Psalm 121

I look up to the hills, but where does my help come from?

My help comes from the Lord, who made the heaven and earth.

He will not let you be defeated.

He who guards you never sleeps.

He who guards Israel never rests or sleeps.

The Lord guards you.

The Lord is the shade that protects you from the sun.

The sun cannot hurt you during the day,

and the moon cannot hurt you at night.

The Lord will protect you from all dangers;

he will guard your life.

The Lord will guard you as you come and go,

both now and forever.

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A Year Later

Yesterday marked a year to the date of Reece’s transplant.  As it turns out, the day was harder for me than I had anticipated. I knew it was coming—obviously—but didn’t expect to feel attached to it in the way that I did.  We had so many hopes for this transplant and such a desire to be celebrating a full year of new, healthy blood with him.  In fact, we had sort of “sold” the whole transplant idea to Reece by explaining that he would be the only kid we knew who was able to celebrate two birthdays a year—his date of birth and his date of new blood or his “Blood Birthday”.  We had hoped to take a special trip if he was well enough.  We had hoped for a lot of things…

I have such mixed feelings about his “Blood Birthday”.  If he was here and everything had gone according to our plans, it would have been cause for a big celebration.  However, things did not go according to plan.  The new blood destroyed his body; it’s disturbing.  He was so brave about the whole thing.  He never asked why he had to go through what he went through.  He trusted us.  He so sweetly told my mom the day of transplant that he was, “…a little nervous.”  The only thing I’m celebrating a year later is what we celebrate every day–Reece.  But whatever our party here theoretically would have looked like, it would have paled in comparison to what he is experiencing now.  That doesn’t change the hurting part here, but I take comfort in knowing that.

Many memories from the hospital have all merged together, but I will never forget a year from today when Reece awoke at 4 am, the day after transplant, ready to play the entire day.  Being six months pregnant, I tried to fight through the tiredness to enjoy it.  In fact, it is my last memory of him wanting to get down and play with toys on the floor.  I’m sure he did so for a few days after, but I cannot distinctly remember what day the floor playing ended.

Playing with hexbugs the day after transplant!

Playing with Hexbugs the day after transplant!

We miss you, Bud.

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A New Space

It’s a new year and I’ve decided to move into a new space for writing.  I have come to the conclusion that I view Like Olive Shoots similarly to how I view many of Reece’s things.  They have become somewhat untouchable and I am heavily into “preservation mode”.  I plan on keeping this blog the way it is; it will remain active for the time being as I believe it is purposeful and something that people reference and have a need to visit from time to time.  Our family also needs it for reference in many ways.  It feels a little strange to be writing primarily somewhere else, but it also feels right.  Thank-you for respecting this space and for your support, which has and continues to be incredibly meaningful to our family.

Feel free to check out my new site: www.lifeafterthursday.com

Thank-you for sharing in this journey; it has been an honor to write on behalf of Reece and our family.

Terri

 

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Haste the Day

December is upon us and we are already at the point of one year anniversaries.  I’m not sure how I feel about that–I suppose it depends on the day.  I do feel a sense of relief in a lot of ways.  Several people have asked me about Christmas and have implied that it will be hard.  Yes, I am sure there will be some hard moments, but I can’t anticipate when or where those will be.  However, holidays are days that happen once a year; traditions that we celebrate on a yearly basis.  I have five buckets of memories of those holidays with Reece.  There are things that we did as a family every day, which means I miss every day.  Each day is challenging, so I guess the missing Reece part doesn’t change because of the holiday.  Last year was particularly heavy, so comparatively speaking I know that he will not be suffering any longer.  Last year, in my opinion, was much heavier knowing that he would be facing so much.  Perhaps tomorrow, my opinion on that will change.  Grief is unpredictable that way.

I am feeling a little sad that 2012 is leaving us because it is the last year that Reece was here on earth and it is the birth year of Scarlett.  Yet the weight of the year needs to leave us.  I’m relieved that I don’t have to relive this day.  Or yesterday or the day before.  Firsts seem to be a hard sort of thing, yet I’m not convinced seconds, thirds, or fourths will be any better.  So time passes and we pass with it.

Writing the book proves to be an interesting task; it’s not even close to a book yet–more like a general outline and a few paragraphs.  It is so very different to write about past events versus current life happenings.  And it is difficult, as I anticipated, to recall the things that happened.  I am realizing that I will need to be tapping into different writing exercises to come to some sort of groove with it.  I am also accepting that it may never feel like I am in a groove at all.  It may be a labor of love that is painful the whole way through.  I hope I can present something that honors Reece.  I love writing his name, so that is one easy part!  Reece.  Reece.  Reece.

I continue to look to others who have walked this path before for comfort or some sort of general understanding.  While I’m not comforted that someone else is suffering or has suffered, I am grateful that there are others that we can be in community with, even though the common ground isn’t one that anybody would choose. I have looked at a few stories of well-known people who walked through life with at least one child who passed away.  It was a purposeful decision for us to have “It is Well with My Soul” played at Reece’s memorial service.  I knew the man who wrote the song–Horatio Spafford–had suffered the loss of multiple children in his life.  A couple of days ago, I decided to re-read a general description of his life and search for more info on him.  There are many websites that give accounts of his life.  He ended up losing six children of the eight that he and his wife had.  He lost a four-year-old son to scarlet fever.  Two years later, his wife, Anna, and four young daughters were on a large vessel to Europe for a family vacation (Horatio would come a few days later to join them, but was delayed by business) when their ship was struck by another.  The following is an excerpt from biblestudycharts.com:

On November 2nd 1873, the ‘Ville de Havre’ had collided with ‘The Lochearn’, an English vessel. It sank in only 12 minutes, claiming the lives of 226  people. Anna Spafford had stood bravely on the deck, with her daughters
Annie, Maggie, Bessie and Tanetta clinging desperately to her. Her last memory had been of her baby being torn violently from her arms by the force of the waters. Anna was only saved from the fate of her daughters by a plank which floated beneath her unconscious body and propped her up. When the survivors of the wreck had been rescued, Mrs. Spafford’s first reaction was one of complete despair. Then she heard a voice speak to her, ‘You were spared for a purpose.’ And she immediately recalled the words of a friend, ‘It’s easy to be grateful and good when you have so much, but take care that you are not a fair-weather friend to God.'”

While he was sailing to Europe to join his grief-stricken wife and accompany her back to the US, Horatio penned the song “It is Well with My Soul”; the voyage he made required he pass over the site where his four daughters perished at sea.

The Spaffords had three children after this tragedy and lost yet another four-year-old son to scarlet fever.  On top of this, their church considered these deaths a divine punishment from God.

After reading the accounts in detail, all I could do was weep for them and weep for the parents all over the world who are chosen to live out life here without a child–or multiple children.  All I could think about was what incredible sorrow the Spaffords must have experienced in their lifetime and yet this beloved hymn has brought hope and peace to so many people over the last 140 years.  I had never read the part about Anna hearing she was “spared with a purpose”, but that also brought me much encouragement for my own life.  God brings us through circumstances purposefully, not in vain. I don’t know; I guess as I look at where my life is at, I need that encouragement.  I need to know that kids aren’t swept away with parents left behind for no good reason.  I think of Anna and how painful the rest of her life probably felt, knowing that she was spared–the guilt and anguish that would have followed and the need for relief that can’t be found by the things of this world.  When I read their family’s story and think of our own life as a family, I just need to know it’s not in vain.

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Thanks-Giving

As I have gotten older, I have come to appreciate Thanksgiving more.  I think growing up, it felt like a short stop on the holiday highway from Halloween to Christmas.  And, for the record, I do not consider Halloween any sort of holiday.  I know that in other cultures, there are traditions and customs that are celebrated in more of a holiday fashion.   I can not intelligently speak to the history behind it or where it all comes from.  So, to clarify, in my household Halloween is nothing more than dressing up in a costume and getting candy.  That is not a “holy day” to me at all.  As we went through the fall celebration season, I looked around my house and decided that going forward, I am going to de-emphasize the Halloween part of fall and emphasize the Thanksgiving part.  Halloween décor will be up for the week prior and that is it.  I can not control stores pushing the Christmas season, which ultimately short-changes Thanksgiving.  I’m going to water down Halloween and try to focus on a holiday that celebrates gratitude.  I think it is incredibly meaningful and a great way to begin celebrating Christmas.  In light of where our society is at with Christmas, we all need a little more thanks-giving.  I have lots of feelings about Christmas and not nearly enough space to right about it.  If you have been reading the blog, you probably have a good idea of what my thoughts are anyway.

This year especially I have a new-found love for thanks-giving, which is why I feel even more strongly about the celebration of it.  It has been sustenance through this storm of life.  I know I included my thoughts on thanking the Lord to some extent in previous posts—especially when Reece was in the hospital.  I am not exactly sure why being thankful in the midst of turmoil can produce such a calming and peaceful effect other than God wants us to do so.  It was a surprising realization to me, but the Bible specifically states in all things to give thanks (1 Thess 5:18).  In the past, I think I viewed being thankful as an obligation, versus a necessity for getting through life.  When I follow the mental trail of the things I am blessed with, it is incredibly affirming and humbling to know how well I am provided for and how God covers my family and me in his love.  I heard a cheesy-but-true statement on the radio the other day: What if you woke up tomorrow with only the things you thanked God for today?  I generally don’t like statements that strong-arm me into doing something.  I want to give thanks with a grateful heart, because when it’s not genuine, it does absolutely nothing.  Without the heart gratitude, the words become a place marker for the rest of me to catch up and genuinely mean it. But this statement I heard has stuck with me.  I think how I viewed the whole pilgrims-and-Indians story (or at least what the text books told us in the 80’s and 90’s) was that they were given all they wanted and stopped to give thanks.  I’m not sure I focused on the provisional aspect and whether or not it was in line with what they wanted.  I’m sure we never discussed it in that amount of detail growing up.  Regardless, throughout our year and even before–well before–we were provided for.  Reece, I am learning even now, was so well provided for.  How can I not be thankful?

If you would have told me a year ago that this holiday season Reece would be gone and I would feel gratitude, it would have been a tough sell.  However, reflecting on all that has happened, I am grateful for many things.  I am grateful that I feel grateful!  I am thankful for being blessed with all three kids, my husband, my family, my friends, Terry’s job, our home…I could go on and on.  Here are some things that I feel a sense of gratitude for, as I reflect on this last year.

1.)    I have a Savior; I need a Savior.  Because of Him, I get to see my son again.  I am only separated from him briefly.  It is only because of Jesus that this is the case.  Thank-you, God, for sending your Son.

2.)    God sent a Son who suffered.  He chose to save us in a way that I can personally relate to.  I am humbled that he chose this way—of having a child suffer and die.  He could have saved us in many other ways and he chose the most painful way imaginable, in my opinion.  I would not be able to make this choice myself.   I fully admit that if I had been able to do anything to save Reece and spare him from suffering and a physical death, I would have.  That includes allowing many others to perish.  Yep—I’m that selfish.  I emphasize #1 again—I need a Savior.  Thank-you, God, for demonstrating your love through sending your Son to die.  I can not imagine how painful it was for you, but I have a taste of it in my own life.

3.)    We had a baby in the midst of it all—not part of our planning.  We were thinking in our minds that we would try to get pregnant in the summer of 2012.  Going through pregnancy in the midst of this, while we always were thrilled to be pregnant again, was a stressful thing.  I would not have chosen to be pregnant during this time and often felt like God must have some great big plan, because this pregnancy was so specifically placed in the middle of it all.  I still am working through mixed feelings of delight over Scarlett and deep sadness over Reece.  Still, God provided for our desire to have three children, knowing we would not be able to take on a pregnancy in the midst of our grief.  We found out we were pregnant just a month before any of Reece’s blood work began.  Thank-you, God, for knowing what is in my best interest, even when I do not.  Thank-you for having a sovereign plan over my life.

4.)    I have five years, three months, and eleven days of spending time with Reece on earth.  It could have ended during the pregnancy.  It was strange, in light of the circumstances, that it did not.  Reece’s time here was a gift to us as parents and all that know him.  Thank-you, God, for allowing us to know Reece for five sweet years before taking him to be with You.  I anxiously await the day when I get to look into those gorgeous blue eyes again.

5.)    I am blessed with three children.  I love each of them dearly.  I had nine weeks with them here on earth together.  In those nine weeks, they were probably all three together three times.  I have one picture of them together.  At times, I have felt anger over this.  I still feel a longing to have them be together and for our family to feel that wholeness.  Yet somehow, over these last few months, I have come to appreciate that I actually do have a picture of them together; that I do have a few nights when they were all under one roof.  I choose to see those few weeks as a gift.  Reece may have never made it back to our house, but he did.  As stressful as it was, it provided times for us to be together as a family.  Thank-you, God, for the moments I experienced with all three of my kids together.

6.)    Even though I know Reece suffered, I know he was provided for.  He stood in his furnace and God was with him.  As I reflect on the last year, the last five years, read my journal entries from Reece’s life (as limited as they are), remember things that he said to us over the years and during his time in the hospital, I know God was with him.  Thank-you, God, for providing for Reece in ways that only You and he will know.  Thank-you for the few things that Reece shared with us that permeate our souls and provide deep understanding that you were always with him and that he knows and loves You.  Thank-you, for being his perfect Parent.

7.)    I know where Reece is at and that he is healthy and happy.  I have no doubts.  Thank-you, God, for promising Heaven, to those who believe in Jesus.  Thank-you for reassuring us that Reece is with you there.

8.)    I have a loving family who is supportive.  They came together in this time and showed love and care for us and for Reece.  Reece loves them dearly.  Thank-you, God, for our family.

9.)    Reece passed away from a complication of a complication of a complication of a complication.  There is nothing I feel aligned to in regard to pointing fingers at why he passed away.  It is not a distraction in that way.  I don’t feel focused anger at any one thing, because where do I start? Adenovirus?  GVHD?  BMT?  MDS?  Each contributed to Reece’s body failing.  I certainly struggle with what happened, but in regard to how to direct my efforts going forward, I’m more concerned about focusing on his soul and his faith.  I know God will restore his body someday.  Everyone has a body that will eventually fail.  Thank-you, God, for resolving this part mentally, for me.

10.) God is sovereign.  He gets my life way better than I get it.  It takes a whole heap of pressure off me—a person who struggles with anxiety—to figure everything out.  Included in my life is faith in Him.  Faith is a gift. Thank-you, God, for being sovereign over all things and for giving me faith in you.

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Speaking of Answered Prayers

I want to thank everyone out there who continues to lift our family up in prayer.  It is needed, felt, and appreciated.  I have been told by many people that the early childhood period of parenting and life goes by so quickly…, “The days are long, but the years are short.”  Our life right now feels somewhat in reverse–the days are short, but the years (or months so far) are long.  However, this last month or so it seems that the days get longer and longer, too.  We certainly are still in need of prayer and are encouraged that some prayers are being answered at this early stage.  We are, in fact, surviving.  That feels monumental right now.  We are also able to have many laughs and what would appear to be “normal” moments.  They are only moments, though, but we will take them.  We are thoroughly enjoying the girls.  We are thoroughly missing Reece.

I was at the home of a close friend last week for a playdate with the girls.  We really haven’t had any playdates at our home since Reece passed away.  I intend on having people over at some point, but we are still in the very slow and not very steady process of packing up many of his things.  More things need to be put away before any playdates can happen.  So we headed over to our good friends’ home.  One of the girls we visited, Stella, is the only child who saw Reece after his transplant.  She visited him in our home when Reece was couch-bound and constantly asking for warm blankets.  He spoke very little during that leg of his journey.  In fact, the two of them barely spoke to each other during the visit, but sat on the couch together and watched Scooby Doo.  I am sure it was awkward for both of them, but it meant so much to Reece to see her.  His demeanor was very different as a sick child, but he talked about their visit after she left and how much he liked seeing her–and he grinned about their time together, which was his way of showing happiness in the midst of a very challenging place in his health.

So while we were at her home last week, Stella and I were in the living room together while I was feeding Scarlett a bottle.  And this was our conversation:

Stella: Can we come over to your house sometime to play, even though Reece isn’t there?

Me: Yes, you are always welcome to come over to our house.

Stella: I bet you were sad when Reece died.

Me: Yes, I still am sad.  But I am so glad that you were able to come and see Reece when he was in our house.  I know he didn’t say much to you, but he was so happy that you came to see him.

I can not put into words how much it meant to me that she talked about Reece, that she said his name, that she acknowledged the sadness, and that she said what she felt.  I was also glad to be able to share with her how meaningful her visit was to Reece.  Kids are so beautifully real about things.  I wish that adults could be as transparent.  It is perfectly acceptable and welcomed to talk about Reece, by name, to us.  We are still his parents and he is still our son and part of our family.  We talk about him every day and think about him nearly every waking moment.  We laugh and cry about him.  We love it when people share memories of him or simply ask how we are doing.  We love hearing his name and hearing about him. I know there is the worry out there that one will say the wrong thing and so the tendency is to avoid or shy away or act like nothing happened at all.  Or maybe it is such a painful topic that it is easier to avoid the encounter altogether.  Saying the wrong thing is highly unlikely.  It’s better to take the chance of saying the wrong thing, versus not saying anything at all.  If you or your kids knew Reece personally, we treasure the memories that you share, because very few people over the course of our lives will have memories of him.  If you walk up to me and say nothing more than his name, you will have blessed me more than you can imagine.  That’s how much it means to me and that’s how much we miss him.

So speaking of answered prayers, I am embarking on the journey of writing a memoir about Reece and his journey through transplant.  I have often reflected on a year ago when I was feeling led to write a blog and my motivations for doing so.  At the time, part of my reasoning was to have details to share with Reece as he got older.  I wanted him to be able to read what he went through and to be able to explore his journey in greater detail.  As I look back at the blog a year later, I realize that in light of Reece’s passing, likely a big purpose for it was to support writing this book and remind us of steps along the way. It’s not exactly the way that I expected it to be used, but I am so grateful that I wrote it now, so I will be able to go back and remember things that would have faded by now.  I know this will be a difficult thing to write, but I am confident that if I can do it, it will be purposeful to me, meaningful to our family, and hopefully powerful and God-honoring for others to read.  My blog posts will likely be even more sparse due to this, but I will continue to do some updates from time to time.

There have been some clarifying moments for me and I know they are in some way answers to prayers lifted on our behalf.  So, thank-you.

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Parental Advice

My last post that was written a couple of weeks ago was something that weighed on my mind over a period of time.  I mentally “wrote” parts of it for nearly two months in my head.  It took much cognitive basting before I could actually sit down to type it out, as it is not a subject matter that I take lightly.  The devil has become this commercialized figure in our society that we, as a whole, feel comfortable joking and laughing about.  People dress up like him for Halloween; many don’t believe he even exists.  However, I find it irresponsible to bring his name to my blog in any sort of nonchalant manner.  He is a creepy dude and I don’t like giving him much “air time”.  The day I actually blogged about it, I felt compelled to write about the subject.  I can’t exactly tell you why it needed to happen on that particular day, but many of my posts have been like that.  I will have something brewing for some time and then it just pours out of me.  I mention this part to illustrate the point that my last post wasn’t done on a whim or without some careful consideration.

My reason for circling back about the journal entry is what happened the day after I posted it.  I was crawling into bed late the next night and felt like I needed to read from the Bible.  I opened it up, turned to the Book of Jude, and was hit on the side of the head with the following passage:

“But even the archangel Michael, when he was disputing with the devil about the body of Moses, did not dare to bring a slanderous accusation against him,  but said, “The Lord rebuke you!”  Yet these men speak abusively against whatever they do not understand; and what things they do not understand by instinct, like unreasoning animals–these are the very things that destroy them.”  Jude 9-10

When I read that, it hit me like a ton of bricks.  It was apparent that God was telling me that I do not know what I am up against and that it is his job to deal with Satan, not mine.  I can resist temptation and the products of the devil’s work, but my job here is to point to God in all facets of life, not focus on the devil.  Focusing on the devil is not where I can be fruitful, it is where I could get lost and potentially consumed and potentially take others down with me.  And God is right–I have no understanding of what the devil is all about other than he vehemently opposes God and would love to drag me down to the depths.  In that moment that I read this passage and even now as I type this, I felt miniscule and weak, as I should.  I never assumed that I would be going forward and doing something in opposition to the devil without God’s help, but to have him blatantly point that out to me in his Word was quite humbling, to say the least.  God continues to be so parentally good.  As I reflect on how he handled it with me, it was done out of total love and protection for me.  He wasn’t belittling me, he was warning me to not get involved in matters beyond my human comprehension.  Point taken.

I don’t feel compelled to write about most of my personal prayer time or experiences with the Lord.  But I feel like it is important to point this out, since I chose to write about the subject matter.  In fact, I was so taken by this passage of Scripture, I nearly took the post down immediately.  I could and still do feel the weight of the message to me and I don’t take it lightly.  It has stayed up, but only because I wanted to follow-up with this and for therapeutic purposes.  I also know that the post reflects my raw and true feelings and that taking it down doesn’t change the way I feel–since God knows my heart, I will heed his warning, but respectfully leave my post where it is at.

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Journal Entry #7: A Finger for the Effen MOND

Yesterday, I mentioned that if the energy I have for Reece isn’t used in a positive manner, it could become destructive.  Yes, this energy has to go somewhere–right now it goes somewhat towards the blog and somewhat to other areas.  Depending on what feelings come forth from it, there can be deep desires to be consumed by it.  I don’t want to be consumed by it, which is why I am trying to find a healthy way to channel the energy, to do something positive with it, versus drowning in deep emotions.  Deep emotions are important, but I fear that the waters I tread when I am in them may become choppy and take me down.  It wouldn’t even take a big wave to do it–just enough of a wave to wash over my head and take me under.  And under can look like many different things–but I know that whatever “under” may be it has been strategized about and carefully thought out by the devil himself.  Or, as Reece used to say, “The Mean Old Nasty Devil” (the MOND).

I have repeatedly stated that God has covered Reece and us, but for the rest of the post, I’ll speak for myself versus Reece or Terry or any of my family.  The Lord has been so good to me in showing me ways he has been supporting us.  And truly, I don’t think he is necessarily nearer to me now than he has been at any other time of life.  However, much of life’s “noise” has been muted during this last year, which has helped me understand God and his presence in a very different way.  Our circumstances have caused us to rely on God.  It isn’t about having a strong faith at all and it isn’t about being a “better” Christian.  I tried everything I could to figure out a way to fix this–maybe if I pray in a certain way or ask in some special fashion, Reece will get better.  I had to yell “uncle” many times to realize there was no path but God.  In fact, for me, it is as I mentioned yesterday; it’s about being at a completely weak and broken place.  It is the first time in my life I can honestly and purely relate to the apostle Paul when he says:

“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.   That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”  2 Corinthians 12:9-11

There has been no option to muscle my way through this.  There is no amount of caffeine, alcohol, retail therapy, self-help books, or motivational speakers to get us to persevere.  It is impossible to do without God and self-reliance quite possibly may be the path to personal destruction.  It isn’t that I’m intrinsically a weakling–I’ll be the first to admit I am a relatively strong and most certainly stubborn person.  I like to win.  I like to say I did it all by myself.  In fact, I am built this way so well, I’m amazed that God was gracious in allowing me to mess up on my own for the first 32 years of life.  I look back to life’s roadmap that has been full of me stubbornly choosing my own course and messing up.  My successes are only built on the foundation of the Lord and, truthfully, done in a way that he allowed me to feel like any success I found was of my own volition, when in fact, he was gently (and thankfully) pointing me in the right direction.  I feel like it was his way of letting me try my best on my own before he stepped in.  He is so parentally compassionate in that way.  And I’m sure he knows that there will be many more times in this life I will fail to seek Him first.  He knows me so well.  No, I’m not weakling, but no matter how strong I am, I am no match for the things of this world or for what we’ve walked or for where we are going.

As much as I feel like the Lord has been covering us, every day I have to make choices to not let Satan “win”.  This may sound crazy, but I don’t care.  This is the reality for all of us, but again, I’m talking about me here.  There are certain points in life where I have been more vulnerable than others.  These are low points in my life–when my guard is down, when I’m tired, when I’m seeking comfort.  It probably goes without saying, but this is one of those times.  Satan is ready to pounce.  And again, I’m sure he’s been lurking every day of my life, but I’ve never been as in tune to it as I am right now.  For every thing that doesn’t beat us down, he has a tactic try to do so.  For every time I thank God for something, he’s ready to take me down with some crappy thought or doubt or attempt to create fear in an effort to abandon God’s promises.  It’s not even necessarily obvious things that he seeks to use; it could be mundane things, half-truths, or low feelings.  He’ll use anything he can find to try to drag me down.  He tries to grab a tiny corner of the page of the day in order to flip the whole thing over with his words/feelings/doubts/fears being the place where the day leaves off.  Then, he tries to do it again the next day.  I notice it every day.  I usually refer to these tactics as “traps”–usually mental traps.  Case in point, I will think of a painful memory of Reece–usually one around when Reece was in our home and the grueling routine he–we all–endured.  It becomes easy to pick apart the memories and beat myself up over the things I “should have” done.  I should have spent more time with him, versus allowing others to help.  I should have taken more night shifts with him after the baby was born.  I should have done this and I should have done that.  If I’m not careful, I am mentally immobilized to do much else with the day–that is if I allow Satan to do his damage and keep the edge on the day.  All that energy that I have in my life that has always been and always will be devoted to Reece, that is vulnerable too.  It must be channeled into something good; otherwise, it could easily be put toward focusing on all the things that “could have” happened.  It could be used to focus on how I feel we were wronged or to keep my head in the hospital and the trauma versus in the hope of the future.  It could be channeled into all sorts of bad habits and vices.  But that’s not from God.  It is only through seeking God’s truth, reading the Word, reading God’s promises, and allowing my understanding of God’s provisions for Reece to wash over the memories of what we experienced that I have the ability to ward off the damage that Satan seeks to bring to my life.  And it could be so damaging.  So it turns out, the armor of God is the real deal.  We actually do need it…at least I do.

Right now, I’m just making it a point to recognize when it’s happening and call it out for what it is.  I’m spending a lot of time trying to discern truth from lies.  And as our bible study leader said last week, “A half truth is a whole lie.”  Amen.  But you can be sure that whatever comes out of this in my life, it will be my way of giving the effen MOND the finger.  Classy, right?  I figure it’s his terminology, so I can use it on him, just so I make myself perfectly clear to him.  I hate that guy.

Whatever I end up doing, one thing is for sure; it will not be without praising and thanking God and without professing his deep love for me.  And it won’t be without professing his deep love for Reece.  I no longer care what others think of my feelings about God.  Without God, there would be no more “what next”?  There would be no more looking forward.  It would always be looking back and longing for things of the past.  There would be no more hope and excitement over seeing Reece in the future.  Even more so, there would be no more certainty of it.  Hope implies the possibility of something.  I can hope around the timeframe of seeing Reece.  I hope that I see Reece soon.  However, it gets even better than hope with God, because I know that someday I will.  And every single day that is something that I need to know.

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Neil, Faith, and Purpose

We’ve been doing a bit of traveling the last couple of weeks.  It has had its own therapeutic purposes and it has kept us quite busy.  Last week, we were able to go to see Neil Young in concert in Chicago.  It was good for us to see him.  Reece actually claimed that “Heart of Gold” was his favorite song, followed closely by “Ohio”.  We often listened to those songs on the drive to preschool and Reece requested hearing those songs when we were driving to and from the hospital for home visits.  In fact the first thing he asked when we got in the truck before taking him home that first trip back was, “Can we listen to ‘Ohio’?”  While Neil didn’t play either song during the Chicago concert, it was a great show and I think an important thing for Terry and me to do.

This past weekend, we went to Faith’s Lodge, which is a large lodge in northwestern Wisconsin that hosts bereaved families who have lost children.  It is a place to spend time with each other in a serene setting, with other people who understand the loss of a child, and just be.  The weekend was an important one for us.  I do believe we will go back next year, although we will likely go to a parents’ only weekend.  The ages of our girls demand much hands-on time and thus make it difficult to connect for long periods with others. However, I am glad that the girls went with us this time.  I don’t care much for leaving them right now and it was really neat to see all the kids of various ages playing together.  It occurred to me as the days passed that the kids that came to the lodge somehow corresponded in ages to the siblings lost by the other children.  So kids and families played with each others’ kids in a therapeutic way…or at least that is how it felt to me.  There weren’t any five-year-olds there, but there were many boys there older than Britta.  It was bittersweet to see them running laps around the room, pushing oversized dump trucks and Cars vehicles, much like Reece used to do.  Britta naturally gravitated to them.  I noticed other families doing the same with both of our girls, although it may not have been a conscious thing.  It was different from a regular playdate with other families.  While I would never wish the loss of a child on anyone, it was important to have that time with other people who “got it” and who probably felt those bittersweet twinges in a real way right along with us.  No one there discussed it with me, but then again, no one had to.  If you’ve been through it, you understand–there’s no reason to discuss it.  And that type of understanding is priceless.

There is this really beautiful area on the property where people paint stones with their child’s name on them and lay them near a bridge.  We painted a stone for Reece.  I think if he is aware of the stone (which I believe he is), he probably really likes it.

There is typically some period of time, before you add a child to your family, for preparation, planning, and adjustment–be it via pregnancy or the adoption process.  It makes sense to me that after the loss of a child, the time immediately following would be an intense adjustment period as well; perhaps it never ends.  As I discussed with one of the other mothers this weekend, right now it feels perfectly alright to be broken.  I feel like we were operating in such a heightened survival mode for so long that now, the feelings of the trauma and exhaustion are catching up.  No one can fix it or make it better and I don’t want anyone to try to do so.  I guess this part of life demands brokenness and that brokenness has its own purpose.  We need to assess the damage before we can try to put anything back together.  Sometimes things can’t be made right and sometimes the holes that are created can’t be filled.  I’m not interested in filling the hole and I’m not interested in even attempting to go back to the way things were.  I’m not the person I was a year ago and I’m never going back.

I have been on a quest of sorts these last few months to figure out how our situation with Reece will be used in our lives.  I love hearing from people about how Reece’s life touched their own; I know our Reecie had a big impact on this world and will continue to do so.  He fulfilled his purpose here and I know we will hear about some of it, but that most of it we likely will not.  I don’t believe that we were given this unique path as Reece’s parents to have it go unused in our own lives, though.  Part of my desire to figure out what is in store next is that one doesn’t lose parental energy for a child that has passed away.  I haven’t lost the energy that I have specifically for Reece and I can’t just redirect it to my other kids.   It has to go somewhere and I want that “somewhere” to be a productive and positive thing.  It is slightly ridiculous that I am rushing to figure this out–it’s probably a knee-jerk grief reaction to scramble; if I have learned anything it’s that God has perfect timing for everything, including this part of the plan.  Still, I think I have a fair amount of paranoia that if I don’t figure out something productive to do with the energy, it could become destructive.  But I’ll save those thoughts for another post.

Another part of my desire to know what is next in store is that I want to figure out my life’s purpose in some sort of attempt to figure things out earlier on in life, versus wasting time on the non-essential.  Somehow in my mind I hope that perhaps the Lord will mercifully spare me from a prolonged life here by doing so; maximize my time in some sort of way.  This last statement, I can already tell as I re-read it, could be largely misunderstood.  I’m not suicidal or ungrateful for my life.  I love my life here–love my husband, my kids, my family, and who I believe God made me to be.  But I believe to my core that this is not our final place–that God has a purpose for each of us on earth and that once it is fulfilled, our time here is done.  This strong belief I have, coupled with my grief state over Reece, leaves me feeling urgent to figure out the rest of the plan (an impossible task, really) so that my time here won’t be living until a ripe old age.  At the same time, I know a big purpose of mine is to raise my girls in a God-honoring way and to help them understand how Jesus loves them.  And I thoroughly enjoy all of my family, so it feels conflicting to want to leave them here.  Until I’ve done the part God has tasked me to do on the child-raising front, I will be here regardless.  Still, I believe there is likely another part of my life’s purpose that I have yet to uncover.  So I feel urgency to help life along as best I can, if that makes any sort of sense.  I don’t want to take a lackadaisical attitude that prevents me from seeing Jesus and Reece for one more day than necessary.  That may seem bizarre, but if you walked in my shoes for five minutes, you would understand the constant pull Heaven-ward on a daily–no, hourly, and at times minute-by-minute–basis.  I suspect when my girls (God-willing) graduate high school and move out, it will feel like a watered down version of this.  Heavily watered down, that is.

On an encouraging note, I feel like I may have received some clarity over the last couple of weeks regarding what I am supposed to be doing going forward.  I am still praying about it, because it is admittedly not a path that I would naturally be choosing.  And since my life, especially this last year, has been full of God’s plans for me being completely inconsistent with my own desired outcomes and plans, this seems to be a sign that it may in fact be the right thing.  This area of what I believe I am perhaps being called to do seems to make a lot of sense to me in light of all that has happened and our desire to make some sense out of it.  The most I can say right now is that I do feel it involves writing.  So I thank-you for your continued prayers in this area, as sorting through this will be an important part of the healing process for me.  I also thank-you for your continued prayers for our family.

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Filed under Family, This and That

Few Results

We met with Reece’s doctors last week to discuss the results of his autopsy.  While I appreciated reconnecting with both doctors, I must say, I hope I never have to have a meeting to discuss such a subject matter ever again.  It was neither overly emotional nor surprising.  Still, they verbalized things that we knew all along but no one ever really outright stated.  It’s not that the staff wasn’t truthful with us.  But when you are walking that road, you can’t just state certain things in such an emotionally-charged environment.  Additionally, no one really knows for certain what is going on at the time.  It is a very confusing and complex process; Reece’s was more complex than most.  Without going into all the details that the autopsy revealed, I want to mention two things.

First, Reece was 100% donor and one cord did, in fact, win out in his bone marrow.  I guess it doesn’t really matter to me, though.  He isn’t here with us, so to me, I bring it up to tie up the loose ends that we discussed throughout this whole process.  From a blood-exchange standpoint, the transplant worked.  But honestly, it just feels like a cheap consolation prize at this point.  Second, Reece’s primary physician told us that he had the worst case of skin GVHD that she has seen yet in her practice.  Granted, she is one of the younger doctors on staff, but still, it is pretty rare for kids to have GVHD this severe.  It’s much more common for adults going through transplant.  Kids’ bodies are so much more resilient.  So, we’ve been chewing on that conversation over the weekend.  Somewhere in the archives of this blog I mentioned how I believed Reece’s story to be about enduring much as a young child.  I was right.  But that is only part of his story.

Where I struggle today is not having the opportunity to have discussed what happened with Reece himself.  In my mind I envisioned that there would come a day where he and I could actually discuss what happened.  I could explain why we made certain decisions and why, as far as what we understood, he had to go through BMT.  I know he doesn’t need me to have that conversation with him now, because he knows why it happened, why it had to happen the way it did, and how it ultimately will be used by God.  But I need that discussion.  I want to hear in his own words what it was like for him.  I want to apologize for so many things that happened.  I actually thought that I would feel some sense of closure on the medical side of things after we found out the autopsy results.  Without Reece here, it is incomplete.  For all the joy-filled feelings I have for him, it still feels like I am sitting here licking the BMT wounds.  Truthfully, I’m not sure how to bring that to resolution.  It makes no sense to constantly remind myself of what happened.  However, I could see that part never going away during my lifetime here.  Because even though Reece doesn’t need that conversation with me, I need it with him.  There is no such thing as talking yourself into feeling better about this type of situation.  As I’ve stated so many times before, it is what it is.

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Filed under Bone Marrow Transplant