Helping Others

A week ago I sat on my deck with a box of Kleenex for an hour and half while Molly was with a friend who came to my rescue.  I sat, and I cried, in front of the chattering squirrels and chirping birds.  I wrote that last post, and felt such a weight lifted.  I received so much encouragement and support from people here in this online world, but also out in the real world--texts, encouragement at the Y, and hugs at the Art Festival.  Feeling the love of God through others comforted me, and got my heart settled back down again. I began to see the light once more from the hole I was in.  Thank you to you all!

And then the Wagons lifted me the rest of the way out.  Currently, Warrior Wagons gives Wagons to staff in two places at Mayo Clinic--Downtown on the 16th floor of the Mayo building with the Oncology department, and also to the Mayo Eugenio Litta Children's Hospital at St Mary's.  Downtown staff mostly distributes theirs to new Warriors who will be doing more outpatient treatments initially, and Child Life at St Mary's gives them out to Warriors that will be doing more inpatient treatment.  They work together to make sure no one falls though the cracks.

Both locations were out of Wagons, so Molly and I got to work assembling, labeling, and filling two Wagons for each spot:

As I stood over these Wagons, filled with so many wonderful and useful things--all donated or bought with funds gifted to us, I couldn't help but tear up.  What a privilege.  What an honor, to be the middle man for so much love to families that truly need it.  It is sobering when you think of the statistics. Since one in five children diagnosed with cancer won't survive, it is very possible one of the Warriors that will ride in one of these wagons will not make it.  And almost certainly a couple of the Warriors in the 11 Wagons we've given out already, will join Drew in Heaven.  This is real.  Kids are dying everyday in this country and world from cancer.  Its not just us.  When I think of the ups and downs these families face, the crushing disappointment that some will feel, it begs me to pause, and say a prayer over each of these Wagons.  For the kids, for the parents, for the siblings.  And I did.

When a wave of grief is crashing in, and I'm down and overwhelmed by all that was endured at the hand of cancer like last week, it's hard to focus on anything else.  Last week reminded me how easy it is to be sucked in by despair, anger, and self pity.  You are tempted to think there's no use in this world.  You can do all the right things, be the best person you can be, and look what life can hand you in return.  Look at how life treats the innocent, the children.  Kids like Drew. And their just as innocent siblings, like Molly.  Why even bother?  What's the point. 

But these Wagons, like they've done from the start, helped bring me out of that hole this week.  We know the difference they can make in the lives of the people who receive them, but they also make such a difference in us.  They convince my beaten and bruised heart once again why cancer didn't win.  Because there IS still something we can do.  There is still a point to doing the right things and being the best people we can be, because this life isn't the end.  It will all be made fair, we will see the ugly monsters of this world, like cancer, be defeated forever someday. 

 "The battle with cancer is won in how you live and love",  a truth proclaimed by another Mother of a cancer Warrior as they face the harsh reality that they may have to say "see you later" to their beautiful little girl soon.  She said beautifully what I've been getting at since the day Drew was born into eternity.  How you live and love is how you defeat cancer.  Drew certainly lived with joy and loved without restraint.  He won his battle, and no one will convince me otherwise.  Now it's our turn to fight. And it's a battle in our hearts and minds, which translate into our actions.  Are we going to live, do the right thing, be the best people we can be?  Will we love as much as we can, as many ways as we can?  Through these Wagons, we are starting off on the right foot. 

I've talked about the empowerment I'm beginning to feel.   If God got us through this, arguably one of the toughest things you can face, and we are still standing, what can't we get through??  We may have lost our Drew for now, but we are doing more than standing.  We are pulling Wagons full of care and love to the people currently on the front lines. 

As always, I left Rochester feeling so good.  Not only because of what we are doing, but by being back there.  It's a place where memories of Drew come back to life again.  Where we see the many, many people that cared for and really became Drew's friends.  People who knew him and share stories with us.  Where Molly can play in the same playrooms he played, even with the actual toys that were his favorites.

It felt so good to hear his name, Drew.  To listen to what little things remind nurses of him, and our many stays last year.  Just to be where were spent so much of our last year with him, really refuels me, and I suspect Molly as well.

Now that I'm in a better place, I'm analyzing last week's progression of emotions. As I think about how much the Wagons uplifted me, it dawns on me.  Why did these Wagons help me feel so much better? Not just the statement they make, or the empowerment we feel through them, but because we are helping others.  I am shown once again how much this practice can do for your outlook on life.  Another choice you can consciously make to turn your attitude around, like being thankful.  When you help others, you help yourself.  Because it reminds you that you're not the only one with problems.  Others face hardships too.  And it also reveals that you still have something in you that can be blessing to others, when you feel so empty.  Why bother in life?  Because you can make a difference to someone else, I still have something to give.

Thinking back over my week, not only in the Wagons did we actively help others--but in daily things, in little ways.  Watching a friend's children when they had a lot of packing to do for a big move, making a treat and sharing it with our neighbors, and signing up to bring a new mom a meal.  All small acts that made me feel a little better, helped me climb out of that hole one step at a time.  I'm sharing not to toot my own horn, but to share the lessons God is teaching me, ways I am learning to get through something as devastating as losing your child.  Like looking for things to be thankful for, looking for ways to help others is a daily disciple that leads to joy.  And if you do it often enough, it'll just become second nature, and contribute to a general and genuine feeling of joy that money can't buy, and circumstances can't dictate.

The battle with cancer is won by how we live and how we love.  Helping others is a way to do both.

If you haven't found our Warrior Wagons, INC Facebook page, here is the link.  You can "like" and follow our page to see updates on what we're doing!

https://www.facebook.com/WarriorWagonsINC/

Beauty From The Ashes

This week, I've been back in a familiar place where my heart breaks for one of my children, and this time, it's Molly.  She's been talking a lot about Drew, and doing some new behaviors to remember him that have really been hard to listen to/see.  She'll pretend he's with us in the van--in his old seat.  She buckles "him", gives him his favorite toys to play with on the way to the store.  In the grocery store she'll say he's sitting in the basket and hand him stuff to hold while we shop.  And then in the mornings this week I've found his blanket and stuffies, even his binkie, all laid out on the big chair in there.  She says she "tucked him in". 

I talked to the Child Psychologist and Bereavement Coordinator about what she has been doing.  And they assured me it's all very age appropriate.  Since her eating/sleeping/bathroom-ing habits remain constant, then it isn't concerning.  Many kids her age have imaginary friends and it makes sense in her world for her imaginary friend to be her little brother.  They also suggested with school starting soon for her she may be nervous and is thinking back to times when she felt more secure and safe as a way to cope with her anxiety about starting something new.  All of that makes sense I guess.

They also said it could just be her way of keeping his memory alive, of trying to continue to include him in our everyday. Which makes the most sense to me.  If I'm honest, I probably do it too. As I cut up fruit and veggies on the counter, in my mind's eye, I picture him there like he did before he was sick--stealing the strawberries before I can get them into the bowl.  Or helping me bake by dumping ingredients into the mixer when he was a little older...

Or as we walk down the sidewalk, I can hear the wheels of his shopping cart as he pushes it along...

And as Molly colors on the floor now, I can just see him beside her...

Kids just DO instead of think.  I can totally see that she just is expressing what both of our hearts wish--for Drew to be in his seat again in the van, in my basket at the grocery store, sleeping in his room at night.

So once I got over being startled by her behavior, I got really sad.  It gave me a glimpse of her little heart, that she doesn't show a lot.  It reveals to me how much she really misses him, and wishes he was still in our daily life.  And it broke me, all over again, for a couple days.  For another baby of mine that is hurting, and once again, I can't do anything to make it better.

Thinking about how much this little girl has endured, how much she's had to deal with in the last 18 months.  How sad is it that she so casually pretends that her dead brother is sitting beside her in the van.  And then go and laugh like any other kid an hour later on the swings at the park?

How can we have gotten here?  It's so unfair to her.  I never wished this for her, for her to have to be such a trooper.  Yet, she's dealt so beautifully.  So strong.  Definitely worthy of so much praise, that I hope I do often enough. As proud as I am of my Drew, I'm just as proud of my Molly.  She's my rock, and I really don't know what I'd do without her.

This week showed me how much I take for granted in my Molly.  How much of a gift it has been to get 7 months in, and have been able to mainly focus on my own grief and healing since Molly's been so stable and strong.  It's also showing me it may be her turn now, and how much of a lifetime this story of grief will be.  And how difficult it'll be to feel for her little heart throughout it.  Another layer of this great loss.

This week I've also been working on my feelings surrounding her starting Kindergarten soon. That post remains unfinished as I kept having to stop as I thinking about the day I'll say goodbye to her, even just for the day of school.  Because its more than just goodbye until 2pm each day.  But goodbye to a time of my life I'll never get back.  I've been grieving for what was, and will never be again in so many ways this week.  How much of her childhood, her innocence was lost in the last 18 months.  It is the way it is and we'll work to make the best of it, by strength only God can provide, but I spent this week crying because we have to, because SHE has to. 

Once I get past the sorrow of our situation, I can see the beauty in it.  That if she is using his memory to comfort herself and her anxiety about school, how sweet that really is.  Drew once again can bring us peace in troubling times, and is still a very real part of our lives.  I can be also glad to see her love for him live on even as they are separated by the great divide of this physical world.  To see them "together" in a way again, albeit a pretty strange way, is kind of comforting.  Like God tells us He'll do in Isaiah 61:3 "and provide for those who grieve in Zion—to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor."  I can see that from our hurt, will come something great.

Once I get past the sorrow....

Beep Beep!

Anyone who's spent an extended period with a really sick person in the hospital knows how much machines beeping becomes a part of your subconscious.  I'd swear I'd hear beeping of an IV pole even after I was home because it was so constant there.  Every one of the things you see below on the pole can run out, complete it's infusion, or just get kinked up and beep.  And some nights it felt like it was one or the other every 5 minutes.

And with Drew's feeding tube, we still had beeping at home.  When the bag would be out of formula, or it'd get out of place in his backpack if he was being fed during the day--especially at the park, it would beep.  I remember hollering to him many times--"Drew!  Are you beeping??" If I thought I heard the alarm.  And he'd holler back, "Nope!" Always. Even if it was, just because he didn't want to stop playing.

Or when the tube got kinked up at night if he rolled around too much or laid on it--I was always attuned to that beeping and would react instantly to it--by waking from deep sleep myself and hurrying to his room to fix it at night, so it wouldn't wake him up.  Even after the transplants, when I knew he couldn't even hear it anymore since his high frequenting hearing was wiped out, I'd rush in to him.

One afternoon recently Molly had her usual quiet time in the afternoon. We use our "Okay to Wake" clocks to regulate quiet time, and apparently I'd set it to sound an alarm instead of just glowing green.  She must have only snoozed it when she came out, because as she sat on the couch and I was in the kitchen I heard the beeping--and instantly my body responded.  I could feel my heart race and inside I just felt panicked.  It brought me back, so quickly and clearly to those feeding pump days and IV poles and...Drew. I went back and silenced the alarm.  But I stood in Drew's doorway for a while, closing my eyes, and picturing his crib, him sleeping in it, and his pole we had at home for the feeding pump right beside his crib, and cried...

Oh, if only I could really go back to that time, to those days.  I wish I could silence his pump, fix the kink, and stand there and watch him sleep again.  He'd be clutching his blanket tags, and sucking on his binkie, looking so peaceful and perfect. It's in moments like those, as I stand there in the doorway in tears, that my mind joins my heart and still can't believe this all really happened to us.  That I'm really longing to be dealing with a feeding tub pump because my child had CANCER, and then that he's gone.  He really died, and I'll never see him again until I join him in Heaven. How does this happen?   Why does life have to be so hard, why does it have to hurt so much?

This is happening, and then Molly calls for me.  Finds me crying in his doorway and pulls me back into reality.  "Come on, man!" she says and off we go.  To the Y, or to Walmart, or the park.  Places where very few can understand what it takes to keep functioning, to fight so hard just to get through the day.  And I'm glad they don't.  Glad I have them to distract me, to remind me that the whole world isn't bad.  That life does still go on.  And to give me hope that someday it won't be as hard as it is now.  I won't have to "gear up" to go out and can go a day without crying.   Because I do have moments, mornings or afternoons like that already. I am making progress.


Summer is almost over.  I just uploaded a ton of pictures to my Summer '17 Facebook album and I can't believe all we've done.  How "normal" we appear.  We went to the pool--a lot more this year than ever. 

Watched our garden grow...

Rode the Gator to the park...

We've visited family.  We went to the fair...
 

We went on a family vacation to Colorado...

  And we truly have enjoyed these things.  I'm so happy we've been able to get up each day and continue to live life, for Molly, and for ourselves.  To chose joy as much as we can.  But all these fun events, exciting afternoons, and happy days weren't without that ache in my chest, and the occasional tear down my cheek (thank goodness for sunglasses!).  But, like I've said, I've learned to expect and accept that life will always feel different.  Emotions so complex, feelings hard to describe.  And I'm deciding it's okay.  It's the impact Drew's had on me, it's his memory still with me, and I never want to lose that. But I can see the light, see that someday, we will feel just as "normal" as we look from the outside.

But these reality checks, these panic attacks brought on from a simple alarm clock, I'm more and more convinced is some degree of PTSD, stings like a slap in the face.  It reminds me that I may "forget" for a moment, and feel almost normal, but the grief is there.  Just waiting for a trigger to unlock it again.  The child psychologist I've talked to says these attacks will get less and less.  The more these feelings are dealt with they will lesson each time they are triggered.  I hope so... 

I'm glad for the Summer we've had.  It's been probably a needed distraction and relief from the work that grieving is.  I never would have thought of all the different ways this process exhausts you.  It's not just as simple as "missing" them, although some days it can be just that simple.  And I was really not taking any breaks for a while there.  So while I've not been writing as much, not been crying, I did get a break.  But much like a vacation, it's not like your work just goes away.  Just like in the office, it builds up.  And I can fell it building.  Something will happen, I'll experience a different feeling, or be reminded of the past but have no time to process it, to stew on it, because it's on with the next place we have to be!  And they'll catch up to me.  Or stop me dead in my tracks like that beeping.  And I'll continue to write, because it helps me so much.  To organize my thoughts and figure things out as much as anyone can this side of Heaven.  And if it helps someone out there in the process, it's worth the risk of sharing so much of me. 

His Mysterious Ways

At the end of last week, Molly and I went up to stay with Josh in the Twin Cities while he was covering a vacation for someone at a different plant.  We went to the Mall of America and used what would have been Drew's wrist band.  We'd purchased four last fall but didn't end up needing them all when we finally went to the mall amusement park to mark Drew's birthday this April together.  Watching the joy she had on each ride, trying new ones, but doing ones we did last time that "Drew would have liked" made the day more emotional than I thought.  Oh, if he could only be here with us too.  He would have liked them, Molly's right.  I wish we would have gotten here all together, as we originally intended.  I stood watching her with that all too familiar by now ache in my heart.  So happy for the joy in Molly, but constantly remembering who's not there smiling and squealing beside her. 

While I was standing and watching her on a ride with all this going on in my heart, a lady turned around and asked me, "I think I know you...did you have twins in Mary Brigh last April at St Mary's?"  Well, not twins, but I definitely was in the Mary Brigh building a lot last year!  Yes, as we began talking she did remember me.  We had talked in the play room with the fish tank, among other things, about how tough it was to keep an IV pole up with little boys!  She had been there for "just" a week with her boy that had an infection on his lymph node, and remembers that I talked about being there for weeks at a time, and how she still couldn't imagine.  I was pretty impressed that after over a year she remembered me after such a brief encounter. 

She then asked the inevitable question, "How is he doing?"  I hesitated but ended up saying we lost him in January. It's so hard to tell someone new who doesn't know.  I don't want them to feel bad for asking, but I know they probably do.  I went on to explain how the rest of the year had played out after we had met, but I could see she probably didn't hear a word of what I was saying.  People get so flustered and shaken upon hearing the tragic conclusion to our story.  Her eyes watered and she looked around nervously.  She told me how sorry she was.  I just hate to cause such distress in others.  To share this pain, and the unfairness of life, displayed in the ending to our story.  But I told her we are okay. We started Warrior Wagons, and that has helped give us purpose.  It's hard, but we still have to keep going, doing stuff like this with Molly.  She agreed, "she's got to have a life".  Yes, she does. 

I walked away with goosebumps, amazed that this encounter even happened, just when I needed it. As I was in the middle the confusing mix of feeling sorry for myself and also guilty for having fun, God arranged for me to cross paths with this lady.  The timing seems just too perfect to have been a coincidence.  We weren't even going to be up to the Cities until the next day, and for our kids to be on the same ride together, and for her to remember me and have enough courage to approach me is just incredible.  The exchanged served, once again, to remind me that we did make an impact, there was purpose to our suffering last year, and that people do care.

I talk a lot about how much Drew did for others--and he did.  But maybe I don't realize what an impact we all had on others as well.  Our family, and myself. 

All those weeks we walked the halls...

 ...and played in the playrooms next to other parents who were there with their children...

...and looked out the windows at the world when we felt like it was going on without us as countless nurses and staff were in and out of our rooms...

...and when we met people from all across the world who come to Mayo Clinic, we were participating in God's bigger plan.  For whatever reason, that day last April when I chatted with this mom, it must have meant something to her or she wouldn't have remembered me.  Whatever we were doing there (probably chemo cycles), wasn't meant to save my Drew's life.  No, God wasn't planning to save his life, but to bring him Home all along.  Instead, each day we were there was for a different purpose. And that particular day in April, 2016, was to not only give this mom some perspective as she shared we had, but also to be brought up to me 16 months later at Nickelodeon Universe at the Mall of America, where I would be standing, heart aching for my son and would need a reminder to help me keep going. What we were doing there last year did matter.  It wasn't all a waste.  God can use everything for good, and works all things together (Roman's 8:28).

I don't know if this lady thought of our encounter again that day, but I did.  As I went on to watch and ride more rides with Molly something changed about my perspective.  The next day we visited Minnehaha Falls, for the 3rd year in a row.

And I actually got in!

I still longed to have both my kids with me, to see them enjoy the rides and splash in the water together, but I was encouraged by remembering that God is always working. That you never know who's going to stop you when you least expect it and remind you that people remember you, and that you matter.  Even if things don't work out the way you planned, keep going.  It'll all make sense someday.  And in the meantime, if I keep getting little glimpses of connections, little hints at the bigger purpose, it helps me keep going, keep fighting through each heartbreaking morning I wake up without my boy.