After posting my very very super deep thoughts on life and challenges on Friday, I had the worst Saturday ever with Jack, which is essentially a regular Saturday (insert cringe-face emoji). It was long and hard. Jack could not be placated. The day went from Jack shredding papers in my car to Jack peeing off the deck to Jack breaking all the electronics’ charging cables to Jack punching people because he was frustrated and we don’t know why.
At 4:30, we packed it up and drove up the canyon to Joyce and Peter’s cabin praying for a change of behavior with the change of scenery.
It worked. Aside from some in-car antics (I drive now, always. Jeff acts as bouncer), Jack perked up and the naughtiness ebbed. I took a hike with Charlie to Moose Poop Ledge and the water tower through the orange dusky glow of a singularly difficult day.
As I breathed in the cool air that smelled of rain, I felt partially renewed.
But before that time, while driving and lamenting my inability to break the cycle of Jack’s destruction and aggression, I wanted to opt out. To pour the bitter cup out on the ground and watch it run in rivulets away from me.
The pressure of such an enormous, ongoing weight bore down on me relentlessly. “Must God drive us to the brink of insanity to accomplish his purposes?” I sobbed to Jeff.
From the backseat, Charlie told me to please stop crying. Autism can look like bossiness in the service of righting things that seem wrong, like your mom driving, crying, and having an existential crisis.
On Friday Jack had a well-check with the pediatrician. Our Dr. M is an advocate and support to our family, and Jacky loves him dearly. They sat next to each other on the tiny green kiddie chairs by the window. Jack smiled the entire time.
During our conversation about Jack’s needs and struggles, Dr. M told me that of all the patients he has with disabilities, Jack’s are the most extreme case of both intellectual disability combined with severe behavioral issues. He has patients, he said, who are medically fragile and intellectually limited but who are not aggressive. He also has patients with autism who have challenges but who can speak, and who do not destroy property nor hurt people to the extent that Jack does.
He said this plainly and truthfully, and I love him for it. It did not feel like condemnation of us as parents, but as validation for the honest hardships that disabilities like Jack’s present. We are at the intersection of the most extreme cases of developmental delay, behavior problems, and the rigidity of autism. We are beyond the pale.
This is why it is so hard. Thank you for underscoring that what we do IS HARD, Dr. M. Thank you (insert kissy-face emoji).
Much of my angst comes not from Jack’s limitations, which I feel we have accepted and are working with and around, but from the limitations which befall the rest of our family because of them. We have services, but there are gaps in the help we receive. It isn’t constant, although Jack’s behavior’s are. This affects our whole family.
I could outline in detail the lengthy list of things that are grating on me, but I won’t. Most are unsolvable, but a few things can be addressed, and Jeff the Engineer and his naturally trouble-shooting brain went to work designing solutions. We will work on the things that we can change.
Anyhow, I awoke this Sunday morning with a sense that this day was going to feature me dragging myself through an emotional wasteland. I listen to old General Conference talks in the morning while I get ready and this morning, I noticed that the next talk in my queue was Jeffrey Holland’s “Lord, I Believe.” He gave this talk three years ago and it stuck out to me because he opens with the biblical account in Mark of a father who brings his afflicted child to the Savior to plead for help and relief.
Elder Holland says, “With no other hope remaining, this father asserts what faith he has and pleads with the Savior of the world, ‘If thou canst do anything, have compassion on us and help us.’ I can hardly read those words without weeping. The plural pronoun us is obviously used intentionally. This man is saying, in effect, ‘Our whole family is pleading. Our struggle never ceases. We are exhausted. Our son falls into the water. He falls into the fire. He is continually in danger, and we are continually afraid. We don’t know where else to turn. Can you help us? We will be grateful for anything—a partial blessing, a glimmer of hope, some small lifting of the burden carried by this boy’s mother every day of her life.”
When he gave this talk three years ago, I thought it was going to be about special needs children, and I listened intently. But the talk instead unfolded as a discourse on finding faith amid doubt, and using faith to overcome hardship. I remember feeling disappointed that the discussion on the struggling family with a disabled child didn’t continue, but switched to the topic of building on one’s current faith.
Like the parents in this story, our struggle never ceases. We are exhausted. As Elder Holland says, “We will be grateful for anything—a partial blessing, a glimmer of hope, some small lifting of the burden” we carry. He spoke my current thoughts, and he did it years before this day when my crisis was real and my desolation heavy.
As I listened today, I realized that this account from Mark mirrors my exact situation, telling me exactly what I need in my ongoing trial. (*Thank you, God, for prompting Elder Holland to give this exact talk three years before I was ready for it to be a balm on my burning soul*).
I recognize that it isn’t fashionable to say that Jesus is the answer, but he is, in reality, the answer. He is the source of all renewal, the only way back to wholeness.
My family watched the third Indiana Jones movie outside this weekend to mark the end of summer. You remember how it’s all about the search for the holy grail because whoever drinks from it will have eternal life? I kept thinking, “You have it all wrong, Indy and the pursuing Steven Speilberg villains. It’s not the literal water that you drink from an ancient cup that heals you. Duh. Jesus is the living water, people. He is the way to eternal life, which isn’t here, but with God. Nice try, Hollywood, but not quite.”
I need faith. My life requires it. Faith to believe God knows us and gets it. Faith to draw personal strength from Jesus’ atonement.
I need strength that exceeds my limited mortal abilities to raise my children.
I do believe. I honestly do believe. “Lord, help thou mine unbelief,” I could say in unison with the beseeching father in Mark.
Help me where I lack.
Deepen my faith so, as my children’s mother, I can use it to draw from an eternal well of wisdom and strength.