Hospital Stay, Day 13

(Grace naps a lot from the morphine and Benadryl. Best pain management is sleep I think.)

I don't know why. Last year I decided that I would memorize several old hymns. The day dream was that if I were ever captured by the Taliban then I would sing the hymns and they would be won over and all of the wars of the world would end. Strange, I know. No one was supposed to know that, but there you go.

I memorized "Great is Thy Faithfulness," and today I was singing it in the hospital elevator when I went to get my coffee. "Morning by morning, new mercies I see. All I have needed, thy hands have provided. Great is Thy faithfulness, Lord unto me." The reverb in the elevator is excellent, by the way, so I really enjoy singing there when it's empty.

Last night, or rather at two in the morning today, Grace had to go potty. I have to carry her since she is too weak to go by herself, plus there are eight tubes and a tower connected to her right now that get very tangled. In the light of the bathroom I noticed her mouth was a bloody, gooey mess. I called in the nurse who called the doctor who ordered platelets for her. Within an hour or so she had a transfusion. The sores in her mouth ooze blood and so they will work on keeping her platelets above 20K. This is the second time in three days she's needed a platelet transfusion for the same reason.

Yesterday I was cranky, lonely, bored, and tired. I was so ready to go home and be a family again. But when she needed the platelets all I could think was how grateful I was. All my anger and frustration melted, none of it mattered anymore. I am so grateful to the person who donated the platelets. And for the nurse who acted promptly. And for the doctor who was up all night so the order could go through. And the blood bank person who made sure it was a good match for Grace. I was overwhelmed with gratitude that all these people are protecting my daughter.

This morning God acted in His faithfulness to help Grace. He didn't look at my unfaithfulness, He worked off His own goodness and His promises to me and my family. I wish we weren't here. I wish Grace wasn't in constant pain. I wish a lot of things right now. But what matters is that she needs help and God has us in a place surrounded by people who are helping. His mercy is all we have needed, and He has certainly provided.

(I miss my boys)

Opposite Gods

(Grace and Luke having a hospital visit snack. Not really related to the post topic but I thought I'd share all the same.)

I've been reading Beth Moore's "Jesus the One and Only." She writes about the Gospel of Luke and yesterday's reading focused on the widow's son that Jesus resurrected as well as John the Baptist's death.

Luke 7:11 

Soon afterward Jesus went with his disciples to the village of Nain, and a large crowd followed him. A funeral procession was coming out as he approached the village gate. The young man who had died was a widow’s only son, and a large crowd from the village was with her. When the Lord saw her, his heart overflowed with compassion. “Don’t cry!” he said. Then he walked over to the coffin and touched it, and the bearers stopped. “Young man,” he said, “I tell you, get up.” Then the dead boy sat up and began to talk! And Jesus gave him back to his mother. Great fear swept the crowd, and they praised God, saying, “A mighty prophet has risen among us,” and “God has visited his people today.” And the news about Jesus spread throughout Judea and the surrounding countryside.

Moore points out that no one in the crowd asked for a miracle, but that this miracle is completely driven by Jesus' compassion alone. He went to touch the coffin (a massive Jewish taboo) and brought the boy back to life with one word. She writes that, "Jesus ran into a woman (the mom) in hopeless despair and just reacted with what came most naturally to him-- healing mercy...I believe we have a small glimpse into what Christ would do in every one of our despairing situations if a greater plan was not at stake..."

The next chapter deals with John the Baptist's questioning if Jesus was the Messiah. Moore writes that John did know that Jesus was the Messiah, he had just baptized Jesus and saw heaven open on Him a few months before. She points out that John sent his followers to question Jesus while John was on death row in jail. Jesus replied,

Luke 7:22 

“Go back to John and tell him what you have seen and heard—the blind see, the lame walk, the lepers are cured, the deaf hear, the dead are raised to life, and the Good News is being preached to the poor. And tell him, ‘God blesses those who do not turn away because of me.’”

Moore writes, "John had heard the wonders Christ had done for others. I think maybe his faith was shaken because he could have used a wonder for himself, and he didn't appear to be getting it. John knew with his head that Jesus was the Messiah. Sitting in that prison cell, I think he was having a little trouble knowing it in his heart." Jesus didn't rescue John. His was the one request in the Gospels for a miracle that Jesus denies. 

As a kid I was afraid of "God" of the old testament who punished and judged and asked Abraham to sacrifice his son on an alter. When I was in college I fell in love with Jesus. The Jesus who touched the dirty and poor and surrounded himself with kids, who bought my forgiveness at a great personal price and showed me the compassionate and gentle side of God. And Jesus is God. 

Years ago I had been taught that God always wants our good, our success and our prosperity and if we lack those things in our lives it is because we lack faith, not because God allows pain. I know God doesn't cause evil, I know that He is the definition of good, of beautiful even. But He clearly allows disease, pain and death. I know He allows it because Grace is still sick. God has the capacity to overturn evil at every opportunity and chooses not to...though sometimes He does and one day will permanently. 

I wrestled with what I had read the whole long drive home from the hospital last night. How can the God who allows suffering in His divine plan be the same God who suffers immensely when He sees His humans suffering? But Biblically it adds up. The Prophets whom God esteemed are thought to have all been martyred. Many of the early Christian converts were killed brutally. Paul and Peter and James were all executed. And conversely we see that Jesus, being the exact likeness of the Father, weeps and reaches out to comfort those in mourning. 

Grace having Leukemia allowed God to reintroduce himself to me. Last night in the car He risked showing me that He is both. He is both the God who is not afraid to use our suffering to bring about a bigger plan of good, as well as the God who is moved with a compassion so deep in his soul that He enters into our pain, even taking it onto himself as his own burden. 

The reason it was a risky move for God to reveal this to me is that it puts Grace on the line. It means that if I continue to follow Him, I will have to trust Him to choose what is right for Grace. Not me. I will have to trust that He is good because of who He is, not just for what He does for me. It's the scariest faith, and I was terrified.

But where else could I go? He alone has the words of life. And all that is good in my life, all that is beautiful, all that is solid and real and true...all those things exist in my life because of Jesus. Even that my kids exist, it's because of Jesus. He has shown Himself good to me so many times before.

So I'm still in. I told Him so last night. And suddenly I could pray for Grace again, in the way I've been wanting to. Somehow the dam broke and I can pray, probably because I now have a better idea who I am praying to, and knowing better what to pray for. I can pray for God to be involved without holding back in fear that He won't answer my prayer. I can pray for her with all my heart, trusting that God is both compassionate and who is writing a story that will make Grace's life and death something eternally worthwhile.

I feel I know Jesus better today, I know more who He really is. And that is a treasure, costly bought. 

Wild Ride

Today has gone surprisingly well. Grace hates having her picc line dressing changed, but she did a great job even though she was very unhappy about it. Her numbers are still low, but higher than last week which made the doctor feel optimistic that the chemo is probably working. I was feeling really up. Grace has been talking today, smiling and making jokes. So far no nausea from the chemo, but last week it didn't hit until midnight, so we'll see how today ends.

Today I joined a Facebook support group for ALL. Within ten minutes I was connected to two other moms whose children also had Ph(+). One of them commented that it's been a year for them since diagnosis and a "wild ride." And in that small statement my courage collapsed.

I feel like I live in two dimensions. The real and the imagined real. Sometimes, like today, I feel unfamiliar even in my own house. It feels as if I'm shocked out of a dream and I don't know where I am for a moment. In my imagined real, my plans and schedules and disinfectant wipes are enough to cure Grace. Today I was shocked out of it by the other mom's statement and I realized my plans have no power. My schedules, while helpful, can't cure, and my wipes don't even impress Grace's doctor, compared to her medicines. And suddenly I'm back in that unfamiliar place called Leukemia. And it's real. Suddenly very real.

Sometimes I feel I don't even know how to pray for Grace. Obviously I want God to heal her completely and that this will be one day an amazing story. But I also know that not all of God's stories end that way. I want to pray for God's will to be done, but I'm so afraid to that I worry that I'm avoiding the topic too often.

Sometimes I'm so filled with peace it seems to be my only reality. When I'm afraid like today, it seems like the peace was only a hopeful dream and my fear is the only true reality. So then I turn back to God's word, to find his reality. It calms me again and helps me to breathe. This Psalm is just right for tonight.

Psalm 116

1 I love the Lord because he hears my voice
    and my prayer for mercy.
2 Because he bends down to listen,
    I will pray as long as I have breath!
3 Death wrapped its ropes around me;
    the terrors of the grave[a] overtook me.
    I saw only trouble and sorrow.
4 Then I called on the name of the Lord:
    “Please, Lord, save me!”
5 How kind the Lord is! How good he is!
    So merciful, this God of ours!
6 The Lord protects those of childlike faith;
    I was facing death, and he saved me.
7 Let my soul be at rest again,
    for the Lord has been good to me.
8 He has saved me from death,
    my eyes from tears,
    my feet from stumbling.
9 And so I walk in the Lord’s presence
    as I live here on earth!
10 I believed in you, so I said,
    “I am deeply troubled, Lord.”
11 In my anxiety I cried out to you,
    “These people are all liars!”
12 What can I offer the Lord
    for all he has done for me?
13 I will lift up the cup of salvation
    and praise the Lord’s name for saving me.
14 I will keep my promises to the Lord
    in the presence of all his people.

15 The Lord cares deeply
    when his loved ones die.
16 O Lord, I am your servant;
    yes, I am your servant, born into your household;
    you have freed me from my chains.
17 I will offer you a sacrifice of thanksgiving
    and call on the name of the Lord.
18 I will fulfill my vows to the Lord
    in the presence of all his people—
19 in the house of the Lord
    in the heart of Jerusalem.

Praise the Lord!

Angry at God

(Grace painted this for me yesterday.)

Last night was a prayer and worship service at our church, my first outing since Grace's diagnosis. I sat the entire time with two ladies from my church on each side, each with a hand on my back. They didn't say much and that is exactly what I needed.

I asked God to clear my head and all the confusion. More than anything I just wanted a word from him, to hear his voice, to feel his comfort. I was completely mixed on being there. Half of me wanted to run away and half of me refused to leave until I felt him. Luckily the refusing me won.

As I was praying, and I have no idea what I was praying, God showed me that I was carrying a burden I wasn't meant to. (Teri Reisser, my therapist, you'll be happy if/when you read this). I am by nature a people pleaser, which is why I was in therapy before Grace got sick. God showed me that I wanted good to come out of Grace being sick, which in of itself is not a bad thing. I've desired that people would be changed when they see how God is working in our lives, but the problem was that I had taken the emotional responsibility of that happening.

Also God showed me that I was not only trying to "save the world" but that I was trying to compensate for him, as if he made a mistake by letting this happen. I was trying to cover his mistake with my actions and feelings, pretending that this was really all ok with me because it was for his glory. He let me know last night that it was ok to be angry at him. And it all came out.

I am so angry at God. That he would let this happen to us, to Grace. That he would allow his people to suffer. And as we suffer I feel the world suffer. I feel connected to the sick and broken in a way I've never before, it's no longer "them" and "me."And I am angry at God for all of it. And I feel so connected to Jesus because he has allowed me to be real with him. He's made it safe for me to be angry at him and when my pretending went away, the real me was filled with his peace and presence in the way I've been longing for. And I'm still broken. And I'm still angry. And I feel peace for that.

If God brings good out of this, it will be his miracle, not mine. He showed me that my job for now is to take care of my family and keep my eyes on Him only. If others are helped or encouraged or even find salvation, it will because he did it. Not me. Only other people pleasers will be able to understand the relief that brought me and the huge weight  that has come off my shoulders.

And I can be myself around Jesus, even my worst self. What a relief. All last night during worship my repetitive hymn was, "Thank you that I can be angry at you and still be loved by you."