Saturday, November 11, 2017

Mommy Guilt


Today was really hard. Grace vomited several times and was put on constant morphine as her pain is becoming more apparent. Because of that I feel more helpless. That has only intensified my feelings of being out of control with my son Luke too. It's strange because I feel as helpless about Luke as I do about Grace's cancer.

I think the pain built up this week when he won a citizenship award at school and somehow we didn't find out in time for one of us to be there. Then he went on a field trip the day after Grace's BMT and I wasn't able to come. Because he's six, I only get bits and pieces of his day on the phone at night, but it's nothing near to connecting. And it's really been hurting me today.


Luke was two years old when Grace was first diagnosed and four by the time she finished treatment. He had extreme separation anxiety after. He panicked if he lost sight of me at home. He cried outside the bathroom door. The book "Hand, Hand, Finger, Thumb" stressed him because the adult isn't shown in every page and Luke was worried about who would care for the little monkey. It took a long time before he felt safe again.

When Grace relapsed we spent five weeks inpatient. When we got home he was always saying how happy he was that we were together as a family again, constantly covering me with kisses and holding my hand. And two months later we had to come back with no real estimate as to when we can come home. Twenty-eight days is the estimate if there are no complications and BMT is rarely without complications. Chad and Luke have both been sick so I haven't been home in two weeks. Chad told me that in the mornings Luke goes into Grace's room to see if she's back. He's a pretty sensitive little kid.

Obviously Chad and his Grandmas are a huge support, but I'm his mommy. And it breaks my mommy heart that I can't be there to comfort him.

Thankfully I have other cancer mamas here to talk to about it and I plan to talk to the CHLA psychiatrist about it this week. I've also been digging out of my memory what I learned last time, because I had severe mommy guilt last time too.

One thing that I have to remember is what I learned about oaths. Chad and I learned this a while back. Oaths are how we try to control our lives when we feel powerless. "Even if I have to tear mountains down with my own hands, I'll do anything to protect my kids, I won't let anything ever hurt them." The sentiment of this promise, as I held Grace in my arms as a newborn, was true and good. But when I can't take care of both Luke and Grace at the same time, I violate this oath. In my mind it was the truest-truth but in reality I swore myself to a standard I can never keep. I am not God. I can't stop all things from hurting my children. And if I don't admit to my own powerlessness, and if I try to keep my oath to the extent that I originally meant it, I will break my heart and possibly my mind. Because it wasn't the oath of a mother I made. I made an oath only God could keep, and I am not God.

I'm meant to love my children, nurture them, protect and provide for them, but in the end I can not be God to them. I can't keep their hearts from breaking, I can't shield them from all dangers and all disappointments. I can't heal all their pain or comfort all their sorrows. Still this hurts me as I'm not able to be the mommy that I want to be. I have to accept my limitations and know that God must be God to them and that he loves them even more than I do.

The other thing I need to do is accept that God has placed other people in Luke's life to love on him. I am angry and disappointed that I can't be involved in his life the way I'd like to. But I need to accept that Luke can be loved as much by my husband and Luke's grandmas, and friends and family too. I'm hurt that I can be replaced. I feel stripped of part of my mommyness. But I am thankful for Chad and family, and I need to support them more. They're an incredibly important part of Luke's life.

Also I think it scares me that one day Luke might not be able to forgive me. That somehow he won't be able to understand why I had to leave him for so much of his childhood to be with his sister. Even if he can accept it in his mind it's not the same as making sense in the heart. I fear that it'll cause a rift of jealousy between him and Grace. It can be hard for children to understand such grownup justifications. The thing I have to remember is that my parents didn't always get things right, but I did know they loved me. Even if I were able to give Luke all  my attention and love right now, it still wouldn't be without mistakes. I have to trust that loving him as best I can, letting others love him, and most of all by leading him to God's unconditional love...that he will grow up to be secure in his ability to love and be loved.

It also helps as I remember (my variation of) Celebrate Recovery:

Step One: We admitted we were powerless ...that our lives had become unmanageable...
For I have the desire to do what is good, but I cannot carry it out. Romans 7:18 

Step Two: We came to believe that a power greater than ourselves could restore us...
For it is God who works in you to will and to act according to his good purpose. Philippians 2:13

And finally...I just need sleep. I'm exhausted and it hasn't helped my emotions or mind as I struggle to understand and accept how life is right now. So with that...good night.








Friday, November 10, 2017

#1millionparents

Please share our Change.org petition until we get #1millionparents involved in protecting our children from the cancer causing nuclear and toxic waste at the Santa Susana Field Lab.



Learn more about the site at: www.ParentsAgainstSSFL.com


Tuesday, November 7, 2017

New Cells



Today was Grace's bone marrow transplant...and I'm not mad or hurting, I'm really glad...in the most subtle way possible. We bought balloons and the nurses and childlife made her posters and brought gifts and I was happy. I really was, even though I keep my emotions as mellow as possible. I know that if I spend all my energy in one moment, the next moment everything can flip on it's head, and I'll have nothing left for it. It's a survivor's mentality and it's how you mommy when your child has cancer.

Something else that's helped me recover from my anger is that I know that if I am depressed or despondent or ugly-angry, I am accepted and loved by people and by God. It's amazing how that knowledge is a rock in times of trouble. Another thing has been that I've been praying more honestly and looking for wisdom in the Bible.

I'm not great at reading the Bible. I skim it and if I get confused I feel ashamed and if I feel ashamed than I abandon reading the Bible and then I feel more ashamed. It's a very bad cycle. But after Celebrate Recovery I realized that if I don't stay rooted in who God is than I will wander. It's just human nature. So I've been praying for nearly a year that God would help me to care about the Bible, and recently he has.

I've realized that Jesus was probably a really fun guy. Kids were drawn to him and the pharisees rebuked his disciples for being so happy. I think Jesus probably danced at every Jewish wedding and laughed and sang with kids. Also, he really did turn water into wine and he turned a LOT of it into the best wine, not cheap "teach them a lesson about sobriety" wine. I think he liked people enjoying being people, and I think he enjoyed being around people.

And that confused me, the thought of a happy Jesus. Because from what I read he was also surrounded by sin, sinners, and disciples who wanted to call down eternal damnation from heaven onto anyone who had sinned, except on their self-righteous selves. Jesus must have felt very lonely sometimes. He was often misunderstood, often overlooked, often taken for granted, often wanted dead. Everywhere he looked he was surrounded by broken people in a broken world.

And yet this is the Jesus who was probably a really fun guy. So I was trying to reconcile how Jesus, God incarnate, could be happy when surrounded by nothing but entropy and sin. But he had joy. Maybe not always the laughing-dancing-joy, but that unbreakable-peace-joy that sometimes erupted as dancing and joking.

I have a theory. I think that Jesus held hands with humanity but kept his heart in heaven.

He raised Lazarus from the dead but I don't think that was his reason for joy. I think it was that JEsusknew by dying on the cross, that Lazarus could have eternal life in heaven. Because everything Jesus fixed on earth broke or died again. I think he had his focus on heaven, where all will be made right again. Not only will broken bodies will be fixed, but broken minds and broken souls too. I think he found joy in keeping his eyes on who his Father is, and in what good things were to come. And also in those rare moments when people caught on to who he was and what he came to do.

I think that's how he could be surrounded by brokenness and still have joy. And what amazes me is that he also fully entered into people's suffering. When Jesus raised Lazarus from the dead, he wept first. He was fully present in the pain of the grieving sisters, which is intense, as I am convinced that God can feel more deeply than we can ever imagine. I think Jesus came to understand our pain, in addition to redemption. He wasn't satisfied to sympathize with his broken children. He experienced our brokenness. He empathized.

So I'm trying to learn from Jesus' example of joy and grief and figure out how to live that as we walk through the valley of the shadow of death.

We know five other families on the CHLA oncology floor tonight. Needless to say there is a lot of suffering with the potential for devastation to visit any of our rooms at any time. And yet I am trying to find joy by keeping my heart set on God's promises of heaven, while at the same time being present with Grace and with our friends who are fighting for their lives. The balance of grief mixed with the hope of Heaven feels much better than the pretend me that "plastic-happiness-faith." I have been real with God and I have not been rejected.

Also I've dared to be real in these blogs and I have not been rejected by my friends and family. To be at my lowest and to be broken with nothing to offer... and know that I am still loved and accepted is the truest comfort there is. It's what has brought me through many hard days recently. I am so grateful to everyone who's been praying and loving on us in so many ways.

And I am so thankful to have joy. Though Grace's fight is still ahead, today I am so grateful for her donor and for all of those who swabbed for Be the Match, and for all of our friends and family who prayed for her today.

Monday, October 23, 2017

Fighting for Peace

Grace's Artwork

Today was a big day...we learned Grace has a "full" bone marrow donor, the most compatible possible, and will have her transplant November 7, 2017. And instead of ecstatic joy, I am hurting.

I think the reason why I am struggling is because it's amazing news- please don't get me wrong- but today has been my biggest nightmare for almost three years. It was the day that was never supposed to happen. I'm so very glad, because in reality this is what will save Grace's life, but inside I am still grieving the fact that she needs it. It makes the cancer real.

And as I write all this I feel so much shame. I feel like I should be happy. I've tried so many times today and all I feel is more anger and fear.

After hearing about the match Chad, Grace, and I signed all the documents that acknowledge that if the graft fails, the result would be fatal. If the graft vs. host disease (GVHD) is severe, it can be fatal. If she gets sick, potentially fatal. Pneumonia, potentially fatal. Organ damage, potentially fatal. It's not standard boilerplate text. They really mean it. We signed eight or nine paragraphs of what could go wrong, and the acknowledgement that the transplant can save Grace's life or take it.

We don't know the survival statistics and we don't want to know. Grace is a fighter. We know that. And the BMT is her best chance to save her life, and the full matched donor is her best change for a successful BMT. Still, despite all my efforts of happiness today, I felt anger instead.

I wish I miraculously had peace instead of rage and terror. I feel so out of control. Peace does come, but I've had to fight for it. That's why I'm writing tonight. I'm seeking it out because frankly I'm desperate for it. But tomorrow morning I'll have to do it again. And maybe mid-morning, and afternoon, and evening and night, and probably in the middle of the night too. Lately I've not often been the winner of these fights. The Bible says that the peace of Christ, which transcends understanding, will guard our hearts and minds. I just never knew it would have to be a minute-to-minute fight to stay connected to him to get a taste of that peace.

Even as I write this I don't feel peace, though I'm trying to with all my might. At least not the harp-playing-Kumbaya-peace. But I suppose it's the I-will-follow-you-to-the-cross-because-you-alone-have-the-words-of-life peace. Maybe that's what peace really is. Maybe the other is what we assume is peace, but it's really more happy feelings on happy days. Maybe "100 proof" peace can only be found in the storms of life, when it's totally his peace and nothing we provide.

The reasons I'm angry:

  • Being angry at everyone and everything is a lot easier than dealing with the real issue, that I'm so scared about Grace's transplant
  • I fell completely powerless and out of control
  • I'm still reeling from the disappointment that Grace's cancer came back and that our plans to move forward with a normal and safe life were taken away
  • I'm exhausted and haven't been taking care of myself very much
  • I've haven't been honest about my feelings and this makes me feel isolated and then I fear and resent others for not understanding me
  • I'm out of energy from pretending I'm ok
  • Feeling beaten down from the lies of the enemy who has been attacking me with bad thoughts about my marriage, our family's future, my value, and anything else that's an easy target...so pretty much everything in my life
In Celebrate Recovery we're suppose to do a HEART evaluation:

H- hurting
E- exhausted
A- angry
R- resentful
T- tense

And I'm maxed out on all those right now. That's the truth of my life and pretending it away hasn't helped, nor has it healed my faith. I think when I'm more honest about my pain, that's when I start to heal.

This very moment I feel less like a trapped animal. I happen to know Jesus likes the real me more than the "pretty faith" me. Because the pretty me is pretend. She doesn't exist. And the weight of supporting a pretend identity has been exhausting and full of failure and shame today. And with that honesty comes the knowledge that I am accepted and loved by God in my worst moments. That is the reason I can go on. I am frightened, but I am not alone. I am willing to face the Valley of the Shadow of Death, because he is with me.

I feel his peace now.

And tomorrow I will fight for it again.

Monday, August 21, 2017

Not Justifiable



I have been struggling with faith.

The first time Grace had cancer I didn't known I was a raging co-dependent. I thought God didn't want bad things to happen and when they did I assumed God made a mistake. I couldn't bear to see God making mistakes so I often tried to compensate for him. When Grace got cancer the first time I assumed if I could (insert good deed) then it would explain why God allowed it. It wouldn't be God's mistake if we saw something bigger and better come from it that outweighed the bad. Then it would seem like God had a plan all along and he just used cancer to prove how good things work out for those who love him.

And none of that is or was true.

God allows hard and bad things to happen. God is in control and he allows horrible things to happen and it's not because it was an accident, or an oversight, or because he's evil, or punishing people. We know this because he allowed Adam to sin. He allowed John the Baptist, Paul, and James to be beheaded and Peter to be crucified. He allowed Jesus to die on the cross. He allows many horrific things. But allowing is not the same as wanting or approving or causing it.*See explanation below

Life is hard. Horrifically hard on Earth. Because Earth was never meant to be heaven. When Adam and Eve brought sin into the world the physics of entropy began like a cataclysmic time bomb that worsens each day. Everything has been breaking, humans and the Earth itself, since sin entered. Our hope isn't that God will make this world perfect now, but that he's made a way for us to join him in heaven where everything is healed. I understand that now.

So that's why it's different this time.

On one hand, I don't know if anything, as good as it might have been, could justify the pain my daughter endured from cancer. (Still God brought many good things out of that time and out of our pain). This time I'm not trying to justify her cancer. I don't want to and I know I can't. To be honest, this time hurts my heart a lot more than last time. A lot more. We know what's to come and I'm terrified. I'm angrier at God than the first time. I'm more broken. And now that I have feelings I hurt. Some days I just want to go back into denial and pretend I can make things better by finding ways to outweigh the bad. But I can't. There is no justifying a child suffering cancer.

And I was struggling recently, because I thought that I didn't have faith in God because of how badly I have been hurting these last two weeks. I haven't felt his peace or his presence, and the first time Grace had cancer God's presence was palpable. Not this time. Only spiritual silence. My anger and fear and feelings of betrayal have been overwhelming.

But God has shown me two things. He reminded me that faith isn't always smiling and singing hallelujahs. It's not saying the "fix-it" Bible verses or pretending the fear and pain away. Faith is messy. Trusting in God can look a lot like grief and still be accepted by God as worship. I'm hurting so badly, but for once I'm being honest with God. I'm trusting that I can be broken and that he can bear me. That I can come with nothing and that he can accept me and carry the burden of our relationship. I have become the comatose child again, being spoon-fed by my father. I just wish I didn't have to come back to that so literally.

The other thing he's been showing me is the church. And I don't mean a church building, or even just the church we attend, but people who have loved us. A pastor friend of mine said that God gives us more than we can bear. And he does that because we were meant to live out faith in community, and when we're supporting each other, we can bear the unbearable together.

We are surviving Grace's cancer right now because of our friends and family and community- both people of faith and those outside our faith. I haven't felt God's presence in the way I long for, but again and again our people have made God's love for us real and tangible. And so I am grateful, not only for the gift cards, meals, emails, and etc, but mostly because people have become God's hands and feet and have shown me his love when I couldn't find him. In a large way, my faith in God is being supported by them.

I am broken. I am entirely grateful. And I am loved. Goodnight.


* Long explanation: God allowing evil and not causing/approving of evil is a hard concept. Here's an example that might help. We allow the "alt-right" to demonstrate and say horrible, evil things. We allow it because we understand that liberty and freedom are worth it. If we take away their freedom of speech than we begin to live in a dictatorship, even if it's a "good" dictatorship. As Americans we do not cause their hatefulness or approve of their evil, and even fight against it. Still we allow their horrific words and ideals for the sake of freedom.

God is love, and love can only exist in freedom. Real love can't be forced. We do and say horrible, evil things to each other. And God allows it because in order for any of us to love, we must have the ability to choose love and reject evil. Therefore our freedom allows the possibility of evil things to happen. 

God does not agree with all our choices and that's why he put such severe penalties (hell) in place to try to deter us from harming each other. But we still do. We manage to hurt even the ones we love. God  saw us through the lens of a Father, instead of the lens of a judge, and loved us as his broken children instead of evil people. He had compassion on us and sent Jesus to rescue us from the punishment we deserve. We can say with confidence then, that God allows evil but he does not cause it or accept it and he carries out justice against it. And rather than destroy us, he has rescued us.

Still not satisfied with that answer? Good. That's probably why we're friends. Try reading C.S. Lewis' "Problem of Pain," for a better and more thorough answer. 

Monday, August 14, 2017

Relapse

(one week before relapse)

We didn't see it coming.

I had trained myself so well not to panic that I didn't flinch when I saw a few light bruises on her last week. After all, she had massive bruises before and her counts had been fine. Most kids relapse the first year off treatment and Grace was well past that. We thought we had dodged the bullet, even though her aggressive form of  PH+ leukemia has a 25% relapse rate (which sounds great on paper but it also means one in four kids relapse, which suddenly sounds not-so-great).

I was so encouraged by her oncology visit two weeks ago. Her blood work was perfect and when her oncologist told us, "It's time to move forward with your lives," I was entirely ready to leave the cancer world behind us. And that was a big step for me, to let go of my fears of relapse and to move forward with "normal" lives. I wanted that so desperately for our family.

Sunday night she woke up crying that her arm hurt. I gave her some Tylenol and took her to the ER. By then the pain had lessened and she told me she wanted to go home to sleep. So we did, but Chad and I were both deeply unsettled by it. Bone pain is one of the major symptoms of leukemia. In the morning she woke us up crying that her arm hurt, her stomach hurt, her foot hurt. We called the oncologist at Children's Hospital and they got us in that same morning. I packed an overnight bag, just in case.


"You know already, don't you?" the doctor said to me when they had the blood work results. Her platelets were at 33k and they found 11% "blasted cells," or leukemia cells. The doctor held me while I sobbed and brought me tissues. The nurses watched the kids while I called Chad and the family. These were some of the same nurses who sang to Grace when she rang the "finished treatment" bell and they had hugs for me as well. When Chad arrived we told the kids. Grace first wanted to know if she would die, and then if her hair would fall out, and then if she could play with the new Legos her daddy brought. And in less than a minute she was settled with the news. Luke was similarly receptive.

It's been eerie how quickly we all fell back into the cancer lifestyle. At the hospital, surrounded by nurses and doctors and other families we know and love, it almost felt normal. Like an extension of her last cancer. It didn't really hit me until I went home Sunday night to spend time with Luke and sleep in my own bed...and Grace and Chad's weren't there. That's when I knew it was real.

Even still, it's a fleeting knowledge because "cancer" is a term, not a tangible thing, and refuses to be understood as such. It's almost always like that. Talking to her oncologist about her chance of survival seemed subdued. Buying new headbands for her soon to be bald head felt like a funeral. It's in the details that cancer becomes an understandable reality.

When I do grasp some little corner of understanding, it comes hard and fast in the most unexpected places and times. In Target today, buying decorations for Grace's hospital room, I was nearly knocked breathless. But before the emotions reached my face I had it back under control. Which is good, it's a coping mechanism necessary for cancer parents. Also it's bad because late at night when I try to unravel the knowledge of it, I can't. The emotions don't obey my will, they come when they want and it's almost always at a time when I can't let them.

In Celebrate Recovery and through therapy I had to learn how to cry again. I had become too good at controlling my emotions, the first time Grace had cancer, until I had deadened them completely. I've since learned that having emotions is an important part of being human. I am trying to balance that knowledge with the reality that I don't have time to feel every feeling because my life isn't just about me, it's also caring for my two highly stressed-out and suffering kids. So I know that there's time to feel sad but there's also a time to put on big-girl-undies and laugh in the face of fear. Which is also a critically important part of being a cancer parent.

Grace needs me to model both for her, so sometimes I let her see me cry and sometimes I make silly faces instead. And who's to say what is too much and what is too little? The CHLA therapist tells me I need to worry +less if I'm doing it all right, because there is no "right" in this situation.

There's nothing right about kids having cancer...but still goodness is here if we look for it, which is also a critically important coping mechanism necessary for cancer parents. I find it in the love of our friends and family, in the care of her medical team, in the love Chad and I have for our kids and they for us, and in the love of God. It's those moments of goodness we will hold onto when things get hard.

Anyhow...I have to get to bed. I rarely have alone time and at night when I stay up this late (10pm) we inevitably have a thousand wake ups. Goodnight friends.

Friday, July 7, 2017

Comatose

I graduated from Celebrate Recovery yesterday. I wanted to share a letter I wrote to a friend that explains the freedom I've found in Jesus during my recovery. Dear friend, I got the impression that you consider your addiction as a time of failure. Maybe I was reading into it, but just in case, I want you to know I don’t think of it that way. I want to share with you why I have “great is thy faithfulness” tattooed on my arm. Towards the end of that first year when Grace had cancer I lost all faith in God. I had reached a point when I literally had nothing left-- nothing left to believe with, nothing left to trust with. I was not at zero. I was in the negative and by a very dangerous amount. It was a time of total silence when I did nothing. Weeks passed. He provided everything during that time…and I didn’t care. He was like a Father tending to his comatose child. I was the child who repaid the kindness by peeing on him. I had nothing to reciprocate but brokenness. At the time it didn’t seem like an intimate moment because when you’re the one peeing on God, it’s not very nice to know you’re doing that. It was a time of shame for me because I had always imagined myself to be a potty trained Christian. I thought I had an immovable faith, and I think others might have thought that of me too. For a long time I saw that break of faith as a time of failure. But watching a Father who has his invalid child draped across his lap as he tries to spoon enough oatmeal into her mouth to keep her alive, it’s an intimate, tender moment. Our God is the Father who needs nothing from his comatose child. He doesn’t need the child to recover and repay him. He doesn’t need to have everything work out so he can look back and say it was worth it. Even as the child drools oatmeal out the side of her mouth, and even when she hasn’t language or even the recognition to thank him, that Father is complete in the moment because his love was never dependent on her. He was always completely sufficient in his love and the opportunity to lavish that love on one not capable of reciprocating…that is the love of our Father. And because of his abundance of love I became the beloved even as I remained the invalid. Before Grace’s diagnosis I really did see myself as self sufficient in my faith. I built my identity around that. I thought myself to be unshaken, impenetrable, and unfailing. I imagined myself as being so self sufficient that I could save others without being broken myself. And pretending to be that when Grace was sick was the thing that broke me. Because of therapy and Celebrate Recovery God has been able to destroy the identity I had built for myself. God showed me that I have always been the invalid. I have always been the prostitute in the gospels. And when I was able to accept this truth I loved him as only a forgiven prostitute can. I imagined that having been healed and redeemed I could now move forward in faith. Again and again God has been preventing me from that. He knows I am so inclined to return to my old identity of being “the faithful.” It may not be true for others, but for me, I am to remain the invalid. Permanently. I am to remain wholly indebted to his love. The breaking process has been painful because I valued my identity. It was safe. It was admired. It gave me power. It was painful and humbling to crawl back to being broken and destitute. But that’s where God meets me every time. And like the one who has been forgiven much, I love him much. Very much. It’s been interesting because lately my brokenness has become a dear friend. I value my weaknesses. I love that I have such fragile faith. I love it because every time I acknowledge that it’s all I’ve ever been, that’s when I’m the child being spoon fed on my Father’s lap. And the beauty of that situation thrills my heart. I love to see God act in such humility and sacrifice for one so unworthy. And I am so blessed to be an unworthy one. That is why I got the tattoo. I am so prone to wondering from God, so prone to return to my false identity. I figured if I inked it on my arm I would never be able to run from the truth that he will be faithful even when I have no faith at all. My faith is now about his great faithfulness, not mine. So that’s why I don’t see your addiction as a failure. I see it as brokenness and the time when you found who you were all along. Who we all are. All the time. We are all so broken. So human. So deeply loved. I hope my sharing that is somewhat helpful in some way, Melissa x