Tomorrow

Tomorrow is December 12th. Diagnosis Day. Dx day. D day. THE day.

Usually this time of year, I am anxious. Tight. Angry. Yet, for the first time in eight years, I feel….”normal.” I have prayed for this day. Waited for this day to finally come. It did and I barely noticed it. It snuck up on me. People always say that don’t they? “Enjoy this time, it goes so fast” or “time heals all wounds” blah blah blah.

The class I teach is on Monday nights. In August I wrote down all 15 weeks, 15 Mondays, and posted them on our kitchen bulletin board. December 12th is a Monday. It’s been staring at me, in my own handwriting, since August.

And I’m fine. We’re all fine. And I finally mean it. I’m not just saying that to get people to stop asking me about it.

I bumped into D day last week. I was standing in the hallway outside my classroom waiting for the class before us to finish up, writing a note to remind my students about their final paper, due December 12th. I wrote out December 12th, looked at it and remembered. Not that I ever really forgot, it’s more like I was reminded. This year the waiting has been less..heavy. I wrote out 12/12 and had to immediately text Sean: “OMG! December 12th is next week. Can you believe it?” I was so excited that I had forgotten!

It happened again today. We were grocery shopping and in the orange juice section the boys started counting out how many more days until school break, until Santa comes, until NJ vacation. They were off because today is December 11th, not the 10th. I said out loud, “Today is December 11th. Huh.” Sean heard me, caught my eye, and said, “I know what you mean.”

I am not sure why this year is different. I’ve been keeping a gratitude journal since October 10th. Every day I write three or four things that made me happy, or that I’m grateful for. I’ve been praying more. I’ve been more open in asking others to pray for me. I went back to yoga. I am learning to breathe more fully.

Who knows if any of these things have contributed to my healing. Maybe none. Maybe all. Regardless, I’m going to keep doing them. I’m also going to stop looking for the perfect combination or magic formula. That’s where I get into trouble- I dissect every little thing, event, conversation. I weigh and measure it. I spin my wheels trying to make things work, instead of just letting them work.

We go to church every Sunday; it’s one of the things that I’ve always done and will keep doing. I confess (ha!) though that sometimes it doesn’t always do it for me. Sometimes church is one of the things that I try to make work. The choir picks random hymns that are too high for me to sing, there’s a screaming kid behind me, or the readings are for someone else.

Not today. Today, church worked. It was as if God was speaking directly to me. It was just me and Her today and it worked. Words and phrases lept out at me.

“Sorrow and mourning will flee….meet the Lord with gladness and joy” (Isaiah).

“Be patient. Make your hearts firm” (James).

Today is the third Sunday of Advent, Gaudete Sunday. Gaudete means “Rejoice” and today reminds us to take a step back and recall our joy. Gaudete is a light-hearted break in the midst of the pregnant waiting of Advent. Our priest’s homily challenged and encouraged me to be hopeful. “Hope is a desire for something good that is difficult to attain.” Whoa. Slow down there, Father. You’re speaking right to me and it’s making me kinda squirmy.

For years I have been desiring healing, to feel…free, loose. That is something good that sure as hell has been difficult to attain. Sometimes I felt distant from God. That S/He wasn’t hearing my prayers. Maybe I wasn’t praying hard enough, or right enough or even just, enough. Why was God taking so damn long?

Of course today’s readings were about hope and rejoicing. And of course, today was Gaudete Sunday, the day before D-day. Because that is how God works. That is God’s timing. I’m learning to trust that God is always with me. S/He has been working on my heart, helping me to be hopeful. It just took me a little longer to catch on. It took me so damn long!

Today I rejoice. I will continue to train myself to choose hope. Because I get a tomorrow. Luke gets a tomorrow. Even if tomorrow is D-day. Even if tomorrow is a hard day. I still get it. It’s mine to use or waste. It’s mine to embrace or push against. I rejoice! I choose hope!

 

Beginnings

The day before Thanksgiving my husband and I were able to visit the institution where we each got our start in student affairs and where we met and fell in love. The trip provided an opportunity to reflect on all we have been through, professionally and personally.

Residence life at a small, private institution was a great place to start my professional career. It was my first time supervising. I learned how to physically manage a new-construction building and all its idiosyncrasies. I served as a judicial hearing officer for the most “active” residence hall on campus and thus, had the largest caseload of all my colleagues. As a young and energetic professional, I also volunteered for any and all assignments that would give me experiences and skills outside of my functional area. As such, I advised funding board and several student organizations. I can budget with the best of them. Because of these experiences I was able to transition to student activities| leadership when I moved to my second professional position. For three years, I worked long and hard hours. I said yes, a lot. I created new programs and events and I took risks.

In the span of a career, three years isn’t that much. But it’s not nothing. Visiting the institution where I got my start reminded me of all of these things. It was wonderful to visit with colleagues and mentors and to chat with the VP| Dean who saw something in me and offered me that first job. I think too often in my work, I am so focused on the next step, the next move, that I underestimate what it took to get where I am today. I would guess that I am not alone in this. Life’s messages seem to be telling us that more is better, that to strive for something different or higher or more prestigious is “the” way to be. It is good to have goals. But, in working towards those goals, I think it’s important to take the time to reflect on where I’ve been.

Nice to meet you! Name tags & lanyards from a career well-lived

Nice to meet you! Name tags & lanyards from a career well-lived

We all have beginnings. I am grateful that my beginning in this profession was a good one. I look back at that time fondly and with gratitude. I would love to hear about your beginnings. Where did you start? How has that position shaped who you are today?

In the second year of my first professional job I fell in love with a coworker. We worked together, we were both Catholic, and he made me laugh. He still makes me laugh. Every day. Since that first date in September of 2000, we’ve been through a lot. More than most couples our age. We dated for two years while under the microscope of a full-time, live-in position. We survived a long-distance engagement and job search process. We have survived eight job changes, graduate school, unemployment, and parenthood. We shepherded our son through a major health crisis, all while staying married and keeping our younger son healthy and normal.

When we began though, we were young, excited, and full of hope. When you think about it, really, we knew very little about each other. I think this is the case for most people. In the span of a married life, there is no way to predict what will come your way. I certainly never thought that I would mother a child through cancer. The only thing that indicates future behavior is past behavior. I think we are lucky and grateful that our past, our beginning, was a good one. We are loyal, honest and we like being with each other. That’s how we started and that is what we keep working for now.

Driving through the small town where we shopped for a coffee table (that we still have), had our first kiss, first fight, first jobs, first everything reminded me of our sweet beginning.

Hope College, Holland MI

Hope College, Holland MI

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.)