Sometime last month, we started to notice a strange muscle twitch that started on one side of Marcus’ body. It was different from his usual happy/excited arm flapping which his therapists term “overflow energy”. This twitch was sometimes a jerking motion that happened involuntarily and at random times quite frequently throughout the day. It didn’t seem to bother Marcus, but was definitely noticeable to us and to his therapists.
Because jerking motions are often related to seizure activity, and because seizures are not uncommon with those affected with Joubert Syndrome, we were quite worried, anxious, and discouraged. These were my thoughts:
“Why is this happening to him? What if the twitches get worse and he can’t function day to day? Is he having seizures? Will he have to do an EEG? Will he be on medication? Will this medication have side-effects? He has been doing so well lately, he’s not supposed to face another obstacle like this. Why is God allowing this? Will Marcus be okay? Lord, I don’t want to see him suffer. Please take this away. I’m so depressed. Why does my child have to face issues like this? Why does it have to be so hard for us when everyone else’s kids are running around doing fine? My heart is breaking all over again for my son. Lord, would you please lay off for a little bit?”
During this time (as usually happens during our darker moments), Mike and I got to talk after the kids went down for the night. God had put a few things on his heart, while my heart was also desperately trying to find solace in the situation. By God’s grace, here a couple things we concluded after the conversation:
1. Although we’ve grown a little bit in loving Christ, there is a subtle deception in our hearts that we’ve missed. We wanted to trust in Him for the things He could give us (comfort, Marcus’ progress, security that everything will be okay), rather than trusting Him because we love Him alone.
2. While Abraham was fully prepared to sacrifice Isaac because he loved God so much more, we’ve been trying to hide Marcus from God and saying, “Okay Lord, you’ve done enough and it’s already very hard. Please leave our son alone now and only let positive news and progress come our way.”
3. There have been thoughts of loving God out of compulsion. “Christ died for me, so I should love God back!” rather than “Oh, how I love Jesus…Oh how I want to love Him more!”
4. Although we’ve been able to say that Jesus is better than the trials we’ve faced the past few years, we have yet to sincerely say that Jesus will always be better even if our nightmares come true.
In a nutshell, I’ve seen the holes in my love for Christ. But now, I want so much for God to increase my love for Him and Him alone and not for Him plus a guarantee that Marcus will be okay. I pray that God would make my heart so fervent for Him, that no amount of suffering my son would endure could diminish it.
And then I remember God…that He was the father who endured the most because Jesus was the son who suffered the most. Christ suffered the most agony in being forsaken by His father on the cross, while God also suffered the most anguish in having to deliberately turn His face from His beloved who was crying out to Him in the time of greatest need. God was the one who crushed His own Son. When Christ begged God for a way out of the suffering, God didn’t extend His fatherly care to save Him. Gosh, the torture it must have caused God’s heart! I sometimes think that people we know can’t adequately understand the pain in our hearts for Marcus, but I forget that God understands because He suffered the most as a father.
And why did He do all this? So that His love for undeserving self-absorbed sinners like me could be put on display. Because God bruised His own Son, now I get to call Him Father too, just like Jesus does. It’s unbelievable.
I think of how Audrey whimpers when Mike leaves the house because “I just want to BE with you, Daddy!” Or how if given the choice between playing with toys or cuddling with me all day, Marcus would choose to just be with me in a heartbeat. That’s how I want my love for God to be…to love Him simply because He’s my Father. The One who created me, forsook His own Son for me, forgave me, and lavished me with His love. To love Him even if all my worst fears come true.
This quote sums it up for me and I’m praying that it would be true in my heart:
We have to know, to be assured, that God so loves, cherishes, and delights in us that we can rest our hearts in him for our significance and security and handle anything that happens in life. (Tim Keller, Counterfeit Gods)