What NOT to say and what TO say

It was just before Christmas and my son was in the hospital for a suspected virus. There was a gift bazaar being held in a conference room of the hospital by a local church so that all the kids who were hospitalized at Christmas time could pick gifts for their family members and have them wrapped. I stood in the wrapping line and struck up a conversation with the woman next to me. We swapped stories of why our children were in the hospital. She told me that her daughter was a cancer patient and that she had been in the hospital three weeks out of every month since spring.

I gasped, “Oh my gosh, that’s awful, I’m so sorry!”

As soon as the words left my lips I wished I could take them back. The woman looked stricken. I realized too late that my dramatic reaction was like an assault to her. In a bitter irony, not even a month later it was my child on the oncology floor fighting cancer. I learned then a whole list of well meaning phrases that don’t always sit well with parents of sick kids.

Here are some of the phrases that struck a nerve:

  • God won’t give you more than you can handle
  • This too shall pass
  • You’re so strong
  • I could never do what you’re doing
  • My cousin (or aunt or other distant relative) had that same thing
  • I know how you feel
  • He’s so lucky to have you as his parents
  • Is this terminal?
  • I’m worried about you
  • You look tired
  • Have you tried essential oils (or marijuana or alternative medicine)

What to say instead:

  • Do you want company?
  • Could I bring you coffee or a snack?
  • I can give you a break if you need a nap
  • I can listen if you want to talk, but you don’t have to if you don’t want to
  • What can I pray for?
  • We care about you all
  • Can I bring you a meal?
  • I can help with _______ (be specific)

It’s easy to stick your foot in your mouth and say the wrong thing, so don’t beat yourself up if you don’t get it right. The really important thing is to be there for them and give support throughout the duration of the illness.

For more on this, the book, “What Can I Do To Help?” Can answer all your questions!


You Know You Want To See Me on a Magazine

I’ve done it before and dropped the ball before I really got into the running, but this time, one last time (I promise), I am shooting for the cover of Runner’s World Magazine. 

If you’re looking for more back story, check out this other post for the dirty deets. 

This is about more than getting on the cover of a magazine, (though that would be cool), this is about exposure for Guillain-barré Syndrome, and for inspiring people to keep trying even when it’s hard.

It’s maybe easier for me, I have a natural tendency toward resilience and tenacity, so I can’t imagine not doing everything in my power to get back to strength and vitality. But that doesn’t come naturally to everyone, so if my story impacts one person who otherwise might find it too hard to keep trying, then it’s all worthwhile.

So vote, share, repeat, for the next 52 days. Because you’re awesome like that.


The Nice Girl’s Response to a Viral Post

Every blogger secretly (or not so secretly) dreams of the day she gets a viral post.

I blog for The Mighty, and some of my posts have gotten a fair amount of attention, and a few have been reposted on various other pages.  The primary readers of The Mighty and the pages that pick up their posts are people with disabilities and illnesses, so when one of my Mighty posts gets attention it’s all about validation and love. I could move into that space and make a cozy little home where my introverted self could soak up the online attention in solitude for hours.

But I ventured out of my comfort zone, and wrote and “open letter” on my HuffPost blog.  I’ll let you read it for yourself.

Back now? Good.

As you can tell, I took the time to process the situation and write about it from an understanding and fun perspective, rather than a soapbox.  This was a deliberate choice because I am a nice girl.   

So as my piece for HuffPost made it’s way across the interweb, I turned on notifications, and became ever so slightly obsessive about checking them.  I might have clicked on every new comment for an embarrassing amount of time. 

But I was jarred back to reality and brutally reminded some people aren’t nice. 

Some people responded only to the title, clearly not reading the piece. Others read the piece just mining that one line they could claim righteous indignation over, and though I was intentional to leave those out, when people want them, they find them.

So, I decided to be helpful and reword things in a way they could really understand.  You know, because the whole reason I wrote the post in the first place was to engender understanding.  But there are some people who just want to be awful, no matter how hard you try to communicate clearly, using an engaging tone, and friendly terms. 

You see, some people don’t want to be nice. Really.

Maybe I am naive, maybe just hopelessly idealistic, but I really want to live in a world where people at least try to be nice. 

I turned off my notifications and went out and puttered around in my garden. There’s a pretty significant part of me that would like to hole up and just let the world go to hell in a hand basket.  But instead I will fix my mind on the people who received my offering and reciprocated in kind.  

I will write my heart out to them. I will write my heart out for my kids and for families like ours.  I will write and hope that others will join me and share their voices, whether it’s by writing or singing or making art or in any way being a source of peace and light in a chaotic world. Because if enough lights come together the darkness cannot survive. 


I Survived to Run Again

Common sense would dictate that a slow, awkward 42 year old woman would be best off minding her own business, taking a nice stroll through the neighborhood a few times a week for good measure, and avoiding overexertion. Well, your first mistake would be assuming that common sense dictates my actions.

I digress.This part of my story started just over 6 years ago.  2010 was a grueling year in the Mshar home.  On New Year’s Eve, 2009, my son, Benjamin, was diagnosed with Acute Lymphoblastic leukemia (ALL).  We started 2010 in a haze, knowing that for the next 3.5 years leukemia treatment would be foundational to everything we did.  For a boy with ALL, the treatment runs 3 years, 4 months, no ifs, ands or buts.  This treatment is almost entirely outpatient, but consists of multiple chemotherapies, and many, many spinal taps. The first 9 months is the most intense.

About 8 months into Ben’s treatment, I realized that I had been sitting at home with a sick child and little to do.  My only outings had been oncology clinic visits.  And it showed.

I have never been one to struggle with my weight, I run on the lean side, but by mid year 2010, I was heavier than I cared to be.  I decided to make some changes, and ended up starting P90X.  The results of that program were wonderful, so I continued working out, and started the Insanity program Thanksgiving day, 2010.  Somewhere along the line, I also joined an online workout group run by a personal trainer friend of mine.In early 2011, this personal trainer told me to run.  I tried to explain that I am not a runner.  She pointed out legs and feet, and stated that being human, I am indeed a runner, and it was high time that I started.

I did start running, and quickly found out that I run best barefoot.  I spent much of 2011 running barefoot on trails, in absolute bliss.  Indeed, I was a runner.

I made a bold move, and that fall I signed up for a half marathon.  It was my second race ever.The week before the race, Benjamin got a stomach bug, which he passed to me.  I fought diarrhea all week, but was determined to put my best foot forward that Sunday morning.

The race was awful.  I finished, but barely.  I drug myself over the finish line after a ridiculously long time.  But doggone it, I finished.

As time went on, Benjamin’s diarrhea didn’t get better, and we discovered that he had a resistant form of a bacteria known as Campylobacter.  This bacteria can be foodborne, and generally is easy to kick, but not for Benjamin’s chemo-worn body. He fought the Campylobacter for several months.  During that time, I started feeling poorly, and struggled to run at all.

As the winter wore on, I was diagnosed with mono, as well as thyroid failure. I slowly began to recover, and as spring arrived, I started running again.Then, on Mother’s Day morning, 2012, I was sitting in church.  My feet kept feeling tingly, like they were just barely asleep, no matter how many times I changed positions.This sensation continued and spread.  Soon my hands were tingling, and I found that I was struggling to control my bladder, and oh, so very weak.

When this problem persisted a few weeks, I finally gave up and went to my doctor, who quickly referred me to a neurologist.  I spent the summer of 2012 going through multiple medical tests, and in mid-summer, was diagnosed with Guillain Barre Syndrome.  The Campylobacter which I had contracted in late 2011 had turned my immune system against my nervous system.

By the time of diagnosis, I had grown accustomed to being weak and febile. Yet I still persisted in being as active as I possibly could, which most days was only stretching. The diagnosis came too late for any interventions to speed my recovery, so time was my only friend.

At this point I doubted I would ever run again.

Yet, I kept trying.  I went for walks and did yoga, and every once in awhile, I would actually be able to run just enough to give me hope.  I held tight to that hope, unwilling to believe that my running days were done for good.

Then in spring of 2014, it finally happened.  I ran, and ran again, and again.  I ran a quarter mile, then a half then one mile, and then farther and longer.  The elation I felt was indescribable. 

I am once again a runner.  I started out slow, oh, so dreadfully slow.  Yet week by week, mile by mile, I get just the tiniest bit faster and more fit.  I experience many setbacks and disappointments, yet I persist.

I won’t ever be fast, but I won’t give up, at least not without a fight. 

I know that many GBS survivors don’t fare as well as I have, but if one person reads my story and is inspired to try, then I will be a happy woman.
If you made it through this and like it, please hop on over and vote for me to be on the cover of Runner’s World Magazine please. 


Today I am tired

Today I am tired:  I’m tired of meetings and doctors and decisions; tired of meltdowns and sickness and sleeplessness.  I am so very tired.

I am tired of advocating, of being different, of medical and developmental jargon.

Today I wonder what “normal” would be like:  how it would be to go to soccer games instead of Special Olympics; how it would be if my boys  had neighborhood friends. 

I wonder if we’ll ever have a month without five or six doctor’s appointments; if we will ever not have a bin full of meds to dole out every day.

Today I hurt.  I hurt for the child I have to hold down when it takes three pokes to draw blood; for the child with surgery scars all over his body. 

I hurt for the child who doesn’t get playdates; who has never been invited to a birthday party.

Tomorrow I will find my joy, and revive my smile.  Tomorrow I’ll put my big girl panties and supermom cape back on, with an upbeat attitude and happy heart as usual.  

But today I am tired; I wonder; I  hurt.


I am so that mom

I will walk past a basket of clean laundry for four days before I sit down to fold it.  Of course that’s after waiting until the hamper is overflowing and stuffing the high capacity machine to the brim because I walked past the dirty laundry all week. 

I wait to vacuum until I can have the satisfaction of seeing the debris on the floor sucked up into the cleaner and hear the larger particles rattle up the tubes. If I can walk through the house without crumbs sticking to my socks the vacuum doesn’t come out. 

I dust only after I can write poetry in the light specks on the dresser, and when I do it’s usually with the dirty shirt on top of the hamper in a rush to get rid of the shameful snow that has accumulated.

I am the mom who lets my youngest have cottage cheese, two pieces of pizza, a bowl of cereal and a cookie for breakfast.  

On rainy, sick or otherwise crummy days I can veg behind my tablet or phone for prolonged periods whilst my kids do the same.

I mop my kitchen floor only after something sticky spills on it, which means it’s actually the cleanest area of my house.

When given a choice between domestic duties or running, gardening, or farting around I will always chose the latter, often to my own detriment.

I am that mom.  I tend toward laziness and half-assery.  I work in bursts, and only as much as necessary.  I accomplish the necessary, and leave the for another day…or week. My house is never actually gross, at least not for long, but it’s never quite clean either.  

I’d like to say it’s because of the demands of parenting, because I prioritize my kids, and that’s somewhat true, but I suspect that once the kids are no longer in need of my constant attention I still won’t be in the running for good housekeeping awards. 

I am that mom. That mom that gets by.  The one whose house can sometimes be embarrassing when visitors come by unannounced.   The one who shoves the laundry basket into the corner so I don’t feel as guilty walking around it for the 37th time this week. It’s not the housework is beneath me, it’s that in a perfect world it should be beneath me.  At least I would like to believe that.

But I’m over feeling guilty about it. Life is hard enough without adhering to random standards that you don’t truly value and allowing them to disrupt your peace. 

So I’ll be that mom.  I’ll name it and claim it. I’m the head honcho of half-assery and that’s not going to change.  So suck it housekeeping standards and mom guilt. I’m fine as is. 


Holding Space

The term, “holding space”, is a new one to me, but it fleshes out a concept which I have tried to isolate for some time.

Heather Plett say this, “Holding space means that we are willing to walk alongside someone in their journey, without judging them, without making them feel inferior, or trying to fix them. When we hold space for someone we offer unconditional support and let go of judgement and control.”

I tend to hold space for others by my very nature. Even before I had a concise term for it, holding space has been a deeply held value of mine.  Though it’s not considered a traditional love language, holding space is the primary in which I give and receive love. As such I find it puzzling and hurtful when others respond in judgement or criticism, both toward myself and others. Holding space comes naturally to me, but right along with it goes taking the opinions of others personally.

I am brutally susceptible to criticism. A harsh word said in passing can reverberate in my mind for days.

I have cogitated on the quote above for a couple if years now. It’s something that doesn’t come naturally to me, but it is an area of personal development which I have become purposeful in pursuing.

I have internalized the projection of others’ reality and brought upon myself a lifetime of needless suffering.

I am learning to hold space for myself, to buffer myself from the opinions and actions of others, and to use my primary expression of love as a form of self care. When that harsh word comes my way I am choosing to consider the hurt of the person who said it instead of absorbing the hurt into myself, and unless I am responsible for speakers’ hurt, I practice laying the word into my mental stream and allow it to float away rather than rob me of my peace.

I’m learning.