While discussing Joel’s birth plan with our doctors, when we were still in the preparing-for-any-possibility stage, at one point I confidently said something of this nature, “Whether Joel is born alive or whether he passes before birth is of little consequence to me.  We know that the outcome is likely to be the same, regardless of when he passes.”

Since the moment we learned that he would indeed be born dead rather than alive, I’ve recalled this conversation quite often with a great degree of shock that these words ever came out of my mouth.  (I should say born ‘still,’ as it’s much more discreet and much less unpleasant.  But in the context of this thought, born dead just seems more truthful.  “Alive” and “dead” are opposites.  “Alive” and “still” are not.  But I digress.)  It was a statement made in ignorance, and once I was in labor, preparing to deliver our lifeless baby, I regretted it.  It was now of great consequence to me.  How much harder it was to labor knowing that Joel was already gone and that there would be only a horrible, deafening silence in the room when his body was delivered into the world.

In the context of planning his birth, my assertion had made sense.  I was reiterating my strong desire for a natural delivery, stating that I didn’t want to plan a C-section in order to be sure that Joel wouldn’t pass during labor, and I also wouldn’t want to do an emergency C-section if Joel’s heart-rate dropped during labor, etc.  I’ve read quite a few blogs of parents in similar situations, and many couples have made the opposite decision, for a variety of reasons.  It was very important for them to hold their baby alive, and they were willing to undergo major surgery to make this possible.  I’ve also learned, for example, that for many Catholic families, having their baby born alive in order to be baptized is essential.  But since that rite isn’t part of our religious belief or practice, our decision was made more for pragmatic reasons.

“Pragmatic” sounds and feels quite emotionally detached, and couples who’ve chosen otherwise might think we were heartless, unfeeling, and selfish to not want to take every possible measure to give our baby a chance to be born alive.  This debate would segue perfectly into a post I have drafted entitled ‘Trisomy Ethics.’  I had hoped to discuss this topic on the blog prior to Joel’s birth, mostly for the benefit of interacting with other trisomy parents with whom we’ve connected in the blogosphere and put into words the perspective we’ve developed as a result of this journey.  But that’s not the point of this post, which is coming – I promise – in another paragraph, or two, or three!

Call me selfish, but I’ve been through one C-section, and the recovery was 100x more difficult than recovering from a natural delivery.  I wasn’t eager to repeat it.  We’ve also paid for one C-section, and the costs were 2-3x more exorbitant than the costs of a natural delivery.  We weren’t eager to repeat that either.  (Ruefully speaking, we’ve now also paid for one VBAC induction of a stillborn, breech baby, and the costs were significantly greater than the costs of our C-section… go figure!  But the burden is actually far less for us this time, which is also another post for another day.)  For us, the risks of major surgery and the financial burden both needed to be factored into the equation, since we had five other children to come home to after all was said and done.  As much as I knew I would rather hold Joel alive and have him pass on to heaven in our arms, I knew in my heart the risks were greater than the potential benefit.  The physical and expected-financial price we’d have to pay for possibly a few seconds, minutes, or hours with him, if he even survived delivery, was too great to justify striving for that unknown.

As it turned out, this ‘choice’ we made in birth-planning ended up being one we would not have had to make.  It wasn’t a possibility we would have needed to prepare for.  We didn’t get to choose at all.  Joel was born still, and it was heart-wrenchingly difficult.  Which leads me back to the whole reason I started this post – to share a quote that been tremendously helpful to me throughout this journey.

Soon after Joel’s diagnosis, one of our neighbors, Melissa, posted the following quote on Facebook:

Plain and simple: trials expose unbelief and promote real belief…God intentionally tests us through various forms of resistance to establish our belief and integrity. Through the process we learn He is the One who sets the terms for our discipleship, not us. – Denton

I still have no idea who Denton is, and I only yesterday told Melissa just how much this thought has ministered to me, but that last phrase has been on replay in my mind regularly since I first read it.  HE is the One who sets the terms for our discipleship, not us. 

It’s obvious to see how the big-picture of our journey with Trisomy 13 makes this quote so applicable to our lives. God has allowed us to carry an unwell baby and deliver him stillborn to expose our unbelief and promote real belief… to establish our belief and integrity.  It’s one of the terms he’s set for our discipleship.  But the times that God, through His Holy Spirit, has whispered this truth into my heart most meaningfully have been in the smallest details of life, both related to Joel and otherwise.

Born dead or alive?  I don’t get to choose.  HE is the One who sets the terms for my discipleship.  Cephalic or breech?  I don’t get to choose.  HE is the One who sets the terms for my discipleship.  The day of his birth?  The time of day?  The doctors and nurses on duty?  The attitudes and responses of all with whom we’ve interacted throughout the journey, both positive and negative?  I don’t get to choose.  HE is the One who sets the terms for my discipleship.

The dog chews one of the kids’ sneakers?  The 2-year-old has a potty-training accident?  I’m interrupted 30 times in 30 minutes while balancing the checkbooks?  I don’t get to choose!  GOD is the One setting the terms for my discipleship.

For my DISCIPLESHIP!  How HOPEFUL is this?!  To think that each of the experiences we face, whether good or bad, easy or hard, comfortable or painful, welcome or unwelcome, is a part of a tailor-made discipleship course, crafted by God, the very Maker and Sustainer of the universe, the same God who gives us every breath we breathe, just for us.  Individualized just for ME… because He loves me and wants me to become more like Him.  What a refreshing thought!

This is certainly not a new concept.  It been expressed by countless Christ-followers, worded in as many ways, since His time on earth.  But this succinct little quote came at an important moment in my own journey and has reminded me so many times:  it’s ALL for my discipleship… for my GOOD.  Scrubbing seven pairs of muddy sneakers after a long warm-Sunday-afternoon hike?  Enjoying a breathtaking sunrise?  Wiping up yet another spill?  Enjoying snuggles at bedtime?  Responding to a sassy attitude?  Receiving an encouraging card/text/e-mail?  Being overlooked or ignored?  Why would I resist my involuntary enrollment in this course?  Rather, I should embrace and be thankful for all these circumstances that are providing opportunities to become a true follower of Him.

What trials are you currently facing?  And how is God using them to disciple you?  Feel free to comment here or reach me privately at jeffandgwenyth@gmail.com.  It would be a privilege to pray for you!