#SpartansWill

Many people know that Lacey Holsworth, PrincessLacey, died on Tuesday. She was 8 years old. She had relapsed neuroblastoma, cancer of the sympathetic nervous system. The outpouring of love and support for her and her family has been inspiring. Awesome. Humbling. And prolific. It is obvious that people around the world have been moved and inspired by this brave young woman and her fight against the #childhoodcancer beast. As a member of both the childhood cancer and Michigan State University communities, I am proud and grateful. I am grateful to the MSU students, student athletes, faculty, staff, and alumni who have rallied our community to share Lacey’s story and carry on her legacy. I am grateful that childhood cancer is getting national attention- as it should- and as every child diagnosed with cancer should. Lacey’s diagnosis, battle, and death are tragic. This should not happen. Cancer should not happen to anyone but certainly not to innocent children who have done nothing other than be kids. There is so much that is wrong about an 8 year old dying from cancer.

I am grateful that so many people have been moved to make visible expressions of their sadness and grief¬†over Lacey’s death. This is an amazing and important first step. Awareness is key. I am hopeful that people will now take the second, third, and fourth steps and make something happen. Let us not sit back and keep watching. Let’s do something.

Sean is the one who told me about Lacey’s death. Later that day he told me that he wrote to a high-ranking MSU official, volunteering to help organize something, something big that would make a difference. What Sean and I have learned through our own childhood cancer journey is that words and vigils are not enough. Our kids need action. They need awareness. They need people outside the community to care, and get it, and be involved. They need money for research so fewer of them are diagnosed, they get better, less toxic treatments, and can go on to live healthy lives as survivors.

Turns out my husband is an awesome writer, too. This is the email that he sent:

“I was moved and proud of my alma mater last night with the students’ and staff response to the loss of Lacey Holsworth. My family has been impacted by pediatric cancer as well, with my 8 year old son, Luke. He is a cancer survivor and four years off treatment. My family is one of the lucky ones. What we need though, is the Spartan community to do something. Being moved and proud for a night is not enough. These kids need help. And by help, I mean money for research. We have been very involved with St. Baldrick’s since Luke’s diagnosis. I would love to talk to you or anyone else about creating a fundraising event that helps and honors kids like Lacey, my son, Paige Duren and Arthur Ray and countless other kids in the MSU community beat this horrible disease and live full lives after treatment. I think this is what Spartans Will really means. We WILL do something.”

Sincerely, Sean Fochtman ’98 and 2000 MSU graduate

We are in conversations with some people here at MSU and hope that we can all organize something (don’t know what, yet) that will honor Lacey and her fight, and the 1000s of kids like her who are diagnosed each day. Some of them, clearly, are right here in our MSU community. There will be others. What we can all do is rally together and work hard to make a difference. #SpartansWill, right?

We welcome anyone out there who wants to join us. Thank you for reading and for supporting kids with cancer.

Go Green!

Lucky and grateful, not blessed

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)