Reece’s 14th Birthday

Reece on Election Day, 2008 (20 months old)

It has been another year. Another trip around the sun, as they say. For so many years, I have not done a birthday post for Reece. Last year was the first year in quite some time. Some years, it hasn’t made sense. Lately, however, I think it makes a great deal of sense. March 24 is such a good day around our house, that at this point, writing a bit about him makes perfect sense. I just re-read that sentence and, if I was a person other than me, my last statement would seem counterintuitive and not remotely convincing. If I hadn’t walked in my own shoes, knowing what I know, I would think I was trying to convince myself it was a good day.

I’m currently slogging my way through a paper on Romans 8 and that text, in combination with a year of immense suffering for people, worldwide, brings to mind hope. We truly need hope–not the shallow, wish-filled kind, but the real anticipation of what is truly to come. We set our minds on things beyond our immediate circumstances and “suffer well” as we allow the Spirit to work through our lives, living eternally-focused, yet still in the present. This is evidenced by our hope. One of the greatest gifts given to me was witnessing Reece who, in the midst of a terminal illness, suffered well. One evening, not long before he passed away and riddled with so many side effects he could barely walk, eat, or keep his body warm, he was lying on our couch, cocooned in blankets, watching us get ready to eat dinner. He was too tired, frail, and lacking in appetite to make it to the table with us. We decided to pray over the meal and asked Reece if he’d like to join in. Without skipping a beat or waiting for us to pray along, Reece, from across the room, practically yodeled the “Johnny Appleseed” prayer song. He turned his head up to the sky like a dog howling at the moon and started in, “Ooooohhhhh–the Lord is good to me and so I thank the Lord…” and we all just sat at the table and cried, trying to keep up with him and not deter his singing by our tears. In reality, we knew he was not well and the energy it took for him to sing as emphatically as he did could only find its source in hope beyond his immediate circumstances. He was praying and worshipping in a way that had nothing to do with what was immediately in front of him and everything to do with what he hoped for–and there was no mistaking it. He was praising God. When I am tempted to throw in the towel on the day or give up in discouragement, I have this gem of a memory, along with many others from Reece’s life, stored in the treasure box of my heart. And I thank God for this pure witness of faith and hope through Reece’s suffering, gifted to me in the midst of a desperate situation.

Truly, March 24 is one of my absolute favorite days of the year, because we slow down and we celebrate Reece. In ways that are nearly inexplicable, Reece’s day is truly March 24…we don’t punt a birthday party to the weekend or invite a bunch of kids over to help tear open gifts. We don’t do gifts and parties. We do cake and memories. And since I am the only person in my immediate household who remembers him, it basically is me relaying those memories. The kids love talking about him…and we all love cake. Reece loves birthday cake. He and I used to talk about how our favorite dessert is birthday cake. We love Reece. And while it isn’t always an easy day, March 24 is always a good day.

Happy Birthday, Reece. I love you.

A Labor of Love

July 5 has become sort of like Reece’s Memorial Day for me.  Truthfully, after getting beyond the difficulty of knowing his final day on earth, I recognize it really is not the worst day that we experienced with him.  I don’t dread this day; it’s more reflective than anything.  I also don’t visit the cemetery on this day–he was never there during his lifetime, so going there feels a little strange sometimes.  It’s a day that is typically pretty low key, quiet, and mostly, I am solo in my own thoughts about him.

All of my grandparents knew Reece here and passed away after he did.  My last surviving grandparent died the first week in March, only a few months ago.  After Reece died in 2012, she kept a framed picture of him in her apartment.  She wasn’t a person who kept a lot of photos up, but this one she took with her to the various places she lived in her remaining years.  My mom brought it to our house yesterday and, incidentally, it is the same photo I planned to post of him today.  It was taken on July 4, 2010, when he was three years old.  He’s so precious and cute–it is a good picture of him.

I have many things to say, but really, today probably is not the day to do it.  I just didn’t want the day to pass without posting about him.  He gets his space, too (spoken from a mom with a pile of kids…)  I get two formal dates with him–his beginning here and his beginning in Heaven.  The juxtaposition of the privilege and difficulty of that reality is a challenge to articulate.  I’ll say that holding his entire earthly life within my own has been and continues to be a labor of love.  I get to do it.  It is not easy, but he’s mine, and worth every bit of it.

So, I’ve inherited the framed picture of Reece that my grandma used to look at and she gets to hang out with Reece in person.  I’m certain they are having an incredible day.



A New Thing and Reece’s Birthday

Early last week, I was getting myself ready for the day, Covid-19 quarantine just beginning, makeshift homeschooling plans, new information unfolding on restrictions, just coming off from a week of vacation in Florida, pregnant, and giving a modest effort to try to feel sorry for myself, when it struck me how oddly familiar a lot of this felt; I had this raw moment where I realized I had done much of this before.  The circumstances were different–it was just our family with a terminally ill child–but for us, it looked similar to what we are doing now…only it was harder.  We had this perfectly formed child who had inadvertently mutated his blood and we were waist-deep in uncharted waters, trying to keep him–and our family–afloat.  We were quarantined in a hospital much of the time, while life marched on around us.  Every Friday, much of the staff would do a final round before proceeding out the door to go back to their regular weekend plans of social gatherings, catching up on cleaning, sleeping in, date nights, ball games…all the luxuries of life.  We would still be there, doing the same routine, watching the same numbers on Reece’s monitors, praying the same prayers, wishing things could go back to normal.  We were “socially distanced” for six full months.  Only a handful of visitors were allowed during that time.  I remember feeling completely trapped.

The winter of 2012 was unusually warm–people were outside in shorts in March (and not just the few crazy people who decide every winter to wear shorts once the temp pops up past freezing).  People were shedding their coats, runners were loving the early running season, even Mother Nature was confused when the flowers bloomed in early April.  Yet we were stuck in a hand-sanitizing, don’t-you-dare-cough-in-this-room medical stupor, with no end in sight.  It might as well have been Antarctica for all it mattered to us.  The full size windows across one entire wall of Reece’s room brought in glorious sunshine and also ushered in the sights and sounds of regular people doing regular things, experiencing a beautiful spring that felt like a dirty joke, as the days wore on.

I couldn’t even say it was easier, during that time, from a pregnancy perspective…I was pregnant throughout Reece’s transplant with Scarlett, my third child, and delivered her three whole days after Reece’s initial discharge from the hospital.

When Reece was discharged to our home for a month and a half, everything was a threat to his health.  If we wanted to go on a walk, we avoided freshly mowed lawns, leaf piles, construction areas…things that were nearly inevitable in the springtime in Minneapolis, Minnesota.  We took him to the clinic nearly every day, navigating the normal routines of healthy people, which seemed nearly impossible with his level of needed care.  We tried to maintain distance in waiting rooms, with Reece wearing a thick, uncomfortable mask.  People stared at his appearance, not understanding why he looked so strange.  I tried to have grace for others, but spent a lot of my day exhausted, trying to brush off ignorant stares and whispers, completely frustrated that we were discharged and not in the safety of the hospital bubble we so desperately felt imprisoned to for so many months.

Managing Reece was a 24 hour job–he took around 90 doses of medication a day that were administered orally.  Medications that you likely have never heard of and that have thankfully faded from my memory over time.  We administered fluids and a few medications intravenously.  We changed his Hickman line dressing (which I later learned from my OB was a full class in med school, as it requires a sterile environment to be done).  Yet we did this in our home.  We rubbed thick steroid creams all over his body multiple times a day to try to manage his GVHD.  We had an oxygen machine for him to use when he slept, his lungs still struggling from his pulmonary hemorrhage.  He was constantly cold, so we had dozens of thin, cotton hospital blankets we would warm in our dryer continually throughout the day to keep him comfortable and warm.  His muscles were atrophied, so we had to do PT exercises–he was so tired and dreaded doing them.  Even going to the bathroom was a process.  We prayed that his blood transfusion from a Friday would sustain him until a Monday.  Our home felt like a prison.  Plus we had a newborn.  Britta–then two–was living with my parents during this time.

My dear friend Suzy (who has her PhD in education and spent years homeschooling her kids) and I had spent a month leading up to Reece’s hospitalization preparing 8-10 weeks of homeschooling modules.  Each was carefully designed for Reece’s hospital limitations and catered to his age level.  I was so prepared.  I was going to homeschool my son and when he got better, he was going to look back and be so glad we had that time together.  I was going to win.  He completed the first week in the hospital and never took a second glance at the lessons thereafter, having felt too ill to have any interest.  In June, Reece coded in the hospital after several days of treatments to try to wipe out his T cells and “trick” his immune system in an effort to rid his body of GVHD.  That first night, after placing him on life support, I came back to our house to rest.  In pure frustration, I dismantled the entire plan.  I unpacked all the supplies and threw out the papers.  I made a pile of things to send back to Suzy.  Though Reece died about two weeks later, somehow, that evening, I knew all of our planning no longer mattered.  I knew this was it.  I was done.  I threw all of his meds that lined an entire kitchen cabinet–top to bottom–into the garbage.  If he ever made it back to our house alive, it would be months down the road.  We would need different meds.  I was done.  I had lost.

During this Covid-19 outbreak, homeschooling and playing with my four, healthy, surviving kids and managing them while pregnant, is easier than that.  One non-functioning immune system is harder to manage than six robust immune systems.  Four kids that are healthy enough to argue with each other and chase each other around the house and complain of boredom from time to time are easier than my Reece when he was a terminally ill, immunosuppressed child.  I’m not saying these days are easy or without challenges, but these days are a flavor of what those days were like and I’ll take the healthy version of social distancing any day of the week.  And I’ll distance myself for those who do have immuno-compromised loved ones.  I will distance for the sake of those who need us to distance.  In that moment last week, I was quieted and relieved of the temptation to feel sorry for myself.  Really, it has been enjoyable for us to be home together.  I needed that wake-up call.  It could be–and is for many people during this strange pandemic–so much worse.

Reece would be 13 today.  It feels so good to say his name.  To type his name.  I miss him so much.  But missing him has changed over time.  I love him with the same intensity, but I think of him differently and I miss him differently.  So much of my life has changed and Reece is no exception.  Our kids miss him, not even knowing what they miss but knowing he is gone and feeling the loss.  We talk about him nearly every day, we pray for God to hug him for us, we include him in our discussions about our family; sometimes we cry, but not nearly as often as we laugh and share stories about him.  Most of the time, we imagine what it would be like if he was here, which naturally turns into a discussion about seeing him in Heaven.  My family spends a lot of time talking about death, but not in a morbid way.  Death has been a big part of our life.

I’ve had to accept some hard realities about Reece.  It was a lengthy process to come to terms with the fact of the concept of natural selection.  Even if Reece had been a “long term” survivor, I believe he likely would have passed away by this point.  He wasn’t going to be here a long time.  Other people, today, have their 13-year-old kids; I do not.  That took several years to come to terms with.  It took several years to say that he “died” versus “passed away” or “went to Heaven”.  I wholeheartedly know he is in Heaven, but his body died.  That was hard.  It was hard to part with the home I lived in with him and many of the friendships that have drifted away after loss–those that knew Reece that I no longer am in contact with.  That hurt a lot.  It was hard to come to terms with being around kids his age.  Sometimes it still is hard, but not in the same piercing way.  It’s still hard to remind people that I have a son who is my oldest.  No, it is not Britta.  It is Reece.  He still holds that place.  People give me funny looks when I correct them.  They say, “Yes, but now, Britta is your oldest…” in whatever context they are referring.  Ah.  No.  Nope.  She is not.  Just like your college-age child or grown child or deployed child is still your child, so Reece is still mine.  And any day now, I’m going to see him.  It’ll be a flash.  So please, stop brushing past him and writing him out of my life.   Grace, grace, and more grace.  God, please give me grace.

But as I reflect on what my life looks like now–my marriage and kids and the way it is all woven together, it is impossible to imagine things to be any different.  I’d have to eliminate people that I love on either side.  So I press forward with a hope of a day when we are all together and that day does not exist this side of Heaven.  One thing I can say with absolute certainty is that I do not spend a day worrying about him or how he is doing.  I do not question where is at or if he remembers us or if he is doing OK or if he is safe.  I know where he is in the same way I know where my other kids are at, I just don’t get to see him…today.

I know I’m learning a lot already through this extended time of social distancing.  One thing I know for certain is that we will all change from it in some way and that is not a bad thing.  There is no going back to exactly what life was like before.  It may not be drastic change for every person in the long run, but there will be change.  And that’s OK.

Happy Birthday, Reece!  We will see you one day and hug you ourselves.  Until then, we know where you are and we are okay here and that’s enough for this day.  xoxo Mom

“Forget the former things;
    do not dwell on the past.
See, I am doing a new thing!
    Now it springs up; do you not perceive it?
I am making a way in the wilderness
    and streams in the wasteland.”

~Isaiah 43:18-19


reece’s birthday

Early on in my pregnancy with Reece, I purchased a blue onesie.  I remember holding it up as though there was a baby in it and saying, “I can actually feel him!  I know he’s not here yet, but I can imagine what it will feel like to hold him.”  Even though I couldn’t see him, I knew where he was and that I carried him with me.  I pressed on through pregnancy with the hope that I would one day hold him and know him.  Seven years ago today, that dream was realized when I held Reece in my arms for the first time.  It was even better than I had imagined.  Seven years later, I find myself in a similar situation as I was all those years ago when I was pregnant.  I still know where he is and I still carry him with me.  However, I can easily remember what he feels like to hold.  I remember what it is like to run my hands through his thick, blonde locks and what a hug feels like when he wraps his arms around my neck and his legs around my torso and squeezes tight.  I can see the sparkle in his eye when he flashes a look to signal he is about to turn around and take off running.  I can hear his voice as he tells a joke and laughs in silliness.  Those are treasures.  It’s pure parenting bliss–it’s beautiful and he’s beautiful.  Sometimes I feel like I can’t bear to wait any longer to see him again.  But it will happen and that, my friends, is a beautiful thing.  I know he’s not seven today.  There are times where I feel bothered that I can’t see him at the ages I thought I would see him.  It’s okay, though.  I remember him and I’ll see him and embrace him again.  It’s beautiful.  Really–beautiful is the only word that comes to mind.  I love him dearly.

Happy Birthday, Reece.  I love you.

hello, 2014!

Here we are again.  January.  A new year.  I told Terry on New Year’s Day that it is funny how a new year seems fresh and full of possibilities, when in reality, it is just another day on the calendar.  It’s like we all need this big permission slip to hit the reset button and have a new beginning.  Apparently, we need this every 365 days, because we could just continue on our with daily life and not celebrate the Earth’s one revolution around the sun.  Maybe we need a reason to extend the Christmas season by another week; a good excuse to take some extended time off of work.  Either way, there is something about January that makes things feel clean.

January is here and, in our family, it marks another year since we embarked on our BMT journey with Reece.  Of course Reece passed away in July 2012, so July has become an anniversary month of sorts for that reason.  But January holds another anniversary and it would be remiss if I didn’t confess…it haunts me.  It encompasses an anniversary of commencing a complex process that brought us down a twisty, tangled road full of confusion, emotionally-charged experiences, loss of innocence, and a fair amount of mental damage.  January 2012, on the surface, had all the markings of new beginnings and a fresh start.  However, it never lived up to its promise, despite us marketing it that way to Reece, and now it merely feels like one big, empty, cold month.

My collective assessment from both my writings and my memories is that in the first year after the loss of Reece, we operated out of mostly shock.  We were very much still in that shock-place last January when we learned we were pregnant.  As we pressed forward through the year, the stark contrast between being pregnant with a new baby and grieving the loss of Reece became strange, at best.  As July came with the first anniversary of Reece’s passing, I felt a fair amount of relief in knowing that we had survived the first year and would at least be off the hook of saying, “It was only a year ago that ________ happened.”  Little did I know to expect that my relief would be short-lived when I hit a low point for the remainder of my pregnancy.  By this point, I was in my third trimester and people were asking me (just like they do any other pregnant woman) all about our new baby on the way.  In the midst of innocent questions like, “Is this your first baby?” or reactions like, “Oh, now you’ll have a boy to go with your girls!” lie complex answers from my end of the spectrum.  I found myself wary to discuss the details of my family with anyone, because it was emotionally exhausting.  Additionally, with only eight months in between giving birth to Scarlett and getting pregnant with Jude, my body felt the effects of very little recovery time.  Even though all probably looked normal to a passerby, life felt raw.

Jude was born in September.  He is such a little love.  Nevertheless, any time we add a baby to this house (and I am sure many people can relate), our world is turned upside down.  With our youngest two only 16 months apart and Britta being only three, it has required a pragmatic approach to everyday life.  My day is typically spent wiping tears, wiping noses, wiping butts, and wiping up the floor.  While I certainly think of Reece every day, the demands of our kids here and our overall exhaustion have been somewhat distracting from what I know is still freshly needing to be dealt with in regard to grief over him.  Granted, Jude is only four months old, but as the dust has settled, I am able to see things a little differently than I did a year ago.

First, I can say that the overall shock of Reece’s passing has somewhat disappeared.  There are still times when I say, “I can not believe Reece isn’t here with us.”  But we aren’t walking around shell-shocked like we were last year.  We aren’t just getting up and walking aimlessly around the Mall of America because we don’t know what else to do.  (Yes, we did that for quite a while after he passed.)  However, because that initial shock has somewhat dissipated, it has afforded more room to feel shock about what actually happened during our time with Reece at the U of MN and surrounding his funeral.  I can’t believe that Reece, for the last year of his life here, was a terminally ill child.  For half of that year, we didn’t even know it.  I can’t believe much of what we witnessed during his hospitalization.  I can’t believe the routine that he had to live through.  I can’t believe how we operated out of our home while Reece was ill–what it looked like and felt like.  I can’t believe the conversations we’ve had to have or the decisions we’ve had to make.  I still can’t believe we had a funeral for Reece.  We had a funeral for Reece.  And we had a memorial service for him.  I can’t believe I got up in front of several hundred people from various ages and stages of Terry and my life and told them about my son.  People wept over him.  Terry and I often look at each other and say, “How did we become that family?”  In fact, if you looked at our family make-up two years ago, you wouldn’t even recognize us today.  Reece isn’t here, but we have Scarlett and Jude with Britta sort of gluing it all together.  It all seems so strange.

Second, I’ve been able to simply let go of many hurts that transpired after Reece’s passing.  I’ve let go of expectations I had about how some of our friends would or would not embrace us.  I’ve realized that they hurt over Reece, too.  Last year, it was hard to see past my own pain to realize what others might be feeling in this regard.  I’ve decided that it’s ok that some of our friendships fall to the back burner or take a different course.  It isn’t because we don’t care and I realize now that it likely isn’t because they don’t care…it’s because it just needs to be that way.  I trust that God has a plan for those friendships, just like everything else.  I harbor no resentment towards them.  In fact, I do care deeply about each family or friend.  I’ve come to realize that sometimes, it simply is what it is.  Most importantly, I’ve realized that it is okay and that I don’t need to try to scramble to fix it.  Truthfully, I couldn’t even if I tried.  I also trust that different people will come into our lives and several have already at this point.  Most of the angst I felt in regard to our social connections being completely disrupted has been removed.  I feel at peace with this.

Third, I have come to realize that people–whether they knew us before or are just meeting us for the first time–will always identify us as “the family that lost a son”.  It is part of our identity.  I remember a handful of people I met prior to our own loss who had had a child pass away.  I never looked at them the same again.  I had so many things that would run through my mind when I would see them.  I had so many questions.  I didn’t know what to say to many of them.  But, regardless of my relationship with them, their personal loss of a child was never far from my mind.  Now, I can see it in other people’s eyes when they look at me.  Or at least I can see it in some people’s eyes.  It creates distance and questions and fears…fears for being somehow offensive to us (unlikely) and fears of what it would be like to lose a child of their own (also unlikely).  It is a little unsettling at times, because I just know there are thoughts and questions racing through their heads.  I can tell some people dread if the subject comes up…if Reece comes up.  It is part of the way society identifies me now.  Parent of a dead child.  Only he’s not dead…he’s alive in Heaven.  It’s a miracle.  But people get lost in the passing part and get shifty with the Heaven part and often it creates a barrier.  Even so, I am ok with that.  That’s part of my life’s journey now; it was planned for me to walk this road.  Just like any other child, you are proud to be your child’s parent, regardless of who they are or what they do.  I’m proud to be Reece’s mom.  Being Reece’s mom means he comes up in conversation and, often times, it’s very normal conversation like how we handled potty training or why we chose the preschool that my kids attend.  For the record, if you ask me, I would likely answer just about any question you ask about Reece or our family.

One final noticeable change that I’ll mention is something that has just occurred to me recently.  While I can say that I’ve become a bit of a recluse in my social life, I have found it therapeutic to reach out in my every day functioning, mostly to total strangers.  I have begun to see people differently or perhaps it is that I can see the neediness of the human condition differently.  Where once I assumed the worst (e.g. someone that looks crabby must actually just be a crabby person), now I am able to better give the benefit of the doubt (e.g. said crabby person is actually going through something rough or having a bad day, etc.).  I actually strike up more conversations at the gym, touch a person on the arm when I am speaking with them (if it’s appropriate, that is), and do my best (although I still need a lot of work) at trying to listen to a whole story someone is telling me without bringing it back to myself.  I think it really stems from my own thought that when I see a person who I can see is having some sort of struggle (and really, who isn’t) I think to myself, “To somebody in this world, that is their Reece.”  That homeless person on the side of the road, that overweight teenager who is self-consciously lifting weights at the gym, that elderly woman who needs help getting her coat on…to someone, somewhere, that person is the child of parent who loves them like I love my own kids.  That parent would feel pain in knowing their child is struggling in whatever capacity it may be.  It really makes me think of people in a more loving way.  And hey, I can still be a jerk like the next person, but the point is, I have begun to notice others and I realize that just by noticing the smallest thing and mentioning it to someone, it often brings a person out of their shell.  By doing so, it actually makes me feel a whole lot better.  It takes the focus off of my own struggles, if only for a moment.

I’m entering 2014 without a lot of expectations.  I’d like to not feel exhausted come December.  I’d like to feel like I spent quality time with each of my children.  I’d like to be a more gentle and loving wife.  I’d like to be better at keeping my emotions in check.  I’d like to feel like I’ve made an impact, if even only a tiny one.  I’d like a year where we can hold steady as a family…not add or definitely not take away.  Slow and steady wins the race.