Tuesday, February 22, 2011


We keep looking to the Lord our God for his mercy, just as servants keep their eyes on their master, as a slave girl watches her mistress for the slightest signal. Psalm 123:2

Regret. It jumped out at me from David’s Facebook post. His child, who also battled mitochondrial disease, struggled with complications from a recent procedure meant to improve his quality of life. David feared the decision would forever diminish that quality instead.

Their experience resonated within me. Over a decade earlier we’d made a similar tough choice for Andrew. That January the frequent twitching he experienced had moved from his left shoulder area, this time starting up on the right side of his neck pulling his head to his shoulder. Unable to stop it, Andrew tolerated it and pressed into life. However, after a month it spread making it difficult to swallow. In the PICU, we navigated unsuccessful treatments while it spread throughout his body. The doctors feared the threat to his airway. We lacked good options.

We’d tried every seizure medication possible without success or severe side effects. The ketogenic diet remained our only untried treatment. It required an introductory fast to reach a ketogenic state and then strict diet to maintain that state. However, we’d never received official confirmation of Andrew’s specific mitochondrial disorder. For mito kids, fasting either proved fatal or inconsequential depending on the type of mito disease. Without knowing Andrew’s exact type, we had a 50/50 chance.

Unless the movements stopped, a trache and feeding tube would be required. We had no other choice. We agreed to try the diet and hope for the best. To minimize the spread and energy expended as Andrew waited for relief, the doctors instituted a drug induced coma so his body could rest. Enduring seven days of unknown proved challenging. But the hardest part was yet to come. When the doctors brought Andrew out of the coma, his awareness was gone. We’d lost the bet. Fasting proved the worst thing possible for my boys’ mitochondrial condition. I never heard Andrew’s voice again.

So I understood David’s regret. I’d always perceived attempting the ketogenic diet as a huge mistake. I forgave myself, so to speak, knowing research and lack of knowledge contributed to the choice. I didn’t intend to hurt my son. But still I felt regret. However, as I posted my comment to David’s status, I not only validated his feelings but found I could offer hope. For in remembering I finally connected pieces I’d not put together before.

So many times I had described Andrew’s coma state the last 9 months as a gift. I saw it as God’s mercy that Andrew was not cognizant during the decline and struggles from the mito disease steadily overtaking his body. He missed the trauma of constantly throwing up as his GI tract slowly failed. The coma spared him the horrendous symptoms of liver failure. He missed the grief of no longer being able to see. He escaped the confusion of dementia. Already an intense perfectionist by age 3, he wouldn’t even play at recess with his friends when he couldn’t do what they could. To endure such loss and decline would have crushed his tender spirit and caused despair and depression. I’d viewed the coma as God’s mercy. Yet I’d called the decision that brought it to be a mistake. In sharing my experience with David, God corrected my perception. But God didn’t stop there.

For at the same time David’s son struggled, Peter too struggled with digestion issues. His body could now only process formula feeds. Peter hated giving up regular food and the pleasure of taste. How difficult for an almost teenager to lose that key aspect of social culture.

So as I tried to support David, and embraced God’s insight about our experience with Andrew, I appreciated God’s continued instruction into our present struggle with Peter. Even though it hurt, it helped to hear God’s whisper,” Just like that fast brought my mercy to Andrew, when Peter can no longer eat, that too will be my mercy. Because when he can’t eat, it will shorten his time until he comes to me, freed from this disease.”

That proved a hard message to receive. It faded over the next month while Peter experienced steady progress, but I didn’t forget. We thought we’d finally achieved the final stage before returning to regular foods when everything fell apart. As Peter struggled with rapid decline, fear swelled within me as I knew our destination if this downfall didn’t stop. After a two week descent, tests confirmed Peter's body was shutting down.

One would think that confirmation would cause devastation. But because of God’s earlier message to me, peace replaced the fear. I understood the decisions we had to make were simply acts of love and mercy.

How many times do we view circumstances in our lives as abandonment by God? Yet, in our very struggle through those circumstances we come to God, or gain a new revelation of his love, or experience his presence in a life changing way. In our humanness, we reject dependence on God and declare self rule. But if circumstances enter in, and they in turn cause us to be freed of that bondage of self reliance, do they not become merciful moments God uses to deliver us? No trauma we experience in this temporary life on earth could compare to the pain of eternal torture and separation from God.

In Matthew 5, Jesus said “If your right eye causes you to stumble, gouge it out and throw it away. It is better for you to lose one part of your body than for your whole body to be thrown into hell. And if your right hand causes you to stumble, cut it off and throw it away. It is better for you to lose one part of your body than for your whole body to go into hell.” (NLT) Nothing compares to eternal separation from God.

Can this challenge us to face our struggles differently? Can the cancer that brings us to God be viewed as merciful? Can the troublesome marriage or long term caregiving be merciful in how it forces us to lean on God? Can the trauma in our lives be merciful moments of experiencing God, steps toward eternal salvation?

Although hard to accept, this truth frees us from doubts. God’s love and mercy never fails. He promises to never leave us or forsake us. All powerful, he can bring good from anything that enters our life. Ask him to reveal his mercy.

No comments:

Post a Comment