Tag: encouragement

Super Heroes And Scars

This last week, I had an opportunity to teach in Chase’s class. As we talked about narratives, he sat quietly, drawing his heart onto a blank sheet of paper. The story would shape into a super hero boy whose mom would not let him save the world until he cleaned his room.

“Are you saying that the world would be a safer place if you never had to clean your room again?” I asked him with a smile.

Eyebrows lifted, mischievous face in full bloom, he grinned. “Of course. It’s bad for the world when I clean.”

But then he pulled me aside and his voice was a gritty whisper of sadness as he asked me. “Do they know I have hearing loss?” This is something Chase does often. Despite it being a reality for the better part of his decade, Chase fights his hearing loss and is still tempted to treat it like a dirty secret, even when obviously wearing an aid in school. I’ve watched him feel shame about it, and frustration too. In fact, it’s one of his big three – “The H’s” – height, hair, and … hearing loss.

We remind him how brave he is. 

We remind him how hard he’s had to fight for those scars of loss and how proud we are of him.

We remind him that they are a precious part of him, but need not define all of him.

And yet, he struggles. 

Until last week.

Last week, I got to see an incredible change in Chase regarding his hearing loss. For the first time in as long as I can remember, I saw pride. 

This joy-filled confidence came about because he, as a fourth grader, got to walk into a second grade room and be physical encouragement to a new second grader who had just started wearing a hearing device and was doing a presentation on it for her class.

How brave is the precious eight year old girl who stands for such things?

And how brave is the precious ten year old boy who stands with her and says ‘You’ll be okay because I’ve done it and I’m okay too”?

After all this time, and all the affirming words and normalizing exercises, I finally saw Chase most proud when he was able to use his disadvantage to someone else’s advantage. He became most heart-full when the very scars that bother him became someone else’s encouragement.

And I hope you hear the truth underlaying this story and that you can hold it close to your own heart even today. 

Your struggles are not in vain.

Your pain is not without purpose.

Your weakness may very well be your greatest strength. 

Because, Dear Ones, when it comes to the story God has for you, the pieces that fall into place are never in error, even if we don’t see how they work together. You are in the middle of your story for a reason – “for such a time as this”. 

Moment by moment.

“God comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.”

2 Corinthians 1:4 (Message)

For privacy purposes, I will not share the school where this was taken, the hearing teacher who took it, or the two other children in the original frame, both with hearing pieces wrapping their ears or devices around their necks. But I can tell you that the joy on their faces is beautiful, and I can share Chase’s smile with you as he stood alongside them.

Preparing For The Next Year

It is absolutely incredible to me that it’s been a whole year now since I stood in the hallway of the oncology floor with Chase’s doctor. 

“Did anyone call you?” She paused. “The results of the MRI were great. His brain and spine are clear.”

“Yes,” I remember saying. “We met with neurosurgery right after the scan.” And I remember thinking: another year – we’ve bought ourselves another year with this news.

“There’s just one thing…” the doctor said, casual and calm in the hall. Because it wasn’t a big deal. It really wasn’t. “The MRI picked up something in his thyroid. It’s most likely just a nodule, but we will get you set up with endocrinology for some tests in the next few weeks.”

January 2019

One whole year ago now. 

Diagnosis.

Surgery.

Tests.

Relapse/growth.

And finally treatment.

What a year!

But now it’s is a new year, a new decade, and Chase is hopefully turning a new corner.

The radioactive iodine will be a present force in his body for weeks and months yet, so it’s very difficult to define exactly what his status is in this moment, because he actively has active cancer, but he passively, invisibly has active treatment too. I suppose the best way to describe the fight he is in right now is with the picture of a muted TV. The screen is still on and the watcher is still completely aware of it, but cannot follow the details of the game/movie/show because it is silent. That is Chase’s fight right now. He is in passive treatment; an active fighter, the battle on mute, but completely still occurring. The only way we will be able to have a view into the fight will be through ultrasounds every few months, and lab work every four weeks or so – an important part of maintaining his thyroid medication levels, and an early warning system for anything else growing.

And on that same subject, Chase’s last labs showed numbers that reflected his fight in other areas. He had to discontinue his growth hormone shots when he was diagnosed, and his most recent labs confirmed what has been suspected about his little body for years now – it does not have what it needs to sustain an endocrine system long-term. And that breaks my heart because he’s a broken body in a broken world and I’m sad for the struggles he faces along the way – even as he braves them again and again – but for now, these pieces are also treatable. 

So, we will treat him and care for him with careful monitoring and daily injections – giving his body the best chance it has to thrive.

December 2019

And none of it individually is hard or horrible, but altogether, it makes all of us a little weary because it’s the price of doing business as broken bodies in a broken world and our hearts long for the day of healing when we can see Jesus face-to-face and can be free of things like cancer and tears and poking with needles again and again. 

And until then, we keep breathing because there will always be hope and purpose in the journey. Thank you for doing another year with us on this road.

Moment by moment

“God is always doing 10,000 things in your life, and you may be aware of three of them. … There is no power in the universe that can stop him from fulfilling his totally good plans for you.”

John Piper

“I know that you can do all things, and that no purpose of yours can be thwarted.”

Job 42:2

Raising Encouragers In An Atypical Life

ENCOURAGEMENT: /noun/ the action of giving someone support, confidence, or hope.

Giving support to others not only requires mental and emotional energy, but also and often a shade of vulnerability. I have to open myself up to help someone else. And this aspect of living in community, well, it can get complicated when I’m heartsick and weary. How can I possibly care for someone else when I feel in shreds…when my family feels shredded and resourceless? I suppose I expect to care and serve others out of my own excess of peace or joy. So how do I give joy when I don’t feel it in my life…when there is seemingly no excess? And how on earth do I teach my kids joy in the atypical?

I worry for the other three all the time: how will Chase’s cancer diagnosis harm them? How has all of this defined them or broken them? …perhaps even in ways we can’t see or won’t know until they’re adults themselves? (2:00AM thoughts that push the ‘panic’ button)

Will they struggle with what to believe? …with who and how to love? …with their life purpose? And how many of these struggles will they be able to pinpoint the birth of in a sibling’s terminal illness, subsequent struggles, and the too-often mentally, emotionally, or physically absent parents who should have been at their sides.

I want to fix all of these things before I even confirm their brokenness. I want to pre-empt all the pain and cushion it. And I acknowledge in my heart and even as I see with my own eyes that it often isn’t the big moment kicking in the teeth of their precious hearts, but the little one. If L-O-V-E is truly T-I-M-E, then it really is a moment by moment fight for the good to win through all the pain and craziness.

And here’s what I’ve found: there is so much I can’t take away from them, but there are things I can give them – almost like tools to build or weapons to war. Because life may be atypical, but it can still be incredible – it may not always be “good”, but it can still be right.

“Share each other’s burdens, and in this way obey the law of Christ.” Galations 6:2 NLT

Share.

Obey.

We were created for this. Despite the vulnerability and pain, we survive as we share the ups and downs of life with each other.

What does this concept look like in a feet-on-the-ground, eyes-open-wide way ? And what does it especially look like when the burden is a life shadowed by complicated illness and the burden carriers are little children?

FaceTime in the hospital

Notice Others: A huge part of developing encouragers is fostering awareness of those around you. Go around the dinner table and have each person say something they like or appreciate about the person to their left. This makes us have to consciously consider the good in others, and as we see this, we often see their hard things to comfort too.

Seek To Relate: “Do to others as you would like them to do to you. (Luke 6:31 NLT) This goes one step deeper than just seeing the person next to you. Actually try and put yourself into someone else’s shoes. Try to feel what they feel. This can be complex and even offensive in painful moments, but painfully easy and wonderful in life’s joy moments. And perhaps, there will be a fantastic and interesting discussion as you tie what your kids know and feel to what someone else close to them might know and feel.

Be Authentic: There are few things that can’t be worked through by talking to each other honestly and openly. If we genuinely don’t know what to say, I believe it’s okay to express that inept or powerless feeling and talk it through. This is often the most vulnerable moment, but also the most rewarding for in opening my heart, I invite the other person to open their heart as well.

Celebrate Victories:  Some victories will look like winning and others will be simply refusing to let the darkness, weariness, stress, or anger in. To feel the pull of pain, to deny it, and to choose joy or hope instead is a staggering victory and should be celebrated as such. (These moments aren’t always deep and nuanced. For some people in our family, this is as simple as forcing themselves out of bed the morning after a long day in the hospital.)

Just Stop: Sometimes I just have to stop and sit. Gather up my precious babies onto my lap, or under my arm, kiss their heads and tell them I love them. We cover ourselves with a blanket and just snuggle for a bit. Then, I breathe deep and say it aloud: “You guys, let’s just take a minute.” Because nothing tears at the heart and mind like constant, unabated stress and sometimes, miraculously, the petty fights and little hurts resolve themselves as we breathe deeply and remember love, not hate.

Just Go: Yes, sometimes we need to stop and breathe. However, other times, we need to get up and go. Hang the schedule and the clean house or the project that’s still not done… just go for a walk together, go to the park together. Or, even better, go check in on a neighbor, take popsicles to someone who just had surgery, take coffee to Daddy at work… These small things, especially the things that allow us to serve others are a constant, tangible reminder that we were not created to function in a void and that our personal pain, stress and hardships do not comprise the only story in the world. Breaking down the boundaries, meshing with others, reaching out – all of it – is like water on the tender growth of sensitivity.

Orchestra concert cheerleader

And dear ones, I hate writing list points because it feels like accomplishments checked off and won. The truth is: we are broken. We fail at these ALL the time, scratching each others’ eyes out with our words and our selfish hearts just as often as we hug and bind with joy. But I’m writing these things down all the same because I need to remember, and maybe, just maybe, you’ll find something encouraging here too. You are loved.

Moment by moment.

“All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” 2 Corinthians 1:4

 

What Can I Do?

“What can I do?”

This is almost always the first question.  

photo 2 (6)

Because of Chase’s medical history, it’s not uncommon for people to talk to us when they find out a loved one, a neighbor, or a child in their community, has recently been diagnosed with cancer.  And down to the last person, the first question is almost always the same: “What can I do?” or “How can I help them?”

It’s a ham-strung thing, this nasty piece called cancer. It seems to defy words because it defies our bodies, our medical advances, our treatments…everything.  There is no one right way to handle this type of situation, but I’ve made my list anyway, and at the very least, you’ll learn that we might be a little crazy and and are definitely very broken, but then, you probably knew that already. My heart in these few points is that something in our story might help you.

Without further ado, ten tips for interacting with a newly diagnosed cancer family:

  • Don’t feel guilty or awkward if you don’t have something brilliant to say to a newly diagnosed family — I am not aware of any phrase in any language the appropriately sums up the thought: “I’m so sorry your child has a terminal illness and might die”.  I really believe it’s okay to say “I have no good words, but I love you and I’m here.”  Sometimes it’s not about verbally fixing the problem as much as it is just being willing to sit in the trenches with a friend and keep them company while they fight it out.
  • The initial stage of diagnosis may not be an appropriate time to share resources with the family — The day after Chase was diagnosed, I almost passed out on the medical imaging floor and had to be taken back to his room in a wheel chair. It was incredibly embarrassing. In the moment of diagnosis, the patient and/or family is just trying to keep breathing. That may not be the right time to try and connect them to groups, friends you know who’ve had cancer, or other resources. So much of the first days are just trying to figure out who they are in relation to the illness. Unless the patient’s life hinges on your words, it’s okay to wait a few weeks.
  • The initial stage of diagnosis is not the right time to discuss a family’s treatment decisions — If you truly believe that you have life-changing, life-saving medical information that will assist the person you’re close to, I’d strongly suggest taking it to a close family member (like a grandparent) and if that isn’t an option, lovingly write it out in an email, and then be understanding if you never hear back from the family.  I can almost guarantee that it’s nothing personal – they’re just trying to survive.
    • [Technical note: did you know…? Chase was born with a genetic predisposition for his particular cancer. He was a naturally-born, breast-fed, organic vegetables, green cleaners, low sugar, cloth-diapered baby, and he still got cancer. When he was taken to the hospital, he would have had hours…maybe days without medical intervention. That’s how fast his cancer grew. For our family, there was not a liberty of months available to try alternative treatments or wait and see what unfolded.  And Chase’s story is the same as many others in the childhood cancer community – these cells that hit our littles come fast, strike hard, and seemingly have very little to do with lifestyle choices.] 
  • Consider the diagnosed family’s costs — Before Chase was diagnosed, when I thought about the monetary costs associated with cancer, I thought about doctors’ bills.  And that part is true… ha. You should have seen the bills for the brain surgery alone. But what I didn’t consider was the cost of gas for all the back and forth to the hospital, the cost of food – eating out sometimes three times a day for two weeks on end – the cost of parking (almost as much as the brain surgery, I swear…), and dozens of other little (and not so little) accidentals. [Example: Chase became too weak to walk, but was too heavy to carry around the hospital for 10 hours a day and so a special stroller had to be purchased.] And this doesn’t even touch all side effect costs of physical therapy, psychological assistance, hearing aids, walking aids, ongoing medications, evaluations, scans, etc… depending on the child and their road through treatment. The cost list is literally endless.
  • The diagnosis family may not have mental energy to make “normal” decisions — Shortly after Chase was diagnosed, we had treatment decisions. Bob and I had to decide terrible things and big things that would make you want to fall down if you heard all of them – and we did it and stayed standing. (Thank you, Jesus) But one day, my mom was making lunch for my other kids and asked if I wanted them to eat chicken nuggets or peanut butter sandwiches and I completely snapped. Totally lost it. Was it a big decision? Not at all. But all –  I mean ALL of my decision-making capability and all my mental energy had gone into those decisions for Chase and staying on my feet. I literally had no capacity to care what the other kids ate for lunch even though I loved them dearly and didn’t want them to starve. I simply didn’t care what food was on their plates.
  • Be sensitive to a new diagnosis family, part A — Please consider that your drama in the car pool lane or issue at the grocery store may sound very callous to a parent who hasn’t been out of the hospital in three weeks and wishes that their child could go back to school.
  • Be sensitive to a new diagnosis family, part B — Surprisingly, the opposite side of speaking callously about your car pool issues is not speaking about them at all. It’s true, my average day may very well be more difficult than your worst nightmare, but stress is stress and it breaks my heart when people tack on a “it was bad, but not as bad as brain cancer” to the ends of their sentences when I’m around, or drop off speaking when I come into a conversation. Yes, our life is complicated because of pediatric cancer, but it’s not like we have the plague. Don’t feel the need to avoid the subject if the family hasn’t explicitly requested it. There is no brain cancer trump card. There is no hierarchy of bad things. And sometimes, I very much need to be out of my own head and listening to whatever is in yours. Sometimes, listening to those anecdotes and life moments is as “normal” as my day gets and it keeps me from focusing on the cancer. So, don’t be afraid to ask “What do you feel like talking about?” – the answer may surprise you.
  • Don’t assume that just because you don’t have cancer you can’t be a wonderful friend to a new diagnosis family — Yes, it’s true that nobody understands like another parent of a pediatric patient, but some of my best connections, encouragements, and life lines during Chase’s cancer treatment came from people who never had a child with cancer. So, don’t discount the role God might be wanting you to play in walking alongside someone.
  • Be prepared to shift your idea of community for a newly diagnosed family — I love community and fellowship – going to people’s houses, having them in mine, grabbing coffee, taking kids to parks, to the pool, etc, etc.  But all that stopped when Chase was in treatment. Bob and I were in the hospital most of the time, and what few days we were out, we were exhausted, sleep deprived, and had a child attached to an IV bag who couldn’t be out of our sight or reach, let alone all of his emerging issues of immunity and neurological over-stimulation. Gone were the days of pools and parks, people coming over, or going anywhere. In all honesty, that was one of the most well-meaning, yet painful questions I was frequently asked: “Well, what do you mean you can’t get out? Can’t you get some time to yourself?” No. Even if I could have left Chase’s side (which I couldn’t unless Bob or a medical professional was available to handle his IV bag), I was too sleep-deprived to walk, let alone drive. My point is: be willing to consider a paradigm shift in your community with a cancer family. Maybe instead of taking them out to a restaurant, you bring them dinner, or maybe just dessert and coffee for an hour. Don’t be surprised if you don’t see them at events – it may not be a coping issue, but rather a medical necessity. And maybe there are ways to give the cancer parent “time off” in their own home if they can’t get out.  Sometimes a short visit over coffee is all that’s needed for a quick breather.
  • There is no window of time for encouragement to a newly (or not so newly) diagnosed family. We get used to a lot of things and that’s good, really, it is. But that means that there’s often a huge out-pouring of love and caring and gifts and help at the beginning of a diagnosis and then things taper off as the shock wears off.  Most childhood cancer treatment roads require a long, exhausting marathon, not a sprint, so keep that in mind as you connect with your friends. You’re never too late, and quite honestly, checking in down the road can sometimes be more encouraging than at the beginning.

Do you have other questions about how to help a family with a cancer diagnosis? Let me know! We’ll take it together…

…moment by moment.

March 5th, pt. II

Missed “March 5th, pt I”?  Read it here.

Something that is only too apparent to those who know me is that I’d FAR prefer a root canal to public speaking.  I don’t know why … my husband is the exact opposite … but public speaking petrifies me.

This was my biggest obstacle: speaking as Daryle had asked me to speak had to be done, but I really, really wasn’t looking forward to getting up and speaking in front of the whole church.  The date was set for Sunday, March 5, 2006 (trust me, this date IS significant … but also for a future blog), so I had a week or so to prepare my thoughts and come to term with my nerves.

The morning of Sunday the 5th, I was overwhelmed by God’s grace.  I was not alone in any possible way.  The entire elder board as well as my parents stood behind me as I spoke briefly.  Daryle had prefaced what I said with some thoughts on church support, encouragement, and most importantly accountability (this is a word that you, if you’re around me for any length of time, will hear me use a LOT).  After I spoke, they gathered around me and prayed for me, my precious daughter, and our church.

These few sentences seem to be way too short a description of that incredible morning.  It was a momentous day but, in truth, I remember very little of it.  It passed in a blur.  I recall impressions, like hearing my own voice, the heat of the lights on the stage, appreciating our college pastor’s hand on my arm while praying as I started to feel faint, the almost deathly quiet in the room, the absence of fear, feeling no condemnation.

God’s lavish grace and faithfulness through my church family was incredible.  Again, I was overwhelmed.  They gave me a baby shower … so many people and so many gifts … as I looked around my living room late that night (after the shower) and saw what I would learn in future was most of my baby’s first year of life completely provided for, all I could think of was Isaiah’s response to the Lord’s presence in Isaiah 6: he realized his own sinful heart in the presence of God’s holiness.  Yes, baby gifts are hardly holy, but God’s provision for the sake of His glory is.  I was humbled in such a beautiful way.

Why discuss in such detail the role my church played in these months?  My hope then – and now, even as I write this – is that my talking about what happened in my life and seeking accountability will encourage others to do the same and/or reach out to those around them in need.  We do need each other, and as my wise father often says, “Churches should be hospitals for sinners, not museums for saints.” 

“Make this your common practice: Confess your sins to each other and pray for each other so that you can live together whole and healed. The prayer of a person living right with God is something powerful to be reckoned with” (James 5:16-17—The Message).

I spoke publicly.  The issue was an issue no longer.  It was now a picture of God’s faithfulness.

The baby could be anticipated with joy.

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