week, Nick and Krissy have been traveling in Canada with my parents, and I miss them, I'll be honest, especially Nick, much more than I expected to. When my healthy kids travel, I worry and wonder about them. When Nick left, it felt like my right arm got ripped away from my body. This little person I have protected and fought for and guided and loved with a fierceness I didn't even know I possessed, was in someone else's care...Not for a few hours during the school day or for a sleepover at his friend's house...His life was now in the hands of my parents and every airline pilot that would fly him, taxi driver that would drive him, stranger who would cross his path...His life was not my responsibility this week. His life was not breathing and beating next to mine this week. And in my yearning to feel him near me, to hear his voice, and see his sarcastic little grin, I know in the truest way, I am without nothing.
If we are all alive, our family is not without.
And there, right there...did you feel it as it sprinted across the moment? Joy. It's there, woven into our story and the stories of all the other families who have gone through childhood cancer.
People don't always like to read our stories or even look into our eyes because they fear the pain, but if we, especially the parents of children lost, could find the right words, we would ask everyone to please know that during the cancer journey, it's not just the pain and fear that amplify; the love and the joy and the poignancy in small moments does, too. I would ask the general public as well as all my future relatives who may only know me through my writing, please see the love, and please remember the joy (even when we can't express or explain it as thoroughly or as often as we do the ugly parts). Please see our child, or remember our child, and their happiness and their love...not just their cancer.
Saturday, June 22, 2013
dream.
As I sat in the bleachers of the Del Mar Fairground with Krissy, the ride lights glowing in the infield and a Pacific breeze blowing just cold enough to raise the hair on our arms, I knew I had to write this post. A 12 year old with dreams too many to fit into 5 lifetimes sat next to me as an inspiring artist serenaded me. Martina McBride sings songs that speak to your inner self...The little lady who sang to a hairbrush in the bedroom mirror, wanted to run for president or fly to the moon, believed that she could, believed that she would...
During the concert, Martina said that all she ever wanted to do was sing. Singing, besides margarita making, is the only talent she has she said. I can only imagine what an uninterrupted dream feels like. Dream it. Work hard. Achieve it. Such a simple concept. Such an impossible reality for most of us.
Growing up with a mother whose own journey led her to crave boundaries and boxes, consistency and predictability, created a lot of confusion...for both of us. I wanted to dance, write, create, express...I wanted to feel the freedom that only releasing my creative beast could give me. She wanted to cage the beast. Not kill it. It was OK for the beast to exist in the world as long as it was locked up and placed a decent distance away, so we could all stay safe. My beast could not stay away, and instead of being trained in useful ways, it often roared in anger and created chaos in our home--Her home. Her clean, careful, safe little home.
Trying to repress and behave while living with a wild, creative heart and mind made me feel guilty and bad and wrong, and I often acted bad and wrong and developed illnesses like eating disorders and smoking cigarettes or drinking too much. Even when I was strong on the outside, or professional, or studious, I was sad and confused and uncertain on the inside. Even now, I can't define myself and my gifts clearly because I didn't explore them fully through childhood and beyond...never believed in them completely. Which talents are good, acceptable, allowed? Which gifts are unworthy, embarrassing, worthless?
When I danced, I felt it. Freedom. Belonging. Love. My story. My self. It was OK to show it. Ok to live it. OK to be it. Spin and roll and leap and FEEL. My real home, wherever the studio or stage was.
As I've aged, I've tried to allow the dreams to sneak past the prison bars. They're tempered by time and experience now, but they're unashamed. Somewhere between childhood and nine kids and brain cancer and now, I found the permission slip to let them run, and I signed it myself.
More than anything in the world, I want my children to feel that wind of creative power blowing on their faces. Feel that the world can't offer any obstacle they can't tackle. Some will sing. Some will write. Some will heal. Some will dance. But I want them all to dream their dreams and believe in their possibility with passion and clarity and faith.
I want to be the runway, the flight path, not the prison bars. Although, I fear all parents create suffocating cocoons to some extent. Dream babies. Dream. Dance. Fly. Believe. You deserve it, and you're worth it.
P.S. Remember, it never hurts to learn how to make a margarita, too! Sometimes, the road gets a little rough, and you'll just need a drink.
During the concert, Martina said that all she ever wanted to do was sing. Singing, besides margarita making, is the only talent she has she said. I can only imagine what an uninterrupted dream feels like. Dream it. Work hard. Achieve it. Such a simple concept. Such an impossible reality for most of us.
Growing up with a mother whose own journey led her to crave boundaries and boxes, consistency and predictability, created a lot of confusion...for both of us. I wanted to dance, write, create, express...I wanted to feel the freedom that only releasing my creative beast could give me. She wanted to cage the beast. Not kill it. It was OK for the beast to exist in the world as long as it was locked up and placed a decent distance away, so we could all stay safe. My beast could not stay away, and instead of being trained in useful ways, it often roared in anger and created chaos in our home--Her home. Her clean, careful, safe little home.
Trying to repress and behave while living with a wild, creative heart and mind made me feel guilty and bad and wrong, and I often acted bad and wrong and developed illnesses like eating disorders and smoking cigarettes or drinking too much. Even when I was strong on the outside, or professional, or studious, I was sad and confused and uncertain on the inside. Even now, I can't define myself and my gifts clearly because I didn't explore them fully through childhood and beyond...never believed in them completely. Which talents are good, acceptable, allowed? Which gifts are unworthy, embarrassing, worthless?
When I danced, I felt it. Freedom. Belonging. Love. My story. My self. It was OK to show it. Ok to live it. OK to be it. Spin and roll and leap and FEEL. My real home, wherever the studio or stage was.
As I've aged, I've tried to allow the dreams to sneak past the prison bars. They're tempered by time and experience now, but they're unashamed. Somewhere between childhood and nine kids and brain cancer and now, I found the permission slip to let them run, and I signed it myself.
More than anything in the world, I want my children to feel that wind of creative power blowing on their faces. Feel that the world can't offer any obstacle they can't tackle. Some will sing. Some will write. Some will heal. Some will dance. But I want them all to dream their dreams and believe in their possibility with passion and clarity and faith.
I want to be the runway, the flight path, not the prison bars. Although, I fear all parents create suffocating cocoons to some extent. Dream babies. Dream. Dance. Fly. Believe. You deserve it, and you're worth it.
P.S. Remember, it never hurts to learn how to make a margarita, too! Sometimes, the road gets a little rough, and you'll just need a drink.
Wednesday, June 5, 2013
smudged.
Today I smudged. It wasn't the first time, but it was the first time in this home. If you have no idea what I'm talking about, don't worry, I didn't even know the technical term for burning sage until a week or two ago. Years ago, we traveled to Sedona, AZ, and being the shopper I am, I stopped at every roadside stand, suddenly infatuated with bears made from turquoise and worry stones and bunches of dried weed. Of course, I had to ask about the weeds I was seeing everywhere, and it was explained to me that it was dried sage. If you burn it in your home, it's supposed to clear negative energy and spirits from your home. The negativity attaches to the smoke then wafts away as the smoke clears. (Here's an article about smudging if you want the long version of the practice http://www.spiritdiscovery.com/smudge.shtml)
Coming back to San Diego with my sage bundles, I smudged the next 3 houses we lived in. (The last house on Elk Grove, I should have smudged daily...times 10!! Maybe my negligence explains all of our bad luck there!)
Hard to admit in some circles, but I watch Long Island Medium...often...I've even seen Theresa Caputo live at the Civic Theater. Even though she says the same things over and over again, there's a piece of me that believes in her powers to summon "spirit" enough to keep watching. And Theresa smudges...a lot. I saw her smudging her house on a recent episode and immediately hopped onto the computer to order a new bundle of dried sage for our home.
Dylan told us last week that he saw a red clad figure sleeping in our bed. When he tried to wake it, it disappeared. Other children have told us they have heard or seen strange activity in this house, too. We know a former tenant passed away from scleroderma. I'm not sure if she died in the home, but I wouldn't be surprised if the landlord failed to mention that part of the story to us. And I wouldn't be surprised if she's still hanging around...Probably quite disturbed by a loud house full of 9 children! I was definitely hoping the sage would help her move along with her eternity.
As a family, we have a lot of emotional and financial damage to repair in the aftermath of Nick's illness. It's time for some new energy, some positivity, some cleansing and restarting on the "right foot."
So I made our house smell like an old stone lodge today. I prayed over that burning bundle. I waved it over my head and body. I waved it, scattering burning embers onto beds and carpets and many other things that are highly flammable, and I prayed about all the things I want to let go of. I swept it back and forth over every bed as I thought about the family members who sleep there and how much they deserve to heal and to thrive. I stuck it into closets and showers. I even let the smoke fill my car for a moment as I smudged the garage.
Sage may or may not have a real power to cleanse, but the ritual was one I would like to repeat regularly! My kids would prefer if I just pretended to light the sage from now on because they all think their rooms "Smell like butt!" Just taking a few moments to focus on letting go of negativity in my life and letting in positive energy made me feel lighter, more optimistic. I don't know why I carry my hurts and worries for so much longer than anyone else would or should. On too many days, my heart hurts, my brows furrow, and my neck tangles into knots. That's not helping any situation...not healing...not mending...and yet I can't let go. Somehow, the physical waving around of this smoky stick while I considered releasing these long held burdens, facilitated that release...made my head and my heart open just enough to let some of my wounds and worries flutter out.
Every New Year's Eve, we perform a similar ritual when we write on little slips of paper what we would like to let go of from the previous year then burn the papers to ash and throw them away into the middle of the road at midnight. For a little moment right there at 12:00, we feel invincible, untouchable, ready to take on the next year, our future, with strength and renewal. There's no reason to limit renewal to only one night of the year.
Some of the kids swear they already feel better in our house. Others are probably tweeting their friends about what a lunatic hippie mom they've been stuck with. I'm going to stick with smudging. I like being smudged. It sounds dirty, but it feels clean...and new...and hopeful...
Coming back to San Diego with my sage bundles, I smudged the next 3 houses we lived in. (The last house on Elk Grove, I should have smudged daily...times 10!! Maybe my negligence explains all of our bad luck there!)
Hard to admit in some circles, but I watch Long Island Medium...often...I've even seen Theresa Caputo live at the Civic Theater. Even though she says the same things over and over again, there's a piece of me that believes in her powers to summon "spirit" enough to keep watching. And Theresa smudges...a lot. I saw her smudging her house on a recent episode and immediately hopped onto the computer to order a new bundle of dried sage for our home.
Dylan told us last week that he saw a red clad figure sleeping in our bed. When he tried to wake it, it disappeared. Other children have told us they have heard or seen strange activity in this house, too. We know a former tenant passed away from scleroderma. I'm not sure if she died in the home, but I wouldn't be surprised if the landlord failed to mention that part of the story to us. And I wouldn't be surprised if she's still hanging around...Probably quite disturbed by a loud house full of 9 children! I was definitely hoping the sage would help her move along with her eternity.
As a family, we have a lot of emotional and financial damage to repair in the aftermath of Nick's illness. It's time for some new energy, some positivity, some cleansing and restarting on the "right foot."
So I made our house smell like an old stone lodge today. I prayed over that burning bundle. I waved it over my head and body. I waved it, scattering burning embers onto beds and carpets and many other things that are highly flammable, and I prayed about all the things I want to let go of. I swept it back and forth over every bed as I thought about the family members who sleep there and how much they deserve to heal and to thrive. I stuck it into closets and showers. I even let the smoke fill my car for a moment as I smudged the garage.
Sage may or may not have a real power to cleanse, but the ritual was one I would like to repeat regularly! My kids would prefer if I just pretended to light the sage from now on because they all think their rooms "Smell like butt!" Just taking a few moments to focus on letting go of negativity in my life and letting in positive energy made me feel lighter, more optimistic. I don't know why I carry my hurts and worries for so much longer than anyone else would or should. On too many days, my heart hurts, my brows furrow, and my neck tangles into knots. That's not helping any situation...not healing...not mending...and yet I can't let go. Somehow, the physical waving around of this smoky stick while I considered releasing these long held burdens, facilitated that release...made my head and my heart open just enough to let some of my wounds and worries flutter out.
Every New Year's Eve, we perform a similar ritual when we write on little slips of paper what we would like to let go of from the previous year then burn the papers to ash and throw them away into the middle of the road at midnight. For a little moment right there at 12:00, we feel invincible, untouchable, ready to take on the next year, our future, with strength and renewal. There's no reason to limit renewal to only one night of the year.
Some of the kids swear they already feel better in our house. Others are probably tweeting their friends about what a lunatic hippie mom they've been stuck with. I'm going to stick with smudging. I like being smudged. It sounds dirty, but it feels clean...and new...and hopeful...
Sunday, May 26, 2013
fragile.
Every three months, Nick has a brain and spine MRI. The scan itself isn't too tough to go through. He puts on special goggles that allow him to watch a video, has a warm blanket pulled up to his chin, then slides peacefully into the tube. After an hour or so of listening to the "bang, bang, bang" of the MRI machine, we thank the staff and go to Target to get him a toy.
It's the waiting. That's the hard part. For the better part of three months, we enjoy Nick's good health, and his almost perfectly normal mental and physical capabilities. The fact that he outwardly appears so perfect makes it easier to pretend he doesn't have brain cancer...Makes it easier to push back the tears and the fear...But when it's time for that MRI, it all floods back to us. If those scans come back showing evidence of disease, we know the worst is coming. We know relapsed medulloblastoma is terminal. We know the hospital stays, clinic visits, pale skin, and bald head become our reality again...Only this time it would be to buy time, not with the hope for cure we had the first time he battled his disease.
It's hard to breath...hard to speak...hard to answer the people who ask every day if we've gotten the MRI results back...For days, sometimes a week, we wait, pretending to be like everyone else. Just going to work, running errands, getting gas or groceries...The truth is, I can hardly think or feel anything other than anxiety during those days. I check my phone every minute or so to make sure I haven't missed a call, but when the call finally comes, I don't want to pick it up.
As soon as I hear the cheerful voice of Nick's case manager, Gail, I know his scans are clean. I know that she either wouldn't be the one calling, or at least wouldn't be sounding so upbeat, if the news wasn't good. The way she says "So Nick's scans were stable..." in such an unremarkable way...The way that statement rolls so smoothly into "We need to make his next appointment..." always surprises me a little. I kind of think there should be a big, dramatic pause after hearing that his scans are clean...Balloons and confetti should fall from the sky in celebration of the good news, but she just moves on to scheduling his next blood draw or port flush...
The truth is, her statement should be "Nick's scans are clean...for now..." As cliché a it sounds, cancer patients and their families don't put too much expectation on the future or even take for granted that there will be a future of any significant length of time. We relish the beauty in the right now, and celebrate the tiniest of accomplishments with intensity. We live, but we live with the knowledge that the victory of a clean scan is a fragile one. There is no finish line. There is no trophy we put on a shelf to get dusty. The cancer will never be a memory. It's more like a shadow or a cloud that hovers close. Every day. Forever.
One year and one day ago, the world lost a precious boy named Connor. Cory and I became friends with Connor and his mother, Linda, during his battle with neuroblastoma. He was effervescent, and his mother was brave. They were both strong, but the cancer was stronger. Celebrating the one year anniversary of his death with a celebration of his life yesterday, was powerful for me. Hours before, I had been in the doctor's office with Nick discussing the fact that he's had clean scans for a year past treatment, so now he can get his port removed. His doctor looked fascinated by his head of hair, bright eyes, and obvious good health. Such a joyful sense of relief followed by such a powerful reminder of the potential for loss we will always face.
Nick's cancer could come back. Or a secondary tumor could grow as a result of the radiation he received. Or he could develop leukemia from his chemo treatments. That's not drama. That's the risks...a few of them anyway...that are his reality. Our reality.
And I could get cancer tomorrow. Or you could get hit by a truck. Nick's scans bring to the forefront of my mind how fragile his life is, how fragile these victories are, but we are all fragile. If we make it through each day safely and with our health intact, we should all be grateful. In some twisted way, I feel grateful for these scans every three months because I have to face our human condition more regularly and in a more tangible way than most people ever do.
When I hear songs that say "Live like you were dying," or slogans like "Live Like Connor" or "Live Like Bella" to encourage people to live as fully and with as much enthusiasm as young cancer patients, I understand. I wish I didn't. If I'm being honest, I wish I didn't really have a firm grasp on the concept of how fragile we all, our children included, are. I can only hope that I, and all of us who have been given this gift of insight and wisdom, are able to be stronger than our fears...That our fears and the sense of urgency they create in us will propel us to love and help and accomplish more than we normally would have.
Tonight, I cannot celebrate a forever victory, but I celebrate Nick's small, fragile, one with joy and gratefulness...And I thank Linda for sharing Connor with us and for continuing to be such an inspiration.
It's the waiting. That's the hard part. For the better part of three months, we enjoy Nick's good health, and his almost perfectly normal mental and physical capabilities. The fact that he outwardly appears so perfect makes it easier to pretend he doesn't have brain cancer...Makes it easier to push back the tears and the fear...But when it's time for that MRI, it all floods back to us. If those scans come back showing evidence of disease, we know the worst is coming. We know relapsed medulloblastoma is terminal. We know the hospital stays, clinic visits, pale skin, and bald head become our reality again...Only this time it would be to buy time, not with the hope for cure we had the first time he battled his disease.
It's hard to breath...hard to speak...hard to answer the people who ask every day if we've gotten the MRI results back...For days, sometimes a week, we wait, pretending to be like everyone else. Just going to work, running errands, getting gas or groceries...The truth is, I can hardly think or feel anything other than anxiety during those days. I check my phone every minute or so to make sure I haven't missed a call, but when the call finally comes, I don't want to pick it up.
As soon as I hear the cheerful voice of Nick's case manager, Gail, I know his scans are clean. I know that she either wouldn't be the one calling, or at least wouldn't be sounding so upbeat, if the news wasn't good. The way she says "So Nick's scans were stable..." in such an unremarkable way...The way that statement rolls so smoothly into "We need to make his next appointment..." always surprises me a little. I kind of think there should be a big, dramatic pause after hearing that his scans are clean...Balloons and confetti should fall from the sky in celebration of the good news, but she just moves on to scheduling his next blood draw or port flush...
The truth is, her statement should be "Nick's scans are clean...for now..." As cliché a it sounds, cancer patients and their families don't put too much expectation on the future or even take for granted that there will be a future of any significant length of time. We relish the beauty in the right now, and celebrate the tiniest of accomplishments with intensity. We live, but we live with the knowledge that the victory of a clean scan is a fragile one. There is no finish line. There is no trophy we put on a shelf to get dusty. The cancer will never be a memory. It's more like a shadow or a cloud that hovers close. Every day. Forever.
One year and one day ago, the world lost a precious boy named Connor. Cory and I became friends with Connor and his mother, Linda, during his battle with neuroblastoma. He was effervescent, and his mother was brave. They were both strong, but the cancer was stronger. Celebrating the one year anniversary of his death with a celebration of his life yesterday, was powerful for me. Hours before, I had been in the doctor's office with Nick discussing the fact that he's had clean scans for a year past treatment, so now he can get his port removed. His doctor looked fascinated by his head of hair, bright eyes, and obvious good health. Such a joyful sense of relief followed by such a powerful reminder of the potential for loss we will always face.
Nick's cancer could come back. Or a secondary tumor could grow as a result of the radiation he received. Or he could develop leukemia from his chemo treatments. That's not drama. That's the risks...a few of them anyway...that are his reality. Our reality.
And I could get cancer tomorrow. Or you could get hit by a truck. Nick's scans bring to the forefront of my mind how fragile his life is, how fragile these victories are, but we are all fragile. If we make it through each day safely and with our health intact, we should all be grateful. In some twisted way, I feel grateful for these scans every three months because I have to face our human condition more regularly and in a more tangible way than most people ever do.
When I hear songs that say "Live like you were dying," or slogans like "Live Like Connor" or "Live Like Bella" to encourage people to live as fully and with as much enthusiasm as young cancer patients, I understand. I wish I didn't. If I'm being honest, I wish I didn't really have a firm grasp on the concept of how fragile we all, our children included, are. I can only hope that I, and all of us who have been given this gift of insight and wisdom, are able to be stronger than our fears...That our fears and the sense of urgency they create in us will propel us to love and help and accomplish more than we normally would have.
Tonight, I cannot celebrate a forever victory, but I celebrate Nick's small, fragile, one with joy and gratefulness...And I thank Linda for sharing Connor with us and for continuing to be such an inspiration.
Thursday, March 14, 2013
hope.
I have struggled for weeks to write. As Nick's two year anniversary of his diagnosis approached, was "celebrated," then passed, I wanted to write...I wanted to scream...rejoice...cry...grieve...dream...I was just paralyzed with emotion. I had days when I couldn't catch my breath. I used to do that as a child. Once, I made my mom take me to the doctor because I thought I had a medical problem. I didn't have asthma or any other breathing disorder. It's a feeling disorder. When I feel too much, my lungs won't fill with air, and that's how the last few weeks have gone...
Of course, my life never affords me the luxury of a singular focus, so while I was processing my PTSD over Nick's cancer, I was also welcoming artists and new decor and new employees and new products into the store. For a few precious moments, I felt blessed with boundless possibility for the store's success and the blossoming relationships I was forming.
As the anniversary passed, I felt it in my home life, too...I had some days when I remembered who I used to be and how I used to feel. I haven't always woken up with a vice pressing the sides of my skull in on my brain. I haven't always let "what if" stop my planning and dreaming.
As today unfolded, it went from bad, to worse, to devastating...I wanted to come here to vent. I wanted to whine about people letting me down and cutting me down and being careless with me. I wanted to document my pain, my disappointment, my confusion...My "why????"
Driving down the 56 freeway tonight, a slogan jumped into my head like a blinking billboard or a song that got stuck on "repeat" in my head..."Choose Hope." Hope. I had so much hope, but all the hopes I had nurtured in the past couple weeks had crumbled into defeat today. "Choose hope." I did! And I lost. I put too much hope in the wrong things and the wrong people, and I was feeling sad.
The funny truth is, as Alexander Pope said, "Hope springs eternal..." Tomorrow, I realized, I will find, without having to search for it, something new to hope for. God gave us humans a gift that is endlessly renewable. No matter how big or small our lives are and our possibilities are, we hope for something good. We hope for peace. We hope for wealth. We hope for love. We hope for better...better than what we know...better than where we are...better than who we are...For now, I just hope tomorrow is better than today, but I am heading to bed with a sense of gratefulness and wonder for this endless portal to possibility.
Of course, my life never affords me the luxury of a singular focus, so while I was processing my PTSD over Nick's cancer, I was also welcoming artists and new decor and new employees and new products into the store. For a few precious moments, I felt blessed with boundless possibility for the store's success and the blossoming relationships I was forming.
As the anniversary passed, I felt it in my home life, too...I had some days when I remembered who I used to be and how I used to feel. I haven't always woken up with a vice pressing the sides of my skull in on my brain. I haven't always let "what if" stop my planning and dreaming.
As today unfolded, it went from bad, to worse, to devastating...I wanted to come here to vent. I wanted to whine about people letting me down and cutting me down and being careless with me. I wanted to document my pain, my disappointment, my confusion...My "why????"
Driving down the 56 freeway tonight, a slogan jumped into my head like a blinking billboard or a song that got stuck on "repeat" in my head..."Choose Hope." Hope. I had so much hope, but all the hopes I had nurtured in the past couple weeks had crumbled into defeat today. "Choose hope." I did! And I lost. I put too much hope in the wrong things and the wrong people, and I was feeling sad.
The funny truth is, as Alexander Pope said, "Hope springs eternal..." Tomorrow, I realized, I will find, without having to search for it, something new to hope for. God gave us humans a gift that is endlessly renewable. No matter how big or small our lives are and our possibilities are, we hope for something good. We hope for peace. We hope for wealth. We hope for love. We hope for better...better than what we know...better than where we are...better than who we are...For now, I just hope tomorrow is better than today, but I am heading to bed with a sense of gratefulness and wonder for this endless portal to possibility.
Thursday, February 21, 2013
smile.
Something about today was just off. Maybe the gloomy weather. Maybe the alarm going off during the wrong part of my sleep cycle. Hormones? Who knows? It was just one of those days when I wished I could just crawl back under the rumpled bed covers and let the world spin on without me.
But, I had those sweet babies hugging my knees and looking forward to the magical possibilities they believed today would hold. I had no choice. I had to get up and be mom...And I had to smile.
No matter how I grumbled and fussed around this morning, Kensie followed me around like a puppy, kissed me, laughed at me, made me smile. I wondered out loud how and why she would want to love on me so much when I was feeling so unloveable...Cami said "Because she knows she makes you happy."
I so hope that's true. I so hope those babies, all 9 of them, know they make me happy. Every day. I will smile when I am happy. I will smile when I want them to think I'm happy. I will smile because I want them to be happy. When in doubt, smile. Love. And smile.
But, I had those sweet babies hugging my knees and looking forward to the magical possibilities they believed today would hold. I had no choice. I had to get up and be mom...And I had to smile.
I so hope that's true. I so hope those babies, all 9 of them, know they make me happy. Every day. I will smile when I am happy. I will smile when I want them to think I'm happy. I will smile because I want them to be happy. When in doubt, smile. Love. And smile.
Tuesday, February 19, 2013
release.
Grudges. Shoes. Poisonous relationships. Memories. Nail polish. I'm not discriminating. I just have a hard time letting go...of anything. Maybe a side effect of my childhood, or maybe just a loose wire upstairs... I may never know why...But I hoard both actual objects and emotions.
We moved last month, and I'm having a tough time organizing the new house. My closet looks more like a department store stockroom than one woman's closet, and I wear approximately 1% of what I have stored in there. I studied the racks today and considered getting some trash bags out to get a generous Goodwill donation together. Then I got sidetracked because I started moving boxes around the bedroom and trying to figure out what we have in those boxes, why we need them, or whether I can get rid of any of it. Shuffle it around and make excuses to hold on. My specialty.
As I stumble around my things, and I stumble around my life since Nick's cancer first gripped it nearly two years ago, I almost audibly hear the word "release." Release the things. They only clutter my life. Release the fear. It only blocks my path to faith. Release grudges. Holding grudges and being angry only takes time and energy away from building strong relationships with the many great people in my life who deserve my time and energy.
Cluttered garage. Cluttered closet. Cluttered heart. It's confusing, hard to move around, blocking the path to where I really want to be. I must release. I will release. I will move forward.
I have a lot of little people watching me, learning from me, repeating what they see me do...And I can't imagine any of us, especially my little ones, stopping right here today. We all need to dream. We all need to love. We all need to release the anchors, so we can fly.
We moved last month, and I'm having a tough time organizing the new house. My closet looks more like a department store stockroom than one woman's closet, and I wear approximately 1% of what I have stored in there. I studied the racks today and considered getting some trash bags out to get a generous Goodwill donation together. Then I got sidetracked because I started moving boxes around the bedroom and trying to figure out what we have in those boxes, why we need them, or whether I can get rid of any of it. Shuffle it around and make excuses to hold on. My specialty.
As I stumble around my things, and I stumble around my life since Nick's cancer first gripped it nearly two years ago, I almost audibly hear the word "release." Release the things. They only clutter my life. Release the fear. It only blocks my path to faith. Release grudges. Holding grudges and being angry only takes time and energy away from building strong relationships with the many great people in my life who deserve my time and energy.
Cluttered garage. Cluttered closet. Cluttered heart. It's confusing, hard to move around, blocking the path to where I really want to be. I must release. I will release. I will move forward.
I have a lot of little people watching me, learning from me, repeating what they see me do...And I can't imagine any of us, especially my little ones, stopping right here today. We all need to dream. We all need to love. We all need to release the anchors, so we can fly.
Sunday, February 17, 2013
2011
I originally posted this on New Year's Eve, 12/31/11. I wrote it as our friends, the Vargas', arrived to celebrate a new year coming...a new chance at happiness and prosperity...Their beautiful daughter, Tiffany had battled leukemia for years, and their financial situation had become desperate. We all toasted and prayed for a new beginning that night, but stupid cancer appeared in Nury, Tiffany's mother. On Christmas Day, 2012, with Tiffany in remission, her mother was lost to cancer. Somehow, this feels like an important post to pull first from the archives, so here you go...
As I count down the final hours of 2011, I feel compelled to address all the previous hours somehow...wrap them up in a meaningful package...make sense of them..So painfully obvious is the fact that there is no sense in what we have faced and fought and endured this year. No sense in what we will continue to face and fight and endure for many years to come. In 2011, Nick, our handsome, athletic, intelligent son was diagnosed with brain cancer. Brain CANCER. I still have to say it over and over to try to grasp that, and yet, it still doesn't seem entirely real. I heard the words in the hospital. I laid with him in his hospital bed and swelled with pride and awe when he told me "I think this is a life changing experience, but I'm strong." I've driven him daily to 6 weeks of radiation. Held him down in clinic to have his port accessed while he screamed and twisted away from the pain. I've listened endlessly in clinic while other children wail against the needles. I've endured the torturous waiting for MRI results and slept too many nights in a hospital chair while the poison that may cure him pumps through Nick's veins and makes him sick. He IS strong. He is beautiful. He is my inspiration every day to do more and be more than I ever thought I would have to be. Also, in 2011, my best friend from high school, the mother of 3 small boys, found out she has an aggressive form of breast cancer. She's endured a mastectomy, chemo, baldness, fear, pain, but somehow, she's courageous and funny, and ironically, the former hair model is gorgeous as a baldy! In 2011, families lost children and mothers and fathers to cancer. Many more of us have lost our incomes, even our homes, as we try to contend with the rigors of cancer treatment and the mounting medical bills, prescription expenses, babysitting fees, traveling expenses...All of us have lost our innocence. Up until the time you hear CANCER as it applies to you, you innocently believe there will be tomorrow, or next week, or next year to make amends, be a better friend, work, love, live. Once you hear CANCER, nothing is sure or certain. After you hear CANCER, you lose friends. You gain friends. You learn to surrender pride and accept that this is your season to take and be tended to. You learn who will be your givers and who were just takers all along. That surprises you. You lose who you were before you heard CANCER. You have to figure out who you are with cancer...and hopefully, after cancer. You celebrate small victories and move from day to day in grateful celebration that you are there...just that you are there to see today...There is beauty in having a stripped down life. There is beauty in strength and courage. Cancer sucks, really sucks...robs your life of so much even if it doesn't steal your life completely. But as we are slowly learning, it also reveals some glorious and generous people, new relationships, appreciation, and a level of faith that we may not have enjoyed without the cancer. 2011 was the worst year I've ever endured. 2011 was the worst year our family has endured. But it wasn't all bad. And it can't be summarized, packaged up neatly and put away on a shelf. It's a "to be continued" episode...right into 2012, 2013, and beyond...We welcome 2012 with hope and faith and love and a resolve to continue fighting cancer and it's collateral damage in our lives and the lives of anyone else we are able to help.
As I count down the final hours of 2011, I feel compelled to address all the previous hours somehow...wrap them up in a meaningful package...make sense of them..So painfully obvious is the fact that there is no sense in what we have faced and fought and endured this year. No sense in what we will continue to face and fight and endure for many years to come. In 2011, Nick, our handsome, athletic, intelligent son was diagnosed with brain cancer. Brain CANCER. I still have to say it over and over to try to grasp that, and yet, it still doesn't seem entirely real. I heard the words in the hospital. I laid with him in his hospital bed and swelled with pride and awe when he told me "I think this is a life changing experience, but I'm strong." I've driven him daily to 6 weeks of radiation. Held him down in clinic to have his port accessed while he screamed and twisted away from the pain. I've listened endlessly in clinic while other children wail against the needles. I've endured the torturous waiting for MRI results and slept too many nights in a hospital chair while the poison that may cure him pumps through Nick's veins and makes him sick. He IS strong. He is beautiful. He is my inspiration every day to do more and be more than I ever thought I would have to be. Also, in 2011, my best friend from high school, the mother of 3 small boys, found out she has an aggressive form of breast cancer. She's endured a mastectomy, chemo, baldness, fear, pain, but somehow, she's courageous and funny, and ironically, the former hair model is gorgeous as a baldy! In 2011, families lost children and mothers and fathers to cancer. Many more of us have lost our incomes, even our homes, as we try to contend with the rigors of cancer treatment and the mounting medical bills, prescription expenses, babysitting fees, traveling expenses...All of us have lost our innocence. Up until the time you hear CANCER as it applies to you, you innocently believe there will be tomorrow, or next week, or next year to make amends, be a better friend, work, love, live. Once you hear CANCER, nothing is sure or certain. After you hear CANCER, you lose friends. You gain friends. You learn to surrender pride and accept that this is your season to take and be tended to. You learn who will be your givers and who were just takers all along. That surprises you. You lose who you were before you heard CANCER. You have to figure out who you are with cancer...and hopefully, after cancer. You celebrate small victories and move from day to day in grateful celebration that you are there...just that you are there to see today...There is beauty in having a stripped down life. There is beauty in strength and courage. Cancer sucks, really sucks...robs your life of so much even if it doesn't steal your life completely. But as we are slowly learning, it also reveals some glorious and generous people, new relationships, appreciation, and a level of faith that we may not have enjoyed without the cancer. 2011 was the worst year I've ever endured. 2011 was the worst year our family has endured. But it wasn't all bad. And it can't be summarized, packaged up neatly and put away on a shelf. It's a "to be continued" episode...right into 2012, 2013, and beyond...We welcome 2012 with hope and faith and love and a resolve to continue fighting cancer and it's collateral damage in our lives and the lives of anyone else we are able to help.
Saturday, February 16, 2013
Chasing Happiness
The day Nick was diagnosed with cancer was the day my life went from full color to black and white. Already a fairly serious person, prone to perfectionism and cynicism, I never lived a caution to the wind, Rainbow Bright, carefree type of life, but in contrast to the darkness cancer brought, my old life feels like unbridled bliss.
Cancer brought fear like I've never known and am still afraid to look square in the eye. Cancer exposed me to emotional and physical pain I had spent a lifetime trying to avoid...Nick's pain, my pain, my family's pain, and the pain I witnessed in other patients and their families. Pain that took a lot of courage to expose in my blog entries here. Pain I chose to put away again after months of writing. I don't remember what prompted it, but I stopped writing and pushed "Revert to Draft" on every one of my blog entries. Maybe a part of me thinks that if nobody can see it in print, it will go away. I don't know if or when I will publish those old posts again, but I do know I miss the cathartic effect writing has on me. So here I am...back to the blog...
We're now 8 months post treatment. 8 months of clear MRI's. 8 months of trying to find our way back to a "normal" life...Only this attempt is amidst serious financial trouble and the ever present awareness that the cancer cloud hovers not far above or behind us. Will the cancer return? We don't know. How do we plan lives around that type of uncertainty? Maybe the way we all do...None of us really know what challenges we will face tomorrow or the next day, yet we dream and plan...We all know we will die, but we continue to live.
Lately, I've noticed the sun shining more often. I've seen the colors in flowers. I've had a few clean, clear breaths of fresh air fill my lungs and joyful moments fill my heart. The light is pushing back on the dark now, and I appreciate the times I feel gratefulness, hopefulness, and most importantly, faithfulness.
I've heard it said that faith and fear cannot co-exist. I consider that constantly, and I do believe that's true. During Nick's treatment, I tried desperately to hold onto my faith, but I was mad at God. I doubted his plans, and I feared what cancer would do to Nick. I don't like being a fair weather fan. I struggle...a lot...with the way I wavered in my faith. My faith journey is just that...a journey...with some more bumps in the road than others maybe...but I'm still working on it...Still journeying toward stronger faith, deeper love, and someday, maybe, happiness as a rule rather than an exception.
Cancer brought fear like I've never known and am still afraid to look square in the eye. Cancer exposed me to emotional and physical pain I had spent a lifetime trying to avoid...Nick's pain, my pain, my family's pain, and the pain I witnessed in other patients and their families. Pain that took a lot of courage to expose in my blog entries here. Pain I chose to put away again after months of writing. I don't remember what prompted it, but I stopped writing and pushed "Revert to Draft" on every one of my blog entries. Maybe a part of me thinks that if nobody can see it in print, it will go away. I don't know if or when I will publish those old posts again, but I do know I miss the cathartic effect writing has on me. So here I am...back to the blog...
We're now 8 months post treatment. 8 months of clear MRI's. 8 months of trying to find our way back to a "normal" life...Only this attempt is amidst serious financial trouble and the ever present awareness that the cancer cloud hovers not far above or behind us. Will the cancer return? We don't know. How do we plan lives around that type of uncertainty? Maybe the way we all do...None of us really know what challenges we will face tomorrow or the next day, yet we dream and plan...We all know we will die, but we continue to live.
Lately, I've noticed the sun shining more often. I've seen the colors in flowers. I've had a few clean, clear breaths of fresh air fill my lungs and joyful moments fill my heart. The light is pushing back on the dark now, and I appreciate the times I feel gratefulness, hopefulness, and most importantly, faithfulness.
I've heard it said that faith and fear cannot co-exist. I consider that constantly, and I do believe that's true. During Nick's treatment, I tried desperately to hold onto my faith, but I was mad at God. I doubted his plans, and I feared what cancer would do to Nick. I don't like being a fair weather fan. I struggle...a lot...with the way I wavered in my faith. My faith journey is just that...a journey...with some more bumps in the road than others maybe...but I'm still working on it...Still journeying toward stronger faith, deeper love, and someday, maybe, happiness as a rule rather than an exception.
 |
| Our enormous Pacific Ocean. This was tonight's sunset in Encinitas, CA. This is where I feel the most at peace and where I'm reminded who is really in charge... |
Subscribe to:
Posts (Atom)