Monthly Archives: September 2012

Journal Entry #6: How Did We Get Here?

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

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

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

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

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

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

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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.

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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.

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Family Dynamics

This has been a very hard week for me.  I’m not entirely sure why other than I am quickly learning that grief has no rhyme or reason as far as the turns it takes.  I am handcuffed to it and forced to follow where it emotionally takes me.  Every day this week as had its fair share of oddities or mental breaks that have kept me from either desiring to do much other than be around our home or, at a minimum, have left me realizing that socially, I have a long way to go.

We went to our friends’ home for dinner a few nights ago.  It was really great to be doing something on the social scale and reintegrating that way.  And, of course, it is refreshing to catch up with friends we haven’t seen in quite some time.  It was a big step of sorts for us right now.  I’ve been to social places (Target, the Y, grocery shopping, etc.), but we have been sticking close to home for the most part.  If greater society is a swimming pool, I have been sitting on the edge and dipping my toe in…and that’s about it.  I’ll be glad when BSF starts because it will get us back into some semblance of a routine.  I typically do well with routines.

I’m not intentionally trying to avoid people, but there is more than meets the eye to getting back into life–both literally and figuratively.  Reece doesn’t live with us–at least physically–and things seem all out of whack.  Since there is no way to fix that, I find myself having to figure out a way to maneuver this foreign family dynamic.  Britta is the child that (for all intents and purposes) toggles both past and present, but our family make-up looks and feels very different.  The last time I had a two-year-old in our home it was three years ago, when Reece was two, and I was pregnant with Britta.  We had one (very active) child and were expecting another.  We were immersed in boy things–cars, trucks, trains, rough-housing, more cars, more trucks.  There were no dolls, very little pink, few tears over accidents, and lots of blue everywhere.  Now, we have two girls and the dynamic has shifted from a boy-centered home to “girlworld”.  This is great–we love having girls and toddlers!  But it isn’t the way our parenting adventure started; it’s not even close to how our first five years of parenting went.  And so, I’ll call it like I see it.  My week has been one mental struggle after another to make sense of how to be a parent of three with only two children with us and how to be a parent of only girls, when we have both genders.  You see, I didn’t realize how much my identity as a person was centered around my kids and who they are.  Part of that is how I see me and the other part is how I believe society sees me.  I’m the mom of three and the mom of a boy and two girls.  Greater society sees me as the mom of two girls, the oldest being a two-year-old.  There is nothing wrong with having only girls, it is just such a foreign concept to us and also not the full picture of our family.  No, our family includes a boy (a very special one, at that).  And we became parents in 2007, not 2010.  I find myself constantly tripping up over this identity crisis.  And, by the way, it’s more than just the genders and numbers.  It isn’t just about not having a boy here–it’s about Reece not being here.  I don’t mean to minimize him in this at all.

Going out in any social way requires that I have the energy to take on whatever conversation may come up and the residual effects of that conversation.  This seems like it would be a minimal thing.  However, you’d be amazed at how many conversations stem around your kids if you stopped to consider it.  Case in point–I took Britta running one morning this week.   On our way back home, we stopped at the park to play for a while.  As I was pushing her on a swing, another mother came over and struck up a conversation.  This conversation was nearly one-sided as I was just trying to enjoy Britta and mind my own business.  She inevitably asked about the ages of my kids.  One-by-one she inquired about each child and so we got to Reece and I shared that he had passed away in July.  Her reaction was, “Well, at least you have other kids.  I met another mother who is pregnant and lost her other child.”  She went on to tell me how she had no idea how I “do it” and how thankful I should be to have my other kids, etc.  I had no idea what to say to any of that.  It was uncomfortable and I was not in the mood.  I did my best to not get into this with her.  I could have lied about Reece being gone or about how many kids I have, but that feels weird.  I have nothing to hide in our situation.  The difference is that while this mom probably left the park and went on about her day, I am still thinking about this conversation nearly a week later.  It takes energy to have these interactions and a fair amount of social grace to navigate the difficult topics that arise.

Another major struggle this week was and continues to be missing the parenting of Reece.  I know he doesn’t need me to parent him any longer, but I miss him needing me.  I’ve prayed a lot about this lately–finding a way to somehow ease my own need, for his need, while I am still here on Earth.  It clearly won’t ever be the same, but I was praying about it with the hope that there would be some bone thrown my way by God to help me out.  Sure enough, in the moment of my struggle I received a message from a friend of mine with a link to a blog post from a mother who lost her 18-month-old girl a couple of years ago.  She spoke about this in her post and how she still has a relationship with her daughter, but the roles are reversed in some ways.  She talks about how her daughter helps her understand things that she may not have gotten before and how they still experience things together, but since her daughter has a full understanding of life in Heaven, she actually is cheering her mom on and helping her out.  Such an interesting and lovely way to think about the parent/child relationship.  You can read the full article here.

I’ve been open about the fact that there isn’t a void of Reece in my life.  I don’t feel like he is far away from me.  I also very much believe he has a pulse on our life as a family.  I don’t think he is physically or spiritually in our home, but he is not disconnected from us.  His life here taught me so much and continues to do so.  I am hopeful that I will share the same feelings as this other mom in feeling connected to my child, even though the physical presence is no longer here.  Her post helped me to understand that saying “see you later” to Reece physically didn’t mark a break in my relationship with him.  I’m still his mom, he’s still my girls’ older brother, we still need each other–it just looks different.

Lastly, we learned that Reece’s BMT neighbor was healed into Heaven yesterday evening.  Our hearts are heavy for this family who has now lost their second son due to this diagnosis and complications of BMT.  What an amazing and inspiring family; what courage they displayed in the midst of a situation they never asked to be in.  Their brave son fulfilled his life’s purpose on Earth.  We can relate to many parts of their journey with their precious son.  When we were in the hospital I would see this boy in the hall–very similar in appearance to Reece (due to BMT and GVHD)–and I would think how under different circumstances I know Reece would have so much fun playing with him.  I know in my heart that Reece is having a blast playing with both of those boys right now.  Different circumstances, indeed.

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