Faith

Perspective is the only everything

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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.

Zach Sobiech

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I have been kind of whine-y and wallow-y lately for many reasons, some of them legitimate. I struggle sometimes with what to write because I don’t want to complain or appear ungrateful. I have a great life. But, I have also experienced extreme trauma and the recovery from that continues. The PTSD of our son’s cancer diagnosis strikes at the oddest times and without warning. Recently, we had to rent a car to get to NJ for my niece’s first birthday. Our car, it turned out, needed a new wheel bearing. Thanks Michigan winters and subsequent potholes. Then, we had an inch of water in our basement from a busted part in our sump pump. These things are minor, of course. But annoying nonetheless. And, they make me tired. Not sleepy. Like newborn baby, bone-crushing tired.

PTSD.

We have already endured the hardest thing. Haven’t we earned a pass for the rest to be smooth sailing?

Yesterday, I had to take L to a dermatologist for a suspicious mole. It is near the site of his primary tumor and was radiated, so his oncology team and pediatrician wanted it looked at by an expert. I left work early, pulled L out of school early, and then arrived to the appointment early. And then proceeded to wait 90 minutes in the waiting room. Blerg. Blerg. Blerg. Now, this is nowhere near what we endured while L was in treatment, but it is still scary. What if the mole was something? What if they wanted to biopsy it? Lucky for us, our five minute conversation with the doctor revealed that the mole is just a mole. He was nice actually. He didn’t apologize for being an hour late to our appointment, but he was knowledgeable and thorough.

As we drove home from the appointment, I got more and more angry. We waited so long in that stupid waiting room. L and I missed C’s T-ball game because we got home so late. Instead of being relieved that we got good news, I was annoyed and amped up. Turns out, Sean was hit hard, too. He told me later that he kept checking his phone looking for updates from me. Waiting really is the hardest part.

PTSD.

L and I decided to take a walk. As we headed down our block, L slipped his bony little hand into mine and started swinging. No prompting or begging from me. Just a moment of pure childhood innocence. As we walked around our block, he kept commenting on all the trees in bloom and how good they smelled. Lilacs, flowering crabapples, dogwoods, honeysuckle. The sweet, sweet smells of spring (Finally, spring!) in Michigan. “Spring and summer are my favorite seasons, Mom.”

Earlier that day, I had seen a tweet from the Children’s Cancer Research Fund (@childrenscancer) in MN about Zach Sobiech, asking people to share their stories and memories of Zach and how he has touched our lives. Today, May 20, marks the one year anniversary of Zach’s death from osteosarcoma. Although I never met Zach in person, I feel as if I know him. My sister-in-law Annie was his youth minister in Stillwater, MN. She provided updates to us about Zach and his treatment and we prayed for him and his family from the moment he was diagnosed in 2009 until his death. I read his mom, Laura’s Caringbridge posts and like all of us, hoped for clear scans and no recurrence.

I am not sure if I consciously thought about Zach and Laura while I was taking a walk with my own son. But, I think that subconsciously I was thinking about them. The Holy Spirit tapped me on my shoulder, or more accurately hit me over the head with a hammer, and told me to pay attention to that moment with L. There will come a day when he won’t hold my hand, or willingly take a walk with me. I know this. And through grace, I was reminded of that and paid attention to the moment that was right in front of my eyes. In his Soul Pancake video, My Last Days, Zach talks about life being a bunch of beautiful moments strung together. He is very wise.

The truth is, our family did a very, very hard thing. But, we didn’t do the hardest thing. We didn’t bury our son. He is here with us. He survived. And because of that, I must choose. I must choose to enjoy these fleeting precious moments that I have with both of my children. I must choose to make something good come from something so awful. I owe it to L. I owe it to Sean. I owe it to C. I owe it to Zach. I owe it to Laura. I owe it to my 46 Momma sisters who have also lost their children. I owe it to myself.

“I want to be known as the kid who went down fighting and didn’t really lose.”- Zach

Zach, you made one hell of a fight and you didn’t lose. Your life is a shining example to all of us here who continue to live in faith, and work hard to raise desperately needed money and awareness for all kids with cancer. Thank you, Zach.

Lucky and grateful, not blessed

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A few weeks ago this post “The One Thing Christians Should Stop Saying” circulated through my facebook feed. I posted it to my own wall and, of course, referenced it in terms of our family’s journey through childhood cancer.

Sometimes, the hard part about blogging (for me) is that there are so many other writers out there who have said exactly what I think and feel and I am like “well, I have nothing to add because they said it already.” This is one of those posts. I love how Scott lovingly and gently calls us Christians out, himself included, for assigning intentionality and thought to God. God provided cars and cash to his faithful followers. What a blessing. No. “First, when I say that my material fortune is the result of God’s blessing, it reduces The Almighty to some sort of sky-bound, wish-granting fairy who spends his days randomly bestowing cars and cash upon his followers… God is not a behavioral psychologist.”

Boom.

There it is. God does not cause anything. We are humans. We choose. Although Scott’s post refers to material wealth and “blessings” all I have to do is insert cure or cancer-free and this is exactly how I feel about our son’s cancer diagnosis and subsequent good news. Since diagnosis in 2008 and subsequent “normalcy” of off-treatment (2010 to now) I have struggled with this idea of blessings. As a Christian, I believe that I am called to use what I have to help others. Is that a blessing? That I have something (or someone) that others don’t? Am I more or less blessed than another childhood cancer parent? I don’t think so and I would never, ever say that to another childhood cancer family. The faith journey that I am walking has taught me that there are no blessings. There are luck and gratitude. The blessing is in choosing to recognize them as such and then pay it forward. The God that I am in relationship with holds me when I weep and laughs when I laugh. The God I know and love lifts me up when I am weak or fearful. The God I know rejoices with me. God holds me.

A few weeks ago I got inspired to clean closets and bag up old clothes for donation. I posted this photo to Facebook with the caption “Spring cleaning. Found these jammies that L wore during treatment. He was THAT little. So stinking grateful to be where we are and committed to keep fighting.”

The jammies L wore during treatment in 2009

The jammies L wore during treatment in 2009

I almost wrote “blessed.” In fact, I think I did write blessed and then I deleted it. Because the truth, for me, is that I am not blessed. I am lucky. I am so unbelievably lucky that my son was diagnosed when he was, that we have health insurance that covered his treatments, that we live in a state where there is world-renowned children’s hospital, that my husband and I had cars that could get us to that hospital, that we had family & friends who rallied around us, that we had employers who supported us and let us create flexible schedules….the list goes on and on and on.

I am grateful that my son made it. I am grateful beyond measure that my son beat the odds stacked against him. I am grateful that our younger son is normal, healthy, and not bitter. I am grateful that my husband and I prayed together before our son was diagnosed so that when he was sick, it wasn’t weird to us to pray together, or to ask others to pray with and for us. I am grateful that my husband and I are still married and still madly in love. I am grateful that my husband is still my best friend.

Being lucky and grateful helps me carry on and keep pushing for awareness and funding for childhood cancer. Being lucky and choosing to be grateful gives me courage and strength to advocate for others. To frame my son’s journey and subsequent life as a survivor as a blessing is an insult. If we are blessed, then my son was chosen by God to suffer, and then chosen by God to be “cured.” If this is true, then the opposite is also true. God chose other children to suffer and to die. That their illnesses and deaths must be for a higher purpose because God willed it to be so. I do not believe this. I cannot have faith in a God that would cause such physical and emotional agony to children. I cannot have faith in a God that would let parents bury their children.

To say my son’s survivorship is a blessing is an insult because it completely devalues his fight. He fought to survive. The things his little body went through are unspeakable. The long-term consequences of his treatment are also unspeakable. That is no blessing. That was a challenge, a crappy hand, bad luck.

Bad things happen to good people. Bad things happen to children. There is no why. There is no reason. There is no blessing.

The blessings come after, in the choosing. Choosing to make something come from it. Choosing, daily, to carry on the fight. To keep pushing, to keep speaking up and out for the kids. I am not hard-wired to be optimistic. So for me, this daily choosing is hard. Some days it is bone-crushingly exhausting and exasperating. But, it is a choice I continue to make because I am lucky. And grateful.

There is a group of rabbis who shaved their heads yesterday. They have already raised $574K for the St. Baldrick’s Foundation.  One of the shavees, Jason Rosenberg, wrote a blog post about why he is shaving. He knows Superman Sam and his parents. They are also rabbis. They lost Sam to cancer last year. He speaks so eloquently about Sam’s parents making something. About having something good come from something so awful as childhood cancer and the death of a child.

Jason writes,

“This is their ‘what now?’ Through their unfathomable courage, grace and love, they brought dozens of Rabbis, and hundreds and thousands of others, along on a journey to do something. To make something. To redeem something. They are making something holy out of the least holy thing my mind can fathom.

And, in the end, that may be the whole of religion. Making something holy out of something which isn’t. Making order out of the chaos. I think that’s what Kushner meant when he said that ‘why do bad things happen?’ is the only religious question. Ultimately, religion is about finding order in the chaos, about finding meaning in the void.”

This idea of making something completely resonates with me. Childhood cancer is messy and chaotic. Advocating and fighting for the children is trying to make order out of it. (Maybe I was Jewish in a former life?)

No blessings. Just choosing to make something meaningful.

(I am not shaving this year. But, you can support my 46 Mommas fundraising efforts by donating here: http://www.stbaldricks.org/participants/mypage/663601/2014)