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.
Tuesday, April 15, 2014
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!
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