Category Archives: Journal Entries

A New Space

It’s a new year and I’ve decided to move into a new space for writing.  I have come to the conclusion that I view Like Olive Shoots similarly to how I view many of Reece’s things.  They have become somewhat untouchable and I am heavily into “preservation mode”.  I plan on keeping this blog the way it is; it will remain active for the time being as I believe it is purposeful and something that people reference and have a need to visit from time to time.  Our family also needs it for reference in many ways.  It feels a little strange to be writing primarily somewhere else, but it also feels right.  Thank-you for respecting this space and for your support, which has and continues to be incredibly meaningful to our family.

Feel free to check out my new site: www.lifeafterthursday.com

Thank-you for sharing in this journey; it has been an honor to write on behalf of Reece and our family.

Terri

 

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Journal Entry #7: A Finger for the Effen MOND

Yesterday, I mentioned that if the energy I have for Reece isn’t used in a positive manner, it could become destructive.  Yes, this energy has to go somewhere–right now it goes somewhat towards the blog and somewhat to other areas.  Depending on what feelings come forth from it, there can be deep desires to be consumed by it.  I don’t want to be consumed by it, which is why I am trying to find a healthy way to channel the energy, to do something positive with it, versus drowning in deep emotions.  Deep emotions are important, but I fear that the waters I tread when I am in them may become choppy and take me down.  It wouldn’t even take a big wave to do it–just enough of a wave to wash over my head and take me under.  And under can look like many different things–but I know that whatever “under” may be it has been strategized about and carefully thought out by the devil himself.  Or, as Reece used to say, “The Mean Old Nasty Devil” (the MOND).

I have repeatedly stated that God has covered Reece and us, but for the rest of the post, I’ll speak for myself versus Reece or Terry or any of my family.  The Lord has been so good to me in showing me ways he has been supporting us.  And truly, I don’t think he is necessarily nearer to me now than he has been at any other time of life.  However, much of life’s “noise” has been muted during this last year, which has helped me understand God and his presence in a very different way.  Our circumstances have caused us to rely on God.  It isn’t about having a strong faith at all and it isn’t about being a “better” Christian.  I tried everything I could to figure out a way to fix this–maybe if I pray in a certain way or ask in some special fashion, Reece will get better.  I had to yell “uncle” many times to realize there was no path but God.  In fact, for me, it is as I mentioned yesterday; it’s about being at a completely weak and broken place.  It is the first time in my life I can honestly and purely relate to the apostle Paul when he says:

“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.   That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”  2 Corinthians 12:9-11

There has been no option to muscle my way through this.  There is no amount of caffeine, alcohol, retail therapy, self-help books, or motivational speakers to get us to persevere.  It is impossible to do without God and self-reliance quite possibly may be the path to personal destruction.  It isn’t that I’m intrinsically a weakling–I’ll be the first to admit I am a relatively strong and most certainly stubborn person.  I like to win.  I like to say I did it all by myself.  In fact, I am built this way so well, I’m amazed that God was gracious in allowing me to mess up on my own for the first 32 years of life.  I look back to life’s roadmap that has been full of me stubbornly choosing my own course and messing up.  My successes are only built on the foundation of the Lord and, truthfully, done in a way that he allowed me to feel like any success I found was of my own volition, when in fact, he was gently (and thankfully) pointing me in the right direction.  I feel like it was his way of letting me try my best on my own before he stepped in.  He is so parentally compassionate in that way.  And I’m sure he knows that there will be many more times in this life I will fail to seek Him first.  He knows me so well.  No, I’m not weakling, but no matter how strong I am, I am no match for the things of this world or for what we’ve walked or for where we are going.

As much as I feel like the Lord has been covering us, every day I have to make choices to not let Satan “win”.  This may sound crazy, but I don’t care.  This is the reality for all of us, but again, I’m talking about me here.  There are certain points in life where I have been more vulnerable than others.  These are low points in my life–when my guard is down, when I’m tired, when I’m seeking comfort.  It probably goes without saying, but this is one of those times.  Satan is ready to pounce.  And again, I’m sure he’s been lurking every day of my life, but I’ve never been as in tune to it as I am right now.  For every thing that doesn’t beat us down, he has a tactic try to do so.  For every time I thank God for something, he’s ready to take me down with some crappy thought or doubt or attempt to create fear in an effort to abandon God’s promises.  It’s not even necessarily obvious things that he seeks to use; it could be mundane things, half-truths, or low feelings.  He’ll use anything he can find to try to drag me down.  He tries to grab a tiny corner of the page of the day in order to flip the whole thing over with his words/feelings/doubts/fears being the place where the day leaves off.  Then, he tries to do it again the next day.  I notice it every day.  I usually refer to these tactics as “traps”–usually mental traps.  Case in point, I will think of a painful memory of Reece–usually one around when Reece was in our home and the grueling routine he–we all–endured.  It becomes easy to pick apart the memories and beat myself up over the things I “should have” done.  I should have spent more time with him, versus allowing others to help.  I should have taken more night shifts with him after the baby was born.  I should have done this and I should have done that.  If I’m not careful, I am mentally immobilized to do much else with the day–that is if I allow Satan to do his damage and keep the edge on the day.  All that energy that I have in my life that has always been and always will be devoted to Reece, that is vulnerable too.  It must be channeled into something good; otherwise, it could easily be put toward focusing on all the things that “could have” happened.  It could be used to focus on how I feel we were wronged or to keep my head in the hospital and the trauma versus in the hope of the future.  It could be channeled into all sorts of bad habits and vices.  But that’s not from God.  It is only through seeking God’s truth, reading the Word, reading God’s promises, and allowing my understanding of God’s provisions for Reece to wash over the memories of what we experienced that I have the ability to ward off the damage that Satan seeks to bring to my life.  And it could be so damaging.  So it turns out, the armor of God is the real deal.  We actually do need it…at least I do.

Right now, I’m just making it a point to recognize when it’s happening and call it out for what it is.  I’m spending a lot of time trying to discern truth from lies.  And as our bible study leader said last week, “A half truth is a whole lie.”  Amen.  But you can be sure that whatever comes out of this in my life, it will be my way of giving the effen MOND the finger.  Classy, right?  I figure it’s his terminology, so I can use it on him, just so I make myself perfectly clear to him.  I hate that guy.

Whatever I end up doing, one thing is for sure; it will not be without praising and thanking God and without professing his deep love for me.  And it won’t be without professing his deep love for Reece.  I no longer care what others think of my feelings about God.  Without God, there would be no more “what next”?  There would be no more looking forward.  It would always be looking back and longing for things of the past.  There would be no more hope and excitement over seeing Reece in the future.  Even more so, there would be no more certainty of it.  Hope implies the possibility of something.  I can hope around the timeframe of seeing Reece.  I hope that I see Reece soon.  However, it gets even better than hope with God, because I know that someday I will.  And every single day that is something that I need to know.

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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.

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Journal Entry #5: A Little While

I am shocked to be this far out of transplant and at home, no less, and feeling as serious about this whole ordeal as ever.  For as long as Reece was in the hospital, it was still this little package of time that had a beginning and an end.  And I suppose the home part has a beginning and an end as well.  But the end is the same for all of us…the end of our lives.  However, in Reece’s case, it feels much different to be contemplating the end of someone’s life at such a young age.  I don’t sit around and think about Reece’s life coming to an end and stew over it.  However, since it has been one of many possible outcomes of this process, feelings and ideas about death in general have stirred in me like never before.  For some odd reason, this has been on my mind more now than ever, although many feelings regarding death have surfaced since this process started last fall.  Perhaps this is why I decided to look at the prognosis of chronic skin GVHD and pediatric MDS.  But seeing the numbers from this angle was far different from what I imagine it would have been like on the front end of transplant when my feelings were so raw.  When mortality seemed scary.

I believe it is common for people to have some sort of fear regarding death.  I used to be afraid of the entire subject for much of my life.  In the last few years, I have realized that I am certain of where I am going, so death itself isn’t scary.  However, I have been afraid of the process of dying itself…the pain and suffering that may or may not take place preceding death.  Now, during this particular time, even the preceding events don’t seem to scare me so much.  I guess when you observe and experience suffering for a prolonged period, you realize you will make it through.  What scares me, is life.  Life without people I love, but even more so, life with people I love that includes their suffering.  The prospect of Reece’s suffering or any of my kids suffering for prolonged periods is what frightens me…suffering with no end in sight.  The more I see suffering, the more my eyes are opened to it.  Not just what is going on in our family, but suffering everywhere.  There is a phrase that is often used when mentioning suffering in the Bible, “a little while”.  Usually it is followed by a promise that one will receive blessing after they have suffered for a little while.  What is “a little while”?  The more I think about others suffering for prolonged periods, the more I am reminded that a little while for me is probably very different from what it is for God who deals with eternity.  When you are experiencing suffering, even a short amount of time seems prolonged.  So is there a human way to think of “a little while” in regard to pain and affliction?  I know that six months is short in the grand scheme of life, but it sure seems like a heckuva long time to be in this period of suffering and it isn’t done yet.  I’m convinced that the statements in the Bible are meant to remind us of the longer term picture and also possibly serve as a reference to life on earth in general.  This is not our permanent home.  Heaven, now there’s a place I can settle into.  And thinking of my kids in Heaven–what better place is there for them to be?  I just don’t want to be stuck here without them…that’s a thought that scares me.  And, like any other parent, I want them to live long lives on earth before going there.   

In regard to my own mortality, I find myself viewing it entirely differently than before.  I’m not sure I’m striving to live for quantity anymore–it is quality time I’m interested in.  I feel a bit choosy these days, although seeing I have no control over many of life’s circumstances, it’s much more of a preference than a reality.  I really have no aspirations to live to 100.  I want to spend time with the people I love and then I want to be done.  And mostly, I don’t want to spend 100 years on this earth.  For all of its beauty and wonderful things, the longer we experience what we are experiencing I realize that there is so much more for us beyond this life.  And just for putting my personal thoughts out there, I have a feeling God will task me with a long life here full of His work until I am well beyond my comfort level in staying here.  As of late, He seems to work this way in my life. 

Reece had some odd bleeding Wednesday evening due to his thinning skin (a side effect from–you guessed it–prolonged steroid usage).  While we were not planning on being in clinic yesterday, there we were.  Not only were we in clinic, but we were “worked into the schedule”, which was running behind in the first place.  As we sat in the waiting room for a ridiculously long time, I was stewing about Reece, how bundled up he was and uncomfortable sitting in the waiting room for so long, and how the other BMT kids in there appeared to be doing “normal” kid things.  Why isn’t Reece doing these things?  I was feeling sorry for us and I was crabby.  Then I called to mind these other two longer-term hospital patients that Reece was rooming next to in the hospital.  One is still in-patient and has been for much longer than Reece.  His transplant took place in November and he is still there…in June.  The other child is dead.  I suppose those parents would be looking at Reece and asking why their child wasn’t sitting in a stroller, healthy enough to be coming into clinic on a regular basis.  It kinda made me squeeze the blessings out of our circumstances and count them, however humble they may seem.

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Journal Entry #4: Fear

I’ve done a lot of thinking about fear lately.  FEAR.  The word even looks daunting if you stare at it for a while.  Emotions are a universal language and fear is a powerful emotion.  Everyone has fears–everyone deals with fear in their own ways.  Just like any other emotion, the more power you give it, the more power it takes.  We do a lot of things to avoid things we fear–we buy insurance, steer clear of situations and people, abuse substances, acquire bad habits, seek therapy, take precautions.  Fear brings even the strongest of people to weakness and it has multiple layers.  It is, in our lives, unavoidable, but it is also purposeful.  I actually see some degree of fear as a healthy emotion; it isn’t good to be terrorized, but the core emotion was designed for a reason.  I have much gratitude for living through some of our latest fears.  Still, they are experiences I hope we never deal with again.

There have been many times in the last five months that we have faced “what-if fears”.  This type of fear is dreading a possible outcome of the circumstance at hand.  It is because of this type of fear that we make decisions that will hopefully thwart any meeting with said dreaded situation.  We walk on a lighted path to avoid the darkened street where danger lurks.  Often times, due to decisions and our ability to exhibit control, we can avoid the problem entirely.   Thankfully, that is the mode in which we typically operate during every day living.

There have been two distinct times, however, in our journey with Reece’s health where the fear we faced was “realized fear”.  It is fear at one of the deepest possible levels with almost everything outside of our control.  It was no longer a hypothetical situation; it was real.  Realized fear is walking down the lighted path and meeting the danger in the environment you have already tried desperately to control through “what-if fear” or it has come with no warning at all.  The first occurrence was when Reece received his diagnosis.  It was surreal–a million different emotions and sensations zoning in on all at once.  My mind raced; I felt as though my life was a movie playing out in front of me.  Still, there was a redeeming quality of hopefulness in knowing that we would likely get through the transplant.  There was an “out” for us–albeit a daunting one–in knowing we could rid him of the disease through BMT.  There was an ability to seek refuge in knowing that Reece could move on to live a full and healthy life.

The second time happened when Reece had his pulmonary hemorrhage. It was the deepest darkness I have ever had to experience.  There was an acute realization that we may have not made it out of that situation.  It felt hopeless, desperate, panicked.  There was very little we could do to control anything.  Not a day has gone by since that happened where I haven’t replayed that situation in my head.

One realization I’ve had as a result of these two situations is the ability to move beyond fear.  I still have many worries about this whole thing, both for our present situation and the future.  But being in a moment where your worst fears are realized allows you to let go of some of the fear itself.  You recognize that time still passes, as those moments don’t last forever.  They have lasting effects, yes, but they pass by as any other time in life.  Part of moving beyond it is realizing we weren’t really in control in the first place.  It was the realization that something else was at work and we had to sit and watch it all transpire.  I never felt alone in it.  I never felt abandoned and I knew that the Lord was near.  Just letting go of trying to control it was hard to do, but it also had some sort of calming effect in knowing we had done everything we possibly could do and it was out of our hands.  I realize I am not doing a good job of clearly describing it; it is best understood through the actual experience.  My point is, in the most fearful situation I have experienced, we were not abandoned and it felt purposeful.  Those two things were surprising and comforting and have made me realize that much of my own fear is anticipation of the worst scenario and the assumption of abandonment.

As I look back, I recognize that the specific things that I feel God has spoken to me about personally in regard to Reece have never been proven untrue.  Since Reece’s diagnosis, I have had many prayers for him–things that I have wanted for him to be spared from.  God never promised He would spare Reece from any of those things, but He did speak specifically about what He would do.  I asked God to give Reece a clean bill of health–Reece was given a diagnosis.  I asked God  to spare Reece from side effects of transplant…Reece has battled multiple side effects, including  one of the most serious.  However, even though He didn’t answer some of my prayers in the ways I wanted Him to, He never broke a promise.  And He never backed down on things I believe He specifically spoke to in regard to Reece.  He also never left us.

It would be really easy to fall into the grip of fear about Reece’s future.  I am not just referencing Reece’s hospital stay.  The chance of relapse, the chance of other complications, the chance of side effects from drugs/chemo/radiation…the list goes on…all could become overpowering in the amount of fear they produce.  I also have the fear of Mother Nature; that had Reece been given this diagnosis 20 years ago, there would have been no option.  Therefore, how much tampering with one body can happen before Mother Nature takes what she believes was her own to begin with?  We are walking the tight rope of modern medicine and that is hair-raising.  As I have reflected on the last 11 weeks and, specifically, the last three, I realize that we were brought to a place where there was nothing to do but just wait and see.  There were no other options to seek, no paths to take, no person to give us a definitive answer.  There was nothing to do but wait and see what was in store for him.  It has become apparent to me that God doesn’t make decisions on a whim.  He doesn’t rush things along and He doesn’t do things haphazardly.  I have made a lot of assumptions about how God operates, based on how I operate.  God doesn’t work that way.  He has seemed methodical and calm.  I don’t know how I truly know that, but for whatever reason, at the center of the storm, God has seemed calm.

I found that a great source of comfort (much to my mom’s suggestion) during those first critical weeks post-hemorrhage and even throughout other parts of transplant has been to get up in the morning and thank God for what He has given us in that very day.  This, I feel, sounds basic and somewhat obvious, but getting up and being thankful that I didn’t get an urgent phone call overnight, that Reece was doing ok at any particular moment, that he had a good hour/day, that we were given yet another day with him–acknowledging what was being given to us was comforting.  The fact is, this situation has shown me how blessed we were with what we had before this diagnosis, that every day is a gift, and that we have been spared from so many things; I feel it actually highlights how loving God is.  I can not stress that enough.  There have been many times over the last five months where I have had to keep telling myself that God loves us, despite feeling confused and at odds with Him.  But through what was a terrifying experience, I have been blessed in knowing that God was near; He was in control.  He did not break a promise and it highlights how much He has loved us and spared us from so many other things–both related to this circumstance and in other areas of life as well.  We have endured much, but we have been spared from even more.

“Be strong and courageous…for the LORD your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6

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Journal Entry #3: Truths That I’ve Learned the Hard Way

I hope I never have to experience a week like this last one again.  Quite frankly, it isn’t something that you want to read about and I don’t want to write about it and then have the opportunity to re-live it by reading it myself.  I hope that these types of situations are what you only witness in movies and never in reality.  Because the real-life version is indescribable.  I have, however, had some personal revelations in regard to my feelings on life and faith and thought I should record them.

1.) God’s Mercy

When everything was snowballing last Wednesday, I kept thinking over and over, “How is God merciful? Where is God at in all of this?”  I wrestled with the concept of God being merciful, in light of the situation.  As the week in the PICU progressed, I began to realize that God’s mercy is extended to us every day in not knowing what our future holds.  This line of thinking seems contrary to what I usually think–or so I thought it was contrary.  It turns out that what I really want to know is that everything will be okay in the future.  But that isn’t true for anyone; every future holds difficulties.  The truth is, we know we will face very challenging circumstances, hurts, heartache, grief, physical and mental pain, and ultimately death.  But we will also experience wonderful, exciting, beautiful, and joy-filled things as well.  If we knew how everything would play out in the future as far as the difficult things, we would never be able to enjoy the wonderful things about life.  God knows these details and He keeps them to Himself out of love and mercy for us.  That’s a pretty amazing gift.  Had I known the pain of what we would face last Wednesday, I would have never had the strength to get through the first eight weeks in the hospital or experienced joy-filled moments in the months since Reece’s diagnosis.  Not knowing the future opens our mind to endless possibilities about what life may possibly bring and it keeps us hopeful.  And hope is a beautiful, beautiful thing–it is essential for our human survival.  Hope is the birthplace of dreams for our lives, the stimulant of our desire to learn and try new things, the platform for coping through tough times, and the source of our will to survive.

The other lesson I have learned about God’s mercy, is that He designed our lives to not be moment-by-moment living.  It is commonly understood that we only have this very moment and that each day is a gift.  But there is a difference between knowing that truth versus understanding that truth by being required to live in that manner.  It is a luxury and gift in life to have the choice to savor a moment or live in the moment, but then also step back in to the totality of life and harness the bigger picture.  When one is required to be acutely aware that the very moment you have may be all you may get, it is exhausting.  Again, God is merciful in allowing much of our lives (some more than others) to free ourselves mentally of this reality.  It allows us to navigate life in almost an ignorant fashion in regard to this.  That in and of itself is a gift.  I know we will get back there as a family.  In fact, the rest of our hospital experience has not been this way.  It hasn’t been easy, but it hasn’t required this type of mental exhaustion that the last week demanded either.

2.) The Living Word

I have not always cracked the Bible open on a regular basis, but in the last five years I have spent a considerably greater amount of time getting to know God’s Word through my own self-study and through group-led Bible studies.  It has been impactful in many ways, but it has never been so powerful to me as in this deep crevice of life.  I have been amazed time and time again at passages that are thousands of years old and how relevant and alive they are today.  Words that I have read so many times before without careful consideration have leapt off the page and permeated the deep wounds from this experience.  This past week, I have literally slept with the Bible laying open to various verses of comfort on Terry’s side of the bed.  Just waking up to that next to me has been a source of comfort.  Bible verses that I have memorized throughout the years have scrolled through my mind.  What’s more, is that I know God has specifically talked to me through the Bible on so many occasions; He has not been silent through this.  I haven’t had to search and pick through verses to come up with something that fits–I have opened it up and read the exact verse of comfort needed for the exact moment.  That is the Living Word.  It may be old, but it isn’t out-dated; it’s fresh, it’s relevant, it’s applicable to life today.  And it’s God-breathed.

One verse that has stuck out to me specifically for Reece is Zephaniah 3:17:

“The LORD your God is with you, he is mighty to save.  He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.”

I love thinking about God rejoicing over Reece with singing.  This verse speaks to His power, joy, mercy, and love.

3.)  The Master Plan

There is no way for me to navigate through something like this without accepting that God has a Plan.  It is a tough thing to do and part of the process in doing so is admitting and accepting that our human minds can not grasp His divine nature.  I have felt strongly since the time that Reece was diagnosed that God would use this situation for His glory.  Everything on this earth is for His glory.  Sometimes that truth is easier to see when you attempt to consider the vastness of time or the complexity of creation.   It’s a little harder to do when you try to make sense out of a nightmarish situation.  But to think of it outside of God’s Plan makes it just another depressing story to read about.  Reece’s health condition will be used in ways that we don’t even know.  It wasn’t like God just decided one day to give Reece a tough lot in life.  On the contrary, God knew when he created Reece that he would be put in a unique situation; He chose Reece for this very circumstance.  He isn’t punishing Reece, but He did create the child knowing what he would endure.  Whatever the reason for this situation, he wasn’t given a one-in-a-million disease in vain.  We might not know in our lifetime how it has been or will be used, but it will be used for God’s glory.  That’s not me giving myself a pep talk; I believe that as truth.

Reece made it back up to the BMT unit today.  It was a good moment and a good day for him.  We continue to ask for your prayers of protection, progress, perseverance, remission, and life.

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11

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Journal Entry #2: Hospitalitis

They say the most obvious place to be exposed to germs and get sick is a hospital.  It is a little different on the BMT unit.  Everything is very sterile here–everything is wiped down, cleaned thoroughly; everyone washes their hands constantly and there is no one up here that is sick–other than the kids themselves.  However, the one thing that can not be sanitized and is left vulnerable is your mind.  No amount of soap and water can protect your brain from exposures to what you experience here.  Which brings me to a topic that is near and dear to my heart…and I guess my mind.  A very real side effect of being in a hospital for a prolonged period–probably mostly for family members who aren’t fighting off an illness and therefore are more cognizant of the day-to-day happenings–is what I have affectionately termed “Hospitalitis”.  I have a bad case of it.

I think it starts when you forget that the hospital routine is not a permanent routine and you feel like it will always be the way you operate; it becomes normal.  And it isn’t all that bad.  In fact, I think you can only get a full-blown case of it after you have succumbed to the reality that you are here and have eliminated most expectations of ever leaving.  You face your worst fears about what you (or in this case, your child) has experienced, is experiencing, or may experience in the future.  You let go of the word “discharge”.  Your mind relaxes and you just “go with it”.  It’s best described in the song “Hotel California”…”You can check out any time you like, but you can never leave.”  It starts with you accepting the hospital and leads to some very bizarre side effects.  Here are the symptoms:

1.) A New Language

Words that seemed incredibly foreign when you first arrived are now part of your vernacular.  You begin to know what all the drug names are (both brand and generic if you are really paying attention).  You use the words frequently and without hesitation.  During doctors rounds, you begin asking probing questions that actually make sense.  The doctor nods at you in appreciation.  You can easily follow the entire conversation and actually correct information, if needed.  You begin to feel as though you have taken nursing classes or med school classes.  The hospital codes that are announced over the PA actually make sense–you know what type of emergency it is and where it is located.  You are nearly fluent in the hospital lingo.

2.) A New “Family”

The doctors, fellows, residents, nurses, and nursing assistants know you by name and you know their names.  They mention people during conversations that you would have never known at first and now you can piece all of the players together.  You have met, talked with, and gotten to know so many doctors you actually know their first names instead of the nicknames you originally came up with like, “Dr. Five-o-Clock Shadow” or “That-One-Guy-Who-Always-Sits-On-The-Desks”.  In fact, you are so used to seeing these people, you could actually envision going out for happy hour with them or having them over for Thanksgiving dinner and not thinking twice about it.  You are confident enough to know who to completely trust and who to question.  You learn that while the doctors have the highest level of education, the nurses have the most practical advice.

3.) No Fear of Bodily Fluids

If you felt a bit squeamish seeing bodily fluids upon being admitted to the hospital, it has become a thing of the past.  If you have ever had a newborn child, you thought you would never talk more about your child’s poop than during that time.  Now, you regularly talk about several types of bodily solids and fluids to large groups of people and in fine granularity.  It phases no one, including yourself.

4.) A New Level of Assertiveness

Upon arrival, things are so foreign you don’t even know where to begin.  You assume everything everyone is telling you is accurate because they say so.  Little by little you begin to get familiarized with things.  You start by silencing the beeps on the machines.  Then you start to know what numbers to look for in the print-outs.  Finally, you come to the realization that you, as a parent, are more constant in the room than any other person, even doctors or nurses.  So while you aren’t as educated in the field as they are, you are well aware of what is considered “progress” and what is going on.  You begin to feel empowered to weigh in on what you feel is in your child’s best interest.  You no longer feel helpless to make decisions.  You might actually find yourself saying things like, “That’s not happening unless…,” or, “Until this happens we’re not doing that,” or my personal favorite, “You need to leave the room.”  That last one is a real indicator that Hospitalitis is in full force.

5.) Sense of Humor on Seemingly Not-So-Funny Things

Suddenly, things that were not so humorous or only mildly funny are a complete hoot.  For example, I thought it was so funny this morning when I brought in a bottle of Lime Izze into Reece’s room.  Izze is a natural soda made with juice and carbonated water.  The lime version of the drink looks like a bottle of beer.  For some reason, I thought it was so funny to be drinking it at the hospital, especially while pregnant.  Normally that would be smirkable best, but at the time I thought it was pretty creative.  Nurse walks in, pregnant lady in a hospital is drinking what looks like a bottle of beer, nice.  Another example is the video I posted last week that was about all of the things cancer patients say.  If you missed it, you can check it out here.  If you can’t laugh about some of this stuff, it will make you that much more bitter.  However, in my experience, laughter and humor are some of the final symptoms of Hospitalitis.  You have to be in a hospital for quite a while to see beyond the immediate seriousness.  You have to come to terms with the reality of the situation before you can see or accept any irony or satire.  You have to completely accept what is happening and be done with the I’m-fooling-myself-and-nobody-else stage.

6.) The View is Different

This is actually one of the best side effects from being here.  All those little rules you used to live by seem to not matter so much.  I no longer worry that my kid will be inactive because he watches t.v.  The t.v. is actually an activity at this point.  My “No Guns” rule is completely gone as a Nerf gun is a source of entertainment.  The kicker is the whole organic/chemical-free craze that is going on and that I have to some extent bought into.  I am not saying I don’t want to eat organic foods–I do still buy them and I think they taste better.  However, once you have allowed toxic chemicals to be dumped into your child’s veins, you begin to take a different view on this whole organic phenomenon.  It WILL be okay to eat the non-organic produce if that is what we do.  My child won’t get cancer because I bought a gallon of regular milk.  I know this is a hot topic in many circles of people.  I’m just saying on this end, the view is different.

There may be more symptoms, but these are the obvious ones.  It’s probably enough to paint an accurate picture.

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