Hope......

So....2 weeks later....

Life has continued all around me, as I've felt in a bubble.  But I've come out the other side (for the moment) with resolve.  The following thought came to me yesterday...
"I've found hope where grief and grace collide".

As a writer, that is a well crafted phrase.  But beyond that, it is EXACTLY what has happened.  There is an intersection of grief and grace.  And in the cross-hairs of that intersection is hope. 
Hope is easily lost at the best of times, but in the death of a child, hope seems unrecoverable.  But yesterday...without warning...I found it....obvious....powerful....standing guard...waiting for me.  That's right...waiting for me. 

Interesting that the Bible speaks of "Faith, Hope, and Love", with the greatest of these, love.  The three dynamics are uniquely linked.  Sure.....over the course of this 2 week journey, I've had love and faith.  But grief is such a powerful emotion, that hope gets trumped by it.
I don't have much figured out.  I didn't have anything figured out 19 years ago when we began to navigate our life with Dylan. However, the lessons learned touched a world.....literally.  And so it begins again.

A couple at my church lost their 11 year old son in January. The mother contacted me yesterday to ask if I could get together with her husband, as he is having a difficult time reconciling this loss. So again, I'm called upon to "comfort those who suffer with the comfort I've been given".  Seems never ending.  And as always, I feel inadequate in the task.  But it's not up to me......

Faith, Hope, Love....they're all abiding in this old bag of bones.

God's a great, big, God...and He's really, really nice......

The Cat and Cards...

They say a cat has nine lives.  Well.....if I were a cat, I'm on #8.  This new life is as unordered as the previous 7 were.  I didn't choose the cards....they were dealt.  Played 7 games (lives) and it isn't until the game is over that you realize what a good hand you had.


5 of the 7 games (lives) ended in what was perceived as a loss.  But the cards were good....just not what I would have picked.  And....in some sort of self-congratulatory way, I think I played them well.  


So my 8th game.....I can no longer bluff.  I no longer have a poker face.  The cards I've been dealt are seen clearly on my face.  But.....I will win this game.  I'm a seasoned player now...


After this.....one game is left....one life.....but now I sort of feel like I have a young 19 year old boy looking over my shoulder, reminding me of lessons learned in Game 7.

The house is too quiet.  Quiet seems to be what I notice.  Someone sent me a note to say that when God called Dylan home, He whispered it so only Dylan could hear.  Game 8 is very quiet...

A Hole in My Heart

Just don’t know what to write.  It’s week one…an anniversary of sorts….1 week minus a child. My mind plays the Technicolor movie of walking into Dylan’s room to find him dead.  Most other memories are good ones, but that one is far too vivid.  And my guess is that it will never turn to black and white.  Each morning I awake with that film being run.

The odd thing about a tragedy like this, and the process, is that the one who experiences the deepest grief seems to be called upon to provide the greatest comfort.  I have held so many who have cried….providing them all words of comfort, while all the time myself, screaming inside, “Doesn’t anyone understand that this is excruciating to me”?

Auto-pilot….that’s what life is.  God?  Sure….He’s around.  But when you’re numb, you’re numb.

I was with all my remaining children for the funeral.  But I hate the term “remaining children”.  The thing is….Dylan is my child…not my ex-child.  I have 4 children.  1 of them has passed away.  My kids were/are healing.

I miss Dylan…his smile, his giggle, but I miss his smell….the feel of his body….to touch…..how he impacted my senses. 

I am lonely. There is a hole in my heart.  Many well meaning Christians will say, “Oh…God will fill that hole”.  That’s not true.  That hole is not fill-able.  The challenge is to life with the hole.  The hole isn’t meant to heal…it’s meant to be a part of the future.

If you have kids….do more…..

His Love is Better than Whine

I know, I know…I can hear many of you saying to yourselves, “That’s “w-i-n-e, not whine”.  Well, perhaps it’s both.  But I’d like to speak to the first spelling. 

By a show of hands, (you’re not really raising your hands now, are you?) how many of you have something to complain about?  Come on, you over there at your desk, why aren’t you raising your hand?  You know that lower back pain you’ve had for a few years now?  Go ahead, whine.  How ‘bout you over there with your car in desperate need of some over needed work?  Whine away.  And what about you?  (You know who you are!)  You have been losing your temper more and more these days, and, well, everybody’s acting so stupid around you, you have every right to…go ahead…whine away.  (How many of you fit all three examples?)

Here’s some non-news.  The little things will always change.  Car troubles, mounting bills, age related back pain, weight related back pain.  (Double ouch!), intellectually challenged people all around…always will be in a state of flux.  But here’s more non-news…The Big things will never change.  God’s love, God’s mercy, God’s grace.  Rocket science?  Hardly.  Just a friendly reminder.

I feel that I have a lot to complain about.  Even my hair hurts.  The past 5 years,  I’ve been in and out of doctor’s offices and hospitals with 3 heart operations.  I have 2 wonderful children still at home; the youngest is a chronic care child.  He’s perpetual energy and movement.  He requires constant observation, and is SOOOOOO strong, that I, more times than not, find myself sitting on the floor, having lost in the collision that was him and me!  A lady once told me her definition of parenthood.  She said it could be summed up in four words.  “You’re always wiping something”.  Well with Dylan, that is even more so.  I travel ALL the time.  Each year the print gets smaller.   Did I mention that my hair hurts?  All my trousers are shrinking!  Shirts too.  Have I mentioned my hair?

About 15 years ago I heard then 700 Club co-host Ben Kinchlow speak in Toronto, Canada.  He talked about perspective, and our problem with problems.  He took a dime out of his pocket.  He told us to close one eye.  Then he said to hold the dime at arms length up to the sky.  He said that the dime represented our troubles, the things that we complain about.  The size of the dime in comparison to the vastness of the sky is really the way our problems should look to us who believe in the scandalous grace of Jesus.  However, he said that most of us pull the dime right up against our one open eye.  As we do, it becomes the only thing we can see.  I now ALWAYS carry a dime around with me.

What’s your “dime”?  Is it finances?  Cancer?  Heart problems?  Job?  Spouse? Hurting hair?  Hold it at arms length against the vastness of who God is. 

Many years ago Stuart Hamblen wrote a gospel song called “How Big is God”.  The chorus said this:

How big is God, how big and wide His vast domain

To try to tell these lips can only start

He's big enough to rule His mighty universe

Yet small enough to live within my heart.

Believe me, His love is better than whine!  Ten cents says I can prove it!

God Lives in the T.V. Room

I envy Dylan. My son Dylan thinks God lives in the T.V. room.  Or so it seems as I watched him play and laugh with the “invisible” friend in the T.V. room.

I giggled softly and tiptoed off to my own room.  Dylan's unique perspectives are often a source of amusement.  But that night something else lingered long after the humor.  I realized yet again the very different world Dylan lives in.

He was born 20 years ago, mentally disabled as a result of a duplicate gene in Chromosome #1.  Apart from his size, there are few ways in which he is a young adult.

He reasons and communicates with the capabilities of a 1-year-old, and he always will. He will probably always believe that God lives in the T.V. room;

that Santa Claus is the one who fills the space under our tree every Christmas and that airplanes stay up in the sky because angels carry them.

I often wonder if Dylan realizes he is different.

Is he ever dissatisfied with his monotonous life?

Up before dawn each day, off to school, home to eat snacks, dinner, and the hectic activity of his family, and later to bed.

He never seems dissatisfied.

He lopes out to the SUV every morning at 7:35, eager for a day of simple schoolwork.

He wrings his hands excitedly while the water boils on the stove before dinner…it may be “the same ol’ thing”, but pasta’s just as enchanting for Dylan as if it were the first time.

And so goes his world of daily rituals.

He doesn't know what it means to be discontent.

He doesn’t cry.

His life is simple.

He will never know the entanglements of wealth or power, and he does not care what brand of clothing he wears or what kind of food he eats.  His needs have always been met, and he never worries that one day they may not be.  He’s never learned how to doubt!  That’s right…doubt is a learned behavior.  Probably based on expectation.  But all Dylan knows is that if he’s hungry, his father feeds him…if he’s cold…his father clothes him…if he needs anything at all, His father is right there to make sure his needs are attended to.

His hands are diligent.  Dylan is never as happy as when he is working.  When he drops marbles into a bucket, or plays with a skipping rope, his heart is completely in it.

He does not shrink from a job when it is begun, and he does not leave a job until it is finished.  But when his tasks are done, Dylan knows how to relax.

He is not obsessed with his work or the work of others.  His heart is pure.  I imagine he believes everyone tells the truth, promises must be kept, and when you are wrong, you apologize instead of argue.  I believe he’s never sinned.

Free from pride and unconcerned with appearances, Dylan is not afraid to cry when he is hurt, angry or sorry.  He is always transparent, always sincere.  And I believe he trusts God.

Not confined by intellectual reasoning, when he comes to God, he comes as a child.  Dylan seems to know God – to really be friends with Him in a way that is difficult for an "educated" person to grasp.

God seems like He’s Dylan’s closest companion.

In my moments of doubt and frustrations with my faith, I envy the security Dylan has in his simple faith.

It is then that I am most willing to admit that he has some divine knowledge that rises above my mortal questions.

It is then I realize that perhaps he is not the one with the handicap.  I am.  My obligations, my fears, my pride, and my circumstances - they all become disabilities when I do not trust.

Who knows if Dylan comprehends things I can never learn?  After all, he has spent his whole life in that kind of innocence, maybe praying in the dark and soaking up the goodness and love of God.  And one day when the mysteries of heaven are opened and we are all amazed at how close God really is, I will realize that God heard the simple communication of a boy who believed that God lived in the T.V. room.  But Dylan won't be surprised at all!!!!

He hasn’t a voice…at least not with words.  But I have become his voice.  His impact on this world has been profound, if only served by the fact that I’m his father, and he’s my son. 

Let me use this example that struck me after I heard the news of Dylan’s diagnosis:  It’s like we had airline tickets to Paris….you know…the trip of a lifetime….returning to the city we loved so much…familiar…and the great anticipation of “doing Paris” one more time.  But when we’re landing, the pilot comes over the speakers, and says, “Ladies and gentlemen, in about 15 minutes we’ll be landing in Amsterdam”.  I become agitated and indignant, and say out loud, “What? Amsterdam?  We didn’t buy tickets to Amsterdam!  We are going to Paris.  This is totally unacceptable!  I didn’t pay for a trip to Amsterdam, I paid for a trip to Paris”!  We land, and disembark, and I’m livid…and heartbroken….we had planned for months for this trip.  As we leave the airport, ALL I can think about is Paris, and my unbridled anger that we are NOT there.  Then, as we travel away from the airport, and begin to drive through the lush and beautiful countryside of Holland, I see the fields of tulips…the rosy cheeked children playing….the awe striking beauty of this unexpected destination.  I am resolved.  This place is beautiful.  It’s not what I paid for….not what I planned for….not what I wanted!  But it, too, was beautiful. Paris was NOT going to happen on this trip….we were blessed to be in Holland, and the beauty here was to be learned and appreciated.

It's Time to Post this Again.....

It's one of my faves.....so I'm posting it once again, and aiming to live it out even more:

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, “Who am I to be brilliant, gorgeous, talented, fabulous”? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

Marianne Williamson