Bad Days
It’s been almost 6 years since Ellie started having seizures. It was the beginning of 6 very long weeks with multiple trips to the hospital. The medications meant to control the seizures knocked Ellie out. We brought her home with seizures still every 5-10 minutes. She was barely conscious for a full week. On the other hand, I had a hard time sleeping, or relaxing at all. A neurologist told me we could add more meds; but the more we gave, the more Ellie would sleep. So we needed to decide how many seizures we were willing to accept her having every day. I wanted to scream, “NONE!” As I watched over Ellie, I wondered if this was our new normal. And if so, how was I going to ever be ok with it.
Now there was a man named Joseph…a good and righteous man, ... This man went to Pilate and asked for the body of Jesus. Then he took it down and wrapped it in a linen shroud and laid him in a tomb cut in stone, where no one had ever yet been laid. - Luke 23:50, 52-53 ESV
Good Friday
It’s easy to breeze through Good Friday, busy preparing for Easter. I know Jesus conquered death so do I need to grieve? But Jesus’s followers did. They must have been shocked, wondering why and what to do next. Jesus was dead. They didn’t know the joy to come. They must have felt like nothing would ever be ok again. Until sundown they could keep themselves busy preparing for the Sabbath. When evening came, they couldn’t distract themselves with work anymore. Grief and fear must have been heavy on them that Sabbath day.
This song has been on repeat in my head this week.
One Day at a Time
Keeping busy in a hospital room is difficult. I research and read and focus on the details of Ellie’s treatment. During one hospital stay, Ellie was started on a ketogenic diet.1 Once she was in ketosis, the seizures began to decrease. After a few weeks, we weaned her down to one seizure medication. And she woke up! It took a while, but she started smiling and playing again. Naturally, there were trade offs. The diet caused reflux to start up again, but we were thankful she was having no seizures. NONE! I didn’t have to figure out how to be ok with daily seizures.
It was the day of Preparation, and the Sabbath was beginning. The women who had come with him from Galilee followed and saw the tomb and how his body was laid. Then they returned and prepared spices and ointments. On the Sabbath they rested according to the commandment. - Luke 23:54-56 ESV
Silent Saturday
This Holy Week, I’ve been thinking about the time in between Jesus’ death and resurrection referred to as Holy Saturday or Silent Saturday. According to the verses from Luke above, the day after the crucifixion of Jesus, at least some of his followers rested according to the commandment. What did that look like? Did they pray, read the scriptures, worship, nap? I am intrigued by the idea that they rested. When I’m upset by a situation, I stew over it. Last week, Ellie’s neurologist confirmed my concern that Ellie was having seizures again. We need to increase her medication, possibly add another medication. What will we need to accept this time? Will the seizures stop?
Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light." - Matthew 11:28-30 ESV
At the End of the Day
When I face difficulties and grief, I have trouble resting. I want to do something, figure it out, fix it. Even if I have to sit still, like being stuck in a hospital room, my mind will race through worst case scenarios like the Road Runner in cartoons. My anxiety rises with each possible outcome imagined. In my own silent Saturday, can I rest according to the scriptures? Can I take on Jesus’ yoke and find rest for my soul? It’s not my natural inclination, but He is teaching me His way. There are different types of death—relationships, dreams, seasons all come to an end. We live many silent Saturdays in between life and death. In Jesus they can be holy days also.
Sow for yourselves righteousness; reap steadfast love; break up your fallow ground, for it is the time to seek the LORD, that he may come and rain righteousness upon you. - Hosea 10:12 ESV
And I will give you a new heart, and a new spirit I will put within you. And I will remove the heart of stone from your flesh and give you a heart of flesh. - Ezekiel 36:26 ESV
A New Day
My heart can feel like stone sometimes, when I don’t want to face another loss, another Good Friday. This is the hardened place God wants me to bring to Him humble and ready to receive a new heart. If I’m honest, that’s where I am today. A rough night and a stressful morning have me anxious and overwhelmed. I neglected my time alone with God in His Word this morning and my tendency to figure it out and fix it took over. In the middle of my frustration, the Holy Spirit nudged me to step away. Thanks to Carl’s support, I drove away, crying and praying. I ran errands and then sat in the car. The Lord was with me, allowing me to complain, cry, confess and eventually quiet. Then He gently corrected.
Bless the LORD, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy, who satisfies you with good so that your youth is renewed like the eagle's. - Psalm 103:2-5 ESV
Holy Saturday
Sitting alone with the Lord, I found rest. I don’t understand why Ellie has to go through struggles. I don’t like it and I can’t fix it. But I can trust in the One who does understand, knows how to fix it and will one day heal everything. I can let go of my need to be in control, and choose to trust the outcomes to the Lord. As I returned home, I praised Him for this truly holy day. A day to remember Him, to sit with the unknowns and the questions, like His followers did on that sad Sabbath day, and to rest in all His benefits, all His goodness to me. It is hard for me to break down my own defensive resistance, my fallow ground, but when I do, He is faithful to rain down righteousness so I can grow in His steadfast love.
I’m thankful for God’s patience with my need for repeated lessons in this. My hope in Him is growing with each glimpse of His glory in redeeming, renewing and restoring all the hardened and lifeless parts of my life. He keeps showing me His pattern of moving from death to life, something only He can do. Is there a time you’ve seen God bring life and hope after loss? Is there a situation where you are waiting to see Jesus bring His resurrection life?
The ketogenic diet has been used since the 1920s as a treatment for intractable seizures. It also addresses Ellie’s mitochondrial disease which causes her body to not be able to fully utilize carbohydrates for energy production. A keto diet like the one she is on can be very hard on the body.