Monthly Archives: August 2012

Dear Clarity

I’m searching for clarity on how to proceed forward with Reece’s memorial (ok, clarity in my opinion on it, since Terry also gets a say in how we go forward).  I’ve struggled in trying to understand if we should be pouring our efforts into something on the medical side of Reece’s situation (MDS research, BMT-related patients, etc) or on the faith side of Reece’s life.  This isn’t to say it can’t be both, but we need to have a starting point and some sort of direction.  I have been waiting before exploring too many options on the medical side, as I want to meet with a couple of Reece’s BMT docs to get their opinions.  We have ideas on where we could possibly be impactful, but I don’t want to double up efforts with the hospital and I also don’t want to bite off more than I can chew in regard to what we want to take on.  So, we have been waiting to get Reece’s autopsy results back so we can discuss the medical options in going forward with a memorial.  We’re on hold for a couple of weeks.  The other side of the coin is the faith approach.  I’m not sure exactly how that would all look or where we would focus our efforts in that regard either.

I ran past one of the schools that Reece might have attended for Kindergarten this year.  Surprise–today was the first day of school!  This day crept up on us; we thought the first day of school for Minneapolis was next week.  It was odd to see all the kids getting dropped off.  This would have been a big day for our family–a Kodak moment.  Now it is passing by like any other day.  But it’s not any other day.  There is a hole that can’t be filled; it’s like having an empty stomach except it is heartache and there is nothing that can be done here on Earth to satisfy it.  It just is what it is.  I’m not going to make excuses for it and I’m not going to avoid it.  I’m sure there are other people out there today going through the same thing–missing out on the same thing.

Also during my run, I thought of and prayed for one of Reece’s BMT neighbors at Amplatz who is currently in the PICU fighting for his life.  He’s had a long road in BMT, in many ways very similarly to Reece.  He’s a fighter.  There’s the whole hospital side of things that we are still recovering from; I suspect it falls into the PTSD category, although I’m only putting that term out there for explanatory reasons, versus some sort of dramatic effect.  Every day was difficult; there are many traumatic and life-changing events that we experienced.  Even one day in the hospital was brutal.  Multiply that by however many days we were there.  I feel such compassion for the families going through that process.  It is still too close to our timing with Reece to be able to meaningfully put any time into supporting BMT efforts, but once we have a little distance, I know I will have a desire to stay connected to BMT families or Amplatz in some way, shape, or form.  Reece did live about a tenth of his life there.

I also prayed for the family of a preschooler who drowned yesterday.  I neither personally know his parents (friend of a family member), nor understand the pain of losing a child due to an accident.  Yet we are lumped into a similar category of grief over a child.  I immediately can relate to this family–knowing, loving, and losing a child.  It’s a genre of grief and loss, if you will; losing a child you knew, spoke with, laughed and cried with, played with, read to, hugged, kissed, and tucked into bed at night.  When we were making preparations for Reece’s funeral, the funeral director told us how rare it is these days to have a child die.  They don’t see it very often.  He works in the “business” and has for 40 years, so he should know.  It seems we have “cured” enough diseases and prevented enough accidents that the mortality rate for children is much lower–certainly a good thing. We keep getting fliers in the mail on infant loss which, for me, is hard to relate to.  I have no idea what it would be like to lose an infant.  Yes, there is a shared theme of grief and loss, so I guess I can relate on that level, but the circumstances are different.  What do I do to navigate child introductions, Reece’s birthday, picturing Reece in places he frequented, continuing relationships with friends that included Reece’s presence?  There seems to be a fair amount of resources out there on infant loss, as well as support for kids who have lost a parent.  But trying to find the group of people who have lost a child; they’re out there, but it isn’t an easy group to locate.  I need to find those people.  And, interestingly enough, we have had a few people reach out who have suffered the loss of a child.  Once they know your situation, they approach to some extent.  It has been helpful to know that we are not alone, even though we logically know we are not.

I guess answers to my questions may never come and, if they do, they will take time and living life through it.  There are no easy answers.  I know with all my heart it will be used for something and I’m antsy about it.  More immediately, I need to know where we should focus our efforts in memory of Reece.

Dear Clarity, I need you.  Sincerely, Terri.

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Filed under Bone Marrow Transplant, This and That

According to Plan

Terry was on the road this week for the first time in–well–a very long time.  For some reason, when he travels, things never seem to go according to plan.  Something always crops up around home.  We had this nice, buttoned up plan for the week, complete with visitors and the help of my nanny.  Our nanny became ill over the weekend and so we were forced back into our “old” routine whether we wanted to be or not.  Looking back, this seems to have been a good thing in disguise, as it allowed me to test the waters on how things will go when I no longer have the additional help around the house.  It isn’t so much that I can’t handle having two kids on my own.  It is more often than not a need to have assistance from an energy perspective and to not be alone with my thoughts all the time.  Much of the time I am “with it”, but there are some times where I have been lost in my thoughts or have been exhausted, seemingly out of the blue, so her help is invaluable to us.  Also, for most of the year, we have had one on one kid management.  Going back to managing two kids, full-time, is a bit of a transition.

Reece was such a help to me when Terry was on the road.  He was quite the little reporter when it came to Britta, so I always had a handle on the pulse of the house with him here.  He is a talkative kid, too, so I had him here to keep me company.  And, my favorite part of Terry traveling, was that Reece would sleep in bed with me.  He is such a snugglebug.  In fact, even when Terry was home, there were many nights where he was booted out of the bed because Reece would wander into our room and want to sleep with us.  It was a bit of a squeeze for three.  We didn’t allow this when he was a very young child, but as he got older, we let him do this more (thunderstorms, bad dreams, or just because).

Going into this week, I thought for certain that Reece being gone would seem even more painful than normal.  I’m not going to lie–I miss him like crazy whether Terry is traveling or not.  But I thought it would be even more so this week.  I am finding, however, that due to the circumstances surrounding Reece’s passing, it becomes such a far-fetched daydream for it to even make sense to have him here.  I have spent months sleeping in the house by myself, so it no longer feels odd being the only adult in the house.  Sleeping with Reece in our bed hasn’t been the norm in a long time.  And then to imagine him being here, with Terry on the road, requires Reece to be a healthy child.  Terry didn’t travel while Reece was critically ill.  So now I have to go so far back in my memory–a year or so–to get to where that even would make sense.  Had Reece survived the PICU part of this last hospital stay, he would still be in the hospital recovering…for a long time.  And so, it becomes a trap of sorts to envision what would be perceived as a “normal” routine for five-year-old Reece to be here.  It was never meant to be that way.  If we had lost him to some sudden circumstance, that might be a different story.  But for us–wow–what a path we were forced to take to get here.  Even when I see parents and kids in Target buying school supplies, it is emotionally confusing.  If Reece was a healthy child we would be doing that, so I feel twinges of sadness.  But Reece had a terminal illness, so right there, “If Reece was a healthy child,” becomes unimaginable.  We knew months ago that he would not be going to Kindergarten this year, regardless of his recovery status.  I have been grieving that for months–the loss of the expectation that he would begin school.  We’ve been grieving the loss of the plan we had envisioned for him for quite some time.  If Reece never had a diagnosis of MDS we would be getting him ready for school.  I get that far mentally and then I’m abruptly stopped in my tracks, because it no longer makes sense to keep going down that path.  I can’t lop off the MDS part of him.  The last time I saw him operating as a healthy child was nearly a year ago.  I don’t know Reece as a healthy five-year-old.  Therefore, I can not picture him getting ready for Kindergarten.  It wasn’t meant to happen.  Then my sadness becomes truncated in the reassurance of a better plan for Reece–one that involves his perfect health and full knowledge.  I know for certain is that he’s not wasting time being sad about not attending Kindergarten this fall.

So that brings me to something else I did for the first time in a really long time.  I sat down in my usual spot in the house and prayed.  It isn’t that I haven’t prayed for months, but sitting in my regular spot to do so hasn’t happened in a long while.  It felt good, though.  I usually sit on our couch next to our bedroom.  I used to do so right after Reece went down for a nap and he usually napped in our bedroom.  So, Reece and I were often only separated by a wall while I would do my Bible study and prayer time.  As Reece grew older and was able to get out of bed on his own, it often took several tries to get him to rest during nap time.  I would get him to lie down and then a few minutes later I would see his shadow by the door, or hear him sucking his thumb, or see him peering through the crack in the door.  I would chase him back into bed until he either nodded off or we decided he could watch a show quietly.  On Monday, as I closed my eyes to pray, I realized how odd it was to not have Reece in the next room.  I considered as I was talking to God that he could look across the fields of Heaven and actually see Reece.  At least in my limited human imagination that is how I envision it.  Regardless of how it looks, Reece is physically with God.  So spending time with God in prayer is strangely comforting in that way.  It is almost as if Reece was handed off to God and now during my prayer time, instead of me chasing him back into bed, God gets to chase him around Heaven.  I love that.

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The Sniffles

I was sitting in a coffee shop getting ready to blog and I overheard the conversation next to me.  One man tells the other about how he hasn’t experienced much joy in the last couple of weeks due to some sort of struggle with his job.  The other man replies, “It’s a season of life.  An episode.  It’s like when you have strep throat or the flu.  For awhile you feel under the weather and you rely on antibiotics.  Then you get on the other side of it.”  I’m going to use this blog post to document something that I experienced in watching Reece’s struggle with his health.

I remember having a conversation with someone when I was middle school-aged regarding sin and living in a fallen world.  We were discussing how every sniffle, every cold, every illness was a result of man’s sin stemming from Adam and Eve. That once sin had occurred, illness entered with world (as did many other things).  (We discussed the general category of sin itself–not that each illness you get is a direct “punishment” for something you have done.  I don’t believe we are struck with illness as punishment for our specific actions.)  I remember thinking, “Yes, ok.  But surely we’re talking more along the lines of the big illnesses…cancer, HIV…the life-threatening things.  A cold is minor; a cold isn’t a big deal, it’s just inconvenient.”

Fast forward many years and we are now in the hospital with Reece.  While we are treating him for MDS, we are running day-to-day interference on germ-control in the environment (hand sanitizing, sterilizing everything, wearing masks if we have even the hint of a sniffle) to prevent common illness from entering Reece’s body.  This proves to be an impossible task that nearly drives me crazy.  Everything in any environment is literally crawling with germs.  It’s no different from those 20/20 episodes you have likely seen where they shine a black light in a hotel room to highlight the filth.  Still, we do our best to manage the germs in an effort to help Reece avoid getting an infection.

While we haven’t yet heard the results of Reece’s autopsy, one thing we do know, is that he was quite sick at the end of his life due to adenovirus.  In a healthy person, this virus may set you back for a few days, but a person with a normal immune system can generally handle it.  In an immunosuppressed person like Reece, this virus can be lethal.  Since Reece’s passing, I’ve done a great deal of thinking about this.  The doctors have always told us that while we took preventative measures to keep the environment clean, the biggest threat to Reece was organisms already living in his body and that adenovirus was not likely to have been given to him in passing, but rather it was something that had been in his body for years.  As I contemplated this, I considered the conversation I had all those many years ago.  I never considered how our bodies work and fight off things that we call “the common cold” or “a stomach bug”.  Actually, without an immune system (a system which you don’t have to render any conscious thought to operating), these seemingly harmless–albeit annoying–germs are deadly.  And the really amazing thing is, God didn’t create sin and illnesses, but he gave us bodies equipped to deal with them.  That’s a big love offering, if you ask me.

There were many times in Reece’s last weeks of life where I would watch him breathe on the ventilator and think, “He looks so peaceful and calm.”  Other than watching his vital signs, you would have never known the battle that was going on internally with these infections.  The truth is, once his immune system was wiped out, there was no perfect way to make up for it.  He took 75 doses of various oral medications every day to try to prevent illness, but it still didn’t replace what God gave him to naturally fight off germs and diseases.  Other than this hospital experience, he was hardly ever in the doctor’s office for sickness–a healthy kid.  And while we have these “advanced” drugs to fight off infections, I will never again mistakenly assume that it is the drugs doing the work.  A drug is always a sidekick to the robust immune system designed by the loving God to protect us all every single day from diseases that plague us, but stealthily move about under the minimized guises like “the sniffles” or a “sour stomach”.  These only seem minor to us because we can automatically manage them and get rid of them.  And “getting on the other side” of any illness is purely a function of God’s sovereignty.  We wouldn’t be here if we were relying solely on antibiotics to get us through things like strep throat.  God didn’t create the sin and illness, but he knew we’d be dealing with it.  So, being the responsible and loving Parent, he gave us a way to deal with it so that we can have the opportunity to live in health, experience joy, and move about the day without giving much thought to it.

I’m in awe of this and humbled.

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Transitions

Another day has gone by and we are floating through life in a somewhat normal fashion.  I took Britta with me to the gym for the first time since December.  She did not remember being there, despite the many hours she has played there—with and without Reece.  Reece spent many, many hours in childcare there and very much enjoyed himself.  We go to the YMCA which, in my opinion, has superior childcare to any other workout facility I have been to in the metro area.  In fact, the staff that watched Reece sent our family a lovely card after he passed away to express their sympathy.  Upon seeing us today, we briefly discussed Reece and they encouraged us that they were glad to see us back there and also excited to meet Scarlett in the near future.

I have come to the conclusion that avoiding places and things that remind us of Reece is overall not the right way to go—at least for the time being.  My knee jerk reaction after Reece passed was that we needed to switch gyms, sell our house, trade in our cars, and generally avoid many places where we have memories of him.  Now I have begun to think about it differently.  I love the memories I have of him.  Sometimes they feel painful and sometimes they make me feel content.  Regardless, if I avoid anything associated with Reece that may bring back memories, I am afraid said places will become untouchable, only painful, and never approached in a healthy way.

Likewise, I have yet again accessed the advice of our good friend, Brad, who told me nearly a decade ago that it is quite alright to “sit” in whatever emotional place that the moment brings.  I’m finding that grief is an interesting (for lack of a better term) animal.  It washes over at certain times and in many unexpected ways and forms.  However, I refuse to avoid it, let it fester, and grow into something more problematic.  Grief is purposeful and isn’t the problem; avoiding grief is.

Speaking of avoidance, the one thing that is tripping me up is the unavoidable looks we receive of people feeling sorry for us.  I completely understand it, I just wish there was a way to somehow let people know that we are quite alright.  I felt this way when Reece was ill as well.  I need a t-shirt that says, “Please don’t feel sorry for us—we actually really love our life.”  I get this peculiar feeling that people somehow assume we have a bad lot in life.  I know that feeling stems from all the feelings I have experienced when I have heard about other people’s families and the things they are dealing with.  I somehow have assumed that because they don’t have a standard path in life, it is inferior to a path that appears “normal”.  What a load of crap I have bought into.  I’m now sitting in the reverse mentality of “the grass is always greener” and I think it’s best described as, “The grass in my yard is green enough for me.”

I have also concluded that I’m not sure I would read my blog if I was someone else, because it is where I am going to sort through some heavy things.  The purpose has shifted for the time being and will likely be more of a personal diary until we figure out Reece’s memorial.  We want to keep it up and running and perhaps use it for other purposes once we’ve decided what to do in honor of Reece.  We’ll certainly update people on how that is coming along.  But other than those updates, there is no buffer of unemotional info.  Everything now is more along the lines of processing grief and living regular life.  This serves as a “heads up” that I will be updating the blog, but right now, it will be mostly sorting through life in a strange way.  This isn’t an apology, but I am aware of the rawness of our life and I acknowledge that this blog is in transition, which is an accurate reflection of our life.  I’m feeling led to post some things we are experiencing, because I flat-out can’t reintegrate into regular activities the way I had envisioned doing when I assumed Reece would make it through his transplant.  At this point in time, I can’t just pick up and connect in person the way I had assumed would happen.  Therefore, I hope to 1) process my feelings, 2) connect with others who may be going through something similar, and 3) keep a circle of our friends and family up to speed on how we are doing as a family.  And, let’s face it, I’ve come to appreciate this space.  Like I said in my last post, it feels like home.

Have a blessed day.

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Filed under Family, This and That

A Lot of Pondering Heaven

Terry and I visited the cemetery this afternoon to order Reece’s marker for his grave.  This year has always been earmarked as the year that Reece would be heading to Kindergarten.  It seems strange to be ordering a grave marker versus buying school supplies and gearing up to begin the “school phase” of life.  Yet here we are, playing the hand we’re dealt like any other family.  We just happen to be doing things out of what would seem to be a logical order in life.

Going to the cemetery has, overall, been a peaceful experience.  I have a few friends who want to bring their kids to see Reece’s gravesite–kids who knew Reece while he was here on earth.  I highly encourage them and anyone who desires to do so, to visit where his body lies.  It is peaceful and meaningful and not a scary experience.  We know that Reece isn’t lying in the ground; we know that his body is there, but Reece isn’t there.  While Britta has been told that Reece is in Heaven (she still brings up Reece being in the hospital), she does not have any association of Reece being buried at the cemetery.  We will have to do our best to explain this in some meaningful way while the girls are so young, so that they will accurately understand that we honor Reece’s earthly body by burying it in the cemetery, but that Reece is, in fact, in Heaven with Jesus.  When we tell Britta that Reece is in Heaven, she smiles and points up, and says, “With Jesus!”  It is a lovely thing to see how joyful she is when we tell her where Reece is…it isn’t a sad thing in our house.  Although, as the girls get older and gain a better understanding, there will certainly be tears over this reality.

I’ve been thinking intensely about Heaven, basically every day, since Reece’s passing.  It seems unnatural to have Reece located somewhere that I have not checked out for him first.  I want to know what it looks like, where exactly he is playing, who he is hanging out with.  I want the details!  I’m not worried about it; I just wish I could actually see it.  I guess my imagination will have to fill in the gaps that exist between the details laid out in the Bible.  Never has my mind and imagination felt so limited as to picturing the daily details of Heaven and Reece living there.

I read a book a couple of years ago called, “Heaven is for Real”.  It’s about a boy who, at three years of age was very ill (a sudden and acute onset), and claims that he went to Heaven for a very brief period of time while he was in the hospital.  I highly recommend you read the book.  The information this boy knew regarding his family members, after having this experience, was otherwise inexplicable.  He describes Heaven in detail in this book and, while I read it prior to anything happening with Reece, I very much felt that this is a true story.  I think God uses kids in unique ways.  Reece was touched by God–much deeper than we will ever know–but enough for me to understand that there was communication that occurred that we were totally oblivious to as parents.  We only saw the tip of the iceberg with him.  Anyway, I read the adult version of the book a couple of years ago, but was given the children’s version of the book the day of Reece’s memorial service (thank-you, Kate!).  I paged through it a day or two later and it brought tears to my eyes.  No, this is not the Bible, so I have to be careful to not count on every detail being the God-breathed truth.  But to see the illustrations and information given in such a pure and simple way, and then picture Reece there, was a moving experience for me.  While Reece knows God and Jesus, he is still a kid.  He sees things from a kid’s view.  It touched me that he perhaps is experiencing Heaven in a similar way and would describe it as such; it brings me deep contentment to think of that.  With that contentment comes healing and a great deal of comfort.

One thing that I think is interesting about this boy’s account of Heaven is that he met his great-grandfather there as young man around the age of 30.  This is a man that he never knew on earth.  His account of Heaven includes that no one is old there and that there are many children in Heaven as well.  As a mom who said good-bye to her son as a five-year-old, I very much desire to be reunited in Heaven with Reece as his five-year-old self.  I miss his embrace as a healthy child, uninhibited by his gravely ill body.  And I love that, according to this child’s account, it is possible that no matter what age I die at, it is probable that in Heaven I will be a similar age to what I am now–the way Reece remembers me on earth.  I love that.  Even if those details aren’t the way our reunion occurs, I love thinking about it that way while I am here.  Regardless, the reunion will be awesome!  And, as my good friend pointed out to me, I get to take a tour of Heaven with my five-year-old–through my child’s perspective.  Who doesn’t want to explore something with a child?  They have such a unique and fun way of looking at things.  I can feel his excitement about Heaven right now, even though he is no longer physically here!

In all of my pondering, I’ve concluded that Heaven gets inaccurately pinpointed as a place that will be whatever we want it to be, as a function of our self-seeking and pleasure-filled daydreams.  For me, that mindset is a trap.  When I was a kid I used to think that when I got to Heaven I would sit around and eat cheesecake every day, because it was my favorite food.  It’s comical for me to think about it that way now.  Maybe cheesecake exists in Heaven, but I’m thinking God has a bigger purpose for all of us than sitting around on a chaise lounge eating creamy, sweet, decadent, mouth-watering desserts.  It doesn’t seem logical that he would spend all this time with purposeful intentions for us here and then we get to Heaven and just hang out all day doing nothing but whatever we feel we should be entitled to do.  I don’t think it’s a place that we do whatever we can imagine as fun here on earth.  It’ll be better than our best dreams here, but we can’t imagine it.  And so in terms of Reece, I do my best to envision what he is doing.  I know it includes much time praising God.  I never, ever envision him in his sick body–he is healthier than any person walking on this earth.  He is perfectly healed and I know his energy level is even higher than his healthiest day on earth.  Still, I am grossly limited by my human imagination; it is frustrating.  Patience is a virtue I struggle to possess and so, as life would have it, I am tasked with learning how to do what seems impossible for the rest of my time on earth–wait.

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I LOVE Good News!

As you have probably already guessed, we received word back today that Scarlett’s bump is benign.  Woohoo!!!  It is a routine dermoid cyst that was growing inside the bone.  I am told it is a “classic” dermoid with nothing to be concerned about other than doing two follow-up MRIs (three months and 15 months post-op) to ensure they removed all of it.  If, by chance, they did not get it all, it could continue to grow.  However, dermoid cysts are singular events, meaning they neither grow back (unless part of it was accidentally left behind), nor occur elsewhere in the body.  It would have had to have been removed at some point, as it would have continued to grow and create spatial issues for Scarlett.  The doctor was pleased that we removed it when we did.  Scarlett has recovered well and is basically back to her happy, laid-back self.  We are glad to be receiving good news and now are shifting our focus back to our life with our girls, managing our grief, and figuring out where to direct our parental energies dedicated to Reece (more on this last part later).

I know I have been hopping back and forth on what to do with this blog.  For now, I will continue to post here, versus starting a new blog.  Long story short, Terry and I agree that this one feels like home.

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All Is Well

I am pleased to report that all is well.  We checked into the hospital at 7:30 am and things have gone smoothly all day.  Scarlett handled surgery well.  She came out of the OR ready to chew her hand off with hunger and, by the time we made it into recovery to see her, she was chugging a bottle of Pedialyte.  She has never had anything but breast milk, so she must have been desperate!  She is wearing gauze around her head that is wrapped like a turban, so we can not see the incision site or the stitches.  I asked the doctor how many stitches she received and he laughed and said, “I didn’t count!”  So, it is many.  The surgeon reported that the bump was easy to remove.  It was surrounded by bone other than the very top where the bone had eroded.  He removed the bump, which seemed soft like tissue, and a small amount of bone around it.  Hopefully, the test results will be back this week.  He did not think the bump looked cancerous.

Scarlett has been dealing with pain all day and has been fussy.  We are spending the night on the general pediatrics floor, but expect to be home tomorrow.  I actually wish we were in the PICU since we know the staff–but for no other reason than that.  One of our favorite doctors from the PICU came to the OR this morning to greet us and said they would have liked to have us down there just because of the relationship we have with them.  Thankfully, Scarlett has no medical necessity to be there, so we are now on an entirely different floor and having a blessed and mostly uneventful evening.

I just wanted to update you all that things are going well for Scarlett and tell you that we appreciate all of your prayers and support.

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