This life as Caleb’s mom has honed me into a devout Christian. I am also a firm believer in karma and the law of attraction. I wish I could only attract good, strong, happy things but sometimes negative just attracts more negative.
A few weeks ago I wrote about trying to find a residential placement for my precious Caleb. I threw in a story which mentioned a sacral dimple that he had in 1997, when he was six months old.
Last week, I found another one. A bigger one that was bleeding. Karma, law of attraction or simple coincidence? I’m not going to speculate. I’m too busy learning how to care for this new disease.
For those so inclined to know this rather icky condition, it is a small depression in the crack of one’s bottom.
One has existed for 22 years. I don’t know when this new one formed or when it ruptured. Yesterday, I found the smallest and newest, above the other two.
Special needs moms will understand the fatigue of which I am about to write. The need to press doctors to please do something—send us to a specialist, write a prescription, give me a diagnosis, anything that will help make sense of something new and terrifying.
Last week, after pushing for a quick appointment instead of one in a month, we saw a colon and rectal specialist who diagnosed Caleb with pilonidal disease. Not uncommon but not common. Just like Caleb.
The doctor calmly listed the care for this condition. He listened to every question and patiently answered every one. He told me if Caleb gets a high fever, this condition will likely be the cause and he will need to come in immediately to have it drained and begin a course of strong antibiotics.
He told me to stop using soap on Caleb’s back. To keep the area trimmed of hair. To apply diaper rash ointments or creams because the one that ruptured last week was certainly painful to Caleb who never, ever complains. Once more, I had failed my son because I didn’t know of a struggle he can’t communicate.
Like all of our other wonderful doctors, this doctor doesn’t know that he just added that one extra card that collapses the house.
I hear an echo in the recesses of my exhausted brain. It whirs around like confetti. Isaiah 40:31 But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.
Papa, it’s so hard and I’m so tired.
My child, I already gave you the words and my promise for this situation: Run the race with perseverance.
But it’s so hard. And I’m so tired.
Run. With perseverance.
When we arrived home from that appointment, the charging cable for Caleb’s iPad broke. It’s his favorite thing in the world so, already upset from the examination, he became angry and agitated that he couldn’t keep the iPad charged at 100%. OCD can be very cruel to someone who already struggles with so many issues.
While I was ordering a new cable online, his case manager called to tell me that his application for residential placement was denied. Again.
I will never understand why, in our life and everyone else’s, when one thing goes wrong it seems like an invitation for other things to go disturbingly awry as well. Law of attraction?
Papa, it’s so hard and I’m so tired.
I often wake right at 2:00 in the morning. I desperately try, like my mother has taught me, to thank God for all of the good in my life. There is so much, truly. I start, but then my mind starts to wander.
What if, after all of this fighting, Caleb ends up in a place where they are not kind to him? What if they don’t notice a small hole in his back and he becomes really sick? What if he wakes in the middle of the night and has no one to comfort him and try to talk him down from a nightmare?
I hear, in those recesses, words that fight to be heard among the chaos, Psalm 46:10: Be still, and know that I am God.
I don’t doubt these words. I know them and breathe them and feel them in the marrow of my bones. But like Peter, my absolute favorite Saint, I find myself panicking in the Sea of Galilee when the water turns rough. I find myself hyperventilating in the garden at Gethsemane. One minute, I’m cutting off the ear of a guard, the next, denying Jesus’ existence, devoid of the faith that had propped me up so well a few hours ago.
I suppose that’s why it’s called a walk of faith. It’s not a cruise. It’s not a romp. It’s a walk, along a rocky, lonely, painful, and questioning path.
Please don’t misunderstand and think for a moment that I’m not acutely aware that this path is primarily Caleb’s. He is the one who has to withstand physical and emotional pain, misunderstanding and living in a world that makes so much less sense than one he would design for himself. I know.
This morning I was working out at home. A struggle for sure, but I was giving it my best effort. About 35 minutes into a 45 minute DVD, Caleb came down and said, with calmness and deliberation: “I need help with my TV. Please.”
These words are a Herculean effort for my son. He typically expresses his wants and needs with as few syllables as possible.
Because this request was so eloquently stated, I paused my DVD and went upstairs to Caleb’s private retreat.
Somehow, this young man whose true IQ can’t be properly measured had programmed his TV to only communicate in French (which I am fluent in, but couldn’t translate this morning) and to only display in black and white. He was pissed off.
I sat on his bed for 15 minutes trying to figure out how to rectify this situation. I am fairly technologically savvy and fairly fluent in French, despite what I said earlier. It was impossible to untangle this mangled fishnet.
I kept saying, as calmly as I could, with my muscles tightening from warm and ready to go to something resembling concrete, “I am so angry right now, Caleb.”
When I finally fixed the problem, I went to hug him and apologize for being angry. He kept his arms as his sides, like one of those toy soldiers.
“Hands to self,” he said.
Like so many phrases in autism, that one is a triumph and a defeat. It’s a triumph that he could communicate such a complicated phrase instead of just screaming. But it was also a defeat in the heart of a mom who was trying to issue an apology.
I have never, ever questioned why Caleb was given to me. I have always accepted that he was given to me, truly a gift, even if I don’t understand it. There are times I wear my role as his mom as a badge of courage. And there are times I cower on the bathroom floor, mascara running black tracks down my face, my chest heaving with sobs that probably should have been let loose back in 1996. Old sobs hurt as much as new sobs.
At the same time, I have relied on government programs to fortify my incredibly vulnerable son’s life. I worry and then worry some more that if something happens to me, he will be thrust into a life he can’t understand. I am confounded as to why they are fighting us so hard right now to help me secure his future.
There is, of course, another Bible quote to combat this worry fatigue. Matthew 6:25-27: Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?
I groan, like any child. And I remind myself that my life is just a borrowed gift. So is Caleb’s. This time will fly by in God’s heart like a few moments. And I will understand everything one day.
Then, like gentle rain slipping down new spring leaves, I hear my brother tell me in Matthew 11:28-30: Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.
I slip the other end of my yoke over Jesus’ shoulder. He smiles at me and we begin the first steps of what will be a long run.
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