Journal Entry #6: How Did We Get Here?

I’m overwhelmed with the fact that Reece knows Jesus.  He was just here with us and he knows Jesus.  This statement comes out of left field to start my post, but it is as good a place as any to start.  It’s beautiful and messed up all in one and it is just the hard fact–and the awesome fact–of him being in Heaven, all rolled into one discombobulated mess.  I read the Bible and attend Bible study to try to learn more about Him; Reece may be looking Him in the eye at this very moment.  The thought blows me away every day.  He was just here sitting on my couch.  He now knows so much more than I will ever know here on Earth.

Terry and I have not struggled much with “why” in any of this, but “how” is more the question.  Sure, we walked the daily walk with this and we can trace back to a year ago when it all seemingly began.  But how did we get here?  Reece passed away and there really isn’t much else to see other than what is left behind in his wake.  And there is a lot left behind, but to most people, it’s back to the norm.  It has to be that way and I knew it was coming.  I’m actually relieved that many people have moved forward, because now I can just sit in the rubble and pick at it for a while, uninterrupted.  Yep, that’s exactly what I need to be doing right now.  We had to live it and now, I feel entitled to just let it all sink in.  Sadly, I feel like I’ve earned it.  I cringe writing it that way, but I don’t care, that’s exactly how I feel.  And here is why, at least for a while, it has to be this way…

As I said, we wrestle with the “how”.  We were just doing our normal thing.  We had four and a half blissfully normal years with Reece.  Then, out of left field, he has this rare diagnosis and suddenly we are grappling in life-or-death circumstances with very little forewarning.  And now, Reece has passed away.  For all of the isolating months of fears, frustration, worry, and difficult life dynamics we now are released back into society to resume life.  It’s all just a little messed up to me.  Trust me, I’m doing my best to just sort of reintegrate and, for the most part, it’s going ok.  But inevitably, my mind wanders to hard places with Reece, and then–BAM–I may be physically in one place, but my heart, mind, and soul are in another.  I find myself mentally moving back into the hospital many times throughout the day.  Back to the BMT unit, the PICU, the morning rounds with twenty people standing outside the room trying to predict what Reece will do because no one–and I mean no one, not even the awesome and intelligent docs at the U of MN–can tell you what will actually happen or how exactly it should be handled.  And you’re just pining for the days when you can go home and let it all be a distant memory.  You’re missing the days when you woke up and had the luxury of deciding what to do with your day and the days when you were the only two people making decisions on behalf of your child.  You’re cringing when they read off the digits of your child’s birthday like they are a social security number versus acknowledging it as the day that you blissfully became parents of your baby boy.  You’re jumping off your chair to silence machine beeps and watching your child endure pokes and procedures with no end in sight.  There are no promises of suckers or stickers when it’s all over; you end up just looking in his eyes and saying, “We have to do this, because we have no choice, and I’m so sorry.”  And you’re thinking about six months prior when a tough day with your child was a few tears shed over a flu shot.  The only thought that is running through your mind other than, “I hate this,” is, “How did we get here?!”

Part of reason for mentally going back stems from knowing we are discussing his autopsy next week.  The other part stems from the entirely messed up situation of watching your child go through prolonged suffering and then trying to be a normal person again.  The whole BMT process was so abruptly tactical.   These memories that I revisit are so mentally difficult that instead of fearing the option of a child dying, you realize how merciful God is in taking him to Heaven and how wonderful it will be, versus staying another moment here.  I know there are kids that do make it out of BMT and do go on to live fairly regular lives.  We are not one of those families.  Sometimes when I talk to people I haven’t seen in a while I think they expect me to seem outwardly sad.  I actually find myself strangely correcting their take on the condition they expected to find me in.  On a daily basis, sadness is not my overarching feeling, because I am still sorting through what transpired in the hospital.  We had very little ability to digest what happened, while it was happening.  I still feel pain and desperation for Reece.  Absolutely, I feel sad that I don’t see Reece, but I feel relieved that he won’t have to go through any more pain again–ever.  Thank God for that.  So maybe I have yet to have the mind-numbing pain wash over me in regard to grief over Reece or maybe in the midst of understanding such a level of human suffering, I will be spared from some of the suffering of grief as the joy in Reece’s healing washes over the entire situation.

I’m not sure we’ll ever have a “new normal” like so many people have told me to try to find.  Hmmm–I don’t ever envision that.  Part of it is that is seems impossible without Reece and part of it is the battlefield mentality we lived in for so long when Reece was still here.  You try to reprogram your mind to not think too far out, to not plan for another one–two–five–ten years out, because you are just trying to make it through the day.  The mental and emotional energy it takes to release the grip of personal expectations regarding my life and what I think it should be isn’t worth it.  I would rather do my best to take each day for what it is and not discuss future plans.  I guess everyone has some sort of “normal” for their life, but I can’t imagine ever feeling normal again.  Truthfully, if life here doesn’t include Reece, I don’t want it to feel normal.  It can be routine, it can be typical, it can be joyful, challenging, exciting, but it can’t be normal or complete.

Sometimes I think about Reece and what life would be like had he made it out of the PICU.  I fully believe God could have miraculously healed him, I truly do.  But I also believe he could have been healed with many struggles.  He could still be in-patient, on oxygen, dialysis, many medications.  During Reece’s last hospital stay I kept saying, “Something has to give here.  We can’t keep going on like this.”  Now, in light of Reece’s passing, I feel twinges of selfishness for saying that.  I have to remind myself that it isn’t all about me and that God didn’t determine how Reece would be healed by my level of exhaustion.  God’s sovereignty is unfathomable and includes the entire situation–not just bits and pieces of the situation.  The whole situation is covered, including today, as I blog, drink my coffee, watch my kids, talk with Terry, and spend another day missing Reece.  I have to keep reminding myself that just like God planned Reece’s life with his suffering with MDS, he planned our lives with suffering in missing Reece.  He knew we would suffer for the rest of our lives with this.  But it has made me so grateful that instead of thinking of Reece lying in a box in the ground, he is actually alive!  I know I will see him again because God sent his own son, Jesus, knowing he would watch him suffer and be subjected to cruelty.  He knew he would have everything in his power to stop it all and save Him from that suffering.  And out of his awesome love for us, he allowed it to happen.  He did it for all of us, but in the context of my own relationship with Reece, he did it so I could get up every morning looking forward to the day I get to see Reece again.  He loves Reece that much.  He loves me that much.  I hope you know–he loves you that much, too.



Filed under Journal Entries

2 responses to “Journal Entry #6: How Did We Get Here?

  1. Sarah Naranjo

    What an incredibly hopeful and beautiful post, Terri. Also, so glad you are living in the moment and taking it day by day and really taking the time to ponder. Will continue to pray as you prepare for the results next week.

  2. Jean Moore

    Beautiful and glorifying – thank you for sharing Teri. I hope you get joy from the knowlege that God is using you, Reese and your entire familly to reveal Himself to others. May He coninue to be your source of wisdom and strength.

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