cancer · family · grief · parenting · special needs parenting

The Price of Deeper Thoughts

It was on the wall in my mother’s bedroom, a poem written by her grandmother. I loved it as a child, even though I possessed only a superficial understanding of it at the time.

My great-grandmother was a gardener and a writer; I’d like to think we’d get along famously, as kindred spirits. I wonder if she had any idea what the words she put down on paper those years ago would mean to me.

The hot house flowers are beauties,

They have grown without a pain.

Somehow I’d like to set them out

And let them feel the rain.

With just a dash of wind in it,

Though t’would break a leaf or two.

I know they’d smell much sweeter

If they felt a Summer’s dew.

My daughter is a darling,

And of culture has her share,

But I hope some day to see her

Grieved enough to she’d a tear

For something she can never help

No matter how she tries.

T’would steal some joy, but deeper thoughts

Would peep from out her eyes.

I never got a chance to raise a hot house flower. I couldn’t have sheltered my children, because the storm came right into their home.

And when the winds raged and the storms came again and again, my hope against hope was in my great-grandmother’s words. That my one and only truly typical child would some day have those deeper thoughts peep from out her eyes. That building her strength in the storm would bring resilience and splendor that cannot be gained in any other fashion.

And I pushed back the fear that the torrent would destroy her.

She has had more than her share of joy stolen, but she is reaping the deeper thoughts. They aren’t always pleasant, and sometimes downright frightening, but they’re hard earned and stunning to behold.

cancer · grief

Yes Think, Certainly Pray, but Also DO!

It’s been eight years since Ben was diagnosed with cancer. Much of that time has become hazy in my recollection. Sleepless nights combined with fear and grief has blurred those days into a giant blob of yuck in my mind.

But what I do remember is crystal clear.

I remember every single person who ever stepped foot in his hospital room to visit us.

I remember every kind soul who knocked on our door with a meal.

I’ll never forget even those who took the time to mail a card.

Some people went above and beyond, like my husband’s co-worker who made us meals every week for months, or his cousin who made projects of eBaying memorabilia and sent us the proceeds, she did that for years. And she made it sound like we did her a favor by giving her such a fun and rewarding project.

The doers.

No matter how small or big, I remember the doers.

I know that many people prayed for us. I know that time was not wasted, that praying is valuable, precious even.

But the ones who took the next step and took the initiative to be a part of the answer to the prayers, they’re the ones God is using.

I have always been a procrastinator. I have stellar intentons and mediocre follow through, so I have let that ship sail more than once.

But follow through matters.

Follow through can be as simple as a text or email or as creative as making beaucoup bucks on eBay and sending it off in the mail.

It needn’t be a burden if you lack time or resources.

But if you really want someone to know that their suffering matters, take the next step. Think or pray, then do.

cancer

Dear Cancer

Dear Cancer,

It was 8 years ago today that you showed your ugly face to us in that decrepit hospital room. You had been ravaging our child for weeks before we found you out, and when you finally showed your despicable face we shuddered with despair.

We have long known you as a dirty-handed villain, we knew that you picked on babies, and hated the idea of you. Then you picked on our baby, and you went from a nameless, faceless boogeyman to our personal nemesis.

We were told that the only recourse was to go to war, and the battle began forthwith. Our son’s oncologist warned us of the cost, and how close the battle within would come to destroying your host, our child. In our haste to wreck destruction on you, we discounted those words, only to recall them when they so quickly came to fruition.

Yes, you almost stole my child, yes, you ravaged his body, his spirit and our whole family. You robbed him of more than we can itemize and there’s no recovering the loss.

You took him, and us, through shadowed valleys where every good thing was shrouded by your hideous, omnipresent veil. You pilfered our peace, joy, and hope. You took things you have no right to even touch.

Eight long years after you swept into our lives as a thief, we have repaired the gaping holes you left behind with patches lovingly crafted to cover the horrible gaps. We have used great diligence to restore the chaos you created.

Though we have repaired the outside, fortified our foundations and by most appearances we are whole, those scars remain.

Dear Cancer, as we close this letter it is with the resolve that we will not allow you to have any more plunder than what you’ve already taken. You will not reap bitterness, nor resentment; we will permit you not to perpetuate your ruination, you shall not taste the satisfaction of our rancour. Though the terror you wrought often threatens to creep in, we resolve that peace will win and fear will lose.

But we shan’t forget you. In your memory we will pay forward all manner of love, goodness, and Shalom. As a tribute we will share joy, peace and well-being; we will stand in solidarity with the many you continue to pillage.

Dear Cancer, we believe that Love wins, and we won’t allow you to take that from us too.

Sincerely, the fighters

cancer · special needs parenting

What is the Problem With Using Scripture Out of Context?

I posted this scripture to Facebook about 6 months into Ben’s treatment for leukemia, 7 years ago today.  I posted it to comfort myself.  Everything in our lives was being devoured by locusts, and I had to find some hope that there would someday be some recompense.  So I looked to scripture, and voila!  It’s in the Bible, God’s word, and I took the coincidence of finding that scripture on a day that it was something I desperately needed to hear, and embraced it.

Without considering context.

Today I looked up the whole passage, then looked up commentary on it.  Chagrined is a good word to use to describe how I’m feeling about now.  This chapter of scripture is written by a prophet.  What do prophets do?  They warn the Israelites when they have strayed from their end of the covenant made with God, and warn them to get back on track, then he reminds them of God’s promises for when they return to him.

This verse has nothing to do with childhood cancer, life after childhood cancer, or any kind of promise God is making to me as an individual who has endured suffering.  

I wish it was about me.  I wish it did work that way.  I loved reading scripture that way.  When scripture is read out of context with individual verses used as reassurances, promises, and warm fuzzies for our own lives, it feels good!

Until it doesn’t.

You see, I clung to verses like that.  I decided that God owed us one, or a few.

Between our family members, we have had more than a few locust eaten years.  Two back surgeries for Mike, neck surgery and GBS for me, and Ben has had only brief periods of his life, months out of his eleven years, in which he has been both physically and mentally well.  We parented our niece whose mother died of a heroin overdose, and lived out her heartbreak on a daily basis.

It’s easy to see why I would want to believe in a God who restores those years, but that’s not the only verse so commonly used that way.

The LORD your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will.  Zephaniah 3:17

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

Both of which are taken out of scriptures that were used to rebuke and remind the Isrealites, not for a mom desperate for a better future for her family.

And there are dozens more.

I put my hope in those promises that were never meant for my circumstances.  The end result was devastating.  I had myself convinced that when Ben finished his leukemia treatment that we would be rewarded for our faithfulness, not only in those years, but so many before, with restoration.  The devastation from the realization that he will be forever impacted by late effects of chemo and the other illnesses, both physical and mental, which make almost every day in his life an enormous challenge has been monumental.

In retrospect, I believe that my own, and many others, well-meaning use of scripture in this fashion is misguided at best, and could easily be considered sacrilege.  It’s an easy button for comfort.

It has to stop!

In my own experience, what would have been far more effective, kind, and beneficial, would be sitting with us in the pain.  Stepping into the gap and sharing the burden.  Instead of quoting scripture out of context, read the scripture, especially those red letters in the gospels, and apply it to your own life and be the gospel in action.

 

adoption · autism · cancer · Down syndrome · special needs parenting

Welcome to Holland? Or Welcome To The Amazon…

 

There’s a popular poem about the experience of parenting a child with a disability called “Welcome to Holland“.  It was an apt description of how I felt when we found out and processed the fact that Alex has Down syndrome.  However, I find it lacking for the more significant disability Ben has, so here is my own analogy:

When you walk through the woods near your home, you’re exploring. It’s fun, interesting, and exciting. While doing such things I have come across snakes (the Eastern Hognose variety), raccoons, unknown dogs (one who attacked my dog and me) and occasionally people I don’t know. Doing that exposes me to more variety and slightly elevates my danger from that of staying at home.  It’s a good, wholesome, fun, enjoyable, and completely normal thing to do.

That’s what having a typical child has been like for me.

When I visited Arizona I went for a run on a public property near the home of my in laws. There were cacti all over the place, and I made mental notes that snakes that I might encounter would be of a venomous type, and that even such things as ants, which in Michigan are fairly benign, could cause me real grief.  It was a bit more nerve wracking, a bit more exciting, and overall a great experience.  I recognized that I was outside of my comfort zone, but it was within a reasonable proximity of normal, and it was more of a mindset change than anything else.

That has been my experience parenting a child with Down syndrome. We took normal and kicked it up a notch.

The territory we unknowingly entered with Ben is more akin to an equatorial jungle. The vegetation is so dense that making headway is arduous, slow, daunting and barely manageable. The variety of the flora and fauna is stunning.  And terrifying.  It’s crucial to remain focused and attentive every second, even sleep is a luxury during which a certain vigilance must be maintained.  Specialized equipment is necessary to survive. Dangers lurk on every branch, flying, crawling, swimming.  A brief break from watchfulness could land you in a life or death situation.  It’s incredible it’s not for the faint of heart; only small populations live there, and tourists are few and far between.

This is life parenting a child with complex medical, developmental and mental health needs. It’s life on the edge.

We’re a highly specialized bunch, it’s adapt or die here, and adapt we do.  We develop skills and equipment to manage our extreme environment, always looking for the next breakthrough. We’re capable and savvy, though a bit more fierce than most civilized populations.

In the welcome to Holland poem, the comparison is Italy to Holland, but if you were planning a trip to Italy, imagine how woefully unprepared you would be in the jungle.  Even for us, planning another trip to Arizona, would be completely lacking in equipment and skills for the actual journey we’re on.

That’s where this analogy differs from the Holland analogy.  This isn’t a trip that we’re fairly well prepared for, this is being dropped into a place where we don’t have the knowledge, skillset or equipment to survive, we have to ad lib the whole thing; our only skillset is improvisation and the will to survive.

The most implausible part of it all is that we actually succeed at it; by sheer determination, fueled by passion and love.

cancer · parenting · special needs parenting

How The Gift Of Perspective Can Make You Grateful For The Crud

I’ve subsisted on NyQuil, DayQuil, Pepto and tiny bowls of Cheerios for a few days now. Every time I finish a bowl of said Cheerios I’m blessed with a quick little race…to the bathroom. I’ve never been a sprinter, but necessity can bring out the best in anyone. 

2 of my 3 kids have been on 2 different antibiotics in the past 2 weeks, and my husband is barely hanging on. 

The cold and flu season has been brutal to us this year. 

This is when I appreciate the gift of perspective. I tried to share it in a blog post here, and then on HuffPost, but the HuffPost commenters thought the piece misguided. 

I’m back from a different angle to give it another shot. It’s about perspective. 

From my current point of view, this sucks. I don’t like being sick, and it’s even worse when the whole family is suffering. We’re missing work and school and racking up doctor bills. 

However 

I realize just how normal this is, and I remember the terror of the cold and flu season when Benwas in leukemia treatment. That night we gave ibuprofen and Tylenol alternating to ride out a fever, he would have been unable to take either and would have gone to the emergency room as soon as his temp hit 101.5 axillary, possibly buying a few nights inpatient. I remember being sick while lying on a cold, hard cot in his room with alarms and night vitals and crummy coffee. 

And I know that with his insufficient immune system, and other medical issues it could happen again at any time, even without the rules for a cancer patient sending us there as soon as a fever hits a certain number. 

So here I sit. Flopped out in my chair, feeling like I was drug through a knothole backward, and being thankful to be home. Being thankful the antibiotics work. Being thankful we aren’t where we used to be, and thinking of the many, many people who are still on that path. 

Nope, we don’t have it so bad. We’ll make it through this, just like we’ve made it through many worse days. 

Perspective is a hard earned gift, and one I almost wish I didn’t have. But I do have it, and it makes me thankful for a fairly normal cold and flu season. 

cancer

World Cancer Day 2017, A Reflection and a Mission

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Today is World Cancer Day.  For us, cancer is a memory; next week Ben goes to Survivor Clinic.  Survivor Clinic two words that were but a dream 7 years ago.

How did we get from there to here?  With many people pushing, pulling and carrying us.

The doctors, nurses, aids, custodians, food service workers, pathologists, pharmacists, child life specialists, and many more people who work at the hospital, to imbue a toxic cure.

The scientists who transformed childhood leukemia from a death sentence to a long-ass haul of treatment and cure.

The family members (mom and dad, especially you) who walked so many steps on the path right along with us, from hearing the first diagnosis to last treatment day, and many in between, before and since.  Who prayed diligently, brought dozens of meals, gifts, and tangible support in so many forms.  The texts from afar from family checking in on us religiously.

The friends who helped us drive kids, let us dump them on you and also brought meals and help.

Medical insurance and Children’s Special Healthcare Services, offsetting what had to be millions of dollars in expenses, to make our bills manageable.

But mostly we’re here because of the resilience of a child.  A child who fought back.  A child whose thirst for life exceeded his body’s frailty.  A child who doesn’t ever give up, and kept us all laughing through it all.

There is so much more work to do.  There are many who don’t survive, many children.  There are many forms of cancer that fight back far harder than ALL.

Today I join the crowd, pushing, pulling and carrying others who are now walking that path.  Please walk with me, and make a donation to a cancer organization of your choice, in honor of Ben’s survival, in honor of your loved one, or in memory.  Let’s push back this darkness once and for all.