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Wonder at work in the eyes of a special needs child

This site addresses and confronts a lot of the darkness in being a special needs dad. But it is not all bleak. I believe there is some grace and peace and wonder and joy miracles not only at the end of everything, but also during the journey.

One theme that resonates with me on what a lot of us are missing in our lives is ‘wonder.’ It is a theme I will address at length at some point, but in relation to the world of special needs children, I think of Matthew 18:3, where Jesus said we need to be like little children to get into heaven. There is a ton in that one sentence, but the thing that gets me is ‘wonder.’ Little children have lots we need – and have forgotten – that we need to emulate: Openness, joy and wonder. We need to have wonder in our lives everyday. Cynicism and despair aren’t welcome. Worry is not welcome. Wide-eyed curiosity is.

One the things that A has taught me is grasping and regrasping that sense of wonder. I see wonder in the eyes of A and other special needs children more than anywhere else. Pure unfiltered joy. Excitement. Not eyeing the horizon, not criticizing the past, but discovering and rediscovering a sense of wonder in every moment. It will not solve all your problems, but learning that lesson from them is a blessing for this journey.

Let me show you what I can do, He told me

We got the looks, could sense the un-asked questions.

“Was your wife drinking when she was pregnant? Did she use drugs?”

   “What did you do for God to punish you like this?”

   “What terrible sin or crime did you commit.”

The answer of question is none of the above. My wife drinks less in a year than I do on a weekend. We did the prenatal vitamins, took the ultrasounds, were beyond safe with any toxins. Nothing showed up. Anywhere. We just hit the reverse lottery. One in three children on the planet at the time known with this certain chromosome deletion coupled with a few other medical issues.

Why did this happen to A? To us? To his brother? To our life? I don’t know, but beyond all, I have to cling to John 9:1 – 3. On the bleakest and on the brightest days, it gets me through.

1As [Jesus] passed by, He saw a man blind from birth. 2And His disciples asked Him, “Rabbi, who sinned, this man or his parents, that he would be born blind?” 3Jesus answered, “It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.”

I pray to hold onto that and to remember that this life and my purpose – real or perceived – is greater than myself.

Sometimes, just say thank you

“Daddy,” A had walked up to the couch where I was relaxing with a glass of Ginger Ale on a Sunday afternoon.” Daddy?”

“Yes.”

“You know what?”

“What?”

“You are faithful.”

“Why do you say that, son?”

He look puzzled. Gazed into the space above my shoulder. Half-looked back at me.

“Because you are.”

Sometimes you take it. Sometimes you need to learn to accept a compliment, a piece of grace, a sliver of hope without asking why. Good enough is good enough. A has lots of these like, “God loves us,” or “I am glad you love me” or “I love you.”

Like I said, good enough is good enough.

Get to work, get to work

You can change. You can’t change the world

In regard to my post on feeling impotent in the honesty section, there is a difference between feeling and reality. And the fact of the matter is, after time, you will need to act. You can’t add a chromosome or work overtime to fix a developmental delay, but you can learn all you can about your child’s issue. You can read all you can about advocacy. You can become a bulldog in fighting to get your child everything he or she needs in terms of therapy and care and medicine.

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You will learn who your true friends are. People will drop you like a bad habit when you have a special needs child. It is painful when they vanish, when their facade of an iron bond becomes nothing but a wraith-like illusion and their once-promising words of ‘always’ become empty . You will feel betrayed, sold out and hurt. You will learn deeper than you have ever before the raw meaning of the phrase, “Fair Weather Friend.”

But you will find new support in other places. Places you would not expect. And people you would never expect, or seek out or think about in a million years. Maybe not new “friends,” – bonds built on your past, shared experiences – but new allies, sympathizers, comrades and – dare I say? – selfless Christians. You will find them in church. In the grocery store. In the eyes of other special needs parents and one evening you find yourself having a conversation and a drink with another special needs dad of whom you have almost nothing in common with, except the strange alternative reality you both have inherited and live in. And, when that tends to define most of your paradigms, your time, your physical and mental boundaries, that is enough.

In the meantime, it can be overwhelming when someone reaches out with kindness. And beautifully, stupefying overwhelming. With that honest act of nothing to gain, just a desire to show you and your family love and comfort. When the neighbor you barely knows offers – though tentatively – to watch after your special needs child so you and your wife can go on a date. When a church member always make a point to kiss him on the head. When the couple you see strolling the aisles of the hardware store, stop you, ask about your child and – even with your defenses high and your tongue ready to unleash a torrent of insults – you become diffused as they relate about a grandson they have with special needs. They leave you with a smile, a prayer and bit of understanding. You find this person who doesn’t dress like you, talk like you, listen to your music or live in your world, loves you and loves your son unconditionally. And you realize and re-realize, bonds made over drinks and jokes are fun. But, bonds made through shared pain and hope and understanding and love supersede all.

You can read more about hope and healing here.