"To be great is to be misunderstood." 

- Ralph Waldo Emerson

"Drop the last year into the silent limbo of the past. Let it go, for it was imperfect, and thank God that it can go."

- Brooks Atkinson

http://youtu.be/SbqE655OlTg

"Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are." 

- Bernice Johnson Reagon

http://youtu.be/fCNvZqpa-7Q

For background and context:

Part 1
Part 2
Part 3

I don't know what it emotionally feels like to have a disability but I know what it feels like to be the father of a 3-yr-old daughter with a disability. It feels like a life of pain. Yes, there are brilliant, powerful and AMAZING moments but there is always this undercurrent of pain. Like a cello playing the same note throughout the entire symphony. Sometimes you tune out that lone cello all together, sometimes the cellist gets a solo - playing that single, constant, long note. Sometimes that one note detracts from the symphony but in rare moments it actually improves the music.   I'm not being dramatic, I am not being overly emotional and I am not looking for pity - I am just being honest. Now some of this pain is real, some is just perceived and some is self-induced. But it is all pain.

EVERYWHERE we go we are stared at. Imagine what that might be like - to have your child STARED at everywhere you go. Let's face it, Annie is stared at because she is in a wheelchair (and astonishingly gorgeous but that detracts from the point I am trying to make). It is her disability that draws the gaze of strangers. EVERYWHERE we go, heads turn and remind me that my daughter is "special".

To be fair, no one heads to the mall expecting to turn the corner and see an ADORABLE little girl in a wheelchair. People are caught off guard. They are unprepared. Often you can tell that they cannot wrap their head around what they are seeing. 95% of the time, people say something nice such as, "She is a cutie". 5% of the time they say something painful such as, "Poor little thing". Imagine if 1 out of 20 strangers you passed said something unintentionally hurtful about your child - who has already been through more struggle in 3 years than many people go through in a lifetime.

Being the parent of a child with disabilities is like being in a world where everyone around you is Edward Scissor hands. Even those who love you the most are bound to cut you. It hurts. It is always unintentional. But it always hurts.

I can't speak for people with disabilities but being the parent of a child with a disability gives us a window into the character of God that is rarely seen. A forgiving God that is constantly wounded by our failings. that is why it is so important for us to develop the discipline of preemptive forgiveness. We simply cannot survive without it.

When we head out to run errands and encounter strangers, when we gather with friends, when we gather with family, I (try) to pray, "For what you are about to say and do to me and my daughter, I forgive you. I forgive you. I forgive you. For you know not the pain you are causing."

And this is just one of the INNUMERABLE lessons that the disabled community teaches us. We MUST be agents of forgiveness. Yes, it's hard. Yes, it hurts. Yes, there are times we must stand up against wrong and stand for what is right. But we must always forgive . . .

Nothing less than our very humanity depends upon it.

Part 1 here
Part 2 here

So we are created to give. We will never be fully human until we become givers. We give to our houses of worship, the poor, organizations that excite our calling, we volunteer our time, we involuntarily give of our time in both the "now" and the "not yet" which leads us to be givers of grace in a graceless world and this leads us to being sources of forgiveness. But there are many ways to define forgiveness. I like Frederick Beuchner's definition:

To forgive somebody is to say one way or another, 'You have done something unspeakable, and by all rights I should call it quits between us. Both my pride and my principles demand no less. However, although I make no guarantees that I will be able to forget what you've done, and though we both may carry the scars for life, I refuse to let it stand between us. I still want you for my friend.'


To accept forgiveness means to admit that you've done something unspeakable that needs to be forgiven, and thus both parties must swallow the same thing: their pride.


This seems to explain what Jesus means when he says to God, 'Forgive us our trespasses as we forgive those who trespass against us.' Jesus is NOT saying that God's forgiveness is conditional upon our forgiving others. In the first place, forgiveness that's conditional isn't really forgiveness at all, just Fair Warning; and in the second place, our unforgivingness is among those things about us which we need to have God forgive us the most. What Jesus is apparently saying is that the pride which keeps us from forgiving is the same pride which keeps us from accepting forgiveness, and will God please help us do something about it.


When someone you've wronged forgives you, you're spared the dull self-diminishing throb of a guilty conscience.


When you forgive somebody who has wronged you, you're spared the dismal corrosion of bitterness and wounded pride.


For both parties, forgiveness means the freedom again to be at peace inside their own skins and to be glad in each other's presence.


HERE'S THE KICKER: YOU CAN FORGIVE PREEMPTIVELY


After all, Christ died for your forgiveness 2000 years ago. You were forgiven before you existed (again repentance / accepting forgiveness is another matter). There is no reason we cannot forgive others in advance of their sinning against us.

Let me clue you in on something: Between now and the end of the year someone is going to hurt you. But you don't have to wait to be hurt to forgive. In fact, preemptive forgiveness is like the ounce of prevention that is better than a pound of cure. Preemptive forgiveness is easier and it lessons the eventual pain that is coming.

Here is what it looks like: As I head into a situation involving others, I pray, "For what you are about to do or say to me, I forgive you."

"I forgive you"

"I forgive you"

We are created to give. We are created to extend grace. We are created to forgive. When we don't give, we don't extend grace and we don't extend forgiveness, we lose an essential part of our humanity.

So give yourself the gift of further wholeness this Christmas - forgive. Now. Before someone harms you. Before it's too late.

As I am learning, this lesson of preemptive forgiveness is crucial in the disabled community.

One last thought to come . . . .

"What I don't like about office Christmas parties is looking for a job the next day" 

 - Phyllis Diller

http://youtu.be/G0k3kHtyoqc

"My doctor says that I have a malformed public-duty gland and a natural deficiency in moral fiber, and that I am therefore excused from saving Universes." 

 - Douglas Adams

The truth is, what we call interruptions are precisely our real life, the life God is sending us day by day

- CS Lewis

The wife received a gift certificate to The Prado from the boss-man so we decided to treat ourselves to a nice, relaxing lunch after church this past Sunday. Annie had other plans . . . She went absolutely WIGGY. Complaining and crying and fussing.

 We are the type of folks that do not allow the wee one to ruin other people's meals when we are out and about. Annie took it right up to a half-step away from the point at which one of us would have taken her outside - and there she stayed.

 Annie's mood did turn around however but she just shifted to the other end of crazy and started squealing and laughing and hollering. It was every bit as disruptive. I turned to the wife and said, "I think I can actually feel her sucking the energy from my body".

 Long about dessert, Annie quieted down and the wife and I looked at each other shaking our heads in amazement. We felt like we had just been through a hurricane.

 A Velvet Hurricane

Background post here.

So we MUST give of our time, our talents and our treasure. We MUST give to our house of worship. We MUST give to the poor we meet in the day-to-day, we MUST give according to our calling and we MUST become agents of patience and grace in an increasingly impatient and graceless world. We MUST do this not because others have a need, but because WE have a need. We don't breathe air because air needs to be breathed - we breathe because to not breathe means death. Similarly, we give because we are built to give - we become more fully human when we give. And that led us to the discussion of forgiveness . . .

We are called to extend forgiveness - every day - all the time.

The traditional dogmatic view of forgiveness is this:

1) You do something you shouldn't and so the relationship is broken
2) You must go to God and ask for forgiveness
3) Once you have asked for forgiveness, God will extend it. Otherwise, you stay in a state of unforgiveness

This is lousy theology.

"He is patient, not wanting anyone to perish, but everyone to come to repentance" - 2 Peter 3:9b

"But God demonstrates his own love for us in this: While we were still sinners, Christ died for us" - Romans 5:8

"Father forgive them for they know not what they are doing" - Luke 23:34

"Here I am! I stand at the door and knock. If anyone hears my voice and opens the door, I will come in and eat with him, and he with me" - Revelations 3:20

In the biblical story, man does not "go" to God. God creates man. God COMES to Abraham. God COMES to Moses, and so on. Jesus CAME to us. God does not want ANYONE to perish - so much so that he died for us BEFORE we ever repented. Jesus on the cross begged for forgiveness for a people who did not even know they were sinning and so were incapable of repentance. We do not go to heaven and bang on the gates, rather God comes to OUR door and begs to be let in.

Everyone is forgiven. Everyone. Already. You are forgiven. That person who wronged you? Already forgiven. That person in the news headlines? ALREADY forgiven. EVERYONE IS ALREADY FORGIVEN. Repentance has nothing to do with being forgiven. Now receiving forgiveness, that is another matter.

God's forgiveness is radiating throughout creation, all the time and to everyone - like a radio station. But if you want to receive the signal of forgiveness, you have to tune it in. Repentance does that. That's the topic for another post.

We are talking about our NEED to give the way the creator gives - because we are made in his image. To be fully human, we NEED to give of our time, talents and treasure. We MUST be fountains of patience and grace for that is how we are knit together.

IF all this is true, then we MUST be constant fountains of forgiveness, for that is how we are made. You cannot become fully human until you GIVE - talent, treasure, time, patience, grace and FORGIVENESS.

But here is the kicker - just like our creator - we are called to forgive even when others do not repent. We MUST give forgiveness to those who are not sorry for what they have done . . . . (Father forgive them for they know not what they do)

And then the discussion got fun . . . .

To be continued . . .

I have been having some new thoughts on forgiveness. I am coming from a Christian context but I think the topic is universal regardless of your faith or lack thereof so I thought I would put it out there.

First of all, I should explain how I got to this point (this isn't necessary to know but possibly helpful to fully understand where I am coming from).

I help to facilitate an adult discussion group at my church and for the past few months, we have been discussing the topic of giving. The way it works is I, and the person I facilitate with, frame a topic, the group starts to run with it and we see where it leads. So on the topic of giving, we started with the simplest, most mundane type of giving and tried to move the topic towards more complex and spiritual forms over the months that we discussed.

Here are the bullet points:

1) We need to give. We are created to be givers. When we don't give, we lose a part of our humanity. Giving is part of our spiritual DNA. We must give - not because others need our help but because WE NEED to give to become fully human.

2) We should all be giving something to our house of worship and be trying to figure out a way to give more

3) We should all be prepared to give to the poor whom we encounter on the street in our day-to-day lives and be trying to figure out a way to give more (for me, this takes the shape of having a gift card to a grocery store or McD's in my wallet that I can hand out as well as trying to take the time to acknowledge the person's humanity, spend time, treat them as the equal that they are)

4) We should be giving to the poor through organizations as well as following our calling to give through organizations (secular and sacred) that energize us (past blog post here) and trying to figure out how to give more

5) We should give of our time

A) Voluntarily (house of worship, the poor, organization of your choice etc)

B) Involuntarily in the now (these are the constant interruptions, the unplanned demands of others, the person that takes your turn in traffic, the person in the checkout lane with 47 coupons)

C) Involuntarily in the not yet (people and situations who are not changing according to our timetable, the relative with an addiction, the friend in a corrosive relationship etc)

This involuntary giving of time in the now and the not yet led us to the discussion of Grace. We are called to be fountains of grace in a fallen world. To constantly extend grace - constantly spread grace. A good but incomplete synonym for grace is "patience". So much of our impatience comes from defending the "rights" of our egos. "How DARE you merge in front of ME!!!" etc.

We are called to lay aside our egos - to extend patience, to extend grace, constantly, all the time - not because the world needs it but because WE need to extend it. We are created to give grace. We are made in the image of our creator and the farther away from that image, the more of our true humanity we lose. Our creator is a giver of grace and so must we be - not because we "should" but because we "must". Our giving of grace to those around us brings us life. Giving grace to others resurrects us.

So we are built to be givers: of our treasure, of our time (voluntary and involuntary) and of grace. We regain our humanity when we do this.

That led us to the discussion of forgiveness . . .

To be continued . . .

Two medical issue updates:

First:

So I took Annie in for her 6 month eye exam and the doc turned to me and said, "She has your eyes, dad". Which I have heard before (the wife is always saying she has my eye color). "Oh, thanks, doc", I replied. "No", he said, "She needs glasses". Turns out everything Annie sees, near and far, is blurry. This is no surprise. Everyone in both mine and my wife's family wears glasses . . . almost . . . Kiddos with SB are more prone to vision problems as well so it was only a matter of time.

I called the wife and let her know. She took it hard. Which is surprising since my wife has been an optician for 12+ years. Which just goes to show how unpredictable the emotions of a special needs parent can be. But the wife rallied and put out a world-wide call to her industry buddies.

As it turns out, a dear friend of ours is currently a sales rep for Swissflex, who makes one of the most highly regarded lines of kids glasses on the market. He was going to be in town last week and he would love to come over to the house for lunch (and bring his sample trays). So Annie had a private fitting with an eye wear rep to try out some new specs.

Here are a few that we tried (Annie is staring off in the same direction b/c we bribed her with a video while we tried on glasses):

#1


#2

#3

#4

#5

I left it to the wife to decide but my only request was subtlety. I just think Annie has such a beautiful face and I don't want it hiding behind a pair of specs that "make a statement". Not yet, anyway. Which is your favorite? 

The Second Update: This is the really tough one . . . .

We are positive Annie is left-handed . . . Oh the HUMANITY!
 

I could be wrong but I think this may be the first time Annie has ever intentionally smiled at a camera . . .

I have driven passed Ronald McDonald Houses my whole life and never really understood them until our Annie came along.

In case you don't know, the goal of Ronald McDonald Houses is to provide a home-away-from-home for families whose children are hospitalized. Can you imagine if you had to drive 2 hours or more to the nearest hospital where your child was hospitalized? Many families simply don't have the resources to rent hotel rooms for weeks at a time. That's where RMH's come in.

We got a chance to tour the RMH at Rady Children's Hospital recently when our pediatrician held a Christmas bash for all his "special needs" patients. It. Was. Awesome!

Our photos won't do RMH justice so you should just take a moment and visit their website. RMH's are largely funded through the sale of McDonald's Happy Meals.

Here are some random pics from the Christmas party at RMH:

Annie with Dr. Pickering - one of the world's greatest pediatricians:


Annie saw this fountain with a mirror behind it and her eyes lit up:










Annie got to visit Santa and the photographer burned all Annie's photos to a disc for us for free!:




Then Annie got to go into a room that was piled 4-feet high on all sides with toys. She picked out a Cookie Monster:






There was a band, cookies and punch and all around good vibes every where. Naturally, Ronald himself showed up and treated everyone to a few magic tricks. Annie had a blast!

But back to that Happy Meal . . . now that I understand what an AMAZING service RMH provides I am far more likely to hit a drive through and order a Happy Meal for myself (on the few times I go to a McD's) instead of a mongo-burger meal. I figure I am getting my McD's fix, I am eating a smaller helping and I am helping out a worthy cause.

So make your next meal a Happy one. Somewhere the family of a sick child will thank you.


http://youtu.be/QlBha7AKGt4

http://youtu.be/d9H9Fi4Qcus

Ornaments are a big deal in our house. Our very first Christmas, the wife gave me a snowman ornament and every year since then we have exchanged one ornament a year. Naturally, we are passing the tradition on to Annie so she has amassed 6 ornaments of her own. After 20 Christmases we are getting very near the point where there isn't a single ornament on our tree that does not evoke a year, a place and a memory.

Here is Annie in the act of scuffing a 23-year-old ornament that has survived since my pre-marital days without a scratch. I'm fine with it. REALLY (grrrrrrrrrr).


This year's ornaments wrapped and under the tree:


Annie checking out past years' ornaments:


First, Annie's turn:


Then Mommy:


Then Daddy:


Daddy's 2011 ornament to Mommy: A bedazzled Starfish:


Mommy's 2011 ornament to Annie: A bird in a bedazzled wire birdcage:


Daddy's 2011 Ornament to Annie: A beach in a globe (sand and shells):


Mommy's 2011 ornament to Daddy: A blown glass seashell:


Possibly one of the greatest traditions ever!

"Courage is the discovery that you may not win, and trying when you know you can lose."

- Tom Krause

This Christmas marks me and the wife's 20th Christmas together. When you are first married, Christmas is a funny time. Her family's traditions collide with your family traditions (not to mention those wierd short-lived traditions you started during your single years).

Well, the wife and I have now spent more Christmases together than we have our birth families and we have gotten the whole tree-thing down to a science (if I do say so myself).

First, we head to the same tree lot every year - 5 minutes from our house. We gaze in mystification at the flocked trees . . .


Then it's once around the lot, pick a tree and we are otta there. We don't rush it but it never seems to take us more than 15 minutes or so. This year we had a scare - we didn't find a tree to our liking and the dreaded specter of going to a second lot threatened to unravel a tradition - but lo, there she was - in the way back corner. We left Annie to watch it while daddy ponied up the cash.


The obligatory family photo in front of our catch:


Then heave-ho and tie-er-down:


Stand 'er up, run the power cord up the trunk and dad's job is done:


And makes it beautiful:

"Women marry men hoping they will change. Men marry women hoping they will not. So each is inevitably disappointed."

- Albert Einstein

Much of the work of midlife is learning to tell the difference between people who are still dealing with their issues through you and those who are really dealing with you as you really are.

- Richard Rohr in Falling Upward

Most people do not see things as they are; rather, they see things as they are.

- Richard Rohr in Falling Upward

"Two things are infinite: the universe and human stupidity; and I'm not sure about the the universe." 

- Albert Einstein

"I am ready to meet my Maker. Whether my Maker is prepared for the ordeal of meeting me is another matter." 

- Winston Churchill

http://youtu.be/Ci-eQUfvQ8I

by Jacqueline Berger

I like a green olive
stuffed with a pimento
after it has been submerged
for some time in a martini.
I like to go downtown with my husband,
sit in a booth at the Grand
and let the drink rub the edge
off the inane fight we had
about the furniture salesman
and whether he treated us fairly,
my view, or whether he tried
to put one over on us,
my husband's view.
In some moods we'll fight about anything
just to make the other
carry the weight of anger
we lug all day through our lives.
But that moment
when we climb into bed
on a winter's night,
letting our bodies lie down,
letting the day be over,
its not unlike the way gin
loosens the rope, lets float
the raft into its stillest waters.
Happy hour, when the landscape
loses its daylight meaning
as it slips into the silk of dusk
before night pours down its jazzy notes
in a cathedral of crushed velvet.
We are sitting side by side in the booth,
watching the flurry of holiday shoppers
come in from the cold.
By now the salesman is a jerk,
or he's a helluva guy,
either way is fine.
We are talking about anything,
having drifted out into the calm
plainness of intimacy. Nothing
profound, just a place to rest
at the end of the day,
the cord between us swinging gently
after the bells have stopped their ringing.

by Luci Shaw

A forty-eight hour fall with more to come.
Our life suspended. The flakes, heavy and

discrete, rise on roof and rail to loaves of snow.
The generous sky breeds a pearly light

with no shadow. We up the heat against
the forecast's drop. Voices on the phone agree,

It's beautifully dangerous. Stay home.
Somewhere the repeated, muted sound—

a shovel shifting from a sidewalk
its soft, square load.