Running for Drew

The half marathon I've been training for, the MedCity half, is on Sunday.  I've spend many miles and hours running, preparing for the race.  It's been a very effective outlet for my emotions.  A great way to clear my head.  On days I couldn't cry anymore, or didn't want to, I ran.  It gave me a goal to work towards.  And, like almost everything in life right now, has shown me important truths about life.  Some I've already shared, but some others haven't yet.  I must have wrote this post a dozen times in my head as I worked through these thoughts.  I wanted to share it here, if nothing else, so I remember them!

After one of the first longer runs, I had what I thought was a blister on the edge of my foot.  But it seemed different, more from pressure, then a point of discomfort.  A running pal told me it probably was the start of a callus.  Of course!  That makes sense, why didn't I realize that myself.  Your foot needs to toughen up, build up a tolerance for what is being asked of it, so that it can handle more and more.  And that process can be painful, but nothing is necessarily wrong, its just how it feels to form the callas.  Isn't that so with life too?  I can think back now to the different "small" things, that still hurt at the time and seemed really difficult, which built up my endurance for the big stuff we've handled this last year.  The process to make you strong hurts in an of itself, but is necessary to get you to where you need to be.  I could tell you specific stories, things that we went through before all this with Drew, that I know were preparing me for this great trial.  At the time, they were painful, and felt like something was wrong.  But now I see.  I was just building my calluses up to be able to handle this marathon we were about to begin.

Also, I learned a lot about pace.  It is a marathon, not a sprint, literally!  If I start out too fast, too strong, I pay for it later on.  How many times in life do I go rushing in, race out of the gate, when it'd be better off pacing myself?  Many times.  Trying too hard to be "okay" after Drew's death.  Even starting Warrior Wagons with high hopes and dreams, we need to not take on more than we can handle to start out.  It requires a lot of self control, a lot of self awareness.  I think I am still figuring this one out, and it has helped to see it physically in my training.

I have also been reminded of a phenomenon in running, that has new application.  This is my third half marathon, and once again, I've seen that in the longer runs, the first 3 miles seem to be some of the hardest.  And even the shorter, mid-week 3 mile runs sometimes feel worse than the long ones.  Why?  I think it's because it takes that long for your body to get going, to get into a rhythm.  And since it doesn't feel good early on, you are left wondering how you can do it for the long distance.  But what ends up happening is it isn't that hard the whole time.  It does get easier, defying logic.  Once you get going, miles 4, 5, and 6 and even beyond seem to fly by most times. "I could do this forever!" I sometimes think.  But you have to get through the first 3 miles.  Which some never do.  They quit right before it was about to get easier.  Maybe that's how this will go, since Drew's been gone.  The first 3 miles, this initial period after his death have been hard.  But I will find my rhythm.  My body will get going.  And it will get easier, defying logic.  I won't always feel like this.  It will get better, and I can go the distance.  I survive off that hope many days right now, when I'm wondering how I long I can make it.

And of course I have to mention the lesson I learned from that tractor, which applies to running as well.  Starting out with 13 miles in your head can make you overwhelmed, tired before you start, but breaking it down makes it doable.  It's a mental game, but one you can win if you take it mile by mile. I don't have to do 13 miles right now, just the rest of this block.  Just finish this road before the turn.  Then set your next goal.  Mile by mile, I get through my long runs.  Just like the tractor in the field taking it row by row.  And just like I will do life when it is hard, and as it gets hard again.  Day by day.

Side stiches have been a struggle for me this training season, like they are for many, but this time have taught me a lot.  Before when I'd get one, I'd think I was done.  I thought you had to stop to let them pass before you could run again.  But, early on, I decided to keep running.  It hurt.  But I purposefully breathed through it.  I held my side, kind of bent over, and just kept going.  Got in a zone and pushed through it.  And I was surprised to feel it fading away.  You don't have to stop!  If you keep going, it will pass.  It hurts, but it will pass.  Who knew?  I'm sure you all can see where I'm going with this.  Things come up in life too, even when we are on the right track, doing the right things.  Training, taking things one day at a time,but struggles arise.  Sometimes we just need to breath, get into "the zone", and keep going.  And it will pass.  In the thick of it, you doubt it will, you think you should stop, but if you keep going, it does get better. 

And the final lesson.  When you get to the last couple of miles of a long race, you are tired--which is kind of an understatement. Your body feels totally drained of energy.  Your lungs, totally empty of air.  It feels like you have nothing else to give.  For those of you who have been there, you know the feeling.  But somehow, you make it those last couple miles.  You realize, when you have exhausted all of your conscious strength, that there is a hidden strength, which brings you through.  You can do so much more than you thought you were capable of.  That's why people run 13 miles or even further, or at least that's why I do it.   It certainly isn't because it feels good the whole time!   But to discover, to feel that strength, and the satisfaction you have crossing the finish line. It's worth the pain. 

During the hard weeks of treatment, and the disappointments of the last few months of Drew's life, I would feel similarly empty, drained of my strength.  But the inner power through God would kick in, and I was left amazed at His might. Amazed at what I was capable of through His power.  I felt it so many times last year. It was such a comfort and hope.  I don't have to do this by my own strength.   If I just keep my head down, and preserver, God's power will take over, and I will get through. "For My power is made perfect in weakness” (2nd Corinthians 12:9), that's a promise. From God.  When I feel so very weak in grief, like I have nothing else to give, God's power is perfected, and he can get me through anything.  He already has.  Just like I experience during the last few miles of a long race, we have hidden strength that only can be truly discovered when we've gone through all of our other resources.  God's strength is there for us when we have nothing else to give from ourselves.



It has been a lot of work to get ready for this race.  Like I said, a lot of miles, a lot of time, but also a lot of emotions that I have worked through along the way.  I know that Drew will be with me as I run on Sunday.  Spiritually or not, but certainly there in my head, and in my heart.  Inspiring me to keep going, even when I'm tired.  To push through, even when I'd rather quit.  Because Drew never quit.  Up until the last day, he tried to climb down from bed to go to the play room on full oxygen support and with a chest tube in place.  I will run with that kind of determination, and keeping all of this that I've learned in mind.  And I will finish.  For Drew.  And for myself.  Wearing this simple, yet meaningful shirt.

And doing some shameless advertising to those I pass ;)

If you see me in the Rochester running the MedCity half marathon on Sunday morning, say hi!

Graduation Night

Tonight Molly graduates from Preschool. A class she's been in for actually a year and half, since she started in the KPrep class in the middle of last year when Drew was diagnosed.  Her teacher and that classroom have been a part of her life as long has cancer has.  And this week we close that chapter.  I can feel the significance of it.

I don't think I even fully grasp how much the consistency, her teachers, the staff, and her friends have done for us since we started.  As we were trying to figure out what we were going to do last year, since I couldn't be two places at once, a friend who works at the school went out of her way to squeeze Molly in the class.  And since then, Molly's really thrived, during what could have been a really difficult time in her life too.  I hated that I couldn't be with her everyday.  That we didn't get to finish our journey together with me at home with her full time before she started school.  But, really, each day she came back excited about the things she did, showing me her papers, and telling me all about her day, I know God was taking care of her, when I couldn't.  Through all the wonderful people at Pacelli.  Here she was last year, after checking out the class room right after Drew was diagnosed, and then her first day, and last year's graduation.

I can't tell you how many times kids from other classes going down the hall at pickup would ask Molly how she was doing, how Drew was feeling, and Molly would walk away and ask me, "How does that girl know my name?".  Because they know us here Molly, and are praying for our family.  They did fundraisers for us, prayed for us--made us a prayer chain that circled his room during transplants and his final week, and surrounded us with love each day.  Pacelli will always have a special place in my heart, for getting us through a season that was so hard, by taking such good care of Molly.  I have been asked to be the commencement speaker at their commencement ceremony in a couple weeks.  I was honored and quickly accepted.  I hope I can give back a little, by delivering a speech that is meaningful.  A BIG thank you to everyone who has been such a big part of our lives during this challenging time. 

But tonight I really hope to focus on Molly.  I can already see how easy it would be to sit and watch, and be filled with sorrow for what I will never watch Drew do.  To picture him up there singing and what his "what I want to be when I grow up" sign would say.  And then go even further and grieve that I won't ever see him all grown up in this life.  But I need to keep remembering that Drew was never suppose to be older than 2.  It's not that he wouldn't have been so cute at 5 graduating preschool in his cap and gown ( are you kidding?  He would have been the cutest!!), but there never was going to be a 5 year old Drew.  It's so hard keep that in mind, to push away the tempting thoughts.  Pray with me that I can do it anyway.

Because I want so much to make it about Molly.  How awful would it be to have your mom cry at every big event in your life because your brother isn't there?  I can't have it be about Drew.  And I guess at the first milestone, I am resolving to set the precedence.  It needs to be just as happy as it should be for her.  Or else cancer wins.  Drew won't experience this, but Molly surely will, with a fully present family, who can still smile.  After all, she so deserves it!  Seeing now all the adjustment she handled, all the weeks that her and dad did life together with work and daycare, while I was at the hospital with Drew.  She deserves this celebration of all she's accomplished.  How proud I am to have Molly as my daughter.  Tonight I want to show that by how I act.  Here's her this fall on her first day again.  I wonder what her "when I grow up I want to be" will say this year!

But that doesn't mean I'm not sad.  As hard as I work to have the right attitude, I am sad for what I thought I was going to get to see my TWO kids do.  And I feel like it would be a mistake to not acknowledge and grieve that.  So I'll cry my tears this morning.  With this precious time that is such a gift, I'll cry for myself.  For what I thought I would get to see my son do.  For a lifetime of events I'll face where I'll no doubt feel like this to some degree.  And for another part of our chapter of life with Drew coming to an end.  Never to be again.  And not just for schools, but for phases of life.  Next fall Molly will be in kindergarten.  The "finish line", or at least a major shift, for a stay at home mom.  A place I didn't think I'd reach for another few years.  What's next for me?  I wasn't done being a mom to little kids at home yet!   It's only been 4 months now, its still very raw at times. I think I'm sad for all of it this morning.

But I'll gather my strength, ask for it from Above, and pull it together, just like I did for Drew, but this time, for Molly.  Because she needs me to.  Last year at this concert, Josh was traveling so my mom was there with Drew and I.  And when the curtain opened and Drew found Molly in the group on stage, he pointed and said (loudly), "There's Molly!!!".   I'll just know that tonight, and for the rest of our lives, Drew gets a front row seat.  Will be with us in an even more intimate way than he "would have" been.  He'll always be a part of our big events, and through his example we'll choose to get past our pain, or heartache, to enjoy them with him.

A friend reminded me how Drew acted during Molly's birthday this year.  Never trying to steal her thunder, or blow out her candle himself, but watched with everyone else and smiled from ear to ear, singing, and clapping.  Coming over to her at the end, saying he loved her and giving her a kiss. I'm sure that's just how he'll look watching her tonight, and for the rest of her life.  Beaming with joy for HER, and wanting her to know how very much he loved her.  I should do nothing less.

Trees in a Forest

The Death and Dying Resident seminar I was asked to be a part of was a very powerful afternoon.  As I guess it should have been.  It turned out, I was there as one of five families on the panel who unfortunately have lost a child.  And we all had such different stories, our children representing unique situations within Pediatric Medicine.  One, a premature baby, born at 23 weeks who lived for two days.  Another, an 8 month old who died of heart issues.  Also, a teen killed in a car crash.   And a boy who was born with serious medical issues, but defied expectations and lived to the age of 13.  And then us, the 2 year old who's life was ended by cancer.  As the stories were being shared, I was overwhelmed with the amount of pain sitting in that room.  How strong each of those mothers and grandmothers had to be to even be sitting in those chairs in the first place.  The life experience that each have inside of them, and how great a tragedy each one was.  Each life was so significant and important.

I was humbled.  And really felt for each of them. Who am I to think no one has grief like mine?  In light of some of their struggles, what do I have to complain about?  I felt almost embarrassed.  We had time with Drew. He was fully with us.  We got to know him and have wonderful memories to cherish.  Yes, we had hard times, and disappointments, but through those we were given the opportunity to prepare for his death.  We could savor each "last", even though it was heartbreaking, but they didn't pass by unnoticed.  How would it feel to have Christmas pass, not knowing it was your last one together?  Or even the last words you said to them being something trivial, or worse, harsh?  What if you never even got a first of any of those things?  And we got the privilege of having a say in how he died.  We got to make some decisions on how we wanted it to go down.  The illusion of control does wonders for your state of mine in situations like that.  What a gifts we were given. I left feeling very thankful. 

It felt like times last year when I'd feel so isolated at home, like we were the only one with serious problems, but then I'd come to St Mary's.  Walk around the hospital, the PICU, and see how very much we really did have to be thankful for.  Or when I'd meet other families in the play room, listen to their story, and walk back to our room with Drew and give him an extra hug.  Thankful for our own problems, and not theirs, as awful as that sounds.  But they probably thought the same thing after talking with me.  Its a peace, that you know what?  Life IS hard.  But I clearly have someone watching out for me, helping me out along the way.  What do I have to be afraid of?

Its all about perspective.  Yes, there are always some that have it better, easier, than us.  But there are also many that have it worse.  And if you can't see that, you aren't looking.  I think back to the 3 years that Drew was a part of our family here on Earth and am filled with gratitude for what we were given in him.  I think I haven't been as good lately about that being thankful part.  Letting my broken heart convince me that we are to be pitied.  It's a dangerous hole to start digging.  I need to be more mindful again. 

And maybe not even about our situation as a whole, but just daily---what am I thankful for today??  I'm thankful for this time while Molly's at school that I can have to myself, to my grief.  I'm thankful for the small gestures done by others, like cards and flowers dropped off for Mother's day last week by friends who care.  I'm thankful for other friends who listen when they're busy, entertain my thoughts, even if it seems I'm saying the same thing over and over, and overlook my bad moods or "off" days with understanding.  I'm thankful for the cooler temperatures--I'm not a fan of hot weather.  I'm thankful for Molly, for her childishly simple outlook on life that gets me through my hard days.  and the fact that I even have her!  I'm thankful for Josh.  For how hard he works at work and also at home.  When we first had Molly people would ask how it was going, "the baby is easy, it's HEIDI that's a lot of work right now!" he'd answer.  I'm sure it's probably what he thinks many times these days again.   I'm thankful that I have him to keep me focused and rational.

This experience showed me also how hard it can be to not get weighed down by other's sorrow.  Listening to these stories, how could you not feel sad for the suffering of the innocent children, and also their families?  I have to be careful not to give too much of the strength I have, my energy, to others.  Even with good intentions to help I have to make sure I leave enough for myself, and my own family, and develop good boundaries. Its true in a group setting like this one, or on a person-to-person basis with families still fighting that I may meet in our Wagon project.  Its a skill that I'll need to keep working on as I continue to work in this dark world, which I really feel called to do.  Remembering all that there is to be thankful for is a never fail way to lift yourself up.

Each family was given a gift at the end, a blown glass ball, that had a "tree" in the middle. 

The Tree of Enchantment the tag says.  "Like trees in a forest, no two are the same, and each is a symbol of growth, strength and the cycle of life."  None of our stories were the same on Wednesday, but we each represented the strength and resilience found in the human spirit.  We've weathered some pretty terrible storms, and have the scars to show for it.  But are still standing, still spreading our branches and leafing out once again in a new season.  Continuing on, the cycle of life, in a forest of other trees that have weathered similar storms.  And this tree, will continue to strive to be a very thankful tree.

Remembering DREW

Josh and I were asked to be a part of a parent panel for a "Death and Dying" symposium for Residents at Mayo this week.  The young doctors in Pediatric Medicine will be learning about end of life care, and they thought we would be a great resource to these doctors as part of the panel to explain how it feels on the other side of that situation as parents.  I was really honored, excited that they thought of us.  Looking forward, this is the kind of thing I'd love to do.  Being involved in this difficult world, sharing our story, our experiences and helping others.  Whether that's with families going through it, as kind of a peer resource for all the different aspects childhood cancer that are so challenging. Or in this case, helping the doctors too to learn from a willing parent what is helpful and what isn't, and how to approach some topics/sensitive issues with families.  So I'm so thankful for this opportunity, and for the hope it gives me for what my future may hold.

In preparation for the symposium, one of the coordinators asked me to give her a brief introduction to our family that she can use to introduce us to the group.  She specifically said to "go beyond just the medical record.  We can read that.  Tell us about him, what he liked, what he played with, what made him laugh, what he was scared of".  As I was working on this, I struck me that I really don't think about him a whole lot!  I think a ton about how I feel right now, what he taught me, what he seemed to embody...maybe his legacy as opposed to his actual life?  Sitting and recalling different aspects that made up Drew, I could feel it was different.  And just like when this certain two year old friend of Drew's is in the house and brings the memories to life again, remember him, brought him back to life.  It filled me with gladness, he really was a sweet, charming, playful boy!  It's that bitter-sweet feeling, that brings happy tears from the joy the memory brings, but also the sting knowing there will never be any new memories made with him in this lifetime.

So many of you only know him from what I've wrote, you never got the pleasure of actually being around him.  (Something for you all to look forward to in Heaven!)  So I wanted to bring him back into this blog too, after so much reflection on my own feelings. 

First off, he was so laid back.  All the nurses upon first meeting him in his bed at the hospital would note his knee up, leg crossed, arms above his head "just chillin" pose, and chuckle. What a sight! He always was this way, and since Molly is a *little* more high maintenance, whenever they were together, it really highlighted how relaxed Drew was. Its only recently I'm seeing how kind of bossy Molly is.  I never noticed because Drew always just did whatever she told him to! I used to joke Molly and his future wife would probably not like each other, since he'd probably find someone who bossed him around too.  He was just such a people pleaser.

They have a  "treatment room", where they do any uncomfortable, painful procedure so that his room, his bed, was always a safe space.  I wouldn't go along when they took him back there.  It was hard to watch, and I felt like it just made it worse for him.  Kids do better when their mom isn't there wincing and acting upset too.  And apparently he didn't need me anyway--he'd always come back smiling and the nurses would go on and on about how cooperative he was. 

He loved attention, and getting a reaction out of people.  After so many days in a row at the hospital together, his antics would lose their cuteness to me.  But when a new nurse came on at 3:00 or 7, it was like you could see him come to life again--a new audience!  He'd do his "hot blanket, please?"  "cold water, please?  Thank yoooou!" and they'd "awwwe!" all over him.  And he'd eat it up.  One morning I woke up and counted 5 blankets in his bed with him from a night of sweet talking the nurse into bringing him hot blankets every time she came in.  The music therapy lady, our child life lady, pre-op nurses, anesthesiologists, receptionists, even the Oncology team themselves had little inside jokes with him. 

His size and energy was always something staff were amazed at as well, and was probably something that we took for granted. He was diagnosed very weak and sick, but after several weeks with our friend his "tubie" in his nose giving him the nourishment he needed, he really thrived.  He was always tall (Molly is too, they get that from their dad), but he was also solid.  Accept after the very first hospital stay that he needed a few days with a cute little pint-sized walker to get going again, we never talked to a physical therapist much again.  I know some going through this treatment plan are still seeing physical therapy years out.  He topped out in the 97 percentile for height and weight.  I remember asking if that was for "normal" boys, or some kind of cancer patient scale?  No, that's all two year old boys.  He reached 38.5 lbs the last I remember, at just 2 years old!  The nutritionist was another specialist we didn't talk to much, accept to be told to keep up the good work.  There was a Radiation Oncology nurse who, meeting Drew after he just completed 6 chemo cycles, surgery, and back to back bone marrow transplants, was amazed at his strength and energy.  "he's the strongest Neuorblastoma kid I've ever seen in my 28 years." Wow.  What a gift.  That "tubie" and Drew's determination to not miss out on life let us DO so much more when we were home, instead of being weak and sick.   So many memories together, fun was had, as a family that I am thankful for every day.

He also was more sensitive, the most "snuggly" of our family (which is at the not-so-snuggly end of the spectrum).  But he'd sit with nurses, and staff without much of an introduction.  After a surgery one time, looking him over in the post-op recovery room, I notice what looks like glitter on his forehead.  What in the world?  Is there a party going on back there?  Then the nurse comes in, and I see all of her shimmery eyeshadow.  BUSTED!  You were canoodling with that nurse back there, weren't you Drew??  Geez... Another time, I came back once to his room when I thought he was napping to find him snuggling in just a diaper with a nurse while another one was changing his bed out (apparently he had gotten sick all over), and the nurse asked if he wanted to go to mom, "No, I stay with you." Patting her chest as he lay on her.  Which was fine with me.  Not that I wouldn't have snuggled him, but its like he knew who needed the love.  Who was would most benefit from his love at the moment.  I remember going to sleep beside him in the cot at the hospital and him saying, "How 'bout a kiss, mom?"  And then him leaning over, presenting his face to be kissed by me.   Most of the time though, he was satisfied just holding my hand.  When he felt awful, when he was going to sleep, and even on his final night on earth, as it got harder and harder to breath...

He'd hear children crying in down the hallway and would stop and listen, and note, "baby crying..." with a sad face.  He really had the biggest heart, and trusted people like he'd never been hurt.  I really think it was the love of Christ that he just allowed to flow through him.



Hopefully this gives you all a good feeling today reading about who Drew was too.  And that if it also brings sadness for what has been lost, like it does me, remember like I do that he's still this same Drew, just not here!  I wrote all this in past tense, and listen to myself say "he was this way" and want to correct myself, he still IS all these things.  As I explain to Molly, the part that made Drew Drew, that sparkle inside of him, is what still lives on in Heaven with Jesus.  His body is just not working anymore.  He still IS this laid back, attention loving, energetic, lovable little guy that he was here with us, he's just in a different place.  I would guess excited to have a new audience to try his antics on!  I can't wait to be around that bright light again that sparkle of life.  But until then, I am excited for this new place I've reached where I can really think about who he was, the memories I have with him, and there's a place in my heart that is happy again, remembering.  And even if it makes me cry at the same time, I will be thankful for the pieces of Drew I still have with me.   Thankful that I got to be this little boy's mom here on earth, even if it was for not even three years...

Here's the introduction I ended up with for the symposium.  When I got it together, I sat and read it and smiled through the tears streaming down my face... 

Drew Becker was a little boy that lived each day to the fullest.  He was full of life and love and energy.  He tolerated a lot, until he couldn’t.  On January 21^st, 2016, he was diagnosed with Stage 4 Neuroblastoma.  He began one of the most intense treatment plans for childhood cancer which included 6 cycles of chemo, surgery, the first tandem bone marrow transplants at Mayo for Neuroblastoma, and 13 treatments of radiation.  Being diagnosed before his 2^nd birthday, he really developed a lot in his last year, despite all of the treatments.  He went from a baby to a little boy.  Literally!  He got up to the 97^th percentile for height and weight!   He was solid.  One nurse said he was the strongest Neuroblastoma patient she’d seen in her 28 years in the field.  He began to really talk, and his personality emerged even more.  He loved boy things—big dump trucks, diggers, trains and John Deere tractors.  His smile could light up a room, and how well he handled procedures and scans was legendary.  He did everything that was asked of him, many times with a smile on his face.  After his cancer stopped responding to treatment, his family made the decision to let him live what all agreed were most likely his final days with his family, celebrating Christmas and going on a Make a Wish trip to Disney World.  He died 10 days after they returned, after only 5 days in the hospital, 3 months shy of his 3^rd birthday.

That pretty much sums it up!  If that isn't the shortest, sweetest, and saddest story ever told....

Row by Row

Drew's big surgery was on this day, a year ago.  Our families were there with us, and we waved to Drew as they wheeled him back, praying with so many that it would be successful and go well.  It was one time we really were faced with the seriousness of what we were up against.  Things could go wrong today, that could change everything, even take his life.  We tried to stay positive, but the what-ifs on those big days are so hard to ignore.  But by the grace of God and though the power of our army of pray-ers, we got the best news we could have gotten!  He didn't lose a kidney, or sustain any major bleeding from resecting the cancer away from a major artery.  The surgeon hugged me and said that he got all that he could, and what they couldn't, tested as dead.  I cried at the relief, and the joy that we had made it through another major hurdle.  So many celebrated and praised God with us that day. 

Today, as I think about that hopeful, positive celebration, it gives me a knot in my stomach.  An ache in my heart for that family, those doctors, everyone that was so high and so full of hope and determination for the future on this day, knowing how it turned out.  How my tears of joy turned into tears of heartbreak, and of deep disappointment. Its made me upset today, maybe even a little angry.  What good did it do us??  Who cares that they got it all, it all came back anyway.  Why did God tease us with such an encouraging report if it was going to all end the sorrow the way it did??  What fools we were to think it'd all be okay....

My head has been doing it's best to convince my heart of all we know is true through these strong emotions.  I know if our story didn't take such a startling turn, his life wouldn't have made such an impact.  It only took 11 weeks from when we heard "I'm sorry, but I've never seen a long term survivor from this position" to the nurses turning off his fluids because his kidneys were shutting down.   It certainly caught a lot of people's attention.  And how wonderful that we didn't know how it would turn out, or how could we have gone on?  

Thank goodness we did celebrate all the victories, that we chose to be joyful on that day, instead of worrying about the future, what good would that have done us?  We weren't fools, we were living like we weren't afraid of what cancer could do to us, we were not letting cancer take the celebration out of our victories, and trusting in the Lord.  We don't know what this surgery gained us in the long term, but we had another 8 months with him.  Josh reminds me that without it we probably wouldn't have had that long. 

Further, thinking about this day reminds me of another big truth.  That although our situation did change rapidly, God never changes.  "Jesus Christ the same yesterday, and today, and forever." (Hebrews 13:8).  We won't be disappointed, feel like we had the rug pulled out from under us when we reach Heaven and see God face to face. I am also reminded that God has never left us and he'll continue to be with us as go forward without our son.  "I will be with you always, until the end of the age" (Matthew 28:20).  I know all these things.  But today, I'm feeling the disappointment, all over again.

Here my baby was that night as we went to bed after his surgery.  It was a Facebook post I made thanking everyone for their prayers.  Declaring that we will keep marching on and fighting to get our Drew totally healed and cancer free.  Not a fool at all I guess, because that's exactly where we got him.  Totally healed and cancer free.  God does answer prayers.



My runs in preparation for the half marathon Memorial day are getting pretty long.  I had to go out on a county road to get the mileage in today.  As you can see, I had a lot of emotions and thoughts running through my head.  But I looked out and saw a tractor in the nearby field.  At first I thought, I hope that dirt cloud doesn't blow this way, it'll stick to all my sweat!  Luckily, it never did.  But as I watched that little tractor in that big field, I thought how small it looks!  How will it ever get through that big field?  I guessed the answer was row by row.  He just puts along, and takes it one row at a time. 

How will I get through all this?  As each day comes up and reminds me of all the ups and downs from last year, how will I have the strength to fight this battle between my head and heart each time?? I guess the answer is day by day, row by row.  God gives us the grace only to get through the day, "The Lord's lovingkindnesses indeed never cease, for His compassions never fail.  They are new every morning, Great is Your faithfulness." (Lamentations 3:22-23) .  He will provide the strength when I need it.

I continued to watch the tractor and think, it actually isn't that little tractor that is doing the farming anyway.  He's the tool, a big tool, but its the farmer who is driving the tractor that really is farming the field.  That ought to make the little tractor feel better.  He doesn't have to figure out how to plow that whole field by himself, he just has to respond to the farmer, go where he's steered, and it'll get done.  Trust the farmer's plan.  I guess I can trust God, just like that tractor, and not take on the whole field, try to figure out how I will deal with things all by myself.  I'm just a tool, and there is so much relief in that.  And to just remember to take things row by row, and pretty soon the whole field will be done, and I can rest.

I look forward to the day that a tractor in the field is just a pretty scene.  But right now everything has so much meaning to it.  Maybe that day will never come, when I can just not think so deeply about everything.  Maybe this is another gift.  It's as if I can see into this other realm, this deeper world where God speaks to you through nature and things, revealing to you truths that can't be explained any other way than through experience.  I guess it's another gift Drew gave me, because before I certainly wouldn't have thought twice about a dirty tractor in probably a bug-filled field.  And since many of you know Drew's love for tractors, I guess I can just savor the feeling that Drew had a part in talking to me today too, through that little tractor.  Comforting me, teaching me on this day when I need it so much.  Even if it wasn't a green tractor ;)

Drawing Near to Drew...

There wasn't much time to settle back in from vacation before got right back into it!   Tuesday Molly and I made a trip to Rochester to deliver more Warrior Wagons, this time to the downtown Clinic.  I had planned on going by myself when Molly was at school, but this time when she heard I was going, she asked to come too.  "I want to see all of Drew's friends!".  So I changed plans and we packed a lunch to have a picnic in a park on the way there.  As usual, it was so great to see not just Drew's friends over at Mayo, but our friends.

It lifts me up so much to go back, to be with people who really knew him.  On hard days I sometimes look at pictures of my smiling boy, and hold clothes that'll never be worn again, and wonder if he was even real.  Was he really even here?  He seems so far away, so long ago that I had him to hold.  But going back to hear stories and see the faces of the ones who spent so much time with us last year, confirms that yes!  He was absolutely real, and touched so many.  And we are doing something to make a difference while we wait to be reunited with him.  They gave us such a warm reception with the Wagons too, it really was wonderful. We even saw our flyers in patient exam rooms!

Yesterday we received a message from the first recipient. Complete with a photo of their brave Warrior in the wagon.  Not surprising, it brought tears to my eyes.  This is really happening.  Thank you to all who have donated, money or items, and supported us through encouragement and prayer.  You are making a difference too!

While in Rochester, Molly was a on a mission to do it all.  She wanted to see and go everywhere we frequented last year.  So after we went to Mayo 16 (the children's center at the Clinic) to deliver the Wagons, we walked over to the Radiation department, and then went on to St Mary's where we visited the general Peds and PICU floors.  And she still was upset we didn't get to the "hallway with the big ramp where we ride the cars down", or out in the courtyard to see the fountain.  I really had to deal with a fit from her when it really was time to head home. 

The bereavement and social work coordinators explained to me when I told them Molly's interest in going back and some of her behavior, that it's a very age appropriate way that she is grieving.  She wants to visit the places where she has memories with him, and see the people that were close to him.  She specifically wanted to play basketball with Randy--a wonderful Child Life specialist in the Radiation department that Drew played with each morning for the 13 treatments he received.  Now Molly seriously met him maybe 3 times, but she always heard Drew talking about going to play basketball with Randy during that stage of treatment. Here she is this week, next to Drew last fall.  God bless you Randy!

She also has been playing with his toys--this weekend she got out all of Drew's John Deere machinery and played with them. 





So I guess it's what she's doing right now to process and cope.  And it makes sense.  The same reason why I feel so good after leaving Rochester now too, because it makes me feel closer to Drew.  It's funny that kids just do what they need to, and not think about it as much as we do.  They just feel, and trust.  I should do a little more of that.

Even though it warms my heart to see her interact with Drew's friends, and be interested in Drew's things, it breaks it at the same time.   This is the only way she has to interact with him anymore.  All she can do to feel close to a brother she'll never hug, laugh with, take baths with, or even fight with, in this lifetime again.  It's so unfair to her.  She's already pouted in the van as we leave friend's houses with multiple siblings, "But I have no one to play with, no sisters or brothers or anyone!!!".  Oh baby girl, this wasn't my plan for you.  I'm so sorry it has to be this way.  I hate to see your heart hurting, just as much as I hated to see Drew hurting.  And just like with him, I wish there was something more I could do.  And once again, I can only do so much.  So, through my own tears, I tell her that we will make it work.  We can be sad, and we are, but we will be okay.  We have each other, and there are lots of families that only have one child.  We will just have to stick together, and have our own fun...I am just as much speaking to her as I am myself.

And the truth is, it's hard for me too.  I almost can't handle pictures of the two of them together right now.  My two babies, frozen in time together.  Never to be in the same picture again, always growing further apart in age, since one will never get past two.  I wish I could put them both in my lap and read them a story, have them both look at me in the morning across the breakfast table, even hear them both giggle as they read books in the morning together before their clocks turn green.  They were just starting to play nice together.  Just started to be able to work together to get things done.  I remind myself of my answer when she asked if Drew would miss us, that no, he doesn't miss us like we miss him, thank God, but we sure miss him.

And as I cry for her, for the experiences she won't have with her brother like we had planned, I have to remember that God will pick up the pieces.  He can care for her and her broken heart just as He's caring for mine.  I so want to fix it for her, but I can't.  I have to leave it to Him.  Once again, I have to let go of what I can't control, and let God take care of my baby.  Trust Him to work all things out for her good, and be willing to go with His plan, not mine.  What will He accomplish in her because of all this?  How much good can she do in the world built from the hard lessons she's learned so young?  Maybe Drew already knows, and is so excited to watch it play out.  The prospect is what keeps me going, what gives me hope in each new day, as we grieve the family that we were.

And I realize this is just the beginning for her.  Right now it may even be the easiest as she's enjoying all of our attention and time again, and doesn't fully comprehend all that has just happened in our lives.  But as she develops, she'll grasp more and more.  She'll progressively understand more, and grieve the loss of things she never had.  One doctor told me she'll probably go through a stage where she feels guilty that she doesn't remember him very well.  It hurts to think about that coming day.  Just the idea that she'll one day forget him, and then that she'll hurt as she feels bad about it.

But, I can't get ahead of myself.  For now, I can choose to be grateful that at the time being, she is doing pretty well.  She's leading me through this, whether she means to or not, by her emotional strength, her actions and her rational explanations.  Which gives me time to get myself together.  Heal some before I have to be there for her as she needs me more.  And we'll get through it.  With God and each other, our little family will get through this together.