Wednesday, August 21, 2019

Cancer Everywhere

Since the two year anniversary of Grace's relapse on August 7th, cancer has been haunting me.

I see it everywhere. I've had more PTSD moments and more memories than ever before.

On the 7th I kept feeling panic and fear and couldn't understand why, because Grace is doing amazing. Then I remembered what my subconscious couldn't forget. All the feelings from that day came back to life and there was nowhere for me to hide from them.

I haven't worried about Grace relapsing since she went swimming at a friend's house and got petechiae (bruising) from her swim goggles. I had a full blown panic attack, but that's been the only time this year that I considered that Grace could relapse.

Maybe that's why these memories are here. When she was first finished treatment, three years ago, I was so consumed with the fear that Grace would relapse, that I didn't have any room left to feel with. Then she relapsed. Then one year in isolation at home. This is the first year that has felt safe since 2014 when she was first diagnosed.

I now feel confident Grace is going to be ok from her bone marrow transplant, she's active and strong... maybe that's why my guard is down enough to remember again.

I'm thankful that I'm crying more, thankful that I'm hurting more. It's better than the hollowness of denial and depression. And I've been trying to accept each memory, name it as horrible, but allow it to exist. I thought maybe there was a way to heal it, a way to make it stop hurting, but there's not. There's no good way to kill it either.

Sometimes it feels like, why bother to remember and relive all the pain when it doesn't change anything, it just hurts? It does change something, the memories keep me from being a shell of a human. I'm hoping that each time I allow a memory or a feeling or a fear to exist that God can help it hurt a little less. And maybe it won't.

But these memories did happen, they exist as part of me. It still makes me feel completely helpless to remember, but that's the truth of life. We are helpless to control life or death. That in itself is a painful memory.

And I still have so much regret for not being able to do the impossible, as if it was somehow it was within my power to change what happened. I feel so much regret for the time stolen from my family.

I hate to admit this was my past, that these were my kids' childhoods. I hate it. I hate it!

I still wish I could have taken Grace's pain, I feel it so strong some days that I'd rather lay down and die than remember her in pain. I still have the feeling that maybe, just maybe, I could have done something different, and somehow, miraculously, I could have protected her from cancer.

I think today has been hard because it was the day Bailey was diagnosed four years ago and Julia posted about it. I just remembered how much pain Bailey was in before she died. They couldn't stop it, though she was on so much pain medicine. And when she died it was such a relief to know she wasn't suffering anymore. And I feel like less of a human for having ever thought that. But it's true. Death was God's answer to prayer to stop her pain, though my prayer had been for healing and life.

The memories make me feel so helpless. For a person who loves to solve problems, it's the deepest grief to watch my children suffer- Grace from cancer, Luke from loneliness- and not be able to do a damn thing to help them except to help them bear it.

It's 11pm...I have to go to sleep so I can make the kids lunch for school in the morning. Tonight's grief was a startling burst.

So with that, I must go to sleep. I put my hope in God's hands, and my head on his shoulder so he can hold me. I need it tonight. In the morning I'll wake refreshed and get to see my kids smiling again, ready to start life new everyday.

And that's why these memories are good, they remind me each day to be thankful, to readjust my priorities, to laugh more and to not take anything for granted.

Monday, April 22, 2019

Boeing invites families to site which may have given my daughter cancer

Bio: Melissa Bumstead has counted over fifty cases of childhood cancer in her area, including her daughter, all surrounding the Santa Susana Field Lab. She has collected over 625,000 signatures demanding a full cleanup of the former rocket and nuclear testing site.

This Earth Day my family won’t be enjoying the outdoors together. Instead, I’ll be protesting Boeing’s decision to lead an Earth Day hike through the contaminated fields of the Santa Susana Field Lab (SSFL), the toxic site which may have given my daughter and at least fifty other children cancer.

Millions of Angelinos’s lives are at risk of being exposed to the carcinogenic  contaminants found on this 60 year-old nuclear and rocket testing site, yet Boeing is inviting families to explore it, at ground zero, on Earth Day. This is unconscionable.

I grew up hiking through the rolling hills of Thousands Oaks and camping by the beach. My husband and I planned to raise our children to love the outdoors as much as we did until Grace, my four year-old daughter, was diagnosed with a rare and aggressive form of leukemia. We traded catching butterflies for hiding from germs in the confines of a hospital room, just so she could survive.

Childhood cancer in America is rare, so I was in disbelief when we met another child with cancer who lived across town the first week my daughter was diagnosed. Soon after I met Bailey, whose mom recognized my daughter from the park near our home. Then Hazel, who lived just over the hills. Bailey and Hazel both went through treatment the same time as my daughter. Grace survived, but her friends both passed away. Bailey was two. Hazel was seven.

As I kept meeting more local children fighting cancer I began to panic. I reached out to other cancer parents and we began documenting our children. As our map grew to fifty-four children we realized that all of our families circled the Santa Susana Field Lab. It was the first time I had heard of the facility.

The Santa Susana Field Lab began operation in the late 1940s as a nuclear and rocket testing facility. In 1959 it experienced what is now considered to be one of the worst nuclear meltdowns in U.S. history. A million gallons of trichlorethylene (TCE) seeped into the soil and groundwater. Hazardous waste was burned in open air pits. Plutonium-239, radium-226  and uranium-235 were on site. These are some of the most carcinogenic materials on Earth, but they were knowingly mishandled, even when it put their own workers and the families who lived below the hill at risk.

Today, half a million people live within ten miles of the site, now owned primarily by the Boeing Corporation. But Boeing has broken legal promises and has resisted the cleanup at every step. They have greenwashed their efforts with a campaign to protect the contaminated flora and fauna found on the land. But the worst of all, they continue to host annual Earth Day hikes on the site. Along the trail they praise the scrub oaks and wildlife but they never mention the horrific contamination just below the topsoil.

Boeing is willing to risk the health of these hikers because a PR campaign is less expensive than remediation. They are willing to put children like my daughter at risk of cancer because their shareholders matter more to them.

My daughter had just turned four when she was diagnosed with an exceptionally rare and aggressive form of leukemia.

Her treatment required up to ten times the regular amount of chemotherapy and we spent over one hundred days living in the hospital that first year. She became so weak she couldn’t walk, and her mouth and GI tract were covered in painful lesions, yet she tried to laugh and play the best she could.

When Grace relapsed a year and a half later we spent five months inpatient, two of which were in extreme isolation in the ICU ward after full body radiation and a bone marrow transplant. Grace spent her days vomiting bile, connected to half a dozen monitors and medicine pumps, addicted to morphine. I stayed by her side for days at a time. Night and day blended together. Once I opened her door and was shocked to realize there was a hallway beyond it. I went outdoors and realized I had forgotten what birds sounded like.

I couldn’t sleep at nights knowing that other children were also at risk so I started a Change.org petition demanding that the Department of Toxic Substances finally require Boeing, NASA and the Dept. of Energy to 100% cleanup the field lab. We’ve collected over 600,000 signatures and hundreds of comments from people with experiences similar to that of my family.

I still feel sick every time I’m confronted with Boeing’s shameless hypocrisy, as they try to portray themselves as nature conservationists while they prepare to leave up to 98% of the carcinogenic and toxic waste on site permanently. That’s not protecting nature.

Our children deserve to be protected too. “They’re children,” I often scream in my mind, “for God’s sake, they’re just kids. Why won’t they protect our kids?”

That’s why I am bewildered that Boeing would be willing to take families hiking on ground zero as part of their greenwashing campaign. They understand the danger that these people will be unknowingly be exposed to – carcinogens in the soil, dust, and even in the pollen of the plants.

It’s hard to describe the pain of watching your child fight cancer twice, knowing that it might have been prevented. That’s why local cancer parents and myself will continue to tear down mountains with our bare hands, if that’s what it takes to protect children from the contamination that Boeing refuses to acknowledge.

Nature has been defiled. Our children's’ childhoods tainted or lost. Our community broken.

It’s time for Boeing to actually protect nature by completely remediating all of the Santa Susana Field Lab.

Wednesday, December 5, 2018

Be of Good Courage

I've been really discouraged the last few days. Not about Gracie- she's doing amazing and she's thrilled that her hair is getting long enough to style. I'm still working to get the Santa Susana Field Lab clean, and it's been overwhelming since last August. It's been literally non-stop for almost six months.

Since the beginning I didn't want to get involved advocating for the site's cleanup. I was terrified and every aspect of it is outside my comfort zone. In every way I am unqualified. I'm not a scientist or have any scientific education.

I'm an introvert, I'd rather write and read books than help lead a community movement. By nature I hate questioning authority, as rules and authority make me feel safe. I find myself always seeking the approval of "smart people" to validate my insecurities that stem from always feeling second-class to my A+ peers in a high-achieving community.

I HATE confrontation. I HATE people being angry, annoyed, bored, or in anyway displeased with me. I HATE stepping out into the unknown. Especially in the beginning, when I didn't know the facts and I didn't even know if Boeing and the DTSC were lying or if the cleanup advocates were lying...the stress of trying to do the right thing when I didn't know up from down had me in tears.

I tried to escape getting involved so many times. So, so, so many times.

And I'm going to be honest here. As much as I am dreading any tisk-tisks from some readers, what I'm about to write is from the beliefs I have as a Christian. I certainly don't expect anyone to have to share my views- ask anyone in Parents Vs SSFL leadership. We come from all different values and belief systems, and I love that our group is so diverse and we respect and value these differences. So what I'm writing is to let you get to know who I am, from my point of view. That's all. Hope you feel safe enough to keep reading, and if not I totally respect that too. 

There were so many times that I wanted to run away, and each time I felt God pull me back. Not against my will, but he strongly suggested that this was his path for me. It came to the point where I had to admit that if I were to run away from it again that I would be blatantly disobeying God, just like Jonah.

I reached a decision moment that come hell or high water, failure or victory, answers or questions...I decided that no matter what, I would not leave this cause until God released me. And everytime we hit a brick wall, when there was NO way to go forward, God brought an answer that allowed me to keep going. But that hasn't spared me from being very human and very vulnerable to my weaknesses.

And the last week I've been very discouraged.

Last week it was hard to get out of bed, hard to make myself eat, wanting to cry at the drop of a hat, wanting to sleep all the time. I think most of it was because the last month has included the fires near my home, my parents and in-laws having to evacuate, my mom hospitalized from a fall and needing surgery, family birthdays, my colds and sinus infections, both kids getting pink eye, thanksgivings, and my kid's school volunteering.

I'd overdone it, was too involved in too many things, began isolating and was too busy to recuperate. That's always a dangerous place to be for anyone.

I was listening to this podcast last night and the Beveres first spoke about God's call on women and then about what the opposite of discouragement is. According to them....it's courage. Courage to keep going even when things aren't working out like you hoped. Courage to keep going even when people are negative and caustic. Even if the path is unknown and failure is almost certain. In a lot of ways I feel like Frodo the Hobbit, but with less hairy feet.

In the podcast they were saying that when we feel under attack, and if it's discouraging us from the job has given us to do (either small or large) then we should pray God's word over ourselves, preferably out loud. So I'm going to be listing them out here so I can find them easily when I need to pray again...and again...and again. If you're discouraged feel free to pray them outloud too, and add your favorite verses on encouragement in the comments.

Joshua 1:9
Have not I commanded you? Be strong and courageous. Do not be afraid or dismayed, for the Lord your God is with you wherever you go.”

Matthew 11:28
Come to me, all who labor and are heavy laden, and I will give you rest.

Romans 8:28
And we know that for those who love God all things work together for good, for those who are called according to his purpose.

1 Corinthians 9:24
Do you not know that in a race all the runners run, but only one receives the prize? So run that you may obtain it.

Philippians 4:6-7 
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Jesus the Messiah.

Galatians 6:9
And let us not grow weary of doing good, for in due season we will reap, if we do not give up.

Philippians 4:19
And my God will supply every need of yours according to his riches in glory in Christ Jesus.

1 Samuel 3: 10, 19
Then Samuel said, “Speak, for your servant is listening." The Lord was with Samuel as he grew up, and he let none of Samuel’s words fall to the ground.

1 Peter 1:6-9
In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.

2 Corinthians 4:8-9
We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed;

Isaiah 41:1
Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

Isaiah 40:3
But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

Psalm 34: 17-19
When the righteous cry for help, the Lord hears and delivers them out of all their troubles. The Lord is near to the brokenhearted and saves the crushed in spirit. Many are the afflictions of the righteous, but the Lord delivers him out of them all.

Jeremiah 29:11
For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.

Jeremiah 20: 7-13
Now I am mocked every day; everyone laughs at me. When I speak, the words burst out. “Violence and destruction!” I shout. So these messages from the LORD have made me a household joke. But if I say I’ll never mention the LORD or speak in his name, his word burns in my heart like a fire. It’s like a fire in my bones! I am worn out trying to hold it in! I can’t do it!

I have heard the many rumors about me. They call me “The Man Who Lives in Terror.” They threaten, “If you say anything, we will report it.” Even my old friends are watching me, waiting for a fatal slip. “He will trap himself,” they say, “and then we will get our revenge on him.”

But the LORD stands beside me like a great warrior. Before him my persecutors will stumble. They cannot defeat me. They will fail and be thoroughly humiliated. Their dishonor will never be forgotten. O LORD of Heaven’s Armies, you test those who are righteous, and you examine the deepest thoughts and secrets. Let me see your vengeance against them, for I have committed my cause to you. Sing to the LORD! Praise the LORD! For though I was poor and needy, he rescued me from my oppressors.

Judges 6: 6-24
 The angel of the Lord came and sat down under the oak in Ophrah that belonged to Joash the Abiezrite, where his son Gideon was threshing wheat in a winepress to keep it from the Midianites. When the angel of the Lord appeared to Gideon, he said, “The Lord is with you, mighty warrior.”

“Pardon me, my lord,” Gideon replied, “but if the Lord is with us, why has all this happened to us? Where are all his wonders that our ancestors told us about when they said, ‘Did not the Lord bring us up out of Egypt?’ But now the Lord has abandoned us and given us into the hand of Midian.”

The Lord turned to him and said, “Go in the strength you have and save Israel out of Midian’s hand. Am I not sending you?”

“Pardon me, my lord,” Gideon replied, “but how can I save Israel? My clan is the weakest in Manasseh, and I am the least in my family.”

The Lord answered, “I will be with you...And the angel of the Lord disappeared. When Gideon realized that it was the angel of the Lord, he exclaimed, “Alas, Sovereign Lord! I have seen the angel of the Lord face to face!”

But the Lord said to him, “Peace! Do not be afraid. You are not going to die.” So Gideon built an altar to the Lord there and called it The Lord Is Peace. 

Isaiah 43: 1-4
But now, this is what the LORD says-- he who created you, O Jacob, he who formed you, O Israel: Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior; I give Egypt for your ransom, Cush and Seba in your stead. Since you are precious and honored in my sight, and because I love you, I will give men in exchange for you, and people in exchange for your life.

1 Kings 19: 4-
“I have had enough, Lord,” he said. “Take my life; I am no better than my ancestors.”  Then he lay down under the bush and fell asleep. All at once an angel touched him and said, “Get up and eat.” He looked around, and there by his head was some bread baked over hot coals, and a jar of water. He ate and drank and then lay down again.

The angel of the Lord came back a second time and touched him and said, “Get up and eat, for the journey is too much for you.” 

So he got up and ate and drank. Strengthened by that food, he traveled forty days and forty nights until he reached Horeb, the mountain of God. There he went into a cave and spent the night. And the word of the Lord came to him: “What are you doing here, Elijah?”

He replied, “I have been very zealous for the Lord God Almighty. The Israelites have rejected your covenant, torn down your altars, and put your prophets to death with the sword. I am the only one left, and now they are trying to kill me too.”

The Lord said, “Go out and stand on the mountain in the presence of the Lord, for the Lord is about to pass by.”

Then a great and powerful wind tore the mountains apart and shattered the rocks before the Lord, but the Lord was not in the wind. After the wind there was an earthquake, but the Lord was not in the earthquake. After the earthquake came a fire, but the Lord was not in the fire. And after the fire came a gentle whisper. When Elijah heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave.

Then a voice said to him, “What are you doing here, Elijah?”

1He replied, “I have been very zealous for the Lord God Almighty. The Israelites have rejected your covenant, torn down your altars, and put your prophets to death with the sword. I am the only one left, and now they are trying to kill me too.”

The Lord said to him, “Go back the way you came...Yet I reserve seven thousand in Israel—all whose knees have not bowed down to Baal and whose mouths have not kissed him.”

Tuesday, November 6, 2018

Hidden Somewhere



As you'll see from the video, Grace has made a huge step by re-hairing her doll Serena, and by re-naming her Claire. Serena is the bald, American Girl doll given to her on the day Grace shaved her hair off, after chemo had claimed most of it. Apparently Claire has all the memory Serena does, of having been with Grace through her relapse, and being inpatient for months, and all the lonely days spent at home healing.

But Claire is cancer-free and healthy.

Claire is ready to play actively, not just cuddle in the hospital bed. Claire can go to school, marry a prince, ride a horse. Claire is also ready to celebrate Grace's one year anniversary of her bone marrow transplant tomorrow.

I've heard from many fellow cancer mamas that the days leading up to an anniversary is the hardest, sometimes it's even harder than the day itself. I think that's true for me, but I don't feel it. The pain, the fear, the memories...it's all there, but it's hidden so deep inside me that I can't find it. I feel a lot like I did a year ago when we were living inpatient, like I was reading someone else's story but not living it. 

I think it's been really affecting my relationship with God. He's been pretty silent lately, but the last few weeks it's not just the quiet. It's the feeling of a barrier between us and I haven't been able to get past it. I've been praying for God remove it, and yesterday I finally realized what's causing it.

It's me. 

I have hidden my pain deep inside my heart and I don't want God to touch it. And I'm pretty sure if I were to let him, it's the first place he'd go, because that's where I'm drowning and most in need of rescue. But the thought of dealing with that pain is so frightening that I've been casually keeping God at an arm's length, without even realizing it.

I can see it today.  And I do/don't want to change.

I know if I can't open that part of me, God can't be part of my life, not really. He wants the real me, as ugly as I can be. He won't settle for my facades. He isn't able to reach my heart if I've locked it up.

I had a bit of insight yesterday when I helped at a car crash. Whe trauma hits, I calm down. I'm a fixer, a helper. I don't know to grieve. I don't know how to admit I'm broken. I'm better at turning off cars leaking gas and standing ready to pull the man out should the car ignite. I can do crazy, busy, daring, with total clarity.

But intimacy is more than big moments. Intimacy happens in the quiet nothings. And I haven't allowed any of them because they hurt. My numbing drug of choice lately has been "busy."

And a lot of that busy has been part of what God has called me to...it's just that I've taken things too seriously and made my prayer life about requests and reports, not intimate friendship. I've been referring to God as "boss" and "coach" and not as "Abba," which is the term Jesus used in the Bible,  (Aramaic for "daddy.") I've found reasons to not go to church, reasons to not have devotional time, reasons to keep my spiritual life as shallow as possible, without even realizing it. 

I think it's because I'm still mad at God for allowing Grace to get cancer twice. Some days I'm at peace with it, but especially near anniversaries, all I can remember is the pain. The helplessness. The long, fearful nights and the slow, morphine-filled days.

I've been having flashbacks again. Moments when I'm back in the hospital room. I can see everything, as if I got sucked into a movie. I've been hit with moments when I suddenly understand the enormity of what Grace went through. Moments when I remember the dangers that delayed side effects could bring.

As soon as I feel it, I'm denying it.

I get so tired. Physically. I think it's my body's way of trying to protect me. Writing this I've had to stop and lay my head on my keyboard five or six times to rest. I feel my heart constricting, my eyelids getting heavy. My whole body seems to slow down like I'm about to hibernate from the cold of my reality.

Or I flip channels in my brain. I remember Grace being in so much pain that she refused to eat even ice cream...what was that show I watched last night? It's my mind trying to push the pain into the corners of my mind so I can function. But it keeps seeping out.

Today I finally had the courage to whisper a prayer that invited God back into all my pain. I acknowledged that the pain is too great for me to bear, I can't do it without his help and I'll drown in it if I don't let my support team know what's boiling inside me.

I think that's what Paul was talking about when he said in Philippians, "I can do all things through Jesus Christ who strengthens me." It's a verse often misquoted to claim victory over trivial things but when Paul wrote it he was waiting to be executed. I think it should be translated, "I can suffer all things because Jesus strengthens me."

And today I felt the barrier come down. 

Monday, August 13, 2018

Grief and Trust



If you get the chance, be sure to click the link from BBC above and watch the part especially where she draws grief. I had always assumed someone had to die to feel grief, but I am grieving what Grace (and Luke, Chad and myself) have been through with her cancer. And my grief isn't limited to her suffering from cancer, but also my own learning that life is messy, dangerous, and out of my control.

Accepting this is what grief can look like was one part of my struggle, but how to deal with it was even harder. I didn't want to "move past it," as had been suggested to me many times in many ways. It was a major part of Grace and Luke's childhood. It was saturated with meaningful friendships. It was the crucible for my marriage that nearly destroyed us, but by the grace of God, purified our love for each other. It was where I learned to trust God. If I move on, I leave that behind.

Even if I wanted to "move past" or forget, it would mean going back into denial. I tried that the first time Grace had cancer. I tried to drown out the memories and feelings with compulsive cleaning, too much wine, and controlling every detail of life until my children and husband wanted to escape me. Until I wanted to escape me. 

I've spent the last two years learning how to live out of denial, and I knew I couldn't go back into it. The tradeoff is when you're not living in denial you feel the pain. All of it. On the days when the grief nearly strangled me I wondered if denial really was the only option to survive.

The grief on Grace's relapse anniversary was devastating. I couldn't function, even on depression medicine. I was numb one moment and hysterically crying the next. The memories were vivid. I could even smell the antiseptic. I remembered moments that I had forgotten and they were as real and frightening as when they had happened. I didn't know if this is how grief worked.

The BBC video, when she was sketching grief, really helped me. It's very true that the grief doesn't go away. Even with denial, even with intentionally burying it, grief really never leaves. I learned I won't have to worry about losing the good parts of it, if I let outside life grow up around it. It's still there and strangely, that comforts me. I also realized that grief can flare up, and that's ok too. I found that after Grace's relapse anniversary, it did calm itself and looking back, I'm thankful for the flare up. I grieved...but it was worth grieving over. To ignore the pain and the hardship seems like I'm minimizing the suffering and pain Grace endured. It was bad. It deserves grieving. 

I've also been really focusing on trusting God lately. The flare up of grief around Grace's relapse anniversary was as painful as the day she relapsed. The first time Grace had cancer, we felt God's presence so strongly in the hospital room that Chad and I never doubted for a second that He was, and would be, with us. 

The second time...nothing. Not even holy crickets. That was very painful. It didn't last, but the wound is still fresh. I think He was silent so that we'd rely more on the relationships we had been working so hard to make. And to trust His word and His promises, even when He is silent. But it was painful all the same. Writing it now brings a knot to my stomach. Even if God had a good reason, it felt like abandonment.

Her relapse itself felt like abandonment. Grace's relapse was probably caused by 1 or 2 cancer cells out of 37.2 trillion healthy cells. And I just didn't understand why God didn't solve the problem himself. Wiping out two cells really isn't that hard if you're God. It just seemed avoidable. It seemed like if he cared, He could have intervened and saved her from suffering again. But he didn't. And even if I know the reason theologically, it didn't heal the wounds in my trust with God.

What hurt again was that the whole anniversary of the relapse, God was silent. Normally when I hear God's voice, its a voice that isn't heard with my ears, but it is powerful. I almost always know that it is GOD and not me, and it always thrills me. He did speak a few times during these last few weeks, but it was such a quiet whisper. I know it was Him because it matched up perfectly with the Bible, it was true, and it was outside my own thoughts...but so painfully, painfully quiet. It was guidance, but without the reassurance of his powerful presence and love. It felt the same as when she relapsed. And that brought up the abandonment feelings twice as hard. 

The thing I have learned over some twenty years walking with God is that he's very intentional. I trust him enough to know that if he is silent...then it's for a reason. It wasn't because of my sin, I'm pretty sure it's because he wanted me to focus on other lessons he's teaching me. Like trust and forgiveness.

I've been so critical of other Christians. Really. Badly. I feel resentful that so few of them can relate to my pain, let alone guide me in it. I've been hurt by many who have misquoted the Bible at me, who've encouraged me to believe promises that God never made, who've looked down on me in their self-righteousness because I am so clearly human. And in my unforgiveness I've judged them for what I felt was their "petty" trust in God. 

Because God forgiving all our sins feels great, once you've finally accepted it as true. Knowing that you're now a child of God, loved, and free from sin and shame makes you feel pretty awesome about yourself. There are many victories. God breaking spiritual chains and addictions is a life full of new freedom. In some ways we do trust him less at this phase, as there are visible results that prove Him faithful and true.

But lately it's been hard for me to accept that God always heals our souls but doesn't always heal our bodies. (Some would misquote the Bible to argue...but His priority is to heal our soul's sickness.) And....I struggle with that. Trusting God for forgiveness seems easier. When God forgives your sins but lets your body suffer...it's hard. Even harder when he lets your child suffer. There's less to see, less to hold onto, less to be part of. Less hallelujahs, more questioning, more trusting in the invisible God.

And I pray that I will never have to learn this trust-- the trust that must be learned when the one you love most dies. There's even less to see, less to hold on to. Heaven is a promise but we really don't have any evidence of it except to trust that Jesus is trustworthy and true. Instead of victories and freedom, there's pain and grief, and praying that if you should fall, then to only fall on Jesus's mercy. 

But I think that's the lesson God is trying to teach me. I think trust can only be learned in the silence. When my naked soul is left quivering and weak, then I find out if I ever really trusted him- not only for the freedom from sin and shame, but trust that He is good even when He doesn't answer my prayers. To trust him that heaven is where all will be made right, and trusting Him to be good enough to keep that promise. 

The most beautiful part of these last few painful weeks is finding that it only takes a grain of faith, a mustard seed, for God to pull me to himself and let me bury myself in his arms. And together we grieve. I think wholly trusting God means an acceptance of grief. Because I think God is grieving. Grieving that this world breaks us, grieving that his victories are sowed in suffering.

"But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed." 1 Peter 4:13

I'll add-- I think God definitely has a benefit over me, to exist outside the constraints of time. Though he grieves, he sees the victory even clearer. And though we grieve in an embrace, He is still whispering. I miss His voice, like missing a dear friend. 

I have partnered in at least some of his grief and in some of the trust. I am learning that both grief and trust are a journey and both will have flare ups and both have life grown around, and through them. I am still broken. But Jesus knew I'd reach this point long before he sang the world into creation. Back when I was singing hallelujahs, he knew how weak I was. He knows me better than I know myself, and in the quietness, He loves me still.

He knows us inside and out, He remembers that we’re made of mud. Psalm 103

Tuesday, August 7, 2018



It’s the anniversary of Gracie’s cancer relapse but it hasn’t seemed to have any effect on her. She’s only looking forward. It’s hard for me though. One year ago today almost destroyed me and I’m struggling to breathe through the pain of the memories.
We were going to run away. Our offer on a home in Indiana had just been accepted and we were preparing to pack. We were going to outrun cancer, flee the Santa Susana Field Lab, and start over, pain-free and safe. But Grace woke up with arm pain as severe as if she had broken her arm. We rushed her to the hospital.
I knew before the doctor said anything. My mommy instincts were confirmed by the sorrow in her nurse’s eyes. Gracie had relapsed with PH+ Leukemia. It was her second time fighting an incredibly rare and aggressive cancer. We called our realtor and canceled our new home from the hospital hallway. We knew her best chance at survival would be at our local children's hospital and we knew our finances would go towards medical bills instead of moving.
Her doctors intentionally didn’t tell us her survival rate. I think it’s because it would have stolen all our hope and hope was already scarce as it was. This time  was so much harder than the first time she had cancer. We lived at the hospital for over 4 months while she received and recovered from a bone marrow transplant to save her life.
She had intense chemotherapy and full-body radiation meant to destroy the cancer and her bone marrow. Her mouth was covered with ulcers. It became too painful for her to eat, drink or talk. She refused even ice cream. She had fevers and nightmares. She had 11 blood transfusions. She couldn’t walk, bathe, or dress herself. The nausea was constant and she vomited often. She was addicted to morphine but there were days when she still felt the pain. She was isolated to her hospital room and couldn’t be visited by her brother, extended family, or friends.
She was old enough to ask, Will I die? Did I do something bad to make this happen? Those questions nearly tore me apart.
I became really afraid when she didn’t cry or complain when receiving shots. I was afraid she’d lost the will to live. She didn’t give up, and by the grace of God, she survived. 
But as long as the Santa Susana Field Lab remains contaminated with radioactive and chemical waste, more children here will continue to get cancer. Some will survive. Some, like our friends Bailey and Hazel, will not. And the truth of that leaves me broken. The thought of more children needlessly suffering is unbearable. My heart is raw and bleeding. The pain in our community is unbearable. Everytime I see another child with cancer, I only see Gracie. And I grieve.
I grieve that my daughter lost her childhood and that she has suffered more than most adults- physically, mentally and spiritually. It's not fair that she has suffered so much. I grieve her friends who died. I grieve that there can be no promise of safety for my daughter, because cancer is a savage monster who does not consider the prayers of parents and can return without reason. I grieve that NASA, Boeing, and the Dept. of Energy, chose money over my daughter and our community’s kids. I feel I’ll lose my mind from the grief. Some days I cry until I can’t breathe, I feel like I can't breathe as I write this.
I just want to scream, Why didn’t they protect her from cancer? She's just a kid! Why won’t they save our kids? They’re kids! For heaven’s sake, they’re just kids!
I've been trying to trust God again. I am leaning heavily on my husband, and our friends and family, but today the memories of pain and fear terrorize me. I’ve been attending a recovery group, seeing my therapist, and began treatment for depression, but I still feel like my heart weighs ten thousand pounds. My heart aches. I physically feel it right now. It feels like my heart will bleed through my chest.
Still, I will choose to hope. I choose to find the joy in my children’s smiles today, in their love, in my love for them. I will choose to live one day at a time, enjoying one moment at a time, accepting hardship as a pathway to peace...even if it means staying here, in West Hills, and fighting for the Santa Susana Field Lab cleanup, even if it daily resurfaces my pain and fear.
Because if there’s anything I can do to prevent another child suffering like Gracie did, then today on her anniversary I memorialize it… I will have courage. I will do what I can.

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.
~Reinhold Niebuhr

Tuesday, April 24, 2018

Triggers, Trauma, and Mary Magdalene

I got triggered today.

While reading a new devotional book this morning I panicked. The "read between the lines" message was that if God really matters to you, you'll do what it takes to squeeze God time into your schedule and take practical steps to experience his presence. I quickly realized that my life has been a series of well-intentioned-spiritual-goal-failures, and that I am unlikely to benefit from more sheer willpower solutions.

I'm not good at reading the Bible. I can't sit still for five minutes, let alone pray for five minutes. I used to get up at 5am to have devotion time before work, most mornings I fell asleep in my Bible. I tried evenings and didn't feel anything "spiritual," so I figured I was doing it wrong and eventually gave up. (I used to go to a church where emphasis was put on “feeling” God’s presence and it's hard for me to turn that doctrine off).

Much of my relationship with God has involved me working to deserve His love. This also compounds the guilt I feel around God, and why prayer time feels like work to me, not like rest. "Sorry God," is how I end most of my attempts at devotion.

I don't have a lot of time to make either, even if I wanted to. I haven't had extra time for years. I had Gracie in 2010 and Luke in 2011 while Chad often commuted three hours a day and worked nine more. At the time I didn't have a lot of outside help, plus I had postpartum depression and severe fatigue, both times. Then Gracie was diagnosed with cancer and treated for two years. Next year I had walking pneumonia for eight weeks, continual sinus infections, and sinus surgery. Luke had severe asthma and nonstop nightmares. Then Grace’s cancer came back last fall. Needless to say, I haven’t had amazing “devotional time” in these last eight years...if ever.

And so when I read that if I really love God, I'd find a way to make it work...it triggered all my fears I am weak, I am a failure, that God is disappointed in me, that He's a slave driver who just wants more and more. That I am unlovable and unable to show love unless I work harder. 

It triggered my fear that pastors and clergy know God better than me and that everything I've learned about God must be untrue if a pastor or "spiritual authority" says so. Or hints so. I still don't understand why I so desperately need a pastor's validation of my faith. It's as if I take their words about me to be God's own approval, and I am devastated when their spiritual formulas don't work for me. I always feel that I am the hot-mess-black-sheep who can't get her act together when everyone else can.

I didn't realize that all this was triggered this morning. All I knew was that I felt the effects as if I had been shot. I bled out anger and fear and self condemnation all over the place today. It wasn't until I was doing the dishes tonight that God revealed to me that this morning's reading triggered my spiritual trauma that isn't fully healed. It was such a huge relief to at least know why I had gone off the deep end. I felt overwhelming peace and acceptance again. And it reminded me of a story I've been wanting to share. 

Mary Magdalene 

Several years ago I attended a spiritual retreat at my church. Unfortunately the guest speaker not only triggered all my fears, I think he was aiming to kill. He spoke against Christians needing medicine. He thought real Christians prayed, and real Christians had their prayers answered by miracles, because of their prodigious faith in God. Obviously Grace's life had been saved by God giving us access to medicine, but the man said it with such authority that I felt like everything I knew about God was now revealed to be a lie. 

He was a spiritual authority. He knew everything. I knew nothing. 

I actually had to get up and leave the church in a panic. I went for a walk in the neighborhood, trying to staunch my spiritual wounds without success. I was terrified that somehow I hadn't any faith after all, that I had fooled myself into believing that God could love me. Looking back, I think it was a spiritual attack, because on paper it doesn't make sense. It wasn't a logical conclusion, it was a spiritual overwhelming of darkness and fear. My spirit was being held underwater and I was about to drown. 

And then I heard, or rather had a vision, from Jesus.

He reminded me of the scene from Luke 7 and/or Mark 14, when he and his disciples were having dinner with their friend Simon. A woman, possibly Mary Magdalene, pushes her way through the male dominated dinner party to get to Jesus. She breaks open the jar of exceptionally expensive perfume, and anoints him with it. 

The men are appalled. A woman and a sinner has touched God. She's a hot mess, crying on his feet and wiping them clean with her hair. Judas says it was a waste, she could have sold the perfume and given the money to the poor. The men reject her act of worship, reject her faith, reject her.

And this is where I saw the vision. I saw the woman rise to her feet, trembling at their judgement. She's violated cultural and spiritual boundaries to get to Jesus. Those men are the spiritual authorities. They are right. She is wrong. They know everything about God. She is nothing.

I saw Jesus also stand up, reach his arm out and bring the woman to stand behind him, so that he could take on their criticism and protect her from it. He became her shield. 

"Leave her alone," he says in the Bible. And in the vision I heard him add, "She belongs to me." 

He showed her mercy, though she was a sinner. He validated her simple faith. He chose her, and her faith, over their self righteousness. He saved her from their condemnation and took it on himself. And he did take it on himself. Judas then decided then to betray Jesus because of this scene. He refused to serve a God who couldn't tell the difference between the outcasts and the elite. 

Jesus knew that saving her meant losing his own life. But he did. She belonged to him. That's what love does, and he loved her more than he loved his own life. He refused to let any of the spiritually elite take her away from him. 

He reminded me of this vision today, and therefore, I am incredibly grateful for my terrible devotion time. I don't have any theological training, no fancy titles or gold stars.  I have a lot to learn. I don't do my faith "right." I am a hot mess. A black sheep. 


But I belong to Jesus.