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special needs dad chronicles

honesty, hope and healing for Special Needs Dads and those on their journey

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HONESTY

A Thanksgiving Day Prayer

 Dear God,

Today I pray for those of us who will travel long on little sleep. Who must explain to relatives why their child won’t eat. We pray for those who want to visit and laugh, but instead have to walk the halls or the yard or even take a ride in the car.

I pray that if something is meant to be broken it will be something unsentimental and cheap. That if someone’s hair is to be pulled it will be the least dramatic of the group and certainly, please God, not great-grandma when she only wants to give a hug. Most importantly, may any poop stay contained in the diaper and occur AFTER the meal.

Please let there be something our kids like to play with whether it be Paw Patrol or grandpa’s foot massager.

Please let our child do at least one cute thing that will make Grandma feel like her prayers mean something.

Please help us to be quick to forgive silly arguments, snide comments and well-meaning cliches.

And God, though this day may sometimes be hard, let us view THIS Thanksgiving through the lens of the surreal and of good humor – that any idiosyncrasies will be inside jokes and any horror stories will simply be a great story to tell our SN friends.

May this Thanksgiving be full of thankfulness, and peace and love- unconditional love- which is the specialty of people like us.    Amen

 

God won’t give you more than you can handle and other myths people invented

 

Do you remember that verse in the Bible about, “God won’t give you more than you can handle.”

No, neither do I. You know why? It doesn’t exist. Yep. Just another quaint phrase invented by a Pollyanna well-wisher, a preacher to appease his congregation, a zealot to assuage rage or, perhaps even if I am more gentle in my judgement, just someone trying to help someone get through a hard time.

But, it is not Biblical. Kind of the like the old phrase, “every tub sits on its own bottom.” Sorry, folks. That is an English proverb. Not from the Bible either.

But, candidly, even if you take Biblical effort out of the phrase, “God won’t give you more than you can handle,” it is offensive, insensitive and callous.

Can you tell this phrase strikes a nerve?

Why is that?

When A was born and my world was turned inside out, the very foundations of reality shifted, my script rewrote, hearing a pithy phrase like this was enough to raise my blood pressure.

I wanted to yell, “That is complete bull! This is made-up Hallmark crap! I am hanging on by a thread. By an eyelash. And you, in your meme wisdom, dare to tell me some empty notion like this! As if this knee jerk phrase should be enough to make all right with the world.”

I never did do that. Not to anyone’s face, though I did nurse the grudge many times alone and have poured it out through the windows of my car while driving to work at times.

It is so patronizing. Like, “God gives special needs kids to special parents.”

Where did they come from? No one gets made for this. No one who comes into this sphere of being has a built-in switch they’ve been waiting to use called the “Special Needs Parent” switch. No, when we find out our child has special needs, that our child will never have a shot at ‘normal’ or living a typical life, we are shot up, beat and bent, and our emotions are twisted and our faith wrenched. We find no comfort or hope in a phrase like that. We don’t want to be special and, God knows, we never wanted our children to have special needs.

It goes hand-in-hand with the old saying, “I don’t see how you do it.” A phrase that is never a question, but a statement, perhaps of admiration, but it can drive one crazy. I mean, I have restrained myself for the most part and left with a, “we’re all doing the best we can,” but what I’ve wanted to reply is:

  •  You don’t see how I do it? I don’t know how I do it.
  •  You don’t see how I do it? Well, what are my options? Escape to Narnia? Push the pause button on life? Move to Mars? The ‘S’ word? 
  • You don’t see how I do it? Again, the divorce rates for special needs parents hovers around 80 percent and the suicide rate for special needs dads is much higher than average. Don’t tell me you don’t see how I do it. I really, somedays, don’t know how I do it either.

My apologies for the aforementioned sarcasm, but that is the way it is

So, there it is. My rant on this is over. Where does that leave us? What should you say to a parent of a special needs child? Sometimes everything. Sometimes nothing. We – and I say this collectively – don’t want to be pitied. We don’t want to be praised. We want – much like our children – to simply be accepted.

HONESTY: Lessons from Lazarus, Part I

One of the strangest passages in the New Testament is about Lazarus, one of Jesus’s good friends John 11: 1-44. Christ waits until after Lazarus dies to visit his family and, then, bring him back to life. I see the miracle aspect as I see many of Christ’s miracles – he was empathetic and if He had the ability to heal, by God, he was going to do so.

He healed the blind man. The sick child. But, the key point of this story I want to focus on is piece is the authenticity of the situation. When Jesus arrives at Lazarus’s home, he was greeted by many, but, according to most interpretations, he had to summon Mary. One can imagine Mary feeling angry, or forlorn. After all, where was this miracle worker, this savior, this one she had honored when her brother was sick? Why didn’t He come when they sent messengers for him? 

And what did Mary say when she saw him?

Did she praise him with hollow phrases or memorized salutations?

Did she say, “Great one, I have faith in you! From my brother’s death, your will is done!”

Did she say, “Our God is an awesome God! You are the best!”

No, she said, and one can imagine quite flatly or accusingly: “Lord, if you had been here, my brother would not have died.”

Wow. Period.

How did Jesus react? Did he strike her down? Did he admonish her? Did he tell her to be quiet or not to question him, his motives, his timing?

No, he cried.

There is something in that when it comes to truth-telling. Christ can handle our honesty. Our sadness. Even our accusations. That is stated throughout the Bible in different ways, but I find here it resounds with me on a matter-of-fact level. This is not David weaving poetry in anguish or Job questioning the very nature of the cosmos. This is a simple, almost stoic, accusation as Mary, in essence, says, “Where were you?”

And then the reaction. What did Jesus do? He cried. He did not preach a sermon at that moment. He did not tell her to rejoice. He cried. The truth is He cries with us. He is empathetic. He loves us. Even though there are mysteries that the finite mind cannot grasp, even though His Ways are not always Our Ways, He cares. And He is willing to listen. He does not strike us down for our honesty. We can tell the truth.

 

Brave New World

I have mentioned before, everything has changed. Don’t despair. You will make it. Everything is not lost, but everything has changed. How you eat. When you sleep. If you sleep. How you vacation. Your job. Your priorities. Everything.

An example is the familiar cookout. Old friends coming together over drinks. The jokes used and reused are still funny, but comfortable and comforting, like a pair of old slippers. The thick plumes of charcoal smoke shooting from grills. Children laughing and splashing in the pool. You can find yourself sinking back into your old life.

And you might try it once, but, ultimately you can’t go again without taking your new self with you.

You can’t go, because you can’t enjoy yourself. You find it harder to relate. The base of sharing is nil.

When your 8-year-old is not toilet trained. When you have to keep him strapped in a wheelchair so he won’t strike out or flail at another kid. When you have to constantly monitor him so he won’t hit his brother for the 1,000th time and you have to counsel that brother when he says he hates his brother because he has special needs, well, that makes it hard to hold your solo cup and nibble at your burger and engage in talk on football, or work or join in the last discussion on technology or pop culture.

Your world is not completely centered around your special needs child, but it is affected. Easy jocularity, complaints of having to change a one-year-old diapers and hearing about how someone loves Ricky Gervais (despite his disdain and condescension of the special needs population), makes it hard to engage or relax. You feel the ebb and flow of the conversation float over you and see yourself stuck on a sand spit watching it all. You can still fake a laugh, extend a hand and grab a cold one, but it is all a joke. And not a funny one. Because the joke is the event when everything with your child seems so terrible and out of place and the joke is how you feel inside which has the capacity to make you feel like a joke.

Only at the end of the night, when you are home on the couch and your family is in bed and the house is quiet can you relax. With the sound of stale laughter still in your ears, you swear to never do that again as you reach for solace in the bottom of a bottle.

Impotence in the face of adversity…and yet…

I grew up as a Preacher’s Son moving from city to city every few years and that in itself is a book I wrote that might see the light of one day.

The one thing I learned – rather harshly – was I could fight my way through anything. Enemies. Obstacles. You name it. I could use my will, my mind, talent, hard work and self-discipline and could carve a niche, find my place, raise myself up from the constant new kid status and defend my insecurities.

In junior high and for a few years in high school, it was basketball. I could channel my anger onto an asphalt court and use hours upon hours tossing a worn ball to a tired hoop to make something of myself. Eventually, I honed my game enough to find acceptance on the playground courts and earn a spot on the roster at two high schools.

When I quit sports, I began playing guitar. Again, if I was frustrated, I could practice and practice and, over time through blistered fingers, write songs, learn scales and, eventually, turn up the distortion and play loud performing in venues. Again, I could channel that anger or frustration constructively, instead of destructively. Music, like basketball, became my catharsis, a place to take anger, frustration and depression and turn it into something else. And, by it, making – in my mind – something of myself.

I used those same ideals through college when I felt challenged academically. I used them at work to climb my way up the ladder. I might fall down – heck I fell down many times –   but I would get up and I would eventually triumph. That was the chip on my shoulder. A chip, but also a motivation, a defense against my seen enemies and my unseen ghosts of the pasts and as a motivation it worked.

Through time, I honed off the hard edges of the chip. Through Grace and Love given to me by God, through lessons taught by my wife and by friends, I wore off many of the jagged edges, but the impetus, the genesis of who I am in regard to this ‘fighter mentality’ was born 30 years ago and had become as much a part of the fabric of my being as the color of my eyes.

Then A was born

For the first time in my life. Ever. I could not change the situation. I could not work hard enough to replace the part of his chromosome that was missing. I could not outsmart it. I could not outthink it. I could not outwork it (I say that again to emphasize the mere frustration of it) I could not out-anything it. At the time, I felt I could not do anything to help the situation.

Self-defeat. Deflation. Depression. And the main word that surfaced in my vocabulary for the first time in my life:   Impotent.

It was the day that I learned that I had nothing to give in many ways, and, at the same time, I had to give all I had to everything outside of myself to make the situation better.

It was the day that I learned that faith went to unimaginable depths and that talk of fate and destiny take on a different shade of meaning when they cease to be abstract.

It was the day I decided to work harder than ever before at what I could control, but at the same time I had no idea what I controlled anymore.

It was the new beginning

The framework of my life had been altered irrevocably. I had been transported to not only a different planet, but a different solar system where the very reality of physics and gravity had shifted under my feet.

I suppose it was the day faith died…but faith was reborn…even a seedling in a pile of shit..it was a day when things became more real…Politics, sports and entertainment sank into beyond paltry distraction…everything changed…. Time to get to work…it was time to figure out what I could change….

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