Perspective is the only everything

Your hardest thing is your hardest thing.

I recently re-found a journal that I used in Spring 2008 when I was enrolled in a Leadership course. It was an elective in my doctoral program and one of the best academic experiences of my life. As part of the class, we were to journal- thoughts, reflections, quotes that stuck with us, etc. I kicked it old school and hand wrote all my thoughts.

My life in spring 2008 was very different from today. At the time, I had two healthy children. L was 2.5 and C was a nursing infant. S would bring the boys to my classroom every Tuesday night. S and L would go get dinner at the food court and I would sit in the hallway and feed C while my classmates debated leadership theory. I tried to leave the classroom door open and sit as close as possible so I could still hear what they were saying.

The final entry in my journal is dated April 26, 2008. The prompt was from our instructor Marilyn, “What is your heroic journey?” My response, written in pink, roller-ball pen was:

I don’t want to toot my own horn…but I really think that ‘this’ is my heroic journey. ‘This’ is being a full-time mom,PhD student, wife…w/ being a part-time professional. This is the hardest I’ve ever worked; the most reading & writing I’ve ever done; the most tired I’ve ever been; the most content and energized I’ve ever been.

I am my choices. I choose to be here. I choose to be a mom, wife, student…student, wife, mom…wife, mom, student. This is MY LIFE- OUR LIFE and I wouldn’t have it any other way. I’ve survived the crucible, learned from it, and moved on. Isn’t that a heroic journey??

Less than 8 months after that post, L was diagnosed with cancer. I was so naive, so blissfully unaware. At the time, though, that was the only perspective I had. At the time, what I wrote was my hardest thing. Re-reading that passage made me angry and sad. I wish that my hardest thing was being a poor, tired, nursing mother and student. I wish that my only concerns were sleeping through the night and how I would pay for next semester’s tuition.

Cancer stole L’s innocence. And mine, too.

I see friends, mothers, bloggers post (complain) on Twitter and Facebook about their kids. Broken arms, the flu, stomach viruses, ear infections. My tolerance for these minor (to me) complaints is very, very low. I read these posts and I want to scream, to shake people into awareness, to make people care. In my head, I am not gracious. I am mean, impatient, annoyed.

I try to not act on those feelings and I am not proud of them. But, I do feel them. All of what happened to L and to us is so wrong, so unnatural, and so unfair. But, the world kept spinning. Friends kept living their lives. I do not want them to experience what I did and I would do everything we were forced to do again if I knew that it would save L. I just wish that I didn’t know what I know.

Sometimes, in the deep, dark places…I think that the perspective I gained from L’s diagnosis, treatment, and subsequent long-term care makes me better than others. God, that sounds arrogant. I know this is not true. Before L was diagnosed, my hardest thing was negotiating school and motherhood. For some people, their hardest thing might be a child’s surgery to get ear tubes or an appendectomy. Cognitively, I get it. I am not any better than anyone else. Just different.

My hardest thing was my hardest thing. (And, what if L’s cancer diagnosis turns out not to be the hardest thing?)

While L was in treatment, friends of our went through divorce proceedings. When they told us about it they said something to the effect of, “I feel bad even saying this to you. I can’t imagine going through cancer with your kid.” To which we said, “I can’t imagine getting divorced!”

Your hardest thing is your hardest thing. It’s not a contest. It’s not a race. Part of leaning in to this “new normal” is how to deal with all this stuff. All this messy, icky stuff.

Perspective is everything. It’s really the only thing. I pray that God continues to give me grace to see.

Diagnos-a-versary

Three years ago today, December 12, 2008, the foundation of my world crumbled and all that I thought I knew was stolen from us. At approximately 5pm, in a very sterile, standard-looking patient room at University of Michigan CS Mott Children’s hospital, two oncologists and one pediatric surgeon told us that our three-year old son had cancer. That it had already spread to his lungs; “multiple nodules in each one.” That it was “treatable.” I asked one of them (whom became our son’s lead doctor and whom we now like and respect) if my son would die. And he told me, “With cancer, that is always a risk.” They shoved paperwork in my face (I think it was agreeing to treatment and that they could take a sample of my son’s tumor. But, honestly, I am still not sure what I signed that day.) Somehow, we made it out to our car in the parking garage. I have no memory of that. The next thing I remember is holding my husband’s hand while he drove us home in the dark.

My sister-in-law works as a youth minister. She loves God and does His work every day. She has tremendous faith and a gift for living in reality as well. Just this morning, she sent me a message saying that she was thinking of us today. I told her how angry I am, how cranky I feel. She told me that just because we are angry and sad doesn’t mean we aren’t grateful, too. Whew! That is exactly how I feel. She also told me once that God wants our honesty, not our piety. Well, then, here it is. Here it is in all its gut-wrenching reality!

Today, I feel conflicted, disjointed, off-kilter. I am angry, almost blindly so. As I write this, I am literally shaking with rage. My son was diagnosed with stage four cancer. The chemotherapy that was used to treat him is 25 years old and was created for adults. The list of long-term/latent side-effects is endless and devastating.

But, I also feel humbled, grateful, and hopeful. My son is still here with us. Every day, I work to be worthy of that gift. To be the best mother I can, to advocate for more funding and research for the children, to learn something from all of this, and to pay it forward.

Hope

“Hope is the thing with feathers that perches in the soul – and sings the tunes without the words – and never stops at all.” ~ Emily Dickinson

The further out from treatment Luke gets, and the more clean scans he has, the better his chances are for long-term survival and no recurrence. If Rhabdo kids relapse, it usually happens within the first year off-treatment. Luke is already 21 months OT and has had clear scans since October of 2009. He eats and sleeps well. He is doing well in school. He makes friends easily. He is kind and funny and smart.

Yes, I have hope; this is ironic, given that I was never a person who tended toward optimism. I have always been a “glass half-empty, but I am going to work really hard to make it full” type person. I have tended towards sarcasm and melancholy as covers for my fears and inadequacies.

Yet, in spite of myself, I have hope. My son is still here with us.

But, my son also had stage four cancer. So while I have hope, I also have perspective. And that is the rub.

Perspective

I so desperately want to “move on.” To let my guard down, to exhale. To believe that my son has been healed forever, that the cancer will never come back, or that he won’t get a different cancer later in life. (The statistics are grim and the chances of secondary cancer-as result of the very treatment that saved his life- are just as high. See: http://www.curesearch.org/ArticleView2.aspx?id=9268&l=9240)

I could choose to believe this. I want to choose to believe this. Some days, I do. But, the truth is..the raw, naked, awful truth is that this is not our reality. And this is certainly not my reality today. Anyone who has experienced any kind of trauma or loss knows that your old life no longer exists. And this is what cancer steals from families like ours: the blissful ignorance of every day normal life. The belief that the world is right and true, that bad things only happy to bad people, that parents outlive their children, and that if you are a good person, love your family, work hard, etc., etc., that you will remain unscathed.

As I write this, wallowing in my self-indulgent rage, there is a family in Massachusetts, who is burying their five year old daughter today. She fought neuroblastoma for almost three years. http://www.patriotledger.com/features/x890738774/Funeral-Monday-for-Charlotte-Kelly-5-who-died-from-rare-form-of-cancer

She died on my son’s birthday. She is being buried today, the three year anniversary of my son’s diagnosis. I am thinking of Charlotte Rose and her family. How by now, the funeral Mass is over and they might be on their way to the cemetery. How her parents might be holding each other to keep from falling. How someone, perhaps a grandmother or trusted aunt is holding her brothers’ hands and walking slowly, slowly to the spot where they will bury their sister, forever. How they are bracing against the wind, trying not to let it take their breath away. How that priest might be struggling to say something profound, to say anything that might provide comfort. Knowing, really that nothing will because so much of this day is wrong. Very, very wrong.

There is another mother in Minnesota who today grieves for her daughter. December 12th is her daughter’s birthday and the anniversary of her death. And still, I know another mother in Miami who’s daughter turns nine today. She is fighting rhabdo (the same diagnosis as my son) for the third time.

So, what I am supposed to do? Which path will I choose- hope or perspective? Is it an either/or decision? Can I actively live into both of these choices? I could live every day in fear, waiting for the other shoe to drop. Some days, I do just that. I let myself fall down the rabbit hole into the darkness of pity, doubt, anger, and fear. Diagnos-a-versary  might be one of those days.

Even as I write these words, I am embarrassed by how petty they sound, how self-absorbed and silly. My son is still here with me. I get to kiss both my boys every night and every morning; and I do, every chance I get. I get to have breakfast and dinner with them. I get to inhale their smell and hold them whenever I choose. I know too many mothers (and fathers) who cannot say the same. I know too many mothers who would give anything and everything to have what I have.

People from all over the world prayed for my son and for our family while he was in treatment. Thank you. The time you devoted to this, and the faith with which you put those prayers before God are a gift to us. Please do not ever stop. And, if I may ask another thing of you. Please pray for me as well. Pray that I have the courage to choose hope. Pray that I am strong enough to get out of my own way. Pray that I can acknowledge my anger and my fear. That I can name them, look them in the eye, and choose to not let them win.

Right before our son began six weeks of daily radiation treatment, our radiation oncologist told me, “Your hopes and dreams for him are not gone. They are just different.” Truer words were never spoken. The hopes and dreams I have for myself are not gone either. They are just different.

(The term diagnos-a-versary is borrowed from another 46 Mommas momcologist I know and love.)