Bloghardt's Reflector

Here's the "pretty princess" at school and having a blast!  She's handling school just perfectly and very excited about the whole experience.

I've received some emails asking me what's going on with Sophia. 

It seems like a perfect time to describe her and her little life.  She's three years old and was diagnosed with a genetic disorder called partial trisomy 9q, partial monosomy 21q.  This means that part of her 9th chromosome copied itself on the button of the 21st chromosome after a small deletion occurred on 21st chromosome.  It happened at the very beginning of her life and every cell in her body has this same "disorder."  Sound complicated?  Yeah, it is!  Sounds rare?  We've heard of one other case in Switzerland, but it's difficult to tell whether this is exactly the same genetic "disorder" without further study of which parts of Sophia's chromosome were copied and which parts were deleted.

We knew nothing about Sophia's stuff until after she was born.  I was at Making Waves with my soon-to-be-called "uber-Lutherans".  Amy was still a month from the due date.  We had worked out plans in the event of an emergency - little did we know we'd use them!  I flew home after Sophia's birth, who spent a little while in ICU.  She was baptized by my senior pastor with a little syringe - water and the Name of God!

She stayed a month in NicU in the Woodlands, TX.  There were ups and downs.  There were days we would leave full of hope.  There were days I'd drive home preparing my daughter's funeral sermon in my brain. How do pastors comfort themselves?  The Word!  When all else is ripped away from you, there is only the Cross of Christ.  The same Word that I would tell to others to comfort them was true for my Sophia, for her mother, for her brothers, and even her father.

The "disorder" bomb came the happy day when she was supposed to be released from the hospital.  What was supposed to be this joyful and perfect day of taking our daughter home from the hospital, turned as they told us of this "funny" thing on her twenty-first chromosome.  Further testing required in Houston at the medical center.

Which we discovered was this very rare genetic "disorder."  I say "disorder" in quotes because there is nothing "disorder"-ed about Sophia.  The Lord put her together the way He thought best to put her together.  There are no accidents, not for those who have been baptized. 

Those who want to protect God from doing "bad" things need to hear that "sickness is caused by our sin."  Yes, sickness entered the world by Adam's sin.  When we get sick, there are no "woopses" with God.  Jesus doesn't take time off being our Savior to allow bad things to happen to us.  Nothing happens to those who bear His name apart from the care of a Heavenly Father who didn't spare His only begotten Son in winning our salvation.  That counts for Sophia.  That counts for you too.

So, Sophia's parents were sitting in Houston listening to horrific things about their daughter.  She's going to be a vegetable, "if" she lives a few years.  Will she walk?  Maybe, but she's probably crippled.  Will she talk?  Possible, maybe not.  Will she have kids?  No, why would she want to pass this... this cur.. this "disorder" to her kids? 

"It's not your fault.  These things just happen."  I remember looking down at my black Dockers and reaching the point where I had enough.  I had come from church for this meeting, so I was in my clerical.  I looked up at this nurse, a lapsed LCMS Lutheran, and realized that my wife couldn't take any more. 

"Thank you," I said, "These things do not just happen." And mustering my best smile, "That's not what you learned in catechism either."   And as we left, my wife and I began our own personal idolatry.  Yes, idolatry.  There's a certain idolatry that parents have.  We picture our kids growing up and being perfect.  The idolatry is not simply that we put our view of our kids on them but that we think that have some sort of control over the things that will happen to them. 

It's far more crass than just having a positive attitude.  It's defiance.  Bloghardts excel.  So does my wife's family.  Sophia would be far greater than these people could figure out!  We'll make her better!  She will walk.  She will talk.  It's going to happen.  We'll make her 'normal.'  She'll be our perfect little girl.  You just watch and see."

Then the Law hit me:  "Isn't it a shame that Sophia didn't turn out the perfect little girl like I had planned her to be?"  Woops!  The way of "Buck up...  Believe more...  Make things change," is not the way of Faith.  It's the way of unbelief.  It's despair.

Back to Holy Baptism.  Over and against our own idolatry and despair is the good news that was literally squirted on our daughter on day one of her life.  With a few drops of distilled water and our Lord's name, she was baptized.  That defines who she is.  That is the final word on her.  Whatever else is true pales in comparison to the true fact that everything happens for the good of those who bear the name of Christ.

Sophia doesn't have to get any more perfect.  She's just fine in Christ.  That's what faith says.  This is not some faithless acceptance of an uncontrollable situation or false comfort like, "at least she is alive, she could be far worse."  Nor is this some sort of "fantasy" land where her parents deny the reality of her situation.  No, Sophia's parents know exactly what's up with her "disorder."  But, more than that, her Heavenly Father knows what's up with her.   He's washed her sins away and she's just peachy-keen-perfect. 

Let me repeat that:  In Christ, Sophia is absolutely perfect.  His view of perfection far exceeds anything that we could ever come up with on our own. No imposing our view of perfection on Him.  He does the perfecting.  He does the saving.  His Words, not our definitions.  His salvation, not mine.  Jesus wouldn't have Sophia any other way.  He's tinkled pink about her.  Her baptism says that.  Faith says that.  Faith clings to His promises and expects only good from God - only good - even in suffering, even in sickness, and especially in death.

So, no talking about what Sophia does and doesn't do.  Not today.  No talk about her defying doctors.  Maybe the next time I pause to reflect on Sophia, we can rejoice in those things.  But, to put that in today's reflection would detract from the Gospel.    Today is about true perfection in Christ - which transcends all our definitions and is located in the waters of our Baptism.

Find your beauty, health, and perfection in cross of Christ alone and you'll find where true beauty, true health, and true perfection are.  They were won for you on the cross and splashed, sprinkled, or like Sophia trickled down your forehead in Holy Baptism.  In the name of Jesus. Amen.