Saturday, October 24, 2009

A Personal Story - A Dad Confronts Down syndrome

Not a judgment, but a job!
Reflections from the dad of a nine-year-old boy with Down syndrome
Daniel W. Martin, September, 2009

In January of 2000, our youngest son Gabe was born. Two days later, his pediatrician informed us that she believed he had Down syndrome, and that she had ordered a karyotype to confirm. I was stunned. I searched for other reasons for each of the traits our doctor had pointed out, willing myself to believe that there was some mistake, and that when the results came back it would all be over. Together with my wife Janine, I grieved and wept as we told ourselves it would be all right, though secretly we each suspected it would not be. I don’t know if I have ever sobbed as deeply and uncontrollably in my life, as I did the first time I actually said out loud, to a family member on the phone, “they think Gabe may have Down’s.”

An awful lot of that grief was for myself. As the reality settled in—confirmed by the blood test—I feared Janine and I would never get to live or travel alone together, ever again. I worried that we would be saddled with a perpetual invalid who would require our constant care and attention. I pitied (as I saw him then) the poor child with the “broken brain” in my arms, pleading with God that, if he never accomplished anything else, Gabe would at least be able to know he was loved.

I was also mightily angry with God. I suspected that somehow, this burden had come to us because I was being taught some lesson. . .not so much as a punishment for anything I had done or been, but that somehow Gabe’s misfortune was God’s way of breaking through to me on something (I never really was sure what). And I was outraged that God would hurt my baby in order to get to me.

In other words, I had no clue.

The nine-year-old Gabe I know today bears not the slightest resemblance to the invalid vegetable of my early, dark vision. Not only does he know he is loved, he expresses his own love with infectious enthusiasm. Just tonight, when I drove into the garage, Gabe met me at the car door, greeted me with a warm embrace, and then led me into the kitchen, shouting to the rest of the family “Hey guys! My Daddy’s home!”

Gabe is known and beloved throughout our circle of friends: at school, where he is included in a third-grade class with a teacher who specifically requested him; at church, where he probably knows more of the congregation than I do; and in our extended family, who adore him. I know of at least two or three young adults who have chosen to study some form of special education or therapy in college, at least in part due to their experience with Gabe. He has shattered stereotypes of mental disability for more people than I can name.

What of my anger at God? Well, at some point in my struggles, it occurred to me that maybe this wasn’t about me at all. I envisioned that there was a purpose for Gabe to fulfill—something that he couldn’t do if he were “normal.” I realized that God had offered me, not a judgment, but an assignment. My job was—and is—to prepare Gabe for his job. It lay to me only to accept the challenge and get to work. It dawned on me that really, this was no different than my responsibility with my “typical” kids. The specifics might vary, but the basic needs and roles were the same. As I internalized this truth, my anger abated.

I have learned a few lessons, though. I’ve become a more compassionate man than I ever was before. I’ve learned to look for the pain and struggle behind other parents’ issues, and I’ve reached out to some of them that I might never have connected with under “normal” circumstances. I’ve learned the vital importance of a network of friends who care enough to share the load. For me, that network has been our family and our church; for others it might be other groups, but I can say without reservation that parents who try to negotiate these waters alone are at a severe disadvantage.

I’d be lying if I said raising a child with Down syndrome—even a high-functioning child—is easy. It’s not. Come to think of it, though, raising any child is no walk in the park. All children, regardless of their abilities, also have their challenges, and they challenge their parents. Nevertheless, I have a richer family, and I am a better man, because of my son Gabe. I love that little rascal. My job’s far from done, but I can tell you that so far, it’s been a rewarding one.



Saturday, October 17, 2009

Talking with God . . . ???

After a post a few weeks ago that some might describe as cynical, I just had to share this tidbit (of which, by the way, I have no memory, nor do I choose to editorialize on it).  My Mom sent me a copy of the following meditation, which was published in the November 2, 1965 issue of the Gospel Herald, a Mennonite newsletter:

Out of the Mouth of Babes
by Ruth Martin

Our 2 1/2-year-old Danny just gave me a lesson I hope I shall never forget.  While I was cleaning up the breakfast dishes, he occupied himself with his toy telephone.

Trying to decide who to "talk to," he suddenly decided, "I better call Jesus."  The following conversation ensued:

  "Hello, Jesus.  Are you fine?"  (Pause)
  "Yes, I'm fine too."  (Longer pause)
  "OK, I will.  Bye-bye, Jesus.  See ya later."

The little receiver went down with its characteristic tinkle, and Danny went on about his business.

I stopped working, up to my elbows in suds.  "Father, help me to pray like that.  .  .  .As naturally as we exchange pleasantries on the phone, obviously more interested in His welfare, His wishes, than my own.  And let me teach my little ones as faithfully as you teach me, through them."

Mom tells me she always wondered what transpired on that phone and/or in my mind.  Wish I could tell you. . .

Friday, October 9, 2009

Of God and Time

I will preface this post by saying that from a point of discipleship, what I'm about to say is meaningless.  It's also a place where I have no problem if people disagree with me, as long as they are actually considering the foundation of their disagreement.  However, it's a point I've encountered in the middle of a variety of discussions on predestination, free will, and other such stuff, and I think it's a good example of people assuming a point as given without the proper consideration.

I refer to the relationship between God and time.

The conventional wisdom seems to be that time--the actual sequential experiencing of things, not merely our units for measuring it--is a part of creation that we experience, but that God himself exists outside of time.  Therefore, the notion of whether God foreordained something (say one person's belief or another's unbelief) is actually somewhat academic since God sees past, present, and future in some timeless sense whereby the very notions of past, present, and future don't actually apply to God's experience.  It's how at least some folks explain the paradox in Romans 8:29 where God predestined (implying choice) those whom he foreknew (implying awareness of another's choice).

There's really no biblical evidence I can think of that supports this notion, which derives largely (I have heard) from Plato who did believe the ideal God was immutable (that is, unchanging/unchangeable), impassible (that is, unaffected by outside forces, so nothing can influence him) and extra-temporal.  In contrast, though, the biblical account is full of instances of God interacting with his creation in ways that clearly show creation influencing the creator--for example Moses' arguments persuading God not to blow the Israelites to smithereens, or God's relenting from the disaster promised to Nineveh--and this in ways that rather clearly suggest that God intended or said one thing but as the circumstance unfolded he went a different way.  Such accounts make very little sense in the context of a timeless and immutable God.

But what if time, rather than being a created thing, is rather an element of God's nature itself?  Before you get all freaked out on me, let me clarify.  I'm not suggesting that time is divine, or that there is a divinity like  Father Time of legend.  Rather, what if God's nature is to experience an unfolding reality rather as we do, albeit on a much grander and longer scale?  God can still be eternal (existing from eternity past, will exist into eternity future) even if he experiences that eternity in an unfolding, progressive sense.  But if God actually knows a past, a present, and the possibility of a future just as we (after all, his image-bearers) do, it does put these questions in a completely different light.

For one thing, it makes the possibility of free will truly free.  The usual outside-of-time, sees-past-and-future-as-one construct really can't escape the notion that everything we do is in some sense predetermined (I would go so far as to say that I can't really see much room for a middle ground between absolute deterministic Calvinism on one hand and Open Theism on the other).  One cannot foreknow an outcome unless that outcome is fixed and therefore subject to knowledge, and no amount of multidimensional babble frees us from that trap.

But it also brings a whole new meaning to prophecy, as I implied before in my post on God's sovereignty.  By this I mean that when God foretells the future, he's doing so, not because he "knows what's going to happen" in any passive sense of the word, but rather because he has purposed that this is going to happen.  True future-telling prophecy, then, is merely the result of God tipping his hand about something he intends to accomplish; or what is far more likely, God decreeing what he has determined must be.  It is true, not because of God's omniscience, but because of his sovereign power.

What do you think?  How else would a notion of a timely God rather than a timeless one, impact your theology or world view?