Today I was thinking about how much this whole cancer thing has permeated my life. I was thinking I should lighten the mood, write about hummingbirds or frappuccinos (or hummingbirds on frappuccinos) instead of such a heavy subject, but unfortunately, that's just not coming out of me right now. I mean, I can write about light fluffy subjects and want to do so because all of this heaviness needs some levity, but it's amazing how much of an effect cancer has--how much it takes over every waking thought and seeps back in to the smallest details. How do I mention my daughter's penchant to break out in random song or her refusal to match socks without meandering in to she had a brain tumor and passed away? The questions always seem to come, or even if they don't, I then have this ridiculous expectation that they should. Then the air around me becomes awkward because I went there--to that dark place where most would rather not look. Heck, I don't blame them, (I do A LOT of mindless binge watching avoidance), but the cancer life has become a part of me whether I like it or not, like a scar, a big, gaping scar.
Naturally, what can one do with scars but own them? Emilie owned everything about herself. She loved being weird and wasn't set on impressing anyone. When I asked if I could shave her head to eliminate her old man mullet she had going on from radiation, she refused. It was the only hair she had left, and she was going to keep it. She even occasionally walked around without a hat because, really, she had more important things to worry about. Emilie and her brother would spontaneously act out scenarios where they were both spies with the complimentary accents, or they would make up conversations complete with alien dialogue about very interesting parties they attended the night before. Where these dramatic feats took place really didn't matter and neither did the size of the audience. As I alluded to in my intro to this blog page, I once asked her if I could be cool like her, and she replied no, "Because you have to be yourself." Unfortunately my "self" which has always been unquestionably interlinked with my children, my hearts, my soul, has a bit of immovable schrapnel.
For the sake of my husband and my son, I am slowly making room around that scar for happy moments, and as far as the scar itself, Emilie would probably want to dye it purple or add sequins to it, so that actually makes me smile a little. And yes, it will still be a little awkward meeting new people because the subject will come up (It always comes up). I will also keep writing about all of the muck of cancer because her story will hopefully move people to do more. So much work is ahead of us because we are entrenched in this fight to strip the power from a disease that takes our loved ones all too soon. The aftermath of Emilie's illness and passing becomes my badge of courage, proof that I am fighting this war and that I have embraced this new role. Here is where I imagine Emilie exclaiming a mic dropping, neck rolling, attitudinal "Boom!" (Take that, Cancer!).
Tuesday, July 31, 2018
Tuesday, July 24, 2018
Chasing Purpose
Purpose is something I have struggled with for a very long time, and I'm not sure why because really I should be able to just look around and find a sense of purpose somewhere in my life. I mean, I have purpose as a mom. That should be enough, right? I think maybe the problem there is that it has become so passive. Rearing my son has reached an almost automatic pilot stage because even though he is just fourteen, there is very little I have to do for him. In fact, that child is more mature than me on various occasions, and while the nagging and reprimanding are still part of the repertoire to his adolescent chagrin, he is pretty darn self-sufficient.
Of course, when Emilie was at St. Jude, our days were filled with appointments and medicine schedules. One of the most fulfilling moments of my role as her caretaker came when we retreated to our room, and it was just the two of us. With KT Tunstall crooning in the background, I helped her craft purple bat wreaths while simultaneously working on an impossible puzzle. Another time our whole family spent the afternoon making sidewalk creations with chalk, and there were countless moments of family games involving cards or dice. Creating that oasis away from needles and the manic start and stop of appointments was so satisfying because I knew that I was making a safe space for her. When those moments ceased to exist, to some degree I felt like (and still do sometimes) a soldier returning from war (albeit a different kind of war). I know you've probably heard countless stories of vets who lost their sense of purpose once they came back home. My purpose became elusive after Emilie died. Not only did my daily chores of keeping her healthy and sane disappear, but I also found myself out of a job and the passions that once held my attention were lackluster.
I woke up one day thinking, "Who in the hell am I now?"
There are moments when I see what kind of effect I could have on the world around me, usually during the times I crawl out of my pit of despair and actually take note that other people actually exist. My purpose is presently ghostly and shapeless, but I think it's there waiting for me to give it life. I know it lies somewhere in helping others because when I give someone the confidence to make an "A" on an English paper, the contacts to make a balloon ride happen, or just the physical ability to make it through the door, I feel a certain swell of contented satisfaction. All of these little tidbits or morsels of purpose trickle in, but the impatient part of me wants the whole cake and wants it now even though I might not be ready for that kind of responsibility or maybe the stars haven't aligned like they should just yet. I sometimes forget that I'm still healing from some pretty significant wounds and that that kind of healing takes serious time. In those moments I tell myself over and over again to give myself a break and to stop being my own worst critic (Yes, you've guessed it, I totally have detailed conversations with myself, and half of the time they are out loud). It's like breaking a bone and wanting it to heal over night and then cursing yourself when you still can't walk the next day because the bone is still broken. It's out of your control, and it's maddening, BUT I guess the takeaway from this is that the bone will heal. I will always feel the pain of Emilie's loss, but from what I understand, it just becomes a part of the life and love that will grow around it. My purpose on this planet will just be an added bonus that binds it all together.
So for those of you seeking some kind of purpose in your life, I have a feeling that clues have revealed themselves to you, and generally those around you see your strengths before you do. I guess it's just up to us to be vigilant, to take note, and to keep moving forward until our purpose fully develops from potential into a beautifully tangible fulfilling moment. I'm going to have faith that it will.
Of course, when Emilie was at St. Jude, our days were filled with appointments and medicine schedules. One of the most fulfilling moments of my role as her caretaker came when we retreated to our room, and it was just the two of us. With KT Tunstall crooning in the background, I helped her craft purple bat wreaths while simultaneously working on an impossible puzzle. Another time our whole family spent the afternoon making sidewalk creations with chalk, and there were countless moments of family games involving cards or dice. Creating that oasis away from needles and the manic start and stop of appointments was so satisfying because I knew that I was making a safe space for her. When those moments ceased to exist, to some degree I felt like (and still do sometimes) a soldier returning from war (albeit a different kind of war). I know you've probably heard countless stories of vets who lost their sense of purpose once they came back home. My purpose became elusive after Emilie died. Not only did my daily chores of keeping her healthy and sane disappear, but I also found myself out of a job and the passions that once held my attention were lackluster.
I woke up one day thinking, "Who in the hell am I now?"
There are moments when I see what kind of effect I could have on the world around me, usually during the times I crawl out of my pit of despair and actually take note that other people actually exist. My purpose is presently ghostly and shapeless, but I think it's there waiting for me to give it life. I know it lies somewhere in helping others because when I give someone the confidence to make an "A" on an English paper, the contacts to make a balloon ride happen, or just the physical ability to make it through the door, I feel a certain swell of contented satisfaction. All of these little tidbits or morsels of purpose trickle in, but the impatient part of me wants the whole cake and wants it now even though I might not be ready for that kind of responsibility or maybe the stars haven't aligned like they should just yet. I sometimes forget that I'm still healing from some pretty significant wounds and that that kind of healing takes serious time. In those moments I tell myself over and over again to give myself a break and to stop being my own worst critic (Yes, you've guessed it, I totally have detailed conversations with myself, and half of the time they are out loud). It's like breaking a bone and wanting it to heal over night and then cursing yourself when you still can't walk the next day because the bone is still broken. It's out of your control, and it's maddening, BUT I guess the takeaway from this is that the bone will heal. I will always feel the pain of Emilie's loss, but from what I understand, it just becomes a part of the life and love that will grow around it. My purpose on this planet will just be an added bonus that binds it all together.
So for those of you seeking some kind of purpose in your life, I have a feeling that clues have revealed themselves to you, and generally those around you see your strengths before you do. I guess it's just up to us to be vigilant, to take note, and to keep moving forward until our purpose fully develops from potential into a beautifully tangible fulfilling moment. I'm going to have faith that it will.
Monday, July 16, 2018
Little Motivations
Life after tragedy seems to be all about trying to function through the day or even the moment. Everything at this point in my life becomes a test of endurance to see if I can make it to the other side of the day, so with that in mind, I need a lot of little motivations to keep moving. There is very little we have control over or at least feel like we have control over, so that's why I have gravitated towards running.
Running because you want to is such a foreign concept to some people. I don't know how many times I've heard people balk and say that the only way they would run is if zombies were chasing them. Okay, so I used to be that person who turned her nose down to such a form of self-torture. Running seemed about as much fun as doing sit-ups or washing dishes. I just wasn't down with it. Until I was.
One day, a few years ago, walking became my exercise of choice because of pesky high cholesterol, a fun side effect of growing older. The only way I could effectively combat it was to literally work it out of my system. Walking was free and easy when one had small children. All I had to do was pack up my kid in a stroller and go. Those walks turned in to, "Can I jog to that mailbox?" Then, "How about that stop sign?" I started challenging myself in little ways until I was jogging up to three miles. For reasons involving weird knee popping issues which I won't go into, after a while I stopped but always with the intention that I would find a way to start again. I won't lie. A few years went by with my excuses, and I tried other forms of exercise, but nothing ever equated the rush of running.
Running became a daily challenge to see just how much further I could go. The best part was that I was constantly surprising myself. Being able to run long distances made me stronger and proud of what I could accomplish. On my worst days, the best thing about running was that I could only really think about making it to my next marker. Then some days, when I would reach that elusive runner's high, I could go forever and had energy like no other for hours afterwards. That is what hooked me and kept me coming back for more. Since my daughter passed away, I have done quite a bit of research of how to finally get back into running without injuring myself. One quote I found about proper running form was by Chris McDougal in a Men's Health article: "Imagine your kid is running into the street, and you have to sprint after her in bare feet. You'd automatically lock into perfect form--you'd be up on your forefeet, with your back erect, head steady, arms high, elbows driving, and feet touching down quickly on the forefoot and kicking back toward your butt."
This tendency to "lock into perfect form" when my child is in danger is what intrigued me. Of course, when I started practicing that technique, I thought of Emilie. During her illness when she started losing her balance, I was on edge, ready to sprint in her direction at the slightest wobble. Towards the end of her life, she depended upon us for everything that she could not physically do for herself, so of course she was the one I pictured running into traffic, needing me to save her. As you can imagine, that made for a pretty emotional first run. Even though I probably cried through most of it, I also felt the best I had felt physically in years which made me pumped and ready to run again. Eventually my runs turned into my time with Emilie because I see her in my mind, cheering me on, and I run to her.
Since I started back in May, I have hit my three mile mark, and I have a new goal of raising money for St. Jude's 5K in December. What better way to commemorate my daughter? One day I want to be the eighty nine year old woman still running and keeping up with the youngsters. I want to make it to the other side of my life, and for me, running becomes a vital part of that process because it softens the hardness of frustration and loss. Running loosens me physically, which loosens me mentally, and gives me that boost I need to see that I really can make it through another day.
Running because you want to is such a foreign concept to some people. I don't know how many times I've heard people balk and say that the only way they would run is if zombies were chasing them. Okay, so I used to be that person who turned her nose down to such a form of self-torture. Running seemed about as much fun as doing sit-ups or washing dishes. I just wasn't down with it. Until I was.
One day, a few years ago, walking became my exercise of choice because of pesky high cholesterol, a fun side effect of growing older. The only way I could effectively combat it was to literally work it out of my system. Walking was free and easy when one had small children. All I had to do was pack up my kid in a stroller and go. Those walks turned in to, "Can I jog to that mailbox?" Then, "How about that stop sign?" I started challenging myself in little ways until I was jogging up to three miles. For reasons involving weird knee popping issues which I won't go into, after a while I stopped but always with the intention that I would find a way to start again. I won't lie. A few years went by with my excuses, and I tried other forms of exercise, but nothing ever equated the rush of running.
Running became a daily challenge to see just how much further I could go. The best part was that I was constantly surprising myself. Being able to run long distances made me stronger and proud of what I could accomplish. On my worst days, the best thing about running was that I could only really think about making it to my next marker. Then some days, when I would reach that elusive runner's high, I could go forever and had energy like no other for hours afterwards. That is what hooked me and kept me coming back for more. Since my daughter passed away, I have done quite a bit of research of how to finally get back into running without injuring myself. One quote I found about proper running form was by Chris McDougal in a Men's Health article: "Imagine your kid is running into the street, and you have to sprint after her in bare feet. You'd automatically lock into perfect form--you'd be up on your forefeet, with your back erect, head steady, arms high, elbows driving, and feet touching down quickly on the forefoot and kicking back toward your butt."
This tendency to "lock into perfect form" when my child is in danger is what intrigued me. Of course, when I started practicing that technique, I thought of Emilie. During her illness when she started losing her balance, I was on edge, ready to sprint in her direction at the slightest wobble. Towards the end of her life, she depended upon us for everything that she could not physically do for herself, so of course she was the one I pictured running into traffic, needing me to save her. As you can imagine, that made for a pretty emotional first run. Even though I probably cried through most of it, I also felt the best I had felt physically in years which made me pumped and ready to run again. Eventually my runs turned into my time with Emilie because I see her in my mind, cheering me on, and I run to her.
Since I started back in May, I have hit my three mile mark, and I have a new goal of raising money for St. Jude's 5K in December. What better way to commemorate my daughter? One day I want to be the eighty nine year old woman still running and keeping up with the youngsters. I want to make it to the other side of my life, and for me, running becomes a vital part of that process because it softens the hardness of frustration and loss. Running loosens me physically, which loosens me mentally, and gives me that boost I need to see that I really can make it through another day.
Tuesday, July 10, 2018
Calling Out From Planet Cancer
Since I have not been very faithful to my little blog, I feel I owe some background to this new chapter in my life. 2016-17 was very difficult, as my sweet girl who was ten years old passed away from a terrible cancer called DIPG this past Halloween 2017. One day maybe I will map it all out for you, but for now, the journey in its concentrated form is a little too much for me. Today I have opted to take an indirect route and give my thoughts on situations only cancer families know.
When my little one passed away, I joined groups on Facebook to help me deal with my very lonely new role. Facebook can be such a drain in so many ways, but it also can be a positive release through connection, especially when one's "tribe" of fellow sufferers may be few and far between. Lately, there seem to be more and more mothers speaking out that their family and friends have abandoned them since their child was diagnosed with cancer. Such insensitive comments are reported--things I can't believe would come out of another person's mouth. In most cases, these people are refusing to give up their ordinary everyday routine to help their daughters, sisters, sisters-in-law, or friends cope with having a child with cancer. I have also witnessed in real life family members who turn a blind eye to the needs of the child. I am beside myself with disbelief and heartbroken for those who have the added suffering of feeling abandoned and as if they have to shoulder all of the burden of the hardship of cancer alone. We should never have to feel alone.
Fortunately, our cancer journey was not quite so bleak. One night, when my husband and I were hunkered down in our bed for the night, I looked at him with sudden realization and awe and said, "I don't think we lost any friends or family. In fact, I think we gained some." I don't mean to diminish others' journeys by rubbing our good fortune in their faces. We both recognize our blessings in this regard, but we are familiar with the idea that the world of cancer is an alien world, one we had absolutely no choice but to assimilate to (for all of my Star Trek nerd friends). Although we were so lucky to have such a crazy big network, I can't say we were completely immune to our feelings of "otherness" when my daughter was sick. From issues regarding insensitivity with wheelchairs to stares at her balding after radiation, we definitely felt the strangeness of our planet and sometimes found ourselves thinking, "Why do I have to explain my daughter's situation? She has cancer. This should be a no-brainer." I think I can say that my daughter did not necessarily lose any friends, but she did deal with kids who were not so nice, who were jealous of the attention she was getting. Because she did not look sick for the majority of her illness, they claimed she did not really have cancer. Because she did not look sick, many children and adults did not realize the severity of her condition even though my husband and I were pretty candid and regularly communicated her situation. There were times when we might as well have been speaking a foreign language, and the frustration and the hurt was real.
Having had our own version of betrayal and insensitivity, my heart goes out to those who lost best friends, sisters, brothers, parents, husbands, and wives through their child's cancer journey. Cancer does not just take our loved ones physically. It has the potential to kill off relationships through the destructive weapon of fear. All of those people who refuse to visit planet Cancer, do so out of pure fear, as if acknowledgement of its existence would infect them as well, and although cancer can't actually be caught like the flu, unfortunately they are right to be afraid, for the disease is ugly. Its effects are heart-wrenchingly devastating, so to a certain degree, I understand others wanting to put their heads in the sand. I wanted to put my head in the sand, but to do that meant leaving my child alone out in the cold, and there was no way I could do that. I think this is where I had to accept the limitations of our humanity. There are just those who cannot look past their fears, and unfortunately that means I either had to accept people for their limitations or simply let them go because in their stagnant environment, nothing grows. Fortunately, the beautiful thing about the world is that for every person who can't seem to work past the fear, there is one who can. For every stranger who would not help me navigate her wheelchair, there was one friend who would. We also had to play our part, educate our audience, and let them know what we needed. Because just like in a marriage, our friends and family could not read our minds. Sometimes if a friend seemed distant and unsure--afraid of what we were facing--all it took was me reaching out and letting her know that she was wanted. This cancer journey is hard for all parties involved, and it takes all of us doing our part to hold one another together. Heck, life is hard in so many ways that it's crazy if we don't band together to help each other see this through.
So thank you, our amazingly brave friends who overcame the fear and stepped through the muck with us. You are who we cling to. You are our rock who keeps us grounded. You are where our energies flow because you return that love tenfold. And for those who are in the muck right now, those courageous people really are out there. They pop up in the most unexpected places and sometimes all you have to do is stretch out your hand.
When my little one passed away, I joined groups on Facebook to help me deal with my very lonely new role. Facebook can be such a drain in so many ways, but it also can be a positive release through connection, especially when one's "tribe" of fellow sufferers may be few and far between. Lately, there seem to be more and more mothers speaking out that their family and friends have abandoned them since their child was diagnosed with cancer. Such insensitive comments are reported--things I can't believe would come out of another person's mouth. In most cases, these people are refusing to give up their ordinary everyday routine to help their daughters, sisters, sisters-in-law, or friends cope with having a child with cancer. I have also witnessed in real life family members who turn a blind eye to the needs of the child. I am beside myself with disbelief and heartbroken for those who have the added suffering of feeling abandoned and as if they have to shoulder all of the burden of the hardship of cancer alone. We should never have to feel alone.
Fortunately, our cancer journey was not quite so bleak. One night, when my husband and I were hunkered down in our bed for the night, I looked at him with sudden realization and awe and said, "I don't think we lost any friends or family. In fact, I think we gained some." I don't mean to diminish others' journeys by rubbing our good fortune in their faces. We both recognize our blessings in this regard, but we are familiar with the idea that the world of cancer is an alien world, one we had absolutely no choice but to assimilate to (for all of my Star Trek nerd friends). Although we were so lucky to have such a crazy big network, I can't say we were completely immune to our feelings of "otherness" when my daughter was sick. From issues regarding insensitivity with wheelchairs to stares at her balding after radiation, we definitely felt the strangeness of our planet and sometimes found ourselves thinking, "Why do I have to explain my daughter's situation? She has cancer. This should be a no-brainer." I think I can say that my daughter did not necessarily lose any friends, but she did deal with kids who were not so nice, who were jealous of the attention she was getting. Because she did not look sick for the majority of her illness, they claimed she did not really have cancer. Because she did not look sick, many children and adults did not realize the severity of her condition even though my husband and I were pretty candid and regularly communicated her situation. There were times when we might as well have been speaking a foreign language, and the frustration and the hurt was real.
Having had our own version of betrayal and insensitivity, my heart goes out to those who lost best friends, sisters, brothers, parents, husbands, and wives through their child's cancer journey. Cancer does not just take our loved ones physically. It has the potential to kill off relationships through the destructive weapon of fear. All of those people who refuse to visit planet Cancer, do so out of pure fear, as if acknowledgement of its existence would infect them as well, and although cancer can't actually be caught like the flu, unfortunately they are right to be afraid, for the disease is ugly. Its effects are heart-wrenchingly devastating, so to a certain degree, I understand others wanting to put their heads in the sand. I wanted to put my head in the sand, but to do that meant leaving my child alone out in the cold, and there was no way I could do that. I think this is where I had to accept the limitations of our humanity. There are just those who cannot look past their fears, and unfortunately that means I either had to accept people for their limitations or simply let them go because in their stagnant environment, nothing grows. Fortunately, the beautiful thing about the world is that for every person who can't seem to work past the fear, there is one who can. For every stranger who would not help me navigate her wheelchair, there was one friend who would. We also had to play our part, educate our audience, and let them know what we needed. Because just like in a marriage, our friends and family could not read our minds. Sometimes if a friend seemed distant and unsure--afraid of what we were facing--all it took was me reaching out and letting her know that she was wanted. This cancer journey is hard for all parties involved, and it takes all of us doing our part to hold one another together. Heck, life is hard in so many ways that it's crazy if we don't band together to help each other see this through.
So thank you, our amazingly brave friends who overcame the fear and stepped through the muck with us. You are who we cling to. You are our rock who keeps us grounded. You are where our energies flow because you return that love tenfold. And for those who are in the muck right now, those courageous people really are out there. They pop up in the most unexpected places and sometimes all you have to do is stretch out your hand.
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