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. 


Monday, March 26, 2018

Emi

Gracie is having her endoscopy tomorrow and prayers would be appreciated- not only for the procedure but also for the doctors to have wisdom. Getting Gracie to eat and drink, even her favorite foods, is an all-day challenge. Food hurts her. Even though her incredibly painful stomach spasms have stopped, she is self regulating to protect herself and it has me worried. The endoscopy should hopefully help us understand the underlying problem. 

Otherwise she's doing a lot better. She's been working very hard to get along with her brother and it's been music to my ears to hear them playing and laughing again. She's been worried about her friend Emi and it's been hard to try to make sure she doesn't feel lied to...and also make sure she doesn't take on a burden of understanding that she's not old enough for. I feel very unqualified for the job of knowing how much to share and how to help her deal with her grief. 

And also her fear. She understands that if Emi can die, than so can she. And that's very hard to help an eight year-old navigate through.

Because honestly, it's been very hard for me to cope for those very same reasons. These last few weeks I've been pretending cancer away. I've been remodeling the front yard, organizing like crazy, hiding from social media, avoiding text messages...anything to make me feel safe from thinking about cancer. I was doing my best to be in denial of that hated "red cancer door."

But with Grace needing this endoscopy, and her being in some really intense pain these last few weeks, the door has stayed open. Waiting to see if Emi will be taken off life support threw it open. And my illusions of security and stability are again shattered. 

And I don't know what to do. Emotions are hard for me. When I weep I feel I should "trust" God more. When I'm calm I feel I must be in denial. And how do you pray for a child that is dying? I mean - really? I obviously have been praying for a miracle but I also am praising God for the miracle of eternal life. My fear is that she will die, because we've known six other children that have died. Children we knew personally who were being treated with Gracie, man of them Christians. And I've come to realize the obvious...God allows children to die. How do you pray knowing that?

That's an extremely painful truth, to trust God and know he allows the death of innocents. And I've been angry at him for it. I believe in heaven as the "more real" life, but at the same time I'm angry that this life is so ruined. I'm angry that he doesn't often rescue us from the pain of it. He often allows it. His intervention of breaking through time-space-laws-of-science-personal-responsibilities is the exception. The miraculous circumvention of death didn't come for any of his apostles. Most of them were martyred and all of them stayed dead. Instead they were granted the miracle of eternal life. And often that's not the miracle we want or pray for. To be honest, most of us Christians see death as God not answering our prayers. 

Yesterday as I was grieving/praising I felt Jesus say, trust him. He knows what is happening, he knows the injustice, he knows the pain of our suffering. He reminded me that faith isn't always knowing- it's faith. Blind faith. And that's hard for me, but it's true. 

But even if I believe in heaven, even if I trust in Jesus with my heart...my head is still throbbing in pain and confusion with so many children suffering. Children dying. Children that we know and have loved. There's no pretending the pain of that away. 

Then I remember who he is. He is the God who left heaven to hold our hand while we stumble. He is the God who climbed into the muddy pit of life and let us climb out by standing on his shoulders. He is the God who wept. He is the God who will never leave us or forsake us.

I have come to a point in my faith that is no longer dependant on the outcomes in this life. With his help and my hobbling, I will follow him in faith. I am not immune to the suffering and grief in this life, in fact I think my sense of it is heightened because of knowing Jesus, but it's not this life's outcome that directs me. If it goes well for me, or if life is a tragedy for me, I am swayed...I am hurting...I am broken...but I know who Jesus is and I know that I belong to him. 

And my peace comes from knowing that Emi belongs to him. 

Monday, February 19, 2018

Out of the Ashes

Grace Update:


We've been home for over a week and I think I'm much less shell-shocked this time, but Grace is still thawing out. She's been feeling significantly better this week, though that still includes lots of aches, pains, tummy issues, fatigue and weakness. She's afraid to be touched. I'm going to talk to the doctor about it tomorrow- to see if it's a medicine side effect or nerve damage that's causing the pain.

She's also been having lots and lots of nightmares, including one last night of getting a shot in her neck and another in her fingertip. She also keeps having dreams that I came into her room to give her medicine or wake her up for an appointment, so she'll wake up and try to get ready, but I'm not there. The confusion really upsets her, and the sleep deprivation only adds to it.

But overall she's talking again, laughing again, and playing with toys for the first time in three months. And playing on her swing set every day.

It makes me so content to see her and her brother outside, playing, and laughing together every evening. It's the most normal part of my day. It makes me feel secure, even if for only that half an hour. It's been one of the healing oils God has been carefully rubbing into my raw soul. He's been slowly healing my soul and my relationship with him.

Me update:

I've always been like this: if I can't have some resolution with my relationship with God, then I act like a scorned lover who can't move on. He's the center gear in which all my other gears revolve around, and in the times when my relationship with him is not functioning, everything else grinds to a stop. If he doesn't make sense to me, then nothing in life makes sense to me.

I think that's why it's been so critically important to me to figure Him out (as much as a mortal might dare to try to figure God out) during Grace's-cancer-crisis. For me it's been a spiritual-crisis. An identity-crisis. An every-aspect-of-life-crisis.

A big issue I've been struggling with is trying to imagine myself reintegrating into "normal" life with "normal" people. If you've read any of my past blogs you've probably sensed the anger and bitterness I've been struggling with. I'm so afraid of rejection for being broken. I'm so judgemental of those who've never suffered, especially Christians. I fear happiness as much as I fear pain.

It's been ugly. And frightening. And lonely.

Last week I was able to go to Celebrate Recovery for the first time in ages. We sang the worship song Holy Ground and I bristled at, "let every burning heart be holy ground."

I felt more like my heart had only burnt to the ground, and I think that's not really what the song implied. I can't fake passion, pretending my heart is burning on fire for God- what does that really mean anyhow? Passion isn't a "Fruit of the Spirit," or a beatitude listed in the Sermon on the Mount and yet Christians are so focused on passion right now. It reminds me that our society idolizes star-crossed lovers over marriages that have endured decades.

My faith is totally dependant on him right now. My heart is broken and burned out. The amazing thing was, God didn't refute that feeling. I felt his presence affirm it. And that sort of surprised me.

I used to imagine that God and I would take walks, hand in hand, in the garden of my heart. He showed me that it wasn't my garden, it's always been His garden that I had imagined, and that I had a corner patch in it. And I saw in this vision that my garden plot really had burned to the ground.

But he reminded me that forest fires are often seen as terrible calamities with nothing but devastation and pain...but in actuality forest fires are a huge benefit for the forest in the broader sense. They clear the ground for new growth. Many plants are dependant on the heat and chemical changes for germination. Fires kill the mold and bacteria that had festered in the dark underbrush, and the new growth will have plenty of oxygen and sunlight to prevent future blight. Forests will languish without an occasional fire.

In a forest fire there is loss of life, but also there is also new life.

So it was true, my garden plot had burned to the ground while others burned with poetic passion. And some of those burning, passionate Christians in God's garden are represented by beautiful, ornamental garden plots. They have topiaries and long stemmed roses, bubbly fountains and marble statues. But I have a feeling there are more Christians who feel they should be this type of garden than God might actually need, and/or they think that it's the only type of garden God approves of.

But I don't think God's large garden is just to create beauty. In some plots God is also growing vegetables. Some plots are fruit orchards. He is tending herbs for medicine in others. Some gardens are for shade, some drought tolerant, some are full sun. Some hold the manure until it breaks down into rich fertilizer to enrich the rest of the garden. Some are full of tall trees planted at the perimeter to take the brunt of the weather, to protect the more delicate plants further inside the garden.

Each has a purpose and I think God values each of them for the unique job He created them to do.

That resonated with me so much that I sang the rest of the song with my own improvised lyrics. I am burned to the ground.

But now I look forward to see what type of garden God will grow in me once the ash has settled. I know it's not necessarily one that will be valued by those looking for prize winning roses, but as long as my heart is a garden that God is satisfied with,  I will try to grow to be true to His vision for my purpose.

Saturday, January 27, 2018

The Red Door


Days like today, after four weeks inpatient, I have a harder time with the door.

There is a bright, red cancer door that exists at the back of my psyche. I didn't know it existed before Grace was diagnosed. When the door was opened and we had to walk her through it, my biggest fear was that she would not come out again.

After she finished treatment the first time, it shut behind us, but I couldn't lock it. I thought if I did enough good things, maybe I could somehow convince God to lock it for us. Even seeing that door made me tremble, simply because it existed. It was a bright red reminder that it could open again one day and pull Grace in. And it did.

I was even more afraid to enter it the second time.

And though Gracie isn't in any "active" danger at the moment, she's not out yet- the cancer is gone but the danger isn't. Once she's out, it will still be slightly ajar for the next year with the possibility of being flung open at any moment.

And even once it's closed I still won't be able to lock it. That door will always be there. The possibility of cancer, suffering, death will never go away. I can paint the door, I can hide it, I can ignore it, but I do not get to decide if it will be there. The door is totally out of my control. I feel paralyzed in fear of it.

I thought if I did enough good things that I could control God, make him take it away, as if life were an equation that was  as simple as:

I do good + God is good = Good life for me.

I feel safe with rules. I like equations. I work myself to death to do the "right" things, and I have tried to have "lots of faith" in part because I love to see God at work...but part of it is that I'm afraid of pain. I am somehow trying to control life by being "good" in order to protect myself. As if God were obligated to do what I wanted because I paid my dues. As if I understood more about life than God.

I think that's where a lot of my bitterness and fear are rooted. Being in control is an illusion. That illusion is now broken and I feel vulnerable and powerless. I feel so mortal. I know I am supposed to trust God and thus feel safe...but I don't. I don't feel safe. My faith is destitute.

On top of that, I have been judging myself harshly because what I thought was faith in God, was tainted. It wasn't pure faith. It was laced with selfish, self-preserving clauses as I tried control life so it wouldn't hurt me. I just didn't know it then.

I see it now. I can't stop seeing it just like I can't stop seeing that damn door.

I'm having a hard time forgiving myself for being naïve. I'm disappointed in realizing that my faith wasn't as pure as I had imagined. That I'm not as strong as I thought.

I need to stop trying to be God.

Forgive me God, 

I repent. Forgive me for trying to control my life. Pain frightens me Lord. Life is so hard and on days when I feel as weak as I do now, it seems unbearable. Still, help me to trust you. Help me as I rely on you instead of on myself. Please give me faith to trust you. My well is dry but you are the living water, and you love to generously pour out your spirit on us.

Forgive me for judging myself so harshly. I was naïve, that's true. But I would have to be God to know the difference back then, and I'm not God. Therefore I need to stop judging myself as a failed god, and instead give myself grace for being human

When I don't forgive myself it's really me trying to be God, trying to control at least one aspect of my life, and it's about as useful as tearing down my own house with my own hands. It doesn't help. So I accept your mercy and grace. I accept that I am a human and nothing more.

I will try to rely on your wisdom God and not my own. I will try to trust you to control life instead of me. I will allow myself to be weak and let you be strong. And thank you for the grace you have for me as I have failed, and will fail a thousand times a day. Still you smile on me.

Amen.

God, grant me the Serenity
to accept the things I cannot change.
The courage to change the things I can,
and the wisdom to know the difference.

Living one day at a time, enjoying one moment at a time;
Accepting hardship as a pathway to peace;
Taking, as Jesus did, this sinful world as it is;
Not as I would have it;

Trusting that You will make all things right
if I surrender to Your will;
So that I may be reasonably happy in this life
and supremely happy with You forever in the next.

–Reinhold Niebuhr

And even as I was writing this, a friend sent this verse. I know that today's writing was my way of praying for help, and this is no coincidence:

The Lord himself goes before you and will be with you;
he will never leave you or forsake you.
Do not be afraid; do not be discouraged.

– Deuteronomy 31:8

Monday, January 22, 2018

Birth and Death

I've been thinking a lot about what it must be like to die, though obviously I never have, I have some theories. I've written some of them before, and probably more succinctly, but I feel the need to work it out as I write again.

I think dying will be a lot like being born. There are so many allegories in our natural life that I think God created to help us accept the perfected versions of what we will experience in eternity. I think being born is one of them.

Life in the womb is a strong allegory to this life, the life before "real life" in heaven. In the womb baby will grow, practice breathing, baby can hear and bond with their parents, baby will develop until they are prepared for life outside the womb.

I've come to believe that the meaning of life, this life, is to help us develop and prepare for the real life, eternal life. To find out who we are and who Jesus is- as he was the one who took it upon himself to destroy the power of sin, making death result in life again, the way God intended death to work.

This life is when we begin to hear God's voice and bond with him, just as a baby can hear its father in the womb. This life is when we practice love, which will be as essential as breathing in heaven. And though a baby's life in the womb is often considered insignificant to the life it will live once its born, it's a critical time of growth.

I think death will be a lot like birth, but I think it's interesting how we grieve for those dying, but not those being born. The helpless baby is frightened, pushed, and pained as it travels the birth canal, leaving behind everything it understood as life before... but we on the outside, we who know that a bigger, better life is coming...we cheer.

I think death will likely be as painful as being born, if not physically, then certainly mentally. But I don't think any of us will remember the pain of the process once we're in heaven, just as none of us can remember the pain of the birth.

All we'll know of our death, once we've reached eternity, will be photos showing our the rejoicing of grandmas and grandpas already in heaven, the excited siblings, and of our delighted Father who immediately cherished us as his own.

And then "real" life will begin as life was originally meant to be. We will be our truest selves, healed physically, mentally, socially, and spiritually. We will live at peace with ourselves, with God, with the people around us, and even with the animals and our environment.

We will thrive in a life that is bigger, better, and that is a life I look forward to. In that mentality, I hope to enter into death one day with at least some excitement for what comes next.

P.S. I don't think life on this earth is a requirement for heaven. I think having DNA might be a requirement since I think life begins at conception, but I think life on Earth is an allegory, not a requirement. I think 1/4 of heaven's population will be people who died before being born, as 1 in 4 conceptions end in miscarriage, and I'm eager to meet a race of people who will be as pure and innocent as Adam and Even before the fall.

I wrote this about death a few years ago:
The process of leaving our mother's wombs is a frightening and painful experience. The transition is abrupt and unexpected. It is a process that leaves us cold, vulnerable, and weak. Yet our pain and effort is small compared to the labor of our mothers who did for us what we could never do for ourselves.

If we had the capacity to remember that day I think we would be deeply traumatized. We would be terrified that perhaps we would be suddenly expelled from this world into another unknown life. And of course, the fear of death is exactly that.

As I daily walk towards that time that I should die I will remember that it is natural that death should be similar to birth. Death is also a relatively short, often painful transition that brings us to life. Eternal life, that is. Yet our suffering and effort is small compared to the painful labors of our Savior Jesus. He did for us what we could never do for ourselves.

When we die and are birthed into heaven, I don't think we will be grieved by the experience. I don't think we'll have any residual trauma. It is likely we will even celebrate that day as our true birthday. For that will be the day we came into the fullness of life.

"Just as Jesus was raised as the first of the harvest, then all who belong to Christ will be raised when he comes back." 1 Cor 15:23

A friend sent me this story. I don't know who wrote it but I love it:

Saturday, January 13, 2018

Paddington



I took Luke to see Paddington 2 while Chad is with Grace. It's a completely magical and charming movie and in a way, was life changing for me. Two marmalade-covered-thumbs up.

I've been really struggling with happiness, and not because of depression. I've been disillusioned with life.

I've really been struggling with the Christian faith. Not because of Jesus. He is what's holding me together, but because I'm really angry at all the churches I've been to that taught that if we prayed and believed, that God would bring all things together for my good... and never clarified what my good meant. I assumed that "my good" meant the things I want; prayers answered my way, "unshakable peace" that things are going work out the way I'd like, God providing what I want- as long as we prayed and believed hard enough.

According to the Bible, "my good" actually means suffering that ends in endurance, personal character development, and hope. Not hope in what I want, but hope that God is good and that he has loved us and made a way for us to be reconciled with him. There's no promise that what is good for me will always look good, and there will be things that I will only understand as good in the hindsight of eternity. That's what "my good" actually means. But no one told me that before.

I've also had a hard time with worship at church. I'm so critical of anyone who leads worship, sings worship, or even smiles at church. I can handle hymns but I really struggle with all the happy music that's so popular in American worship these days. I want to shake them and scream, are you worshiping God only because your life is easy?  What if God gave you himself and nothing else? Would you still jump and clap if  God lead you into a life of devastating loss? 

I've been trying to figure out for weeks why I'm so bitter about Christians being happy...or anyone else for that matter. It didn't seem normal to be that angry because people were happy. I realized it's not happy-in-the-moment-happy (like tickling your children) that angers me, it's the whole life-is-happy-philosophy/faith that angers me. It's the philosophy/faith that everything is going to work out if you believe.

And that philosophy/faith is **expletives deleted**.

I finally realized that I'm actually mad at myself. I was once that clapping-happy Christian, totally naive to any long-term hardship, believing that I was strong and faithful, praising Jesus because my hope in God was based on the belief that life would become better. And I realized it was me I wanted to shake, to scream, don't you know where God will lead you? Don't you know that all this happiness can't protect you from devastation? Don't you know your dreams and hopes, even your children, might be taken from you? How can you be so naive?

Happiness has seemed fake to me lately, compared to the real pain in my life.

I now have an understanding that suffering and real pain exists. I can't un-learn that, even if I wanted to. I can't go back to a happy-life-philosophy. And that scared me. Because I can't live in depression and bitterness, but I had no idea how I could be happy and broken at the same time.

And Paddington really helped me today as I sat through the movie, tears streaming down my face. I loved that Paddington never lost hope. Everywhere he went he spread a little goodness, a little happiness. He wasn't clapping-happy, but by seeking out goodness and having hope that goodness could and did exist...he found it. Happiness. The real kind. The kind that exists despite pain and suffering.

And there has been happiness for me lately. Real happiness as people have shown their love for Grace on her birthday with cards, video messages, and donations for her swing set. The cards have come with tear stains and encouragement that have shown me that people have been willing to step into our suffering and not only alleviate it, but to suffer with us. That is the happiness that makes me feel safe, the type of happiness that is real.

Because maybe my issue wasn't happiness...it was hope. Maybe it isn't happiness I need, maybe I need hope that goodness exists, because God is good regardless of pain in this life, and that in turn will lead to real happiness. Maybe I just had it all in the wrong order.

I think that's how I can be broken and happy at the same time. I can be brave enough to look for goodness and light, though the world is evil and dark, and find happiness wherever the light breaks through. And with each small happiness that God allows, and that I am willing to embrace, evil will be conquered and be pushed back into hell where it belongs. Even if only a little darkness dies, it would be worth it.

I am going to try to re-direct my hope, because in Him is life, and that life is the light of men. The Light shines in the darkness, and the darkness has not overcome it.

And in that hope, I am willing to risk happiness.

Thursday, December 28, 2017

Amnesia

I feel like I've been slowly recovering from amnesia. The other day Grace asked for a napkin, but I heard her say "nah-kin." That was how she said it as a toddler. I felt like I was waking up from a happy dream, the type where you can almost, but not quite remember what you had dreamt.

I joked a few times that living that long at the hospital was a form of sensory-deprivation-torture. In BMT isolation we couldn't have pillows or sheets from home, they were the thin hospital ply until she was allowed to go to the "regular" cancer ward. We weren't allowed to have many stuffed toys or even many toys at all, unless they could be easily wiped down every few days. She couldn't have fresh flowers or latex balloons. I did get her a giant mylar Unicorn balloon, but I think she was depressed. She didn't care. Nor did she care about the butterfly decals I brought to decorate her room with. We couldn't have scents, like food, because it made her vomit. Some days we listened to music as she colored, but often she felt so sick that we didn't. I got used to the loss of sensory that connects us to our memories and to ourselves.

Yesterday I made salmon and sweet potatoes and again that fleeting, dream-like feeling covered me. I took me a while to realize I was remembering a happy time when I cooked that meal before. I hadn't realized it had been so long since I had that feeling of contentment.  I had forgotten what a good memory felt like, but I hadn't noticed that I had forgotten.

Really, I've been depressed. It seems opposite of how it should be, and to be honest, I think knowing that makes me more depressed. I should be so happy Grace is home again. And I am. But I'm "should" even more. Christmas was the worst. I literally cried all day, hardly able to get out of bed. Knowing that I was depressed on Christmas made me more depressed. It was like a crushing weight that I couldn't escape no matter how hard I tried.

It wasn't until the next day when I sent out an S.O.S. text to several friends did the weight lift. God has shown me three times recently that I must reach out for help and stop pretending to be self sufficient. All three times I tried my best to solve my own problems, just like I've always done, but I've been learning in CR that I need support and apparently God is not going to allow me to survive until I learn that lesson. All three times the crushing weight of despair was immediately lifted, or the problem immediately resolved, when I gave in and texted my friends for help. Immediately as in practically before I finished hitting "send."

Looking back, and with their input and wisdom, I can see a little more rationally as to why I've been so depressed. Grace's brother was SO excited to see her and per their old play habits, he was bouncing and singing and being silly. She wanted to lay on the couch and she did NOT want to be touched. So they fought. All day. Every day. Feelings were hurt and I had two lonely kids who couldn't be in the same room together.

(Feel free to skip...it's insightful to cancer life but a little long and a tad whiny) 


 Since she's been discharged two weeks ago, we've been back to CHLA clinic four times. Five if you count tomorrow. She has to go twice a week and each visit takes about six to eight hours with driving. She's always angry to be there and because she's on steroids, she's always hungry. Somehow, no matter how hard I try, I never seem to pack enough food for these trips. So she's hungry and angry. Also it feels much more critical, and is, since she's out of BMT compared to her other neutropenic periods. So I've called the doctors and nurses twelve out of the last fourteen days with fears about  her pain and rashes. Luckily they're amazingly helpful, but it's always scary for me to have to call, and a lot of responsibility to decide to call. I worry constantly that I might miss some subtle symptom that could put her life in danger.

I have to be a nurse and pharmacist at home, though I have no formal training besides our favorite BMT nurse who helped me get ready before we were discharged. Every morning I spend five minutes flushing Grace's central line with saline and heparin and change the cover and caps on Sundays. I make sure her four liquid medicines, nine types of pills, and two creams are correctly dosed and administered six times a day, even though the doses change constantly. It can be very frightening for because I know her survival is based on me doing a good job.

Grace's cancer is gone, and we hate cancer because it can kill her, but now she has no immune system, even less than when she had "regular" cancer neutropenia. And not having an immune system can not only kill her, but kill her quickly. Not having an immune system requires all kinds of work. We have to keep the house immaculate. All germs and dust and pollen must destroyed. We can't have many visitors, and even less children visitors. She wasn't allowed to pet her cat until recently, and even then she has to wash her hands after, no kisses. I have to keep the cat clean, her room clean, her sheets clean, her towels clean, her toothbrush clean...in addition to caring for a family of four again, instead of two.

She can't drink tap water, she's only allowed bottled. She can't go to restaurants or even eat restaurant food. She can't be in the sun at all, can't swim, can't go to karate, can't go to school, can't go to the park, can't go to other people's houses or any public places. She must take all her medicine, must let me cover her with lotion, must let me take her temperature, must show me each time she poops. As you can imagine, her life is out of her control and she blames me for most of it. I get it, she's seven. All the same it's tiring.

And emotionally this week was crushing. I had three friends whose children either relapsed again,or it's suspected, and each of those children have a critically low chance of survival. These kids and their moms are like family to me. And to top it off, I was trying to save all our neighbors and their children from cancer caused by the SSFL.

(Long part finished, if you care to read on)

So I slowly wore myself down and out without really realizing it. When you live inpatient for that long, it starts to almost feel normal. Waking up two to three times a night seemed like a miracle compared to living inpatient, so I didn't realize how tired I was, only that I wasn't as tired as before. I didn't realize how sad I was, only that I wasn't as sad as I was before. I didn't realize how numb I was, only that I felt more alive than before.

Slowly I've been waking out of my amnesia to find both good and bad are my reality, both good and bad are my memories, and sometimes I can't tell the good from the bad. I'm rejoicing at how much Grace has recovered but I can't imagine the future. I literally can't think past an hour from now. Everytime I try to imagine next week, or next month, or even next year, it feels like falling into amnesia in reverse. I can only see shadows.

Still I know I am improving because I actually want to heal. Actually I don't really. It's frightening to imagine a life outside this one. But at least I'm willing to walk that direction, into the light and wholeness of the healing only God can bring. I am willing to trust Him to heal me in a way that I'll still recognize myself.

In the meantime, treat me like my eighty-something year-old neighbor who had amnesia. Be patient with me if I don't make any sense. And if you find me in your home sorting your mail, or walking down the street with only my panties on, just kindly lead me home with sympathetic words and wait until my door is closed before laughing.

...I realized late last night that our neighbor had dementia, not amnesia, but I was too tired to care that I got it wrong.