Monthly Archives: July 2012

MRI

It turns out that after many calls back and forth between the clinic and me, Scarlett will have her MRI tomorrow morning.  Her neurosurgeon will be in surgery all day on Thursday and would not have been able to meet with us after her previously scheduled MRI.  I was neither willing to wait a day for the results nor wait a day to do the MRI (so the results could be given right after the procedure), so they pushed it up to Wed.  I’m not sure why they didn’t originally schedule it for Wed. anyway, but it doesn’t really matter.  She will be in tomorrow morning and we will at least have some more information.

We would appreciate your prayers for her health and safety and for our sanity.

Being back in clinic wasn’t so bad.  I thought it would be a lot harder to be there than it actually was.  We rode up the elevator with another BMT family.  The child was walking, talking, and acting like a normal kid.  He or she (I was so lost in my own thoughts I honestly can’t remember much about the child) was wearing a mask and getting off at the 9th floor.  It was easy to start comparing the child to Reece.  There is no sense in doing it–it’s a mental trap.  It was strange to have no identifying child to BMT as well.  We have all this history there and, going to a different floor in the clinic, they had no idea about our history with Reece.  It was almost like being a stranger in your own home.

Inevitably, Reece came up in conversation.  This time it was because we were explaining our need to have a quick diagnostic process and our strong desire to get the bump removed, if possible, as soon as we can.  Our urgency needed to be explained.  And despite being back at Amplatz and its affiliated clinic (thus, they are trained to deal with the big diagnoses), there is no way to prepare the doctors for the bomb you are about to drop on their lap.  Our five-year-old went through BMT in January (which the “BMT” term alone produces a concerned look) and he passed away this month from complications.  Bam.  And there you have it.  You’ve lost them–even if only for a few seconds–and they are now mentally scrambling to recover.  Thankfully, they are a professional bunch of people, so they recovered well.  There are many people who, despite their best efforts (and trust me, I totally get it) do not know how to respond or what to say.  But it is something that we will spend the rest of our lives dealing with.  Introducing our family in normal conversation will never be without further conversation or, at a minimum, it will send people’s minds racing.

Tomorrow we will be back in the OR.  We had some very difficult things happen in the OR.  In some odd way, I am glad we are back at Amplatz.  First and foremost, they have the best doctors, no doubt about it.  But secondly, I am quickly realizing that the more you avoid places and wall off memories that involved Reece, the more untouchable those places, things, memories become.  We live locally, so we can’t avoid the U of MN.  The more we are in Amplatz, the easier it will hopefully become.  And, hopefully, won’t have a big need to be there anymore.  We’ll see what tomorrow brings.  The MRI isn’t diagnostic, but it should at least give us an indication of what we’re dealing with.  Reece never had an MRI (wow!), so this is new medical territory for us.

We appreciate you keeping our little Scarlett in your prayers.

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Scarlett

I was preparing to pack up this blog and move my stuff to a new home, but I guess that plan is temporarily on hold.  More accurately, I may be typing on both sites for a while.  I have not posted much about our third child, Scarlett.  Our third adorable little peanut was born at the end of April.  She has been such a trooper and my sidekick.  She is a great eater, a great sleeper, and very laid back.  Unfortunately, we now have some concerns with her that are unrelated to Reece and his diagnosis.

About a month after she was born, we were sitting in the BMT clinic and I noticed a small bump on her forehead, near her temple.  Over the course of the next month, I showed many BMT doctors the bump.  They were not concerned, more curious.  During Scarlett’s two-month well check, our pediatrician was not overly concerned, but knowing our situation with Reece decided to have an x-ray performed to put our minds at ease.  It came back normal, but she referred us to Reece’s dermatologist at the U of MN, as they are a pediatric specialist group.   Dermatology was also not concerned, so they referred us to Neurosurgery at the U of MN for removal of the bump.

I hemmed and hawed over whether we should have this treated at the U of MN, considering our history there with Reece.  I ultimately came to the conclusion that we know the U of MN, they have great doctors there, and if anything critical should happen, I would prefer it to be at the same hospital.

So, today, Scarlett had her initial consultation with Neurosurgery.  They, also, were not overly concerned about the bump.  They do not feel it is cancer.  They also don’t think it is a routine dermoid cyst as it feels like actual bone.  Nevertheless, they need to do an MRI to understand what exactly it is.  This will happen this coming Thursday.  Once they determine what it is, they will likely schedule an operation to remove it.  The doctor told us that statistically, it is unlikely it is anything concerning.  Unfortunately, those words mean very little to us at this point.  The rest of the day just felt heavy.  We have no reserves right now.  I feel resentful that Reece’s passing is so fresh and yet we will be right back into Amplatz with another concern.  I hate the waiting period.  I have no reserves.  We have hard memories in the OR of Reece.  I have no reserves.  I do not want my three-month-old to have to go through anything concerning.  Even the preparation for sedation will be upsetting as she can not eat for at least four hours prior.  We know this routine all too well.  I have no reserves.  I have no reserves.  I have no reserves.

Anyway, I know the likelihood isn’t high that this will be anything other than a benign cyst.  But, after Reece’s ordeal and all of the rare things he suffered through from his diagnosis to his BMT complications, I struggle with “likelihood”.  I respectfully ask that you do not send me information on all the bumps you may have experienced with your own children or grandchildren.  All of the info in the world can not really do much for my mental state.  You see, I know the rational side of the bump.  My problem is…I have no reserves.  And I am no longer naive to the hospital routine.  I know that the best doctors in the world do not always have answers.  In fact, they often don’t and they are the first to tell you so.  God’s plan is God’s plan.  So tonight, I am sitting here thinking, “God, please don’t start teaching us more lessons about life.  We’ve had enough learning for a while.”  Please, this time, let what I want also be what He wants.

Thanks for your continued prayers.

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Blogging

I have spent the last week or so at odds with the blog.  This is primarily due to the specific reasons for having the blog and that those reasons stemmed around Reece and his care.  Certainly, I used the blog as a way to therapeutically sort through thoughts and feelings, but it all revolved around the premise of Reece being alive and dealing with his transplant.  However, as time passed, I realized that the blog also served as a sort of way to get my feelings out in almost a conversation, when I knew I couldn’t directly converse with many people due to the physical, emotional, and mental confines of the situation.  It gave me the ability to record thoughts and feelings that were swirling in my head and release them.  And it kept me connected to a group of people who I would have never been connected to otherwise.  The interesting thing is I don’t even know many of the people reading this blog.  I definitely know many people who have read it, but many more, I will never know.  I have received several anonymous letters about Reece and his life, our family, and their care and concern for him and us.  I know there are many more people that we will never know about who have been following our journey.  This blogging host began tracking country statistics on their blogging sites at the end of February.  Since that time, Like Olive Shoots has been viewed by people from 51 countries worldwide, from the USA to very remote parts of the world.  Of the many reasons I feel blessed by that and hopeful about Reece’s story, I realize that it was important for my own mental functioning to not feel alone in this past six months.  So, thank-you for taking an interest in Reece’s story, for loving him and us from afar, and for covering us in prayer.  What a gift you have been to us.

Now, I realize that the physical hospital confines have been removed, but the emotional and mental parameters still exist in our life for other reasons.  Thus, while I find the Like Olive Shoots blog to need to be retired in the near future, I do plan on starting another blog in the next week to be used for my own mental sorting purposes.  I don’t expect it to serve a similar purpose as this blog, other than it will afford me the opportunity to process the way I do.  I don’t expect it to be largely followed and I’m not setting it up for that type of purpose.  I do, however, believe that there is community of people out there that I need to somehow connect with (and I, frankly, don’t know how to otherwise go about doing so) in an effort to get through the rest of life; people who are dealing with their own child’s illness, the earthly death of their child, or a circumstance that somehow brings us along similar paths in this life.  There is also a circle of people out there specifically grieving Reece; I hope this new blog will at least help those that know Reece and our family on a personal level to keep a connection point when in all reality, we may not be able to connect in person for quite some time.  Lastly, I cannot, at this fresh place in our lives, insert myself into a grief support group.  It may be something I choose to do in the future, but there is something to be said about just allowing yourself to let things out, to have someone listen or be aware, but then to let it just be.  Other than a few specific people and circumstances that I feel ok with pursuing and knowing information about at this time, I cannot handle the bulk of information that would be shared in a forum like a live support group.  My own mental processing is too intense and it would be counterproductive at this juncture.  I’m thankful that I have been forced into enough counseling for other matters in my life to know myself well enough that when the time comes for me to connect with people in a more generalized manner, I will speak up and take action to do so.

I’m taking several afternoons over the next month or so to get out of the house and do some blogging, plan out our fall activities, and work on a memorial for Reece.  Many people sent memorials in Reece’s honor and I want to clarify why it was listed so generally in our request.  When we began planning Reece’s funeral and memorial services, we were unclear what we wanted to do with memorial monies.  Part of that stems from not having a clear charity that we feel led to give to…there are many that we would choose.  However, between Reece’s diagnosis, the hospital, the BMT charities, and other organizations, there was no clear organization that stood out to us.  Additionally, we feel somewhat led to pursue something independently in Reece’s namesake.  Thus, I will be spending some of my time in the near future checking into starting our own foundation or non-profit to benefit others in some way that seems appropriate, given Reece’s journey.  Until then, please know that any money sent to us for Reece’s memorial will be held in a savings account until we find clarity in either starting our own organization or making the decision to donate the money, in memory of Reece, to another charity.  We will keep you updated on that.

We celebrated our seventh wedding anniversary over the weekend.  We made a wonderful decision to spend it with a couple that is close to us.  It felt awesome to be out with them and to be able to do something a little more light-hearted.  The conversation drifted to Reece at many times, but we were able to enjoy an evening out mostly without feeling depressed or down-hearted.  We stayed downtown Minneapolis and were able to hit the spa the next morning before heading home.  Our actual wedding anniversary was on Monday and happened to be Reece’s six month anniversary post-transplant.  Wow–we never imagined it to have turned out this way.  And again, on many levels it seems to all make sense.  Still, that doesn’t take away the pain of not physically having your child around to hold and be present.  We are doing ok.  We have our girls that keep us busy and entertained and much otherwise going on in life.  The balance really becomes how exactly to go about living moving forward.  There are many decisions to make and things to be intentional about.  I have much to say about it, but not today.

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Heaven and Earth

It has been two weeks since Reece left us.  It’s hard to believe it has been two weeks already.  This week, Terry went back to work and I have had both girls at home (with major help from our awesome nanny).  It has been a strange and abrupt reality to try to resume life.  It’s an impossible situation, really.  We find ourselves doing “normal” things in a very abnormal way…without a member of our family.  Still, life demands that we continue to walk through this period and to find a way to operate as a family of five with only four members present.

Two glaring thoughts that have weighed heavily on my mind are that the concept of death is only a reality on earth and that Heaven and earth aren’t necessarily mutually exclusive.  Certainly, Reece is not physically here on earth.  I am not in some strange denial phase.  However, I don’t feel void of him; I know he is still living–truly living.  I don’t mean all of the clichés people use like, “He lives on through memories,” and so forth.  I know he is really living…I just can’t see him.  I don’t think he is invisibly walking around our home living his life.  However, I don’t believe that Heaven is some far off place.  And I’m not entirely sure how Heaven and earth can coexist…no one knows how this all works until we die…but I know he is in Heaven, alive, and probably not as removed as we envision.  I used to think of Heaven as some place out beyond the stars.  Maybe it is, but Reece seems near.  And the word “death” is not an accurate description.  I have a hard time saying that word; not because I am kidding myself about him being gone, but because he isn’t dead.  Death isn’t the reality of passing from this earth when one believes in Jesus Christ.  Reece knows Jesus.  It is comforting to know this and believe it deeply.  It doesn’t change the fact that we are grieving and missing him.  It also doesn’t mean we’ll avoid going through numerous stages of coping and grief for the rest of our lives.  But I don’t feel bitter right now.  I say “right now”, because I am in a very naive place of grief.  It would be remiss to assume I will always feel the way I do about Reece being gone.  I can’t imagine how I will feel every year on Reece’s birthday or when my other kids have their sixth birthdays and surpass him in earthly age or when I look back 30 years from now and have the same pool of memories of Reece to choose from as I do today.  I can foresee many painful moments in our future as a family.  However, I have assurance that he is living and not as far away as we might have thought had we never been through this process.

Right now, I am peaceful regarding Reece passing away. To piggyback off of my post a few weeks back regarding thinking eternally, this situation forces the issue of eternal life and what it is.  The fact is, Reece fulfilled his purpose on earth in five years.  He now sits with his Heavenly Father–fully healed–and completely aware of all the reasons he had to suffer and endure so much.  I can’t fathom the journey he would have had to gain back his health here, nor the way we would have tried to attempt to explain to him why he had to go through so much pain.  I feel that God was merciful in delivering him to Heaven.  That is a hard reality for us; it is backwards to the way most of us think under normal daily circumstances.  The human knee-jerk reaction is to want to keep him here, at all costs, so he can be on earth.  But why is that the right path?  Why should he have to go through more suffering?  Don’t misunderstand what I am saying.   We would have done anything and everything we could to get him to recover here with us.  But that recovery would have been gruesome.  All I can say is that for as much as I did share on the blog about his physical condition and struggles, I withheld exponentially more.  It feels selfish to want him to continue on that path here with us.  I have wrestled with God and His mercy for much of Reece’s hospital journey.  The fact is, God was merciful in healing Reece through Heaven.

To take it one step further, I feel that if we were actually given the option to have him back on earth, fully healed, it would be for our own selfish reasons. Regarding faith, this is where the rubber meets the road.  Another cliché people say all the time is, “God has a plan.”  How many times have I said that one myself?  But when His plan isn’t our plan, are we still going to trust Him? When God’s plan is for our child to be in Heaven are we going to accept that?  We have to answer “yes” to that question for Reece.  Again, what better place for one’s child to be than with God?  We celebrate that Reece fulfilled his plan here on earth in five compact years!  If Reece would have had a normal preschool year, we would have proudly attended his preschool graduation.  We would have attended many more celebrations for him in his life—graduations, marriage, children, etc.  How could we possibly be prouder of any of our children than to know they completed their life’s purpose on earth?  Isn’t that the ultimate celebration?  I think so!  But it still comes with a painful price tag.  And that is ultimately what faith in God is about.  We are aspiring to go to Heaven and be with Him.  We find lots of ways as humans to distract ourselves on a daily basis, but that is ultimately what we are faced with.  We will all pass away at some point.  In reality, it is a backwards concept for us to want our child to spend more time here suffering.  We want to ease our own suffering by having him here, but I am certain he has no suffering in Heaven.  After watching him struggle for so many months, I am overjoyed that he is free from all of that.

The truth is, we had five years with our amazing son.  We were able to see his entire life and to walk with him his entire life.  I can’t say that we’ll have that privilege with our other kids.  But what a blessing to have known Reece for all of his years on earth.  We saw his first and last breaths.  We were able to support him through his wonderful days and his painful days.  We were able to witness his faith in God.  We never had to see him hurt and suffer in other ways this world has to offer.  Those are things I would not have understood even a month ago.  But today, I celebrate our precious Reece, his accomplishments in his life, and his ability to live eternally healed.

Often times you hear someone say, “What would you do today if you knew this was your last day of your life?”  I never understood that question, because, in the past, I always thought I would spend the day crying and upset.  I’m certain that if today was my last I would be crying, but I would also be overjoyed and excited!  I actually can not wait to be in Heaven.  My biggest challenge will be not elevating my excitement to see Reece over and above meeting my own Maker.  I can’t deny that concern, because God sees my heart and knows the strength of my desire to see Reece.  But I tell you honestly, I am jealous of every person who is dying today that knows and loves Jesus.  Not only do they get to meet Him, but they get to meet my Reece.

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Reece’s Faithstory

I want to thank everyone for all of the support, love, and well wishes that they have sent.  It has been incredibly encouraging.  Life has been a whirlwind.  The pace in which we have been living for the last 10 days–er, 6 months–has been insane.  Planning a funeral…not for wusses.  Just saying.  Ok, realistically, I don’t have many posts to go before I retire this blog.  This was dedicated to Reecie…a labor of love.  But there are a few more things that I need to write down before I do so.

Before I go on, I just want to say that the staff that we worked with at the U of MN are phenomenal.  We have spent much time with them and have come to greatly appreciate the level of care that Reece received.  Reece’s doctor (Dr. Smith), the BMT doctors, nurses, NSTs and staff, the PICU docs and nurses (we heart Joey), our favs from PT & OT, and many more people I am certain I am forgetting, were phenomenal.  Thank-you for lovingly taking care of Reece for the past six months.  We are at a loss for words, but please know that you touched our lives in many more ways than we could have ever imagined.

We were incredibly pleased with both Reece’s funeral and memorial services.  We felt we honored Reece in a way he would have enjoyed.  It felt good to do so.  His funeral was complete with being transported in a vintage 1960’s pumper fire truck.  I know he loved it!  His memorial service was all that we hoped it would be–a loving tribute to Reecie.  I will likely post later about my thoughts and feelings as a mom who has lost her son.  However, I want to share what Terry and I shared at the memorial service.  Our parent tribute was to share Reece’s faithstory.  We feel it is important that others know about Reece’s love for the Lord.

So, here it is.  This is what we, as Reece’s parents, observed his faithstory to be.

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Parent Tribute: Reece’s Faithstory

Reece has always had a heart for Jesus.  He has a wonderful faithstory that speaks to his relationship with and love for God and God’s love and protection for him.  Much like we, as his parents, have been covered by God’s grace, so has Reece.  We look back at Reece’s life on earth and see God’s work.  And, we have had the unique opportunity and privilege to see Reece’s life in its entirety.  While we certainly would have not chosen the course that Reece was led down, we trust that God’s plan for him is perfect.  We know that based on our personal reflections of his life and what we were able to witness, Reece has found much favor with the Lord, especially considering his last few months on earth.  And while we never felt we should take the liberty to publicly share the part of his faithstory that we were able to observe, we believe it is important to tell others about Reece’s love for Jesus now that he is in Heaven with Him.

Reece spent time in many different churches between our home church here at Westwood, two different church preschools, and three different church bible study programs.  All churches that housed these programs helped to nurture Reece’s love for the Lord.  He knew at a young age that God and His church weren’t associated with any particular building.  At just over a year of age, he would point at various churches—many that we had never been into or had any association with and happily say, “God’s house!”   We began doing nightly devotionals with him and openly discussed God and Jesus.  We also attended church with him.

When Reece turned two years old I began attending Bible Study Fellowship (BSF) with him.  His faith and enthusiasm for God continued to grow through the BSF children’s program.  I distinctly remember one particular week when lesson was on the Holy Spirit.  Knowing that they had discussed this with him that day, we came home after study and I asked him if they had talked about the Holy Spirit.  Reece said that they had and so I asked him what he thought the Holy Spirit is.  Reece replied with a wide smile on his face, “It’s Jesus in my belly!”

Two days prior to his fourth birthday, we were driving to BSF.  Somehow Reece began asking about “bad guys”—bad guys seemed to be an interesting topic for him at this stage of life.  He eventually asked if bad guys go to Heaven.  I told him that anyone who has Jesus in their heart goes to Heaven and that even Jesus loves the bad guys.  He then asked how one goes about getting Jesus in their heart.  I told him that you have to ask Jesus to come into your heart.  I also told him that if he ever felt like he wanted to ask Jesus to come into his heart, he could tell me and we would pray the prayer together.  As we pulled into the church parking lot, he said that he wanted to pray the prayer that very day!  I was so excited for him, but I told him that we would wait to do it later in the day when Daddy got home—so we could do this as a family.  As it happens, the lesson at BSF that day was from Isaiah 53, which is believed to be a reference to the ministry of Jesus.  This must have been on his mind all day, because he made sure that afternoon that we didn’t forget about doing so.  Later that evening, Reece prayed a prayer to ask Jesus to come into his heart.  He prayed with such intensity and spirit aloud as he recited the words.  His words were genuine; he was excited to have the Lord in his heart!

Reece loved singing songs about Jesus and often led us in prayer before meals.  He loved singing the Johnny Appleseed meal blessing.   Singing was his most apparent way he showed his love for the Lord.  It was, however, difficult to get him to talk about any sort of lesson or learning.  When asked about his day, he often times would sit quietly and suck his thumb.  Despite his lack of desire to share many thoughts with us, God was working on his heart, and his love for Jesus was evident.

So while Reece wasn’t one to give much detail about his thoughts and activities, it was around the time that he asked Jesus to come into his heart that Reece would tell us that he was going to go to Heaven before us.  He was quite matter-of-fact about it.  The statements were not given in a way that suggested fear or worry.  Often, these statements would come up while doing normal activities like playing with toys or driving in the car.  At times he would ask what he would do if he got to Heaven before us.  We would tell him that he would be with Jesus and that Jesus loves him even more than we do.  He not only talked to us about this, but other family members as well.  He only brought the topic up on an individual basis with each of us, so our experiences in witnessing him discuss his leaving us and going to Heaven was unique to each person, but shared the common theme that he would, in fact, go before us.  Most of these discussions happened prior to Reece’s diagnosis.  A few times, however, after Reece’s diagnosis, he definitively stated that he would be leaving us soon.  We tried not to read too much into this, to maintain a hopeful outlook, and to assume that Reece would survive his transplant.

During Reece’s stay in the hospital, he was quite ill and did not talk and chatter in the same way that he did when he was healthy.   However, we know based on what Reece said to us that God was working on his heart and preparing him for what was in store for him.  For the months during his hospital stay, he was delighted to see people wearing their red “Team Reece” bracelets and he told us that anyone who wore one would get to go to Heaven with him.  He never complained in the hospital; people who cared for him often remarked about how tolerant he was.  How sweet and cute he was.  We can tell you from what we witnessed that we would have never been able to handle what Reece did in such a tolerant and accepting fashion.

The week before Reece was readmitted for his final hospital stay, he, out of the blue, asked us about the believer’s prayer we prayed when he asked Jesus into his heart.  He said he wanted to pray it again.  We told him that he only had to pray it one time—that once Jesus is in your heart, He remains there.  Reece seemed satisfied with that answer.  Looking back, we believe that he was aware his time on earth would be ending soon.

We know that we have had only a glimpse into what Reece’s relationship is with God.  But we are certain that Reece loved and continues to love God and Jesus and that he was at peace with going to Heaven.  This is a peace and a faith that can only be gifted by God.  Reece is a child who knows God’s love for him.  What we were able to witness has provided us much comfort that the Lord was helping Reece to see His plan for his life, even through his toughest days.  We are fortunate to have known and been present with Reece throughout his entire life and we cherish the unique opportunity we had with him to discuss Heaven.  We are blessed to call Reece “son” and eagerly await hearing him fill in the details of his story, in his own words, when we see him again in Heaven.

We love you, Reece.

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Memorial Service

A memorial service celebrating Reece’s life will be held on Friday, July 13, at Westwood Community Church, Chanhassen, MN.  The service will begin at 11 am with visitation starting one hour hour prior.  We invite you to wear red (his favorite color) in honor of Reece.

 

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He Won His Battle

It’s with a heavy heart that we write to let you know that Reece went to Heaven this evening.  He passed away peacefully with us–his mom and dad–by his side.  It gives us great peace to know that his body is fully restored and that he is running around, playing, and laughing with Jesus by his side.  What a privilege it is to have been and continue to be his parents.  Reece won his battle tonight–we are so proud of him.

Details to follow regarding services.

Love,

Terry & Terri

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