The Other Side

     Obviously I have been lacking in the writing department lately, but my husband threw this my way a couple of weeks ago.  It took me a little while to read it, but it is beautiful and needs to be shared.  We'll just call him my guest blogger for the week!  

     Nearly two years ago Candi, Emilie and I were in the middle of the rush of appointments that occur during the first two weeks at St. Jude. Parents who have been in those shoes know what I am talking about. When you first get there, it seems like there is no room to breathe or do anything else as you are running from one appointment to another with very little time for anything else, including food. I remember that we were coming out of one appointment and needed to rush to see Emilie’s neurosurgeon and it was lunchtime. Many knew that Emilie was not one to miss a meal and if she did, She Hulk came out. So, Candi ran to get food in the Kay Cafeteria while Emilie and I ran to E Clinic. Well, alone in the exam room, Emilie laid on the bed and asked, “Daddy, am I going to die?”. I had already read countless academic articles about DIPG by then, each of which laid out a clear prognosis of 0% survivability rate with this disease. So, I knew the reality and therefore the answer to that question. I replied to her calmly and soothingly saying, “We all die, but that is something you definitely don’t have to worry about right now.” So, I didn’t lie, but I didn’t tell the truth either. I equivocated… But I knew the answer.

     I will never know for certain, but I think Emilie may have known as well. She never let anyone know it and she never showed fear. During her treatment she would ask what happens if the shots do not work, and I would tell her that we would find the next step. I remember sitting in a doctor’s office with her and Candi when we were being told that her tumor was growing and the current course of treatment was not working. We discussed that the next step would be a trial in Houston. We asked Emilie how she felt about it all after being told her tumor was growing and she replied enthusiastically, “I’ve never been to Houston! We’re going to Houston!” Emilie always seemed to look forward, not backward.

     Well, perhaps one night she was looking forward when we had one of our daddy-daughter talks as I tucked her into bed. She asked about Heaven and what it was like. I told her I didn’t know, but what I did know is that we get to see all of our friends and family who passed away before us. I told her that I looked forward to seeing my dad again who passed away from cancer many years before. I told her that when it was my time, he would find me. Then, she looked up at me and told me that in Heaven, she would find me.

     So, I write all of this in order to reflect on a couple of posts I’ve seen recently through Facebook. One in particular was a death that hit very close to home for Candi and I. A month after losing his daughter, a father committed suicide. It brought Candi and I to tears and we shared it on Emilie’s page in a call for thoughts and prayers for the family. We were especially disheartened when one person posted a comment calling the act “selfish,” and we immediately deleted the comment. On the one hand, we did not want judgmental comments about this on Emilie’s page, but, at heart, Candi and I felt that the father’s act was far from selfish.

     When Candi and I originally saw the post, we confessed through hugs and tears, that suicide had crossed both our minds after Emilie’s death. But, both of us weren’t thinking of it out of despair, loss, or sadness. We thought of it because we were and always will be Emilie’s parents.

As parents, when your child gets sick, you do everything you can to make them feel better. There is a pride in kissing a boo-boo and making them feel better, even though kisses don’t medically accomplish the same things as Neosporin and Band-Aids. When they are little and you drop them off at daycare for the first time, you instinctively want to stay and watch out for them and never want to let them go. When they get bigger and go off to camp for a week for the first time, it is hard on a parent because you don’t know what’s happening to them. You can’t wait for them to get home safe and tell you all about their adventures. And, when they are diagnosed with cancer, you expend every ounce of your being fighting for them.

     You pray to God to switch places to take all of the hurt and pain instead of your daughter. You have to watch when they get stuck with needles and you console them when it takes three times because the nurse couldn’t find a vein that would work. You stay awake throughout the night as they lay sleeping in an ICU room for fear something will go wrong. You research at a feverish, manic pace in the hopes of finding that needle in a haystack that will be the one thing that will save your daughter’s life, even though everyone you talk to and everything you read says you won’t find it. Sometimes you wish to just find something that will make it better. And all the while you fight the disease, you also fight to give your daughter a chance to live at least some of the life she won’t get to live because the research says she won’t. And, when your daughter tells you it is too much, you work to give her the normal that she really wants. Finally, you fight to help your daughter pass on in peace, surrounded by family, friends, and her dog. Then, she dies, and is hopefully on to a new adventure. But this time, it is without you, and you don’t know what is out there awaiting them. As a parent, you have spent their lifetime protecting them, or trying to only to fail. That deep, manic need to protect your child doesn’t stop at death’s door.

     So, I contend that in this case suicide may not be a selfish act, but a deep act of love and devotion… true love. The greatest loves of my life are my children and I can only imagine that to be true for that father. The pain of losing a child that you are supposed to protect is greater and more suffocating than anything one could ever imagine. True love of your child drives you to need to be there for them, but they are no longer here.

      Let me make it clear that I am not advocating for or condoning suicide, but trying to give it the perspective of a parent who has lost their child to cancer. At the same time, Candi and I will never condemn a parent’s choice in this fight. Future research might turn its focus and consider those feelings as professionals work to help grieving families through this incredibly heavy horrible experience.

     As for us, suicide is not in our future. For this father, dreams of Emilie since her death where she is smiling give me some peace and hope. Her cancer gave her a crooked smile and she once asked me when she would get her smile back. The few times she has come to me in my dreams, she has her smile back, so I have a clear sense that she is happy.

     Candi and I also talked about having purpose. One of the best books I was given after Emilie’s death was Victor Frankl’s “Man’s Search for Meaning”. It is the story of the author’s surviving a Nazi concentration camp in WW2. Frankl had a reason to live, love of his wife and his work on logotherapy. As parents with two children, one of whom has passed away from cancer, we are torn between two realms. Emilie is in one, and Alex is in this one. Alex gives us purpose. Fighting cancer gives us another. Anything else would meant that Emilie fought in vain. We struggle, and always will, with living day to day without our daughter, but we take it day by day together. We are also lucky to have so much support as we do so.

     So, I know I have to wait until it is my turn to pass and will continue her fight in the meantime. And then, when it is my time, Emilie will find me.

(Just to clarify further--Neither of us are in a place where we would ever take our own lives.  There are too many here to live for and too many important things to see and do.  We do understand the pull of wanting to be with one's child again and wanting to be her protector always, so I just want to reiterate that idea.)

A Tsunami of Grief

   To me, grief used to be something I cried through.  There was a definite gradual slope to it:  Crying a lot, crying a little less and remembering, and then a little less with some introspection until there was a kind of acceptance which marked the end.  My daughter Emilie's passing away has been a grief like no other.  The beginning equivocated a pinball machine on steroids.  Not only was there quite a bit of crying which is a given, but there was also the inability to settle upon any one task or thought or decision as simple as what I wanted to watch on T.V.   My soul would not land anywhere and be still.

     It's hard for my brain, heart and soul to process life without her, and when I remember too much, the tears start to flow.  Memories are so inconsiderate because they appear at the most awkward of times--driving down the road, in the bathroom, at my desk at work--they don't consider audiences or circumstances or appropriate timing.  And sometimes the sadness just becomes too much to where I can't move or breathe.  At those times, the whole world is frozen in some grey void, and I feel very far away.

     As cancer parents, I do feel like we are strong for all that we have suffered.  There are many parents who scoff at that notion.  They hate people telling them they are strong, but I have railed against that and claimed that if we are able to wear pants and brush our teeth every day, then we are strong.  Otherwise I would be wasting away, wallowing in my bed forever.  Maybe I'm setting an extremely low bar here, but as I alluded before, losing a child is a supremely and achingly unique circumstance in that the parents who come out of the whole ordeal in one piece and with a sliver of sanity are rock stars.

     Now, that's not to say that I really feel like a rock star most of the time.  Really the only time I feel that way is when I can step beyond my grief and look at the world outside of that bubble, so the 10% of time when I pump my fists and tout my strength is very disproportionate to the 90% that I feel like a hot mess.  I still believe in that strength, but I have to remind myself daily of it. 

     I also have moments when I rail against the universe, believing I am entitled to a life of profound comfort and happiness because of all I have been through, but the harsh reality is there are no guarantees for that.  In my mind, I reason that I've suffered enough for ten lifetimes, so the joy should equal the pain, right?  If anything, my grief has taught me that life is one chaotic complicated unpredictable mess, and hopefully I'm building a measure of resilience in spite of it all.

     I guess that what this all comes down to is hope.  There is the spark of hope that one day I will be able to make sense of the grief.  I have hope that I will be able to call upon the strength when I need it to make it through another day.  Hope keeps me looking ahead to the other side of the darkness because somewhere deep inside of me I know the other side is there.  Then, maybe, I can remember what it is like to breathe effortlessly and be still.

 

Boom! Take That, Cancer!

     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!).
   

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. 

   

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.


   

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.