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.



Filed under Journal Entries

Neil, Faith, and Purpose

We’ve been doing a bit of traveling the last couple of weeks.  It has had its own therapeutic purposes and it has kept us quite busy.  Last week, we were able to go to see Neil Young in concert in Chicago.  It was good for us to see him.  Reece actually claimed that “Heart of Gold” was his favorite song, followed closely by “Ohio”.  We often listened to those songs on the drive to preschool and Reece requested hearing those songs when we were driving to and from the hospital for home visits.  In fact the first thing he asked when we got in the truck before taking him home that first trip back was, “Can we listen to ‘Ohio’?”  While Neil didn’t play either song during the Chicago concert, it was a great show and I think an important thing for Terry and me to do.

This past weekend, we went to Faith’s Lodge, which is a large lodge in northwestern Wisconsin that hosts bereaved families who have lost children.  It is a place to spend time with each other in a serene setting, with other people who understand the loss of a child, and just be.  The weekend was an important one for us.  I do believe we will go back next year, although we will likely go to a parents’ only weekend.  The ages of our girls demand much hands-on time and thus make it difficult to connect for long periods with others. However, I am glad that the girls went with us this time.  I don’t care much for leaving them right now and it was really neat to see all the kids of various ages playing together.  It occurred to me as the days passed that the kids that came to the lodge somehow corresponded in ages to the siblings lost by the other children.  So kids and families played with each others’ kids in a therapeutic way…or at least that is how it felt to me.  There weren’t any five-year-olds there, but there were many boys there older than Britta.  It was bittersweet to see them running laps around the room, pushing oversized dump trucks and Cars vehicles, much like Reece used to do.  Britta naturally gravitated to them.  I noticed other families doing the same with both of our girls, although it may not have been a conscious thing.  It was different from a regular playdate with other families.  While I would never wish the loss of a child on anyone, it was important to have that time with other people who “got it” and who probably felt those bittersweet twinges in a real way right along with us.  No one there discussed it with me, but then again, no one had to.  If you’ve been through it, you understand–there’s no reason to discuss it.  And that type of understanding is priceless.

There is this really beautiful area on the property where people paint stones with their child’s name on them and lay them near a bridge.  We painted a stone for Reece.  I think if he is aware of the stone (which I believe he is), he probably really likes it.

There is typically some period of time, before you add a child to your family, for preparation, planning, and adjustment–be it via pregnancy or the adoption process.  It makes sense to me that after the loss of a child, the time immediately following would be an intense adjustment period as well; perhaps it never ends.  As I discussed with one of the other mothers this weekend, right now it feels perfectly alright to be broken.  I feel like we were operating in such a heightened survival mode for so long that now, the feelings of the trauma and exhaustion are catching up.  No one can fix it or make it better and I don’t want anyone to try to do so.  I guess this part of life demands brokenness and that brokenness has its own purpose.  We need to assess the damage before we can try to put anything back together.  Sometimes things can’t be made right and sometimes the holes that are created can’t be filled.  I’m not interested in filling the hole and I’m not interested in even attempting to go back to the way things were.  I’m not the person I was a year ago and I’m never going back.

I have been on a quest of sorts these last few months to figure out how our situation with Reece will be used in our lives.  I love hearing from people about how Reece’s life touched their own; I know our Reecie had a big impact on this world and will continue to do so.  He fulfilled his purpose here and I know we will hear about some of it, but that most of it we likely will not.  I don’t believe that we were given this unique path as Reece’s parents to have it go unused in our own lives, though.  Part of my desire to figure out what is in store next is that one doesn’t lose parental energy for a child that has passed away.  I haven’t lost the energy that I have specifically for Reece and I can’t just redirect it to my other kids.   It has to go somewhere and I want that “somewhere” to be a productive and positive thing.  It is slightly ridiculous that I am rushing to figure this out–it’s probably a knee-jerk grief reaction to scramble; if I have learned anything it’s that God has perfect timing for everything, including this part of the plan.  Still, I think I have a fair amount of paranoia that if I don’t figure out something productive to do with the energy, it could become destructive.  But I’ll save those thoughts for another post.

Another part of my desire to know what is next in store is that I want to figure out my life’s purpose in some sort of attempt to figure things out earlier on in life, versus wasting time on the non-essential.  Somehow in my mind I hope that perhaps the Lord will mercifully spare me from a prolonged life here by doing so; maximize my time in some sort of way.  This last statement, I can already tell as I re-read it, could be largely misunderstood.  I’m not suicidal or ungrateful for my life.  I love my life here–love my husband, my kids, my family, and who I believe God made me to be.  But I believe to my core that this is not our final place–that God has a purpose for each of us on earth and that once it is fulfilled, our time here is done.  This strong belief I have, coupled with my grief state over Reece, leaves me feeling urgent to figure out the rest of the plan (an impossible task, really) so that my time here won’t be living until a ripe old age.  At the same time, I know a big purpose of mine is to raise my girls in a God-honoring way and to help them understand how Jesus loves them.  And I thoroughly enjoy all of my family, so it feels conflicting to want to leave them here.  Until I’ve done the part God has tasked me to do on the child-raising front, I will be here regardless.  Still, I believe there is likely another part of my life’s purpose that I have yet to uncover.  So I feel urgency to help life along as best I can, if that makes any sort of sense.  I don’t want to take a lackadaisical attitude that prevents me from seeing Jesus and Reece for one more day than necessary.  That may seem bizarre, but if you walked in my shoes for five minutes, you would understand the constant pull Heaven-ward on a daily–no, hourly, and at times minute-by-minute–basis.  I suspect when my girls (God-willing) graduate high school and move out, it will feel like a watered down version of this.  Heavily watered down, that is.

On an encouraging note, I feel like I may have received some clarity over the last couple of weeks regarding what I am supposed to be doing going forward.  I am still praying about it, because it is admittedly not a path that I would naturally be choosing.  And since my life, especially this last year, has been full of God’s plans for me being completely inconsistent with my own desired outcomes and plans, this seems to be a sign that it may in fact be the right thing.  This area of what I believe I am perhaps being called to do seems to make a lot of sense to me in light of all that has happened and our desire to make some sense out of it.  The most I can say right now is that I do feel it involves writing.  So I thank-you for your continued prayers in this area, as sorting through this will be an important part of the healing process for me.  I also thank-you for your continued prayers for our family.


Filed under Family, This and That

Few Results

We met with Reece’s doctors last week to discuss the results of his autopsy.  While I appreciated reconnecting with both doctors, I must say, I hope I never have to have a meeting to discuss such a subject matter ever again.  It was neither overly emotional nor surprising.  Still, they verbalized things that we knew all along but no one ever really outright stated.  It’s not that the staff wasn’t truthful with us.  But when you are walking that road, you can’t just state certain things in such an emotionally-charged environment.  Additionally, no one really knows for certain what is going on at the time.  It is a very confusing and complex process; Reece’s was more complex than most.  Without going into all the details that the autopsy revealed, I want to mention two things.

First, Reece was 100% donor and one cord did, in fact, win out in his bone marrow.  I guess it doesn’t really matter to me, though.  He isn’t here with us, so to me, I bring it up to tie up the loose ends that we discussed throughout this whole process.  From a blood-exchange standpoint, the transplant worked.  But honestly, it just feels like a cheap consolation prize at this point.  Second, Reece’s primary physician told us that he had the worst case of skin GVHD that she has seen yet in her practice.  Granted, she is one of the younger doctors on staff, but still, it is pretty rare for kids to have GVHD this severe.  It’s much more common for adults going through transplant.  Kids’ bodies are so much more resilient.  So, we’ve been chewing on that conversation over the weekend.  Somewhere in the archives of this blog I mentioned how I believed Reece’s story to be about enduring much as a young child.  I was right.  But that is only part of his story.

Where I struggle today is not having the opportunity to have discussed what happened with Reece himself.  In my mind I envisioned that there would come a day where he and I could actually discuss what happened.  I could explain why we made certain decisions and why, as far as what we understood, he had to go through BMT.  I know he doesn’t need me to have that conversation with him now, because he knows why it happened, why it had to happen the way it did, and how it ultimately will be used by God.  But I need that discussion.  I want to hear in his own words what it was like for him.  I want to apologize for so many things that happened.  I actually thought that I would feel some sense of closure on the medical side of things after we found out the autopsy results.  Without Reece here, it is incomplete.  For all the joy-filled feelings I have for him, it still feels like I am sitting here licking the BMT wounds.  Truthfully, I’m not sure how to bring that to resolution.  It makes no sense to constantly remind myself of what happened.  However, I could see that part never going away during my lifetime here.  Because even though Reece doesn’t need that conversation with me, I need it with him.  There is no such thing as talking yourself into feeling better about this type of situation.  As I’ve stated so many times before, it is what it is.

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Filed under Bone Marrow Transplant

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

Catching Up

I took an unintended couple of weeks off from blogging and it felt very good.  No offense or anything.  I just didn’t have anything to share.  I have an awareness that much rest is needed right now and sometimes that includes not deep diving into feelings or at least not rehashing them through the blog.  I have never gone that long between posts and it was odd, but it felt right.  Today, it feels right to post.  It’s eight months to the day since Reece’s transplant.  It’s two months to the day since our wedding anniversary.  Scarlett is nearly five months old.  But what really stands out for me this weekend is that it was a year ago today that I took Reece into Urgent Care and he had his blood drawn.  So it means that it is an anniversary of the beginning of an incredibly stressful road.  But, thankfully, time moves forward and the more we encounter these anniversaries, the more we move through them.  We are one day closer.

The kids and I visited my parents last week as Terry was on the road.  It was bittersweet to go there as I often did with Reece when Terry was traveling.  I hadn’t been there since Christmas when we were there as a family.  He absolutely loved going to visit Grandma and Grandpa and often talked about going there while he was in the hospital.  His bed is in my old bedroom and after we arrived I spent a minute just lying on it and remembering him.  I actually like seeing it there; he loved his bed and missed it while he was away in the hospital.  The first time he visited home in early April, he practically ran to his bed.  He couldn’t walk on his own at the time, but when we got to his bedroom he dropped our hands and moved as quickly as he could to get up onto it, nearly falling as he crossed the room.  When we helped him onto his bed, he just sat on it and grinned and stared at it.  It was as if he had never in his life been in a bed before.  I know he likes that it is at my parents’ house now.  I also have a feeling the girls will like sleeping in it when they are old enough.  If they don’t sleep in it, I will.  We always said that Reece had the most comfortable bed in our house.  It makes me smile just thinking about him all cozied up in it.

We had a half birthday party for Britta today.  Her birthday was two days after Reece’s pulmonary hemorrhage in March.  As Reece was in the PICU, we didn’t see her for the two weeks surrounding her birthday–didn’t ever get her a gift, sing to her, or celebrate–nothing.  It seemed appropriate, now that the dust has settled a bit, to celebrate her turning two.  Plus, she loves to talk about birthdays, so we figured this was as good a time as any to have a party.

Over the last couple of weeks I have had several people reach out from various places and times in my life to share unique things they experienced during the loss of a loved one.  In their sharing I am learning how important it is to safely discuss things and how individualized grief is.  I am grateful that it somehow feels safe to share some level of detail on this blog.  And I’m grateful that people have felt safe in sharing their own personal feelings with me either regarding Reece and his life or in regard to their own loved one that has passed away.

Lastly, I talked to Reece’s primary BMT physician about the autopsy taking so long.  We still haven’t received the full results.  When we do, we will go to the U of MN to discuss them in a fair amount of detail.  I asked her to call me last week (we have been emailing otherwise) to reassure me that nothing was awry with the results.  She assured me that she believed it was a matter of getting the full write-up, but not because of some strange findings.  And why, you may be asking yourself, does it matter at this point?  The results are the results.  Well, it means a great deal to me to know that things were handled appropriately and with the utmost integrity.  It is a respect thing for me.  She received the preliminary results in July, which describes what they found visually, but it does not offer the full detail from the tests they ran.  She did share with me that the lungs were quite sick and likely the main issue.  There were some other things going with various organs as well, but all-in-all everything they saw was consistent with what they believed to be going on at the time.  There were no big surprises based on the initial results.  It is painful to talk to someone about your child’s body failing.  But I need closure on the medical side of things and I am anxiously awaiting getting the full results and having the discussion.  Perhaps after we have that discussion, I will explain what actually happened those last couple of days.  Or maybe I will just let it remain in my memory.  But regardless of what comes out on the blog, I have come to realize and find it important to share that our hardest day of Reece’s life on Earth–his last day–was also his best day on Earth.  There’s a lot I don’t understand about what happened, but I fully believe that is true.


Filed under Bone Marrow Transplant, This and That

Three Goals For One Year of Learning

I had a great day, yesterday, returning and reconnecting at BSF.  Admittedly, I was looking forward to BSF starting (which was yesterday), but I was also dreading it.  The only reason I was dreading it was that I knew I would be introducing myself and our family, including our circumstances with Reece.  It was another day to check off a “first time without Reece” moment, so there are always mixed feelings in doing so.  It was the first time going to BSF without him and yet not the first time we were back at Christ Presbyterian since the transplant.  Reece’s private funeral service was in the CPC chapel.  CPC graciously allowed us to do it there and it was the perfect place for it; he spent a lot of time praising the Lord in that chapel.   On BSF mornings, we usually entered CPC through the chapel door because it has a handicapped button that automatically opens the door and a ramp that follows beyond the doorway–Reece loves ramps!  So we would maneuver through the parking lot with me gripping onto Reece’s hand so he wouldn’t run off and get hit by a car.  But once his feet hit the sidewalk he was gone–down the sidewalk, through the doors, down the ramp, with me yelling, “Reece, wait up!!!”  This happened every week.  I wouldn’t actually catch a glimpse of that blonde mop of hair until I got down the ramp inside the church, with Britta in tow, and there Reece would be, sitting on a wooden bench, grinning ear to ear, swinging his legs, watching me with glee as I huffed and puffed to make sure he had made it there safely.  We now call the chapel entrance at CPC “Reecie’s Door”.

Anyway, back to the dreaded introductions.  I’m the kind of person that cries because of the emotional concentration or build-up of a situation, so I knew that I would not be able to introduce myself without shedding tears, simply due to the circumstance.  There is nothing wrong with crying, but it annoys me when my own crying prevents me from saying what I need to say, or doesn’t accurately reflect what I am feeling.  (Case in point, when I am really mad, I cry.)  During group intros, I got to Reece and couldn’t eek out much after saying he passed away.  I was able to get in a few sentences in a sort of circle-back-to-me-to-finish way, but I was annoyed with myself.  I had several things I wanted to say about our experience and I felt like my crying got in the way and did not accurately reflect the emotions I feel about the situation.  Oh, and once I started crying, I did another thing that is one of my biggest pet peeves; I apologized for crying.  I try really hard not to do that.  It is perfectly okay to cry in front of people and let the room shift in their seats a little bit.  I was actually not apologizing for crying, but rather for not being able to say what I wanted to say because of said crying.  Oy.  After intros, our discussion leader asked what one goal we have for the year.  The truth is, I have a couple of hopes for the year.

First, after spending many months isolated in the hospital, I want to enjoy learning about God in this type of setting and reconnecting with this group of women.  I need to rest and recharge the spiritual batteries.  There were so many weeks when I would think about how I absolutely had no option to go to BSF (or any other group or activity, for that matter) and no way to connect in any meaningful way with others.  Yesterday, I sat near the back of the sanctuary during lecture, stared out into the group of 500 women, and soaked it all in.  Did this really just happen to our family?  Wasn’t I just here listening to lecture last week?  Nope.  Our situation forced us into isolation.  And while the Bible lay on the shelf in Reece’s room and provided a comfort for me at certain times, it was clear that the verses and hymns I had committed to memory, the lectures or sermons I had heard and retained, or the snippets of conversations with friends that I could recall served an important purpose and were critical relief for the many, many times we were forced into such dark places and had no time or, frankly, no energy to begin to try to study the Bible.  I recognize, now, that the time when I feel like life is just bumping a long at a steady pace is the time (and I now view it as the luxury) to build Biblical knowledge, commit verses to memory, and fuel up with other people so that when life demands living in a solitary place, I am prepared for it.  Because I know that while the circumstances may be different, there will be another time where being in the Word isn’t physically or mentally possible, and I want to be prepared.  I’m going to try to savor this year as best I can.

Second, and this one I didn’t realize until after I left CPC yesterday, I have a lot to learn about praying on behalf of others.  I want to get to the end of the year and believe I have made progress in passionately coming before the Lord not only for my family and me, but also for others.  It took me 45 minutes to leave yesterday, because I ran into nearly all of Reece’s BSF children’s leaders as I was checking Britta and Scarlett out of childcare.  I had several discussions about prayer and stories shared with me about personal prayers for Reece.  These stories, combined with the interactions we have had with a few of our dear friends since Reece’s passing made me realize that people were not only praying for Reece and his health–they were emotionally invested in Reece and laying their requests before the Lord on our behalf.  It has been eye-opening for me to hear of people and their deep emotions for my son.  We absolutely felt covered in prayer in a tangible way.  It is hard to describe how prayer can be tangible–you have to experience it for yourself.  While we felt and continue to feel deep emotions in regard to Reece, it never occurred to me that other people would also have such deep emotions about him.  We have had people share stories of anger, sadness, joy, grief; many people have shared with us that they experienced these emotions in their prayers to God.  It has been both comforting and also convicting for me to hear this.  I’ve made it a point that when I commit to praying for someone, I follow through in doing so.  But how many times have I had prayer requests come through each week and I haven’t made it a priority to pray for others?  Or I’ve prayed in a sort of obligatory way, but with very little passion or emotion.  I’m ashamed to even admit it.  I need to get my act together.  I’m posting this outright because 1) I am so thankful that people lifted Reece up in prayer and with such love and heartfelt compassion for his life and 2) I need to step up my praying for others.  I never realized how impactful and comforting prayer is until we went through this; until we were in a situation where we often had to rely on others to hold us up in prayer.  Having someone intercede in prayer on my behalf is a tremendous blessing.  I want to bless others in the same way and do so with passion.

Third, I’ve found myself in an honest pursuit of knowing about Heaven and the people who Reece spends his time with.  I read the book of Revelation a couple of weeks ago.  While I have read it before, I still find it confusing.  After reading Revelation, I jumped to Genesis and remembered that our BSF study this year is in Genesis.  So, I decided to hold up on reading any more on my own for that reason.  I have read Genesis before, but never with such a curiosity about Heaven.  I spend a lot of time each day thinking about Heaven and what Reece is doing there, so I feel like I need to learn as much as I can about the place.  Genesis discusses Creation, The Fall (more on this later), and many people (amongst other things) that we commonly think of as “Bible characters”, but they are actual people who actually live in Heaven–with Reece.  For example, I have to believe that Reece thinks it’s pretty cool that he has met Noah and I wonder if the Little People Noah’s Ark play set in our play area even does justice to what the real Noah looks like.  But Reece knows what he looks like.  I want to learn as much as possible about the Place and who lives there.  My child has stuff to do in Heaven and I would love to hear what he has to say at the end of his day at our dinner table.  I’d love to hear about the conversations he had, the projects he made, the friends he met.  I know he’s busy, but since I can’t hear him tell me about it right now, I’m going to have to settle for learning about the place as best I can through the Bible and other Biblically-based books (I am also reading Randy Alcorn’s “Heaven”).

Before Reece died I told several people that if we lost him on Earth, a part of me would die right along with him.  Now I’m realizing that I was mistaken.  When Reece went to Heaven, he took a piece of me along with him to live there.  Part of my mind is constantly in Heaven with him.  As I go about my day, there is always something that is pulling my thoughts Heaven-bound.  I think of it as a gift, as I would have never have freed up my mind enough and forced myself to think about Eternity with such intensity, without the physical loss of Reece.  It took such a great loss on Earth to gain whatever limited eternal thinking I have.  As life would have it, much like Reece used to race into BSF with me tagging behind, so he has raced off to Heaven.  And I’m still here, trying my hardest to keep up, on my own personal journey to get there and be reunited with him.

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I Miss Reece

This is a very obvious statement, but–man–do I ever miss Reece.  I’m including a picture for my own benefit, as I miss those bright, twinkling eyes.  How in the world do I face the rest of my life here without him?  How do I wake up every morning knowing that he will not be here, in our home, with our family, doing his deal?  When people ask me how I’m doing I say, “I’m one day closer.”  That’s all I’ve got.

I received a couple of comments through various sources about the mother I chatted with in my last post and how it is difficult to know what to say to someone in our situation.  I realized that I need to clarify a few things about that particular story.  My reason for bringing up the story in the first place was to give an example, in an attempt to provide further explanation, of why the social scene–even the surface level social scene–is difficult right now.  There is awkwardness in our situation for us, as well as others.

It is awkward for our family because we have to figure out a way to discuss Reece on a social level, which takes quite a bit of energy.  It takes energy to discuss him and even more energy to internalize and process whatever way the person on the receiving end chooses to react.  To fail to mention Reece in regard to our family feels entirely wrong.  In the process of grief, there are some days that I do not have the energy to face other persons’ reactions (primarily people who have no association with our family) and I choose to not put myself in those situations as a protective measure.  There are some days where I have the energy, any exchange of information goes moderately well, I manage it well, and then days later it comes back to bite me.  Therefore, avoiding social situations (depending on what it may be) is absolutely necessary in some situations right now.

It is awkward for others, because they don’t know what to say and often times are not expecting that such a heavy topic will come up.  The story I shared about this woman was the perfect example of this.  It was not a bash on her or anyone else and how they react.  She entered into a conversation with no ability to predict the turn it would take.  I will admit, there are times when I question the level of empathy or personal awareness that a person might have in how they react, but we generally give people the benefit of the doubt.  We have been in the “awkward family circumstances” bucket for nearly a year now; we do understand that people have good intentions and that it isn’t easy to know what to say.  Trust me, we don’t expect people to know what to say.  That is why, at times, it makes sense to self-select out of certain activities for the time being.

That said, we really appreciate it when people we know and who know about our situation ask how we are doing and initiate contact.  I know this is a difficult thing to do, because there is an expectation we place on ourselves as humans to know the exact right thing to say.  But as each person’s situation is different and each person copes with grief and loss in a different way, the best thing (in my opinion) to do is ask how one is doing and acknowledge that you are at a loss for anything else.  It goes a long way and means a great deal to us.  We don’t expect that anyone has the perfect words or a way to “fix” things.  Just like we think about our girls every day, so we also think about Reece.  And just like any other parents, we love discussing our kids and that includes Reece.  We talk about him as a family every single day.  When Reece is avoided in conversation it feels unnatural.  So, while we understand the default is to not say anything to us, to leave us alone to grieve, I would recommend erring on the side of saying something with good intentions versus not saying anything at all.  I recommend reaching out versus avoiding us.  I can’t express enough how thankful I am for people who are willing to bridge the friendship gap with the understanding that right now, we struggle to meet people at the halfway point.  It’s just the way it is right now and it’s not anything personal.  We are trying our best just to get through daily living.

And, if you want to truly help us out, you can continue to pray for us.  We need it.  Many thanks.


Filed under This and That