Have you ever had to serve as someone else’s mouthpiece? It can be a real mouthful as you try your best to represent them and their situation. Serving as a mouthpiece or advocate has been my wife’s and my lot since our adult son Christopher endured a traumatic brain injury in January 2021. There are so many complexities and intricacies. It’s enough to make you choke.
The subject of “mouthpiece” came up in my reading of Exodus recently. God calls out to Moses at a burning bush in the wilderness. God tells him to serve as his mouthpiece and demand that Pharaoh free Israel from slavery in Egypt. In turn, Moses begs God to send someone else to serve as God’s mouthpiece. God is not pleased and burns with anger. No doubt, being a mouthpiece to advocate on behalf of God for Israel before Pharaoh was a daunting task. No wonder Moses begs God to find someone else to serve as the Almighty’s vocal cords. Moses’ excuse is that he has never been good with words. Here’s the exchange between God and Moses:
Moses said to the Lord, “Pardon your servant, Lord. I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue.”
The Lord said to him, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord? Now go; I will help you speak and will teach you what to say.”
But Moses said, “Pardon your servant, Lord. Please send someone else.”
Then the Lord’s anger burned against Moses and he said, “What about your brother, Aaron the Levite? I know he can speak well. He is already on his way to meet you, and he will be glad to see you. You shall speak to him and put words in his mouth; I will help both of you speak and will teach you what to do. He will speak to the people for you, and it will be as if he were your mouth and as if you were God to him. But take this staff in your hand so you can perform the signs with it.” (Exodus 4:10-17; NIV)
I hope God’s anger has not burned against me when I have burned with anger and frustration. I have blown more than a few gaskets with God when dealing with unbelievable pressures related to Christopher’s care. But unlike Moses, my wife and I have never wished for anyone else to take over for us as advocates in caring for Christopher. It is an honor. I only wish I had a staff that could perform miracles!
What I would give for Christopher to be able to speak for himself. But until that day comes, and I pray that it comes again, I will be Christopher’s huckleberry and advocate for him.
Sometimes I have told people in the medical community that “I’ll be Christopher’s huckleberry.” This expression means I am up to doing what needs to be done on his behalf. No, I’m not looking to have a duel with Johnny Ringo, like Doc Holiday in Tombstone! (You can check out their duel and his famous line “I’m your huckleberry” here). But I am up for being Christopher’s mouthpiece and advocate in whatever way necessary. It’s worth noting that in the movie Doc Holiday came to the defense of Wyatt Earp without his knowing it. I don’t know if Christopher is aware of our advocacy, but like the scene in Tombstone, it is a life and death matter. Christopher is incapacitated at this juncture and depends on so many people for his survival. Please pray for God’s wisdom, mercy, and provision as we are entering a critical juncture in caring for my son and his family.
I softly and tearfully cried out again last night at Christopher’s bedside that God would raise him up to care for himself again, to eat and walk and talk on his own. He has always been an independent spirit and his state of near total dependence must be unbelievably hard for him if he is aware. But God is aware and I will keep advocating and petitioning bedside at the foot of God’s throne.
The other day I experienced a small sliver of hope. Christopher’s CNA and I thought he tried to mouth the word “Hi” in response to our nudging. We were coaxing and encouraging him to speak as we transferred him to his Geri chair.
Just think how difficult it is to try and discern what Christopher would want us to do for him if we cannot tell for sure if he is even trying to say hello. Christopher does speak, though not with words. We must rely on his body language, our experiences with him over many years, and sound counsel from others.
Our family medical consultant, Dr. Robert Potter (M.D., Ph.D.) whose expertise includes palliative care, encouraged me recently not to project my suffering onto Christopher. He encouraged me to account for Christopher’s degree of suffering (and satisfaction) at every turn. This is such good advice for me as I seek to be a good mouthpiece (For a movie that provides an incredible model of medical advocacy, refer here to the trailer for Awakenings starring Robin Williams and Robert De Niro).
As Christopher’s advocate, I need to try and put myself in his shoes or chair or bed and tactfully encourage caregivers and other advocates of various kinds to do the same. I am always comforted when those tending and advocating for Christopher share that they try and approach him as if he were their loved one. In fact, in some cases, Christopher has become a loved one, someone they hold dear and whom he also cherishes in his minimally conscious state. He has a special connection with a few of the nurses, CNAs, respiratory therapists, and someone who reads to him. A couple of residents ask about my son. One of the residents down the hall now comes to see Christopher and say hello.
It will take a great deal of effort, even a miracle, for Christopher to say hello in return. One could even say it would be a mouthful, which would quicken a heart full of joy in me.
Many thanks to all of you who advocate for Christopher and us at God’s throne, who try not to project your experiences onto us, but who try as best as you can to place yourselves in our shoes. God bless and sustain you as you endure suffering and grief and as you advocate with and for others. May God fill your heart with divine love, joy, and peace amid trials and tribulations in supporting others as their mouthpiece.
For the various posts related to our family journey on life support since January 2021, please refer here. Thank you!
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