What in the World Am I Supposed to do with This Snow Day?

I think this is snow day number 5 or 6 for this school year, I’m not sure, it’s hard to keep track. I have to admit I’m torn between safety and schedule.  With my daughter driving now I am certainly relieved when she’s home in bed rather than out in the snow and ice, but at the same time, we’re all so discombobulated it’s hard to keep track of what day it is.

Alex got up and showered this morning and was getting dressed when we found out about his cancellation.  Hannah’s school called for a 2 hour delay, and Ben’s was still wide open.  I had an 8 am appointment, so Mike and I were verbally juggling all the duties this would throw into chaos.

Next thing we know Ben gets a 2 hour delay, Hannah gets closed, and then last but not least, Ben closed for the day.

Good grief, a series of 5 phone notifications as well as me calling the bus garage and texting drivers.

Not to mention the second day in a row of me rearranging my whole schedule.

I was a few steps beyond flustered this morning with all the kerfuffle, then I saw this on one of my friend’s Facebook timeline.

It happened Tuesday.  It didn’t make the news outlets, but it happened in my county.

Two days in a row of inconvenience and frustration.  This morning was a 2 hour, non-stop series of annoying events, but my kids are safe.  Their bus is in the garage rather than rolled over, and frankly, I might be better off not driving to my 8 am appointment today anyway.


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


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. 


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.