Tongue-Tied

I took Molly into the dentist earlier this week.  Just a routine cleaning, didn't think much of it beyond something we had to do that day.  Molly was excited, and did great!  Chatted with the hygienist, followed instructions, easy-peasy. 

Then when the dentist came in, he confirmed she has her first cavity.  Bummer, but not too much of a shock (we've been eating probably too much junk lately and not being diligent about brushing before bed).  Then he also says that she's tongue-tied, and very much so in fact.  Really?  I wonder how we haven't caught this before.  She had no issues nursing, and it doesn't seem to effect her in any other way.  But she really can't lift her tongue even high enough to touch her top teeth with her mouth opened.  He suggested we get it "released" through a procedure with the Oral Surgeon. 

As they explained what they do, and how they do it, I started to feel more and more upset.  Panicky almost.  Nitrous Oxide, or laughing gas would probably be used, but may use more anesthesia if needed in addition to local anesthetic.  The procedure would take not too long, the bleeding would stop fairly quickly, recovery is minor....As we went to the receptionist to get the appointments scheduled I really was almost in tears.  Wow, calm down Heidi, I thought.  This is seriously not a big deal.  We got the appointments made and we went on with our day. 

But I remained upset about it the rest of the afternoon.  The words anesthesia, bleeding, recovery generated such a strong reaction in me that took me off guard, and I couldn't talk myself out of it.   And it seems so silly.  This is small potatoes compared to what we've been through.  But it dawned on me, maybe that's just it.  It's not after what we've been through it's not a big deal, but because of what we've been through, it is a big deal.  Almost like all our past trauma has made me so much more sensitive, skittish about any sort of procedure, however minor.  Like PTSD or something, although that sounds dramatic.

The thought of taking her in, keeping her calm and relaxed, waiting for it to be done, seeing her after really brought out so much emotion.  I started getting flashbacks of so many times we sent Drew back to the OR to get his line removed or replaced, biopsies or his big surgery.  We didn't freak out then.  We held it together.  For him, and for us.  We had to stay focused, we had a long road ahead of us.  He needed to be calm and not afraid, for all the he had to face.  And so did we.  Through the strength of God, we sat with him in pre-op, waved as he went back alone and fully awake, and waited for him to return groggy and out-of-it without ever shedding a tear.

But now it's almost like I know the stakes aren't high.  That its okay to freak out a little, and I kind of want to.  To let out over a year's worth of emotion I've held in.  For every time we were afraid, upset, and anxious but didn't show it.  Because the truth is, it was scary.  It did bother me so deeply to let him go back there alone to have his body cut into. Every. Time.  I wished it was me, and not my sweet, happy little boy.  It seemed so unfair to take this happy child that was so oblivious to what was going on and do something to him that hurt. That would take hours and days to recover from.

 I'd see the reactions, the emotions I felt inside, on friend's and family's faces who sometimes accompanied us to different surgeries and procedures throughout the year, but I buried it.  Put on a brave face because I had to.  Someone commented last year, "I guess you can either feel or function sometimes, but not both.  And unfortunately right now, you guys have to function."  And we did function, well.  But now its time for us to do the feeling part.

This stupid tongue-tie release procedure is just the first time these feelings have resurfaced, and have an opportunity to be felt.  I've tried to hold back my reaction in front of Molly--she's actually excited for the procedure because she thinks she'll be able to whistle after it!  Bless her heart.  Even explaining what they'll do doesn't seem to bother her, "When will they snip my tongue so I can whistle?  Tomorrow??"  So I guess that's good.  I mean, of course it is.  I am so thankful she's not upset too.  Once again, God is taking care of me in my struggle by relieving me from having to settle her down too.  But she did say she doesn't want them to put her to sleep.   How sad is it at five years old she knew right away about being put to sleep when we said "surgery"...

Does it seem like every week there's something?  Because it does to me.  A memory from last year, a event that has me aching to watch my little boy enjoy, a milestone Molly is reaching that Drew never will, and then unexpected things like this tongue-tied procedure which trigger intense reactions.  It's exhausting.  I'm seeing why so many grief books call your journey "grief work"--it is a lot of work.  A lot of mental, emotional, and even physical energy.  I wonder how long it'll be like this.  How many "rows" I have before the field is plowed.  Or will it ever be?  It has to get less intense.  I can't do this forever.  I'm telling myself I'm getting through the bulk of it now.  And someday it'll be easier.  I'll have bad days, I'll have rough times again, but it won't be so back to back.  I cling to that hope right now as I am getting so exhausted.  So tired of having to fight so hard each day to end up on the right side of the Truth in the end.  But by the Grace of God, so far, I've been able to.  Keep praying with me I can continue to end up there.  And feel His peace.

Through the Eyes of a Child

The last few days there have been huge clouds floating slowly by overhead.  Such big, billowing clouds moving fast enough you could see they were moving, but slow enough to watch in awe. I have watched them thinking they are so impressive.  Drew would have thought these were so cool, I thought as they floated by.  I can just picture his face.  The look of awe and wonder, like the expression captured in his final weeks by our wonderful photographer, Lynne.

It would have been similar to his expressions meeting Santa:

 Or being face to face with Elsa, behind the controls of a rocket ship, or seeing his favorite TV stars in person while in Florida:

Kids lose that sense of awe.  As they grow up, they aren't as easily impressed.  I think Molly never has been!  So I know I'd have lost that sense of wonder through a little child's eyes at some point.  But normally, you lose it gradually.  I lost it all at once, along with so much more.  I miss seeing the world through his eyes.  I miss that squeal when we passed big trucks or interesting loads on the high way.  The questions about the huge holes being dug by big equipment in construction zones on the street.  The fascination of that good 'ole garbage truck with it's magical arm that picks up the can, dumps it, and sets it back down. Even when Mom acted crazy--dancing around or making funny sounds.  Now I'm met with eye rolls and "what's wrong with you?", but to a two year old Drew, I was hilarious!  Or the fear and amusement at the sight of new animals at the fair or a zoo.   Experiencing the world through the perspective of a small child is one of the joys of parenthood, and I feel short changed.

I am confident though, that that expression is on his face everyday in Heaven.  I saw the look of wonderment and pure joy the last day we had him on Earth.  I think about that day often.  I've shared about it before, how he looked around the room, marveling at things we couldn't see. For a while I thought it was such a gift to him, to get a glimpse of where he was headed, so he wasn't afraid.  I am seeing more and more how much of a gift it was to us too.  So we could get a glimpse of his reactions, of his joy in where he was going.  So I could know that he would be okay, even if some days I would not be.  He looks at the Heavenly world all around him with that look of amazement I am sure.  And upon the very face of Jesus, with those awestruck eyes.  Most certainly way more exciting than huge clouds, garbage trucks, and pieces of giant wind turbines in flatbeds on the interstate...

For his sake, I'm glad I don't have the choice to have him back, just to experience life through his eyes again.  Because some days like this one, I'd be selfish enough to choose to.  I could have done more treatment, I could have handled the stress of the fight I tell myself, if I could just see that look on his face one more time.  But who would really be paying the price of that wish?  The bulk of the burden of suffering would surely be on Drew.  I wouldn't want to put that back on him, pull him away from Paradise and all the cool things there are for him to see, would I?  And Molly, I couldn't ask her to be in such a place of uncertainty again, always without one of us and the stressful atmosphere we tried to minimize but definitely didn't eliminate.  No, it would purely be for me if I were to be granted him back, and I couldn't do that.

We knew in December seeking more treatment in our situation would have been selfish.  We understood our situation, and that asking him to do anything more would have been for us, not for him.  It's another area where looking back we can wonder what a different decision would have given us, hoping it would have given us more time with him.   But given our circumstances, I don't think anything we could have done would have kept Drew here.  His time was up.  And thank goodness we listened to the Spirit, and not ourselves, and let him go.  Let him be free.  Free to go and explore a whole new world.  I'm sure he's glad we did.  And I am too, most days.  I can't let voices not from God tempt me to question or regret those decisions.  And I won't.

We have a busy next few weeks, full of more firsts.  We'll be headed down to Iowa for Corn Carnival--my parent's hometown's yearly celebration.  Then we'll enjoy the fourth of July here in Austin with all the festivities our town hosts.  There will be a big family reunion on my Mom's side later in July, and a road trip to Colorado in August.  So much I know I'll wish him there for.  So much that will remind me of him, so many things that I'll see and picture his wonder and amazement at.  It will hurt us deeply to not have our Drew with us physically for all these events.  But I pray I'll remember the excitement and joy that he's experiencing instead, which makes all these things pale in comparison.  A friend pointed out that all these things I wish he was a part of or got to experience, he'd choose Heaven any day if given the choice. And I guess so would we, for him. 

So enjoy your summer, Deary, we will try to enjoy ours, and when we see things you'd gaze at with wonder, we'll know you are enjoying so much more where you are now!

Love Never Fails

The last few days I've continued to think about the past.  The choices we made, and how things turned out.  I really don't think it's about regret.  There's nothing we regret.  At the time, with the information we had, we did do what we thought was best.  It really didn't even seem like it would have made sense to not do the double transplant.  And even now, it has become protocol.  Everyone in Drew's situation following the standard of treatment will undergo that treatment.  So its not so much I'm questioning the decision we made, but how God didn't seem to keep up His end of the bargain. 

But when I think about it, there really was no bargain.  I was never promised it would work out if we did all that He asked.  The Bible teaches clearly the opposite actually--you will face trials and suffering if you choose to follow the Lord.  What it does promise though, is that He will never leave you, or forsake you.  And that everything will work out for our good eventually.  And those promises, He has certainly not broken. This story just simply isn't over yet.  If it was, we could question some of those things--but we haven't seen the end yet.  We find ourselves just in the middle of a larger plot, which we are promised will have a happy ending.  We just have to be patient and trust.





I begin most days in Drew's room.  In an oversized chair, reading, writing, praying, thinking.  Sitting, with all that I have left of my boy, almost exactly where he would have been sleeping.  I'm so thankful to have this special place right across the hall.  Instead of going to a cemetery, I can be still next to the last of Drew here on earth in my pajamas, with a coffee in my hand.  I'm so glad we decided to do it this way. 

So as I continue to pour over things this week, one morning my devotional lead me to 1 Corinthians 13--the chapter on love. "[Love] bears all things, believes all things, hopes all things, endures all things.  Love never fails."  (1 Corinthians 13:7-8)  I used to roll my eyes when I'd hear someone say that God "spoke" to  them.  Like, on the phone?  But now, I hear it.  At least for me, it's an understanding, an overwhelming feeling you get when something just perfectly answers thoughts in your head you may never have said out loud.  Or addresses something that's so deep in your heart, maybe it hasn't even made it to your conscious thoughts yet. This was one of those moments.  I got goosebumps as I read this, and knew it was meant for me right now.  Helping me combat my struggles with doubt this week.




We loved  Drew.  And if I'm even at all tempted to think we failed him, this reminded me today that because we love him, we never failed.  Because love never fails.  The tandem transplant may have failed him, his body may have failed him, this world failed him.  But our love did not.  Our love bore a lot with him.  Watching him suffer was such a heavy burden, but we bore it.   It believed with him through it all, and in him, what he could accomplish in this world.   And it certainly hoped.  Oh did we hope!  For a cure, but even after that didn't seem attainable this side of heaven, our love hoped in the bigger picture.  And it continues to now.  Through our love, we continue to bear and endure so much pain, heartbreak and disappointment.  But we also, through our love for him and for God, still believe, and have hope that it will all make sense some day.  We will see him again.  Because love never fails. 




1 John 4:8 tells us that God IS love.  So we could place "God" in those versus in 1 Corinthians.  God bears all with us.  He believes in each of us.  He has hope that every one of us will choose Him and be saved.  He endures all for us.  HE never fails.  Never.  Even if it feels right now to me that something failed, God and our love for Drew never have, and never will.

And isn't that all God really asks of us?  To love?  In Matthew, when Jesus was asked what the greatest commandment was--to LOVE God with all your heart, and the second to LOVE one another was his response.  We are not asked to heal each other.  To fix things so none of us ever feel any pain.  But we are not just asked, but commanded, to love.  To bear with each other, believe in each other, hope for each other, and endure with each other.   I guess we didn't fail at all, because we did all those things. And love never fails.

We followed God's guidance last year, even when it was hard.  We didn't fix Drew, and neither did the treatments, but we certainly gave and received an overwhelming amount of love in the last 18 months.  I guess we are doing just what we are supposed to be.  And we won't fail if we continue to love, because love never fails. 

"Didn't I?"

I'm starting another row again, and it's a rocky one.  I knew what was coming up to think about, to process from last year.  It was about now a year ago we were presented with research and statistics showing how much promise completing tandem transplants, two transplants back to back instead of just one, would provide towards curing Drew.  It was suppose to give him up to a 20% better chance of being alive in 5 years.  And everything seemed to line up so perfectly.  The timing of the research coming out, how strong Drew's body was despite what he'd already withstood, and we had the stem cells!  More than enough. Drew's collection was amazing and had given us more than enough to do both transplants.  And insurance got on board.  It seemed obvious this was the hand of God, working things out for Drew.  I remember feeling so confident, so hopeful.

The only thing was, they froze the 18 million stem cells in only two bags.  If we did it, we'd use them all since they couldn't separate the bags and refreeze any.  Which would limit our options should the cancer return.  So by doing it, we were banking on not ever seeing the cancer again. Because we all knew if we did, we would be in serious trouble.  These transplants are also very risky.  Life threatening complications were a very real thing to consider, and we'd be chancing it twice.  Would he even survive the treatments?  We put our faith in the statistics, the science, as well as in God that this was His plan.  And signed the papers.  Praying that we were doing the right thing.

Once again, I am feeling a little angry, confused, disappointed, and tempted to doubt.  Did we do the right thing?  So much for that extra 20% chance of cure, we didn't even get to finish frontline treatment.  Did we just put him through the pain and suffering of those transplants for nothing?  Why did God set us up so clearly to do the two transplants instead of the one, knowing we'd be out of options just weeks after they were complete when the cancer returned?  How could He have lead us on like that?  This part of our story was suppose to be the miracle, the hand of God in our story that saved Drew's life.  Instead, one could argue it was his doom. 

I kept a personal journal though all of last year. As we were praying over this decision a year ago, to do the double transplant or not, I wrote a prayer:

"Please God, let us make it through this treatment.  Have mercy on Drew, oh God, and let him live a full life on earth and serve Your Kingdom.  Let him experience the joys this world does offer--he's certainly experienced some of the suffering"

When I first read that last week, I had to put down the journal.  Thanks for answering that prayer God, I thought, as tears fell down my cheeks.   But I could feel Him asking, "Didn't I?  Look again.."  and I picked it up again.  We did survive the treatment, even through an infection while he was at his most vulnerable.  He did have mercy on Drew in so many ways.  So many things went right for Drew, even if some things also went wrong.  His life was full on Earth.  He got to do everything a little boy could ask for, even driving a real combine and going to Disney World. And boy, did he serve God's Kingdom.  I'd say there almost isn't a week that goes by that someone doesn't tell me how much Drew taught them, inspired them, and showed them about God or life.  And God generously gave Drew joy, and also us.  That was evident everyday.  He certainly answered that part too.

Once again, with the help of the Spirit, if I can sort through the lies, the initial emotional reactions, I  see that He did answer every part of that prayer.  And for whatever reason, He did lead us down that double transplant path.  He asked us to trust him then, and to continue to today. 

And there was other things gained during that time, even if it wasn't a cure.  Drew was the first to do the tandem transplants for Neuroblastoma at Mayo.  The medical staff learned a lot last summer.  They learned logistics of the drugs, the care, the time table.  We got to meet a whole new team of nurses, housekeepers, and PCAs in the transplant unit of the PICU.  Individuals who we learned a lot from, and who've told us how much they've learned from us, about not just medical things, but life.  We met families, brave children, fighting their own battles in that small, four roomed unit that I will never forget.  And our family learned to lean on each other, to appreciate one another.  The Beckers grew so much last summer, over those two transplants.  Yes, it cost Drew the most, but there was a lot gained, for him too, outside of his oncology file.

And I'm sure Drew has learned even more reasons why he was asked to endure those transplants without the outcome we were hoping for.  What the point was if it wasn't to save his physical life.  I truly believe he has seen it all, all the "whys" from last year, and maybe even those to come, and is completely at peace about it.  He now has an eternal perspective, and it's all okay.  I hold on to the hope that I'll be there someday too. 

And maybe using up those stem cells WAS part of the point.  To spare Drew the suffering further treatment would have meant for him, another way He had mercy on him.  A friend suggested that to me as we felt lost without options in December.  I may not have been in a place to fully appreciate that idea then.  Now, I can see the blessing for what it is.  You only need those stem cells in the first place because the body is so beaten down from chemo, it can't recover on it's own.  Doctors refer to the transplant sometimes as a "rescue".  Without them, harsh chemo was out of the question.  Maybe we should be thankful that we didn't even have the choice to put him through more.  Especially if we believe the outcome would have eventually been the same.  God closed those doors for us, and released us from the burden of having to make that decision.

God did answer our prayers.  He never abandoned us.  He will work things out for our good, just like He promises.  He did lead us down the double transplant path on purpose, and for many reasons.  Some we already can see, some that will be revealed to us when we join Drew and come into Glory.  So even though we don't quite understand fully, we will continue to trust.

Let Nothing Dim Your Shine

Through the Grace and Spirit of God, I feel my speech went well last night.  I was fairly calm, and felt confident that Drew and God had this, and they'd help me bring their story into St Augustine's sanctuary.  Even though I know the few mistakes I made, and would have liked to not have my voice waiver with emotion at times, I'm happy with how it went.  I was glad to do it, so thankful for the opportunity.

The school is a smaller one, the graduating class included 14 students.  It felt so intimate.   The students and staff obviously were very close, and it was heart warming to see.  The group was filled with love, and it was wonderful to be a part of the night.  I graduated with over 350 students, so it was very different then my graduation in lots of ways. 

But in some ways the same.  The students were jittery with feelings.  Excited and nervous, hopeful and anxious.  But also reflective, and a bit sad, and maybe a little scared.  I recognized the emotions, not just from the memoires of my own graduation, but of so many different times in my life.  The balance of those emotions vary depending on the situation, but certainly the mix is a familiar one.  Even right now as we move into a new chapter ourselves after such a wonderful chapter that included Drew.

I had auditioned to give an address at my class's graduation over 10 years ago.  I was a finalist, and gave my speech to the deciding panel.  I wasn't selected, and remember feeling more than a little disappointed.  Being asked to give this address last night, I saw the prayers prayed over a decade ago be answered, and probably in even more grand fashion than if I'd have gotten to give my speech back then.  It gave me goosebumps to realize how God followed through with this ambition of mine.  And served as just another reminder that all things happen on God's time.  And how much better it is to wait for His plan.   I got to give my commencement speech after all, just not exactly how I thought I would.  A wonderful example of life walking with the Lord.

Here is the transcript of the speech God helped me write.  He helped me as I wrote it a few weeks ago, but also as our lives played out last year, giving me the lessons and experiences I needed to put it together.  I hope posting it here will continue to spread truth and help others to Chose Joy, and truly live during the hardships we all face in life.

Intro

I’ve heard it a lot this year.  “I don’t know how you do it”, “I can’t imagine”, or my personal favorite, “You are living every parent’s worst nightmare”.  When things don’t work out the way you planned, what do you do about it?  How do you respond? Adversity comes in many different forms and to each one of us.  It doesn’t have to be as dramatic as our story, but can be things like a hard break up, not getting the job you wanted so badly, dealing with difficult consequences from bad choices, or dealing with painful wounds from the past.  How do you not fall into the trap of being in a nightmare?  Last year from the outside, it certainly must have been hard to imagine how our lives could have had any joy, and maybe especially now, that Drew has moved on to Heaven.  But, believe it or not, we really did have the happiest moments of our lives last year, admittedly mixed in with some of the worst.  How is that possible?  How did we do it?  Well before this all started, I wouldn’t have been able to tell you, and in fact, I might have been the one saying those things to someone like myself.  And even during last year, there were times I was figuring it out as I went along.  But looking back, I’ve been able to narrow it down to a few conscious decisions and attitudes that my husband and I chose to take, which allowed us to truly enjoy our lives, even during one of the worst situations.  Tonight, I want to share with you what those choices were, so that you too can experience joy that goes beyond your circumstances.

1.

It begins with deciding to not let yourself become a victim in life.  I have come to firmly believe that you are only defeated when you begin to act defeated.  The night before we took Drew back home for the first time after the diagnosis, God helped me realize that we had a choice.  We could take him home and pout about the life we were missing out on.  We could be angry or resentful about what we were having to deal with while others appeared to have such easy lives.  But what good would those choices have done us?  I know now, we would have missed the last year we had with Drew, by being upset.  Instead, we resolved to live each day to the fullest. To choose joy when despair was so much easier. And to continue with an attitude that we were going to live our lives, and just fight cancer along the way. It was not going to define us. And with the strength of God, we did. 

What did this look like in practice? Well, he was scheduled to be in the hospital for his 2nd birthday.  So we took the party to him and reserved a conference room for a walking taco fiesta (which the nurses still talk about!).  He couldn’t be submerged in water over the summer.  Instead of swimming, we played in sprinklers and with water tables when we were home.  He got sick from chemo, and his feeding tube came up right before we were suppose to meet friends at the park. But while we waited in the ER to have it replaced instead, we toured an ambulance and ended up having a fun afternoon anyway.  We didn’t let cancer take anything more than it could from us.  I learned in the process that if you refuse to let circumstances get you down, you will truly live during life’s trials. 

And even now we have the same choice in the face of his death.  Drew didn’t die a victim of cancer, he didn’t “lose” his battle.   Even though I know that Christ ultimately has already won over death, I also know that Drew did too.  As I watched that boy get as much life as he could out of his little body, and smile even up until his last day, I know that cancer surely did not win.  And the way we live each day now proclaims that too.  We will carry on, we will do good things in Drew’s memory, and enjoy life.  We won’t let cancer claim our lives too, we refuse to be destroyed in its wake.  Cancer did not win, it will not get the last word. 

So live your life in that way too.  When disappointment and heartbreak come, don’t give away your power by letting something out of your control destroy you.  Choose to love again, and you will not be the victim of a bad breakup.  Keep applying and working hard, and you might find God has a better job for you than that position you wanted.  And if you are dealing with wounds of the past, it’s possible to truly live again through forgiveness, and be free from those that hurt you.  But it starts with the decision that you alone have the power to overcome. 

2.

It continues then, that you must move beyond your current feelings if you want to have joy during life’s trials.  Even if you’ve decided to take back the power from whatever challenge you face, we are still human.  And we all have emotions that are hard to ignore.  But we must, if we are to truly live during difficult times.  This culture and world today are so focused on how they feel.  What makes them feel good and fulfilled are the only things of value.  And what is too uncomfortable, too hard, must be avoided.  I’m telling you, you must not listen to this.  Note your feelings, consider them, but don’t be enslaved by them.  Sometimes what makes you feel good, isn’t the right thing to do.  There are times when the harder road is the one you need to take.  Don’t let fear hold you back, you can do things afraid.  It’s about trusting God.  That he is bigger than your fear.  That he understands your suffering and has a purpose for it, just as it was with Jesus.

 If I had acted on how I felt most of the time, our last year would have been the nightmare some pictured.  There were more mornings than I can count where I woke up in the hospital, on a cot next to Drew, SO tired.  Not just tired, but exhausted.  Physically, emotionally, "all the feelings".  But I got myself up anyway, washed my face, drank a whole lot of coffee ;), and followed Drew around the halls and played with him in the playrooms.  I wouldn’t trade those memories today for anything, but they wouldn’t have happened it if I had decided a needed some “me” time instead.  Or after we found out the cancer was back, and I felt so, so disappointed and scared.  But I deliberately tucked away the tears the next morning. Decided I'd save them for naptime, and took Drew and Molly to the park instead.  After watching them laugh and play together, feeling the warm sunshine and cool breeze, you know what?  Those tears weren’t there anymore by naptime to let out.  Or at the end, when it would have been easier to take Drew all over the country to find more options last December, but we chose to stop.  I would have felt better doing something, then surrendering him to God.  It didn’t feel good at all, and I was afraid again.  But I heard God telling me it was the right decision.  We didn’t know it, but Drew only had 5 weeks left when we decided to stop treatment and celebrate Christmas together and go to Disney World.  I am so glad we gave Drew the gift of those experiences instead of more time feeling sick in a hospital bed.  And we gave him that gift, and in turn the gift of those memories to ourselves and to Molly, because we didn’t let our feelings dictate the direction we took.

You can’t control what happens to you, and maybe even how you initially react.  But you CAN control how you respond, and there is a difference.  Move past your feelings and choose to make the most of each day.  So if you’re tired, disappointed, confused or broken hearted, that’s okay, but don’t stay there.  Rise above your feelings and do it anyway, work harder, and love, despite of.  Don’t wait until you feel better to do something, do something now and you will feel better.  That is the way to continue to move forward through the trials of this life.

3.

After you’ve resolved to be no one’s victim, and worked to move past your feelings, I’m convinced the last key to finding true joy in any circumstance is being thankful.  Consciously looking for things to be grateful for is a daily discipline that has the power to bring you true peace and joy.  And it really isn’t so hard to see these gifts in your day once you start looking.  As my Mom always told me, "yes, there is always someone who has it better than you.  But there is also always someone who has it worse."  If you can’t find that someone who has it worse, you aren’t looking hard enough.  When we choose to be thankful, something changes in us.  We acknowledge that there is someone higher than ourselves who gives us all things.  It shifts our focus from ourselves and our feelings, to the generosity and care of God.  Which, once you open that door, will flood your life with light. He cares and loves us so much, and it’s evident all around us.  It is a discipline, a daily practice of being thankful that brings true joy.  Because once we see all that we truly have, how could we not be joyful? 

Last year this truth was evident on a daily basis.  Once you’ve been stripped of everything that you knew in life, you begin to appreciate the little things.  As I sat in hospital rooms and watched children and families go through hard things alone, I appreciated my family and friends all the more.  When I hadn’t had my whole family together at home for weeks, I was thankful to hear all the voices together again (even if there was fighting a little fighting).  And in the end, when I was tempted to think we couldn’t be in a worse situation, a walk down the halls of the Pediatric Intensive Care Unit reminded me how much I still had to enjoy and be thankful for in Drew.  And even now, as I grieve the happy son I had, I am thankful for the memories that still remain in my heart.  That I got to really know the beautiful soul that lived in that little body for such a short time.  Some parents are denied that privilege.   Joy came to us, even through the pain and difficult times, because we choose to get to the point where we were thanking God for all He generously gave us.  And it certainly did not feel like we were living in a nightmare last year, even if to the world, we were.

Wrap up.

 There.  So now you know the secret, the “how I did it”, the cliff note version.  I’ve given to you from the knowledge we acquired at such a high price.  Take it to heart. Learn from our story.  It’s a way in my mind that Drew will live on.  That his suffering will have even more purpose—to help each of you get the most out of life too.  This process of: choosing to be no one’s victim, moving beyond your feelings, and looking for things to be thankful for in the face of adversity isn’t easy, but the joy it leads you to is worth the work.  So begin working on these skills now, before the stakes are high.  Trust me, it’s easier to take these practices to the next level, than be trying to develop them when crisis happens.  Pacelli has pretty good athletic program, right?  I’m sure you all know that you don’t show up on the day of a game or meet without training or practicing and expect to do well. I know after just completing a half, that you can’t just line up for a marathon without training and hope to finish with a good time.  It’s the same with life.  You can’t expect to handle the hard stuff of life with strength and grace, if you don’t practice the daily disciplines to build that strength and grace.  We all have bad days; can you follow this process so that you’re in a better mood by the afternoon?  Once you can turn a small thing like a bad day around, you are on your way to preparing yourself to find the silver lining in the big things, and experiencing true joy that goes beyond your circumstances. 

Concluding story.

When we went in to have Drew’s central line removed last December, which is the direct access into a major artery, Drew walked in with his usual swagger (swag?).  Flirting with and teasing the nurses, asking for his complimentary ice water, hot blanket and ipad.  As we waited for his surgery time, we first had to take care of business.  Do we give him a pre-med?  There are drugs to make kids a little loopy before going in for the procedure.  It helps if they are anxious or upset, but I found makes waking up a lot harder.  So, we skip it.  “Drew does so well without it, why give it and make him groggy later?” I reasoned.  The nurse agreed, “I love it, let’s not dim his shine!” she said, looking over at Drew’s beaming smile as he played on his ipad under his hot blanket sipping his ice water.  The nurse and I continued to chat,  “So…are you done with treatment then??”  See, usually this line isn’t removed until you are clear of cancer, finished with treatment, and moving on.  She was ready to help us celebrate!   I explained Drew’s cancer was actually spreading, and fast.  That we had made the decision to remove his line and stop treatment so we could go on our Make a Wish trip to Disney World, swim in the pool, ride all the rides, and get the most out of our time together.  Obviously, this wasn’t the answer she was expecting, she told me how sorry she was.  I agreed, it was too bad.  But I explained that yes, it isn’t the position we were hoping to be in when we removed the line.  But it’s where we are.  And just like we had done the whole year, we were going to choose not to pout about what we can’t change, and lose precious time, but enjoy each day.  The time came, and Drew was wheeled out, smiling and waving “see you later”.  As I went to leave too, the nurse pulled me in close, and with tears in her eyes said to me, “Don’t you let anything dim YOUR shine, either”.

I leave you with the same words today, and hopefully the principles you need to be able to do it.  Class of 2017, don’t you let anything, dim YOUR shine!  Good luck, and God bless.  Thank you.

~~~~

 And good luck to all the Seniors from communities all over this Spring!  May you find joy in whatever path God takes you.

That Smell...

Yesterday, Molly was fussing about the "sticky goop" left on her knee after she took a Band-Aid off as pulled out of the Walmart parking lot.  I told her we'd have to scrub it off later, when we were home.  Then I remembered, I probably had those adhesive removing wipes from our dressing change supplies for Drew's central line still under the passenger seat! It was an emergency bag of supplies we had put in the van last year, just in case we needed those very important supplies.  Yep!  There it was.  Fumbling through the bag...my heart just sank.  The swab caps, the heprin syringes, the sterile gloves and masks...oh Drewy...I handed her back the wipe, and then the smell found my nose.  That smell of the adhesive removing wipe.  So crisp and strong.  It brought me back--Drew back--instantly. Week after week last year we changed that dressing.  He'd sit so patiently and watch Wheel of Fortune while Josh and I gloved and masked up to do the job.  It was quite a job, and I guess now I know I'll never forget the smell.  It used to amaze me how many supplies were used and how much of an aftermath there was.

Smells are so powerful.   And I think I knew that.  Most of us can recall memories based on smells, smoke from a grandparent's wood furnace, fragrance from mom's favorite flowers, savory smells from the kitchen on Thanksgiving.  And this is the same, but so much more.  I crave his smell.  I think I'm crazy sometimes going through blankets and his clothes just wanting smell him again.  As we walked in the door the day he died, I immediately put his blanket and animals and pillow case into the washer.  That last week, he didn't smell like himself. I knew it there, and I couldn't wait to wash off that awful, awful smell of death from my baby boy's things, and never smell it again.  But in doing that, I lost his smell too.  Maybe one corner still smelled like him...I'll never know.

As I saw how much that adhesive remover smell got to me, maybe that's why I haven't found his smell yet.  The Lord knows I'm not strong enough right now to handle that tidal wave of emotion when I get his smell in my nose again.  But I have hope, that someday I'll come across something...a forgotten coat, an emergency shirt tucked somewhere I've forgotten, that will have his scent on it.  Until then, I'll know that someday I won't just find something of his with that smell, but can actually smell him again!  The nape of his neck, his breath, his hair, all of him!  I just wish I didn't have to wait a lifetime to do it...

Yesterday I also made a trip to Rochester to drop off another set of Warrior Wagons.  We received 11 beautiful quilts from a couple members of Josh's family who are a part of a quilting club.  They look so wonderful next to the colorful towels in the Wagons. 

I'm so happy with what we are doing, so honored to be able to give, to help, those who I know need it so much.  It's always uplifting to see nurses and doctors, and even my buddy Mary the house keeper at St Mary's.  It was a wonderful morning, as usual.  At the same time though, I was continuing to feel the sting from that wipe's smell.



This is how it's been going inside for me lately--so much going on at the same time.  Longing for what was, enduring nearly constant missing of my boy.  In the car, around the house, outside as I look at the sidewalks he walked so many times up and down pushing that shopping cart.  At the parks we go to, the grocery stores, and the library.  There are very few places that don't hold a memory of Drew around this town.   But then I can be happy at the same time too.  I can enjoy my new Y classes, smile as I watch Molly getting better at riding her bike.  Enjoy cooking and baking again.  Have fun with my friends on someone's deck in the warm weather.  It's all going on at once, yet they both are very real.  It can be exhausting, and confusing.  I feel crazy sometimes.  I can tell I've been scatter brained.  More moody with my friends.  More impatient with Molly.  Short with Josh.  Some days I just want a break from it all.  To be ordinary again, "just" a stay at home mom, with two little ones to raise.  Wish God would have just chosen someone else for this difficult life we've found ourselves in.

I'm sad to realize we are more used to missing him now, then him actually being here.  It's starting to feel normal without Drew, and I hate it.  As soon as I recognize the casualness of our daily life without him, my heart just screams at me inside.  Do you even remember what it was like to get two ready to go??  How do you not even think to go to the back seat anymore to buckle him up, get a cart to push him in at the store, or get the stroller ready for a walk?  Remember those de ja vu moments I've talked about before where I feel panicky looking for Drew, realizing he's not there, wondering where he is for a spit second before my heart remembers?  I haven't had a moment like that for a while.  It's almost switched to these moments when I realize how adapted we've become to life without him, and resent that.  My heart is accepting what's happened, and is mad about how the rest of us have just gone along with it.  Good days turn sore quickly when I realize how nice of a day it's been despite Drew's absence. 


I do have things to focus on, to still the chaos inside, giving me a break.  After my half marathon was done, I've now been working on my speech.  As I said before, I am giving the commencement address at Pacelli's High School's commencement ceremony.  The ceremony is tomorrow night, Wednesday the 7th.  I've been practicing the delivery the last few days.  Once again, I'm seeing how different writing is than speaking.  Its a different muscle so-to-speak.  One I used to flex a lot, but can tell I haven't for a while!  It's coming back though and its nice to get back at it. 

I'm so honored to be asked, and really want to make the most of this opportunity.  It is another whole audience that I can share from Drew's life with and the lessons we learned last year which hopefully they can take it with them in their lives.  His life can reach even more, and have even more purpose.  I can be proud of what he accomplishes in other's lives, even after he's moved on to Heaven.  I know how privileged I am to be able to share the experience of Drew's hardships and suffering. It's really his and God's story and wisdom I'm sharing, I'm just the messenger.

Even though I'm happy with this honor, I'd turn it down in a heartbeat if I could just have my Drew back.  All of the attention, gifts, considerations are nice sometimes, but in the back of my mind I would always just rather not be so special.  Another bereaved cancer mom has a way of saying it--I'm sad for the WHY.  Today, it seems I'm just so sad for the why.  That smell just opened up the deep wounds in my heart again, and it feels so fresh.  I just wish I had him smiling at me again.  See him watching the garbage truck at the window with Molly, in the chair here bugging his sister, or sitting at my dinner table again...

But I will be okay.  God will help me weather this storm, just as He has every time before.  I am comforted to know that at least Drew isn't suffering anymore.  He doesn't feel any of this pain.  He's not missing us like we're missing him.  We will all be together again, and I hope it feels like we were only apart for the blink of an eye.


The ceremony is at 7PM tomorrow night.  Please be praying for it to go well.  For minds and hearts to be open to the message, for my nerves to stay under control, and that God would be glorified, and that I could make Drew proud.

Tying up Loose Ends...

There has been a lot of life in these last couple weeks.  I think I need to take some time to share about it, since I talked about them before and never followed up! 

Molly had a wonderful preschool graduation.  It was a hard day, but I did try to get all my sad tears out of the way during the day so I could keep it together for the concert and graduation part.  Molly did so great singing the songs and doing the actions.  A year and a half ago she had to be pulled off stage because she couldn't handle being in front of everyone and lost it.  So to see her now being so confident is wonderful! 

The high school choir joined the preschoolers for a song that was dedicated to Drew.  Luckily I had a heads up about it, and wasn't caught off guard.  It was a beautiful song called "Clouds" by Zach Sobiech, a teen with cancer as well who wrote the song before he finished his job on Earth and went Home too. 

It was a touching tribute, and reminded me just how much our story was a part of this class's year.  Molly's teacher said there were many times a classmate would suggest they include Drew in their daily prayers or suggest him for class drawings.  The high school kids were so caring for Molly this year, it was great to have them involved as well.  It breaks my heart to think of the disappointment, the confusion these little ones and young adults must have felt last year.   Some days I cry just for that--the conversations that had to take place in living rooms and at bedtimes in our community and beyond last year. Where the innocent had to learn about the tragedy in this world.  I cry because of the tragedy in the world in the first place, and also because it had to invade the lives of so many of our little friends at such a young age. Where they probably asked questions, just like Molly did, that we as adults struggle to answer in our own hearts.  I hate that parents had to bring the harsh reality of this world into the consciousness of their kids, just like we had to with Molly.  But, even though I struggle to accept it some days, I know this was part of God's purpose for Drew--to teach hard lessons to all of us.  He couldn't picked a sweeter teacher :)



But before preschool graduation and the flood of emotions that overwhelmed, Josh and I went to a Ball!  We had decided to give a portion of Drew's memorial fund to Make A Wish, the organization that sent us on our wonderful Disney World trip.  Instead of just making an not-very-climactic donation online, we looked into upcoming Wish events and found this Ball.  We decided we'd take the amount we were going to donate and sponsor a table, bid on silent auction items, make a night of it.  We got a group together and that Saturday night, we did just that! 

It was a wonderful event.  The dresses were fun to see, the games and silent auction items were interesting, and the food at dinner was amazing!  The program got me teary, of course, and so did the live auction following.  When I watched people raise their hands to bid on items and packages starting at $5,000 and higher, I thought, there is some family's trip right there.  Some other family's last memories bought for them by some very good and generous people. This is how it should be, those with much blessing those in need.  I hope they know how grateful us Wish families are.  Thank you is not enough for what the trips and wishes do for our moral, at the time, and for years to come.  So I wanted you all to understand that too, because through your donations and contributions to our family following Drew's death, you gave enough to take a family on the trip of a lifetime.  For many, the last trip of their lifetime.  Thank you.




And then, my run!  I completed my 3rd half marathon last weekend at a new personal best time, 2 hours and 10 minutes.  And I felt good most of the time.  Molly and Josh dropped me off at the start and were along the course several times to cheer me on. 

The couple miles around St Mary's were the hardest, but I made it through, and the last few miles actually didn't feel as bad as I thought they would! I finished strong, and thankful that I could accomplish this feat again, and have learned so much along the way.

We received these little dew drop things with Drew's picture on them as a gift.  They are like clear marbles with a flat back?  Anyway, I put one of them in my running belt, and the last mile I pulled it out and held it in my hand.  It was nice to carry Drew with me for my 13 miles, and finish with him in the palm of my hand.  He certainly was a big part of all of my training to get to the finish line, and especially the motivation to finish strong. 

Running the same trails I did so many times while Drew was at St Mary's, I reflected a lot on that time.  I had a bench where I'd get to and the sit and cry.  I never really did cry in the hospital much, but many tears were shed on that bench, looking at the hospital and downtown towers in the distance.  I'd think, how much of my life was in that hospital.  My Drew was there, which was enough, but also how much this was changing me.  How I really was leaving my old life behind with each hospital stay.  I could tell I was becoming a different person through all of our stays in that hospital and trips to the clinic.  I had a couple times when I know God sat with me on that bench, and gave me encouragement and the strength to keep going.  I imagined my self of 6 months ago running beside me through those paths, what would I tell her?  It seems I couldn't be very encouraging given what happened...or could I? I decided I would tell her, it would be okay.  Maybe not in the way you want it, but don't worry right now.  Go back and hug that boy.  Give him a big kiss from me.  And it will be okay.  You can do this.  You are doing it, and we will make it...


The summer is looking to be just as busy as the last few weeks.  I'm excited for the things we have coming up, but also bracing to handle it.  Just as it was with Spring, I can see that as seasons change again there will be another whole set of things to miss Drew through.  To wish he was here to enjoy it with us, to wonder how much he'd have changed since last year, and to be sad that the world is just going on without him.  An all new set of firsts.  Continue to pray for our hearts, and for God to keep carrying us through this exhausting time of many up and downs.