one long winter

I’m certain I’m not alone in thinking that this has been a loooong winter.  After the first of the year, Terry hit the road for his new job and traveled extensively throughout January and February.  And of all places…to sunny California!  In the midst of his travel, my beloved grandfather passed away (which deserves its own post) and since then, we have battled multiple colds, a bout with a stomach virus (which forced Terry to come back early one week), a household full of strep throat, and one very bad case of diaper rash which required a special trip to the doctor’s office and a prescription for some homemade concoction from the clinic called “poop goop”.  Seriously, those were the words that were printed on the label.  The weather needs no explanation.  With three small kids in tow, there have been many days where I decided it wasn’t worth the risk or the effort to bundle everyone up and go some place.  There was one week in January where all three kids had colds, Jude was up every hour of the night for multiple nights, school was cancelled due to weather so we didn’t leave the house for the entire week and by Thursday afternoon, I managed to fall down the stairs with Scarlett in my arms.  Thankfully, Scarlett was not injured, but I was fairly banged up.  Scarlett was so upset by my own tears after falling and so stir crazy from being cooped up all week that she literally sat on my bed and screamed at Britta and me for 45 minutes.  She capped it all off by heading upstairs and biting (yes, biting) our coffee table out of pure frustration.  At that point, Britta turned to me with a blank look on her face and said, “Maybe Daddy is coming home today.”  To which I replied, “Nope!  Not today.”  All I can say is uff da.  The week ended with Terry missing a flight connection, not getting in until Saturday afternoon and flying out again on Monday.  By the time Terry got home all I could say to him was, “I’m thankful that we will never have to live through January 2014 again and that our kids will never be this young again.”  Yes, it has been one long winter.  I promise I am sharing all this for more than my own need to vent and get sympathy.

It’s been a trying winter and in no small part due to Terry being gone a lot.  We are very thankful for his new opportunity, but I have been out-of-it as far single-parenting while Terry travels.  Truthfully, it’s an entirely different group of kids for me.  He hasn’t traveled like this since prior to Reece’s hospitalization.  Needless to say, I am out of practice.  Not only am I out of practice, but without Reece here as my helper while Dad is on the road, I’m way off.  It certainly makes me miss him even more.  Sure, Britta is nearly the same age as Reece was when Terry was gone before, but it’s just not the same.  The whole scenario has revealed many shortcomings I have as a parent.  And these shortcomings have reminded me over and over again about a post I wrote on Like Olive Shoots entitled 51 Things I Hope I Never Do Again.  That particular post has easily generated the most traffic on the blog other than the posts around the time Reece passed away.  It was written early on in Reece’s transplant as he really started becoming ill from the cord blood.  I remember sitting in the hospital wishing I had the same issues and challenges as I did on any ordinary day of my life.  I remember feeling trapped in such an obscure life place with no way to fix any of it.  Life felt completely out of control.  I promised when we eventually were out of the situation, I’d be a better mother…more loving, more compassionate, more creative, more tolerant…more whatever.  I promised I would remember how hard it was in the hospital and that, no matter what, our challenges at home would not compare.  While they don’t compare, the demands at home are still great.  The day-to-day can still be tough.  And you know what I’ve learned in the last 20 months?  I’m really not any better at parenting than I used to be.  I’m different at some things and I’ve changed quite a bit personally, but I’m pretty sure I haven’t gotten any better at being a mom.  I have strengths and weaknesses just like anyone else.  But I had convinced myself during our time at the U of MN that I would somehow be better at “mom” after going through all of that.  Well, my perspective is now different and I’m still good at some things, but I need a lot of improvement on others.  The “needs work” category has never been more apparent than in these last cold months.

Actually, if anything, I may have gotten worse at the things I need improvement on.  I’ve realized that I’ve been pressed in many ways throughout these last few months and nothing surfaces more in pressure situations than the ugly things.  Or is that just me?  Maybe it’s just me.  When I’m pressed, I’m no sweetheart.  But I’m trying–wow–am I ever trying to work on these things.  In particular, I am trying to work on not having a short fuse with my children.  Most days are just fine but there are a few moments baked into the most random places where I really have to work hard to not lose my temper, with Britta in particular.  One such moment happened about a month ago.  We were having a great day and leaving the gym on yet another very, very cold morning.  Britta was dawdling as we got into the van (getting the kids in and out of the van is no small process with the three kids in car seats).  In my desperation to get her to pay attention and get out of the extreme cold (I could tell she was deliberately trying to disobey me by not getting into the van) I did not handle the situation well.  But even as I was strapping her into her car seat I apologized for losing my temper and told her as hard as I try, I’m not perfect.  I will always tell my children their only perfect parent is Jesus.  Period.  But it just felt yucky.  I felt like I should be past this–I should be beyond this.  I know what if feels like to wish you handled every situation well.  I have certain memories with Reece, in our every day life, that I wish I had handled better. Those memories, at times, torment me.  I know every parent has these moments; I’m not unique in this way.  I’m also not unique in avoiding them–they didn’t magically disappear after Reece passed away.  But I know the feeling of regret over them.  I know the feeling of grief over them.  Nevertheless, I have accepted that my other kids will experience my own faults just like Reece did.

As I got in the driver’s seat of the van I was deeply sorrowful over the way I handled myself with her.  Then the words came to mind, “…and love covers over a multitude of sin.”  Thank-you, God, for that.  And it’s so true.  It doesn’t make sinning any less wrong; I’m still working on many, many things that I need to keep in check.  However, I needed to remember that my loving actions greatly outnumber the not-so-loving ones.  Most importantly, I take those words to mean that Jesus’ love for me and my kids fills in the holes of my parenting gaps.  If nothing else, they will be taught that in my shortcomings, Jesus will never fail them.  I’m not trying to replace God.  That’s a big revelation for me, because it basically lets me off the hook of beating myself up over my failures.  I still grieve my failures with my children, but knowing I can’t be perfect helps.

Here’s the deal–there is blessing in seeing your child live their entire life.  I can speak to a much bigger picture than the average parent (one of the ways I am a different person and different parent than I used to be).  I know in a deeply personal way that Reece was not thinking of my parenting shortcomings before he coded or passed.  His last months with us demonstrated love and commitment and perseverance–both parent and child.  There was no heartache about time-outs or me losing my temper or the things that Terry or I did wrong in our parenting.  Our final exchange of words was tender and loving and that is a gift.  It’s also extended to me as grace in parenting my other kids to know that this Bible verse is true and that I’ve seen it in action.  It’s not worth beating myself up over a single moment in January 2014.  The picture is so much bigger than that; life isn’t lived in a single moment.  That is encouraging to me.  It releases some of the angst I feel over moments I had with Reece and also from the temptation to beat myself over similar moments with my younger three kids.

By the way, I’m so glad that I titled that post “51 Things I Hope I Never Do Again”, versus “51 Things I Promise to Never Do Again”.  Because I’m pretty sure I’ve done nearly all of them since I wrote it and that would just mean I broke 51 promises.  Lord, help me.

Birthday Season is upon us in our household.  Reece’s birthday is in two weeks.  I’m sure I’ll be posting about it soon.  If you think of us, we covet your prayers.

“Above all, love each other deeply, because love covers over a multitude of sins.” 1 Peter 4:8

what i would have told myself

What is the deal with anniversaries?  We are wired in such a time-oriented way it almost drives me crazy at this point.  In our situation–fortunately or unfortunately–it feels like anniversary season.  If I could will the whole thing away I would, but it doesn’t work like that.  There are enough days that are hard just out of the blue that the whole anticipation of anniversaries seems maddening.  The truth is, the whole month of June has felt yucky and difficult and created a fair amount of tension in the house in its underlying way.  June was terrible last year.  I’m not focused on July 5, as we are already at the one year mark in many ways.  The days that Reece was back in the hospital last June were heartbreaking.  He was in such rough shape and yet so willingly did all we asked.  June 18 was a hard day realizing that it is the day Reece coded in the hospital and his body gave out.  Only moments of difference in timing on the doctors’ part and we would have had June 18 as his official day he passed.  The two and a half weeks between those two dates last year were full of tense, desperate decisions and emotional, grief-stricken mess.  I pray in my heart that Reece’s experience during that time period was much more peaceful.  July 5 is one day where as hard as it was, there was also relief.  It marked the end of suffering for Reece and the beginning of something so miraculous I can’t express the joy I feel for him and his achievement.  I’ve come to realize that those two weeks in the PICU were for us as his parents to come to terms with reality and really probably not for him at all.  He just had to be patient with us.  By the time we get to July 5 this year, there might actually be some relief as well.  I’ve been wrong about this stuff before, so we’ll have to wait and see.

We’ve had some people ask us and other family members how we feel coming up to the one year mark.  Time doesn’t really extend to this situation.  It just is.  My life feels divided into three parts: before Reece, with Reece, after Reece passed.  The days have been short; the year has been long.  It doesn’t feel related to time, probably because we have no break from it.  For most people, Reece probably pops into their minds every so often, and for us, it is the reverse.  It’s rare if he isn’t on our minds.

As I was readying myself for the day a few weeks back, I thought, “What would I tell myself a year ago if I could talk to that woman?”  Initially, I came up dry.  I’m not any sort of expert in anything we went through or continue to go through, but grief is so unpredictable.  What could I have possibly told myself about this year when I already expected it would be unpredictable?  It seems that I was as prepared as I possibly could have been.  Additionally, we didn’t exactly go into the grief process naïve.  In many ways, it was shocking that Reece passed away (I believe it is always shocking to lose a child–whether the child is terminally ill or passes away in a sudden accident.  It must feel shocking to most people.), but we had been through enough “stuff” that–again, either fortunately or unfortunately–we had developed coping mechanisms and were prepared in some way to go through this.  Truth be told, one year of intense grief is probably not enough time to gain many learnings…it is still too fresh.  But that morning, in my stubborn refusal to examine the topic further, I told myself there is nothing I would say to myself a year earlier to better prepare me for what I was going to walk into.

Over the last couple of weeks, I’ve realized that this isn’t entirely accurate.  It’s true–grief is unpredictable and follows no pattern.  Most people will tell you that.  I feel grossly inadequate to tell anyone how to prepare for grief.  You can’t prepare for it; you just have to live through it.  However, I think what I would tell myself is that my love for Reece is not the same thing as my grief for Reece.  It has taken me the entire year to come to this conclusion.  I have been stuck in traps that made me feel like if I somehow wasn’t feeling sadness over him in regard to his passing, that it meant I somehow didn’t care.  It’s a lie that I bought into early on, in the doldrums of this past year.   It just isn’t true.  My sadness and mourning is in regard to not having him with me.  But loving him is totally different–I loved him here and I love him now.  The problem with not differentiating the two is that thinking they are same thing prevents oneself from living life.  I recently was reading up on the life of the poet, John Keats.  He passed away in his mid-twenties from Tuberculosis and shortly before his death he said,  “I have an habitual feeling of my real life having past, and that I am leading a posthumous existence.”  (See, May 30, 2013 )  When I read this it spoke to me about how life feels under the oppression of constant grief.  It leaves no room for active living.  When one believes grief is actually love, grief is never allowed to leave and so you know you are here, but it doesn’t feel like life is being lived.  It’s been a long process to understand this, but I feel it is key in my understanding where grief fits into the bigger picture of life.  Grief isn’t Reece and it isn’t love.  Grief is grief.  It has its own separate place in life.  Since separating the two in my mind, I have been better able to appreciate and experience the depth and breadth of my love for Reece and how it continues to grow and evolve, even in his physical absence.

The other thing I’d tell myself is that I should expect grief to be a solitary experience in my life.  Terry is the closest person to having a shared experience in life and yet he and I often share similar feelings, but at different times and manifesting our emotions and reactions in very different ways.  There are no partners in grief.  The only solace I have found is through seeking the Truth.  God is the only place where I can take my multitude of painful memories and find relief from them.  I don’t mean to discount people I love and who love us and support us.  That support is important, too.  But no one can walk you through it and understand it other than God Himself.  I’ve had many people comment to me over the last year about Terry and my strength in faith–how strong and faith-filled we have been.  I appreciate those thoughts, but find the statements generally confusing and misguided.  The reality for me is, it took such an extreme event for me to get to some of these places of faith and such a sorrowful place without much hope otherwise, that it highlights how much I truly have lacked faith in other areas of my life and how much I have yet to grow and actually do something with it all.  I still have much to learn.  I am astounded by people who have a deep faith without such extreme trial.  My faith has grown, yes, but it has only taken such dramatic leaps after being trapped at a dead-end.  It’s certainly not my own doing, but should be rightly credited to the Lord.  Only after facing such extreme trial have I been able to begin to grasp the breadth and depth of gifts like hope, faith, and love; hope beyond the things I desire to have and beyond the constraints of my human mind and expectations, faith greater than the gratitude I feel when things go the way I want them to go, and love that infiltrates every hard place in life and every crack in between.  The entire experience has left me yearning for much more than this life has to offer.

One thing that I have been struggling with immensely this year and especially this past month is not being a perfect mom for Reece.  I never entered parenting with the expectation of perfection.  Yet I find myself often in the lie and trap that if I could go back, I would give him everything his heart desired and do nothing but dote on him constantly.  Yet I know, as it plays out every day in my home, I could not possibly be perfect for him.  Yes, that is the lie–that I could have somehow been God to him–our only perfect Parent.  Still, the memories of my own limitations, especially last year when he was in our home, have haunted me.  I wish I had had more energy after giving birth.  With Scarlett born, I was the parent up with her in the night and Terry was the parent up with Reece.  Reece wanted me to be with him and I just couldn’t do it, because I was nursing Scarlett and just trying to be rested enough to deal with the demands he had during the day with clinic and home care.  As I have stated–it was a mess.  All the painful memories of watching him endure physical therapy and the tears he shed–and it was very difficult for him to cry actual tears after chemotherapy–but the tears over us making him do things that he was so tired out from doing–procedures, pokes, medicines…even forcing him to play just to rebuild his strength.  Most of the time it is his lack of protesting and his willingness that break my heart even further.  I would never have handled it with such bravery.  He had every right to be upset with things, but was mostly willing and calm and I just want to scream out on his behalf.  Had I only known that his body was actually shutting down I would have curled up right along with him in his blankets and spent those last days just snuggling with him.  Yes, there are many rabbit trails to go down and it has been torture.  And yet I still come back to God being sovereign.  He knew and He was perfect for Reece.  If only I could understand it here in an effort to feel relief and endure these years without him.  I’ve said it before and I’ll say it again–Reece deserved to be healed to Heaven and to be with the Lord.  I find solace in knowing that he knows now why all of that happened and that we did those things in an effort to help him, not harm him.

Last week, these very thoughts washed over me one evening as Terry and I were getting Britta ready for bed.  I got lost in them and found myself weepy and stuck in that place for a while.  The next day I attended bible study.  I’m doing Beth Moore’s Deuteronomy study on the Law of Love.  During her lecture she said something and I know it was meant for me to hear that morning.  She said (and I’m paraphrasing a bit) that the key to being a successful mother… “is not a list of 45 things, it’s one thing: love the Lord your God with all your heart, soul, and strength.” (Deuteronomy 6:5)  I love that redirect I received.  I don’t need to be a perfect mom, but in order to succeed, I need to love God, because that is the foundation for everything else.  Perhaps some moms can do it without God; try as I might, I know that I fall short.  It was soothing to hear and felt as though it was permission to begin to let go of the oppressive lie that I somehow could have done so much better.  I know I did my best.  And like I used to tell Reece, “Your best is good enough, Bud.”

I could go on, but the last thing I’m going to mention is about the blog.  So often I stumble upon blogs that cover fun topics like cooking or photography and think about how enjoyable it must be to write about such topics.  I suppose I could find something else to write about; something that I’m less passionate about, but that feels good to everyone when they read it.  Truthfully, that isn’t my calling.  I’m not sure that blogging, in general, is my calling.  When I was updating people on Reece, there were some posts in the middle where I revealed my personal feelings.  I didn’t think twice about it, because there was too much going on for me to care what others thought–I was numb to the judgment of others.  As the year has gone on and I’ve written this blog that contains my feelings and mental processing, I have felt vulnerable at times to share things.  After all, I could choose to never write another post.  No one demands that I write anything down.  Nevertheless, I have felt that even though my posts are sporadic, there is purpose for me in writing them.  If nothing else, there is purpose in keeping myself open and fresh with being honest about our life circumstances, my faith and how they both play out in my life.  I really can’t function in life without the component of faith.  Perhaps the reason I’ve needed to keep writing is to keep me ready to move on to another writing project or perhaps I’ll feel it needs to just come to an end if I wake up one day and it feels right.  I think if I could go back to a year from now, I’d tell myself to not feel apologetic over the blog–that it’s about a heavy topic.  It’s my own self consciousness creeping in–perhaps a sign of leveling off from crisis-mode.  After all, this is neither a ministry for me, nor a hobby.  It’s my life.

I’ve been privy to various people’s life circumstances this year.  Some people I know and others I do not.  People have sought me out for various reasons, usually related to health crises, as they know I can on some level relate.  The only thing I can think to share to anyone, regardless of circumstance is this–the Lord is near.  It sounds so tame when you think about it.  But upon further contemplation, it is one of the most tangibly powerful facts I have come to appreciate this year.  It is referenced all over the Bible and recently has been something I have meditated on in the following verses:

“‘Be strong, all you people of the land,’ declares the Lord, ‘and work.  For I am with you,’ declares the Lord Almighty.  ‘This is what I covenanted with you when you came out of Egypt.  And my Spirit remains among you.  Do not fear.'”  (Haggai 2:4b-5)

finishing well

I will never forget the sermon given on the Sunday that Britta was dedicated at our church.  Our pastor was wrapping up a sermon series entitled, “Thirty Days to Live” and it was about how we would choose to live our days if we knew our time on Earth was coming to a close.  On this particular Sunday, his final sermon of the series was about finishing well.  He used the analogy of pitching in baseball.  Roy Halladay had just pitched a no-hitter a few days prior and the pastor used the story to describe how hard it is to pitch a no-hitter, as often times relief pitchers come into a ball game.  By definition, to “pitch a no-hitter” requires the pitcher to throw a full nine innings of a game.  It doesn’t happen very often.  Pitching a full game, I have to believe (although I’m certainly no expert), must be taxing on the body.  Additionally, there is this thing called “winning” that teams strive to do, so bringing in a fresh pitcher often times helps in that department.  Our pastor went on to discuss that the reality is, in life, we don’t have people to come in to relieve us when we are tired and worn-out; we have to persevere until the very end.  So, how do we do that well?

I’ve thought a lot about Reece in this context–how he finished his life here.  Realistically, no one went into transplant thinking that these were his last days; no one talked about it that way and no one treated him that way until the very last day of his life.  Certainly, Terry and I had considered this many times over the course of his transplant and as he continued to decline in our home and at the hospital, we were very concerned about losing him.  But he abruptly coded in the hospital–no one ever said, “We are concerned that something may happen, here.”  He wasn’t in the PICU before he coded; he was in a regular BMT room and had just completed occupational therapy.  I’m sure the doctors were always aware that it could happen, but my point is that unlike many people with terminal illnesses, Reece was never treated that way.  His transplant was always considered “successful” in that he was 100% donor.  The focus was on his recovery, on making it all turn out swell.  We didn’t have the opportunity to say our good-byes and acknowledge the end was near until after he was on life support.  I am convinced, however, that he had some sort of inclination that he may not have much time here; there were signs of that.  It wasn’t, however, because we observed him giving up.  It seems really obvious if you look through the pictures of him from January to June that his body was slowly giving way.  But we didn’t know all that at the time or view it as such and his attitude never demonstrated that he was giving up.

I really don’t like the phrase, “Live each day as if it is your last.”  What does that mean?  Travel today; spend the day in an airplane or a car?  Do something reckless?  Sob unceasingly and call everyone you know?  Yes, those all sound like wonderful options…if you actually know it is your last day, the likelihood that you are able to do anything other than rest is probably unlikely.  But in a not-so-different way, “finishing well” is probably quite similar to fully living life.  I’m convinced that finishing well and fully living have more to do with shedding fear and meeting the day head-on, regardless of circumstances.  I believe it means to honor God in fulfilling the days he has marked out for us and to trust that God will meet us in our need and provide relief and rest.  After all, no person can step in and live our lives for us.

Yes, whether or not we know our last days are imminent, we will all be at a place in life where death is staring us in face.  We either have no clue we are in our last days, so the opportunity is now, or we will know it is coming and the challenge will be to release the grip of fear and meet our final days the best we can.  Reece truly modeled this for us.  He wasn’t in a place of defeat in his last days.  He certainly didn’t feel well and was very limited based on his health.  In fact, he somewhat became a prisoner to his body, but only physically.  Regardless of the physical challenges, he lived the days set before him with an attitude of perseverance, until his final breath.  As was the case with Reece, finishing well–phenomenally well–may simply be letting the body rest.  What a beautiful way to honor our life– to respect what God has given us by fully living within the circumstances that present themselves.  For my own day today–what a challenge it is to move through the day without Reece.  Yet I know there is a bigger plan than sadness and pain–how do I finish well, despite this challenge and other issues that present themselves?  I hope and believe that it can be done.

I think the tendency is to avoid the topic of death until we are absolutely facing it head on.  But what if today is one of my last days and I am facing it.  Maybe where I’ve been wrong about the statement, “Live each day as if it is your last” is in my interpretation of it.  I think it’s more accurate to say, “Live each day in confidence that you will finish it well.”  I do not claim to know what it feels like to be staring at death–I haven’t been there yet.  Truthfully, this whole entry came to be after I stumbled across a video posted about a young man who battled cancer for several years.  I know these stories can be hard to watch, but I am incredibly encouraged by what he has to say.  You can learn a lot about living from a person who is dying.  Knowing his cancer was terminal, he did not allow it to take over what remained of his time here.  This man was not covered in fear, but in life.  He finished well on Nov 7, 2012.