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.

 

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.

cancer · parenting · special needs parenting

My Complete Thanks To The Many, Fabulous Nurses

Last week I took Ben to Nationwide Children’s Hospital.  He had a tube inserted into his nose and down into his stomach and small intestine to measure how his stomach and small intestine worked.  tube inserted into his nose and down into his stomach and small intestine to measure how his stomach and small intestine worked.    The test sucked.  What didn’t suck were the nurses.

In Ben’s nearly 11 years, he has needed countless medical interventions, but one common denominator exists among them.  Fabulous Nurses.

From floor nurses to clinic nurses to surgical nurses and procedure nurses to office nurses and home health nurses, Ben has been cared for by some of the best.

My complete thanks goes out to them.  They are indeed some of the most remarkable people I have had the privilege of knowing.  They have been teachers, showing me how to give Ben chemotherapy at home, proper post operative care, and numerous tips and tricks to make our lives easier.  They have been confidants, listening to our hopes and fears.  They have given empathy, hope, love, humor, and practical help.

Nurses are the first line of care, the go-between advocating for the patient with the doctor, and the eyes that see the moment by moment care that needs to take place.  They have physical, mental, and emotional stamina, and multitasking superpowers.

Nurses are the glue that holds the healthcare environment together, they are the foundation upon which medical conglomerates are built.

My child’s life has been greatly enhanced by the nurses that have cared for him, body, mind, and spirit, for his whole life.  To them I give my gratitude and love.

cancer · parenting · special needs parenting

What is that?  A light at the end of the tunnel?

It has been a productive January with more on the way. We got Ben a new psychiatrist and so far he seems more stable. We got preliminary approval for him to start ABA therapy with a new provider, and next week he has his long awaited appointment at Nationwide Children’s Hospital to see if there’s anything more we can do to manage his vomiting, which is actually under better control than it ever has been since his June hospitalization (with ample room left for improvement). 

It seems that everything is coming up roses. Many puzzle pieces long missing have turned up, and I am eager to get them into place. 

Eager with a side of consternation, that is. You see, Ben’s puzzle is a slippery bugger.  Every time I catch a glimpse of real progress there’s a sinkhole forming over yonder that catches me by surprise by falling apart. 

After failing to thrive and getting his Hirschsprung’s diagnosis he had corrective surgery, and just when he started growing and progressing Cyclical Vomiting Syndrome came up. 

We got that managed and he did well and wound up with leukemia a year later. 

After 3.5 years of treatment the anticipation of improved health was palpable, but several surgeries, significant mental health and autism diagnosis, a massive medical side effect causing rapidly progressing Parkinsonism, then back to square one with mental health management, another surgery, and a revisit from CVS later, it’s becoming hard to believe that his puzzle will actually come together. 

As I wrote in a post called “Foreboding Joy“, it’s pretty difficult to avoid living like the other shoe is going to drop at any moment.  I want to be excited, I want to hope, but experience is a good teacher, so I hold my breath. 

Still, I can’t help but wonder if maybe this time it will work. Maybe Ben will feel really good, get mental health and behavioral management, and finally be able to enjoy his life. Maybe we will finally enter a parenting stage where our role will somewhat resemble other parents rather than a combination of healthcare providers, caregivers and behavioral strategists. 

The notion is delicious beyond imagining. 

Little Ben has captured my whole heart. My love for him is 100% action verb. I adore the little stinker. I long to toss a few of my hats off and be just Ben’s momma  (or maybe just shrink them and wear my big ole momma hat front and center, being realistic).  But oh, my heart!  To have my primary focus on Ben to be being momma!  I can hardly stand it, my heart aches so hard for that!

The story of parenting Ben is “Hope Deferred”, because our family is a tree of life that has inexplicably grown in spite of unfulfilled longing and heart sickness. 

This weekend Alex played with Ben. Happily, willingly. We laughed hard together and had normal family fun(despite momma feeling crummy). Normal family fun. Laughing together. 

I had almost forgotten what that was like.  

I want to remember. I want to live there instead of just visiting. 

In 2012 I started the year fasting and praying for wholeness, healing and health.  We laid hands on Ben to ask for God to be with him in a tangible way. It wound up being the worst year in our rather dismal family history (Or darn close, depending on the criteria used, there are others that were startlingly craptastic as well, but ’12 took the candle for physical health).  

Maybe for the first time in a few years I see a light at the end of a tunnel. Dear Lord, please don’t let this one be a freight train. 

“Then it comes to be that the soothing light at the end of your tunnel. Is just a freight train coming your way.” ~Metallica, No Leaf Clover (aka the Mshar family theme song).

cancer · parenting · special needs parenting

High Need Parenting and The Hierarchy of Needs

maslowpyramid

My thought train runs wild from time to time, and today I puzzled over the hierarchy of needs, developed by Maslow, which I learned about in high school psychology.  My thoughts were more like pop ups, the biggest conundrum being about how people like me, who care for children whose needs often trump our own, can pursue personal development and self-care, and the obstacles we must overcome in so doing.  Yet, many of the parents whose children have complex developmental and/or medical needs are some of the most self-actualized people I have the privilege of knowing.

How is this so?

According to the diagram, we should be stuck in the lower levels, with concerns about such things as sleep, safety and health being all we have energy to pursue.  Often, we become isolated, missing out on a sense of love and belonging, but yet, despite the obvious deficits in the lower levels, many of us are diligent about exercise, healthy diet, self-care, and are actively engaged in self-esteem and self-actualization levels.

It doesn’t make sense.

When you lack sleep, fear for the well-being of a family member, and struggle with employment and socialization because of your life situation, how do you focus on confidence, acheivement, morality, creativity, and inner potential?

Yet people are doing it.  Many of us.

Are we an exception to the rule, or does a certain amount of moderate, ongoing crisis lend itself to a resilience and persistence that promotes self-development?

I believe the latter.

This is all based on subjective observation, anecdotal evidence, if you will, which is essentially bunk in the scientific world.  Yet, I’m inclined to believe that we’ve entered a new evolutionary stage.  We have, in just the last hundred or so years, advanced to the point where we can keep children born with significant medical diagnoses alive for longer than we ever have before.  We are a new breed of parents in the grand scheme of things, parents that history and psychology has not had significant time to study and understand.

And I wonder if there is something about complex medical or developmental parenting that brings out the best in people.

If you met me friends who parent these children, I am certain you would agree.

 

 

 

cancer · parenting · special needs parenting

Dear Parents of Sick Healthy Kids

If you are the parent of a healthy child, I want to talk to you a minute, if you care to listen.  I hope to let you try on my shoes a minute, because I always feel like we’re always talking past each other. 

I want you to understand. I get it. I remember being scared shitless when Hannah was little and had a high fever. I remember running her to urgent care for a virus, certain something was dreadfully wrong. I know the angst of parenting a little one during cold and flu season when they aren’t well. It feels like it’s never going to end, you’re tired and scared, it’s awful. It’s natural to be frustrated, upset and to complain. It feels like an eternity since you got a good night sleep, since you have felt clean and left the house. There’s no end in sight and you are just done.  I have been there, done that.  I want you to understand that I’ve lived in those shoes. 

Now I want you to just imagine mine. 

That trip to the doctor?  It turned into a trip to the ER, and a hospital admission. That hospital admission, it lasted over a week. Instead of riding out a fever, we rode out hospitalizations with tests, alarms, vital checks every 4 hours, and vinyl cots for night after night. 

Not just once, not just 2 or 3 times; we’ve actually lost track of the number of times we have experienced that. 

That’s enough. Believe me. But it isn’t all. 

There are the also the life-altering diagnoses. Getting the news that your child isn’t just sick, the sickness is life-threatening. Or the disease isn’t something that will run it’s course, but it will impact every day for the rest of your child’s life. 

Years of my child’s life have been altered by illness. Years of my parenting has been in that headachy haze of chronic sleeplessness that comes with parenting an acutely ill child. 

Years. 

I tell you this not as a guilt trip or to shame you for feeling spent while caring for your sick child, but because I feel like you forget that how much and how long we have lived in that dreadful zone. I just want you to have perspective. 

On that night when your little one is thrashing with a fever and you’re covered in vomit, think of the families whose kids have chronic insomnia or chronic vomiting…or both. 

When you’re are flustered trying to decide if you need to run to the med center for a fever, remember that some families don’t have a choice, the child has to go to ER for every single fever. 

Your kid is a monster because he’s on steroids for croup? Some kids endure dozens of courses of steroids. Or more. 

The medical bills take you by surprise with the extraordinary cost of care, don’t they?  

I’m not asking you to get big girl panties, to suck it up, or even revoke your right to whine and complain, because I get it. It is hard. 

I just want you to understand that there are those of us who live months and even years of those days.   Please just remember us. Please. 

We’ve long since given up complaining about it. We often try to make light of it, but it’s doggone hard.