Don’t Be Me

I have always been an overachiever.

Take last week. I am not quite 50 but was diagnosed with shingles. In my eye. Because, go big or go home, right?

Shingles is directly related to stress, which has been a constant unwanted companion since 1996 when my Caleb was born missing part of a chromosome. I’m sure there was stress before then. I know everyone is under stress. Stress can’t be quantified or compared or broken into any kind of functional test. However, the stress of being the mom of a special-needs, medical-fragile child is in its own category.

Recently, when I applied to have my now 22 year old precious, wonderful, amazingly strong son put on a list for residential housing, I was astounded to find out the criteria.

My doctors had to write why I was physically incapable of caring for my son.

I have moved 23 times, all over this glorious country, but in this particular state, there is a shockingly absurd lack of housing for those with special needs. A few years ago, a friend’s son was going through a two-week period of no sleep due to bipolar mania. She sought help from a developmental pediatrician we both revered. Unfortunately, even though the doctor did her extreme very best, there were only six beds available in the state for mental illness on that particular day. They were gone before she could apply.

My friend did all she could. She took her son home and lived through five more days of no sleep for her, her husband and their adult child.

There is something horribly wrong with this outcome.

When I asked three of my doctors to write letters for the state to place my son on the critical waiting list for housing, I figured each would write about one condition. To my horror and shame, the three of them came up with 19 health conditions that were debilitating, stress-related and a few of which will eventually prove fatal.

My first instinct is always to protect Caleb. He is my baby. He is my responsibility. He is a young man trapped in a 6’2” body that weighs over 240 pounds. He will keep progressing but will never be an actualized, functioning, independent adult. My deepest fear, the one that wakes me in sweat, shaking at 2:00 AM is that I will die and he will be placed wherever a bed is available, without me being able to help it feel like home. I never go back to sleep after those wakings.

So I sent the letter. We got approval to be on the list. After two tries, we found a wonderful, peaceful, loving, perfect home. Caleb had to complete a two-part TB test, which I initiated immediately. I began to decorate his new room in my head. I was planning how to help him through the transition and figuring out the best way to present this life-changing event to him.

But.

The night I chose the house and began the procedure, I cried for six hours straight. I feel like a failure to my child. I feel like I am abandoning him. I feel like I am abdicating responsibility.

Then, deep in my conscience, a shadowy finger beckons me and reminds me that I am providing for Caleb, for when I won’t be here. She reminds me that he is a young man and should have a life of his own. She reminds me that it will be best for both of us for him to establish his own life, with frequent visits and constant reassurance that he is so loved.

The morning after the six-hour tear session, my eyes were swollen, but I chalked that up to all of that awful sobbing. I figured I injured my eye with the violence of those tears or perhaps caused a stye.

Six days later, I woke up to an incredibly angry right eye. If I were to try to post a picture, I would need that technology which shades the picture, with a picture box warning that the image would be graphic. It was horrifying, truly, to see my eye closed by red and purple swelling that was so heavy I couldn’t open it.

Again, I figured I had some sort of eye infection. I was fortunate to get an appointment with an ophthalmologist that day. He walked in, asked me if it hurt to brush my hair (how the heck could he know that???) and when I replied that, yes, it did, he put some drops in my eye, looked at them through some device and calmly said, “You have shingles in your eye. You might go blind in that eye. Here’s some medicine.”

He tried to leave the room but I am a bulldog after challenging Caleb’s doctors for 22 years.

“What should I look for? How can I prevent blindness?”

He replied, “Take the medicine and come back Tuesday.”

My mom was with me. I looked to her and she was crying. The nurse wouldn’t meet my eye.

“One more question,” I asked, causing the doctor to sigh and hold his hand on the door but not fully open it.

“What caused this?”

“Have you been under stress?” he asked.

I laughed and said, ‘a little.’”

“There you go,” he replied, finishing his grip on the door and walking out.

I was numb. Now it was 19 conditions. When is it enough?

A-ha, but there’s more.

The next day, Caleb’s caseworker called to tell me that the wonderful, perfect home that had opened up for him was now not available due to funding. My world fell down around my feet like deflated balloons.

I have worked with a Theta Healer for a few years. When Western medicine can’t help me, I go to her. She’s like a therapist on steroids, who uses prayer and incredibly probing questions to ferret out the cause of an illness or condition. She speaks to the theta waves in the brain to help your brain heal your body. I always leave her office feeling healthier and ready to fight whatever is ailing me.

Three years ago I was struggling with Epstein-Barr, a virus that caused me to sleep 14-16 hours a day. There is no cure. I’ve read first-hand accounts of some people who never get over it.  I had a few sessions with her and was able to resume my normal life.

So I called her with this situation and saw her a few days ago. I explained all that was going on. She listened, and then quietly looked up.

“So you think that in order to not have to care for Caleb, you must be sick. And you keep getting sicker and sicker to prove that point.”

BAM.

There’s that old, cloying adage that parents don’t get sick days. Looking back over the past 22 years, I can now see that sometimes I would run myself down trying to be the perfect parent at all times. I would then get so sick or need surgery or completely fall apart instead of just taking some time for myself. I felt time for just me was selfish, just as I fear that letting my son live in a residential home is selfish on my part.

How many of you feel that way? You don’t have to be the parent of a child with special needs to feel this. You don’t have to be a parent. You could be caring for your parent, or a spouse or a sick pet. You could be someone with a job you don’t feel you can step away from. It can be anything that demands your full attention and siphons away any time to care for yourself.

Allow me to be the unwitting example of what can happen if you neglect yourself. When I do find the right place for my sweet son, I will go into mourning but after that, I want to watch myself carefully and see how many of these health conditions improve or disappear. I’ll be my own scientific study.

But it’s not too late for you. I know we can’t all stop whatever we are doing but we can take little steps to care for ourselves. One option is to learn how to breathe. I am at fault for constant fight-or-flight breathing, which causes toxic amounts of carbon monoxide to build up in your lungs. It’s all about the exhale. There are videos on YouTube and apps that help you learn to breathe.

There are also apps that offer three-minute meditations. My favorite is Headspace but there are plenty to choose from. I used to steal three minutes to hide in the bathroom from my screaming toddlers–and scream as loudly as I could into a towel so I wouldn’t frighten the little ears pressed so tightly against the doors. I wish I’d had an app then to help me make that time productive.

Found time is a treasure but we can all step outside for a breath of fresh air. Twenty minute naps flood me with energy to meet the day. Holding a cross or a crystal or whatever brings you peace can help too. I know these are tiny steps but I believe that taken together they can have a profound effect on your health over the years you may be battling stress.

The distilled message here is find something that brings you joy and peace. From there, you will gain the strength to do what you need to do. You will also strengthen your precious soul, mind and body and hopefully end up healthy before you rack up conditions that will weaken everything you need to be everything you are.

Photo credit: shutterstock.com

Advertisements

Run

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.

But…

Run.

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.

Photo credit: Medium.com