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

parenting · special needs parenting

What a Load of Should

“What are you doing for you?” It was Ben’s caseworker checking in.

I cried.

I was ashamed.

I didn’t have an answer. I know I should be taking care of myself, but…it just seems like one more item on an overwhelming to-do list.

Sometimes, lately at least, taking care of myself feels like a burden.

It means something else doesn’t get done.

It means that the piece of me that I had earmarked for someone or something else has to be set aside.

It means one more thing to squeeze into my day.

It means guilt because I have put myself aside.

Can I win?

If I do this instead of that, am I really better off?

….

I have long advocated for self-care, but truth be told, self-care is the first thing to fly out the window when stuff gets chaotic…and chaotic happens a lot around here.

Instead of doing something for myself I stuff a couple of cookies in my face.

Instead of doing something for myself I sit on the toilet for an extra 57 seconds to scan my phone.

Instead of bothering to try, and just get interrupted, I skip doing something just for me for days at a time. Sometimes weeks.

….

Funny, it didn’t bother me until she mentioned it.

So

I spread this load of should all over the place, and that makes everything, and I do mean everything worse.

….

But maybe I can back that train up.

If I can’t squeeze in something to do for myself, can I manage some self compassion?

Kristen Neff (I haven’t read her book, but she defined self-compassion, which absolutely deserves a shout-out!) identified 3 parts of self-compassion; self-kindness, common humanity, and mindfulness.

In other words, do unto yourself as you would do to others…

Whoa…

If I look at my situation through a lens of self-compassion, my shoulds magically clean themselves up.

The guilt I felt over my failure to make time for myself abates a bit. The burden of trying to be all things to all people lightens when viewed in light of my humanity, with some self-kindness and a dash of mindfulness.

If a friend of mine spilled her guts and they looked about like mine do right now, wouldn’t I tell her she’s enough? That it’s okay to put herself aside, as long as it isn’t for too long? I’d probably suggest that she seize any opportunity that arose to relax and enjoy some quiet, but until then… I would assure her that she’s going to be okay.

Because she will.

family · Uncategorized

The Mshar Family Christmas Letter

2017 has brought many changes for the Mshar family, though much remains the same. Early in the year Mike and Lee decided that he should throw his Conservation Officer Hat into the ring for a promotion. He applied for and accepted a Sergeant position which means now he can officially tell people what to do (instead of just for fun like usual). The promotion meant moving up north into the exact middle of nowhere, also known as Lewiston.

Upon accepting the position, the house hunt began, and we found the perfect recluse special and made our move. The whole family arrived up north after Hannah graduated from high school and had the world’s tiniest grad party.

Speaking of Hannah, she’s taking online courses as an English major, with the intention of moving overseas to teach English as a foreign language, hopefully in Asia. Yes, I get the irony of her studying at home with the goal of moving overseas, but if you know Hannah, it actually makes sense. She’s even been letting Lee teach her homemaker skills with an exceptional ability to keep her eyerolls camouflaged. She spends her time hiking, x-country skiing, Netflix binging and jumping into projects with her parents.

Alex has adjusted well to his new home and school. He is working on developing his singing voice, which is something he faithfully practices every day. Though he sings with heart and gusto, he will be continuing his education in anything other than vocal music for the benefit of music listeners everywhere. He is fueled by coffee these days, and is growing his hair out with the lofty goal of being able to flip it back when he flicks his head just right.

Ben is still strengthening his determination and will, which is quite impressive. I expect any day now to see him actually moving objects with his mind by sheer force of desire, much like a Jedi. Our primary goal is to keep him using the good side of the force. He enjoys any rough and tumble activity, being in charge, sliding down the stairs on his butt or belly, and Hot Wheels Cars.

Lee has been busy pretending she’s in the book “Little House on the Prairie” and dabbling in any number of quaint homemaking hobbies like gardening, breadmaking and playing with the fires in the fireplaces. She prefers to do these things while texting her family, blogging and Facebooking, thus blowing the prairie image. Although Caroline Ingalls would have rocked the hoodie dress and leggings look that Lee loves.

Mike has completed roughly 1,683,270 projects since moving here. (Oops, add 3 more during this writing). He is in his glory any day that he can use his tractor, and has even mown about 3 miles of trails through 10 acres of woods while leaving the woods largely intact. He comes inside mostly to eat, sleep and watch football, which is why Lee spends so much time cooking (it’s a lure). We’re pretty sure he’s happy, he always seems to be smiling when he drives off on the tractor.

Abbi fearlessly protects the house from all feathered beasts as her sworn duty. Her duty is more serious these days as the feathered fiends are more numerous and many are quite large, but never fear, she has established her patrol area and singlehandedly manages her duties with aplomb. She takes Lee and Hannah out for hikes to ensure her perimeter is secure, and occasionally gets a serious hunt in with Mike. She has a data log on all small mammal activity as seen from the upstairs bedroom window from the comfort of the bed she’s forced to share with Mike and Lee.

Meg’s interests include laps, blankeys and pestering Abbi. She manages to carry the appeal of a puppy well into her second year, and though she’s spoiled rotten, she has been known to earn her tough and tiny trophy by taking hikes through the woods, roughly the equivalent of 20 Meg miles on her 3 inch legs. Her 12 pound weight earns her the status of Tweeny dog, AKA a miniature dachshund, but she seems quite unaware of her diminutive size as she protects her girls (Hannah and Lee) with the demeanor of a Doberman.

We added a perfectly wonderful grandchild, Brailyn, to our family in January, by our oldest child, Chelsea. In August Chelsea passed away. Our hearts are filled with a strange commingling of joy and grief over the gain and loss we have experienced, but we adore Brailyn who is a delightful, beautiful baby.

May you enjoy shalom (peace, good health, prosperity, rest and harmony) and invest in the shalom of others.

With Love, The Mshars

P.S. I know the paragraphs about the dogs are the longest.

Aphantasia

Everyday Life Without Any Visualization

I’ve written before about Aphantasia, the condition of lacking a mind’s eye or ability to visualize.

For me, having Aphantasia means any number of things, but since I was unaware of the dichotomy between me and most people until I paid attention to my daughter, who has more acute visualization than average, I’ve never felt like I was missing out on much until I realized that this inability is actually a thing and is now described by science. Reading about and connecting with others who experience life without visualization has granted me better understanding of myself, and the pros and cons of having no mind’s eye.

After working for years as a paramedic, I saw numerous gruesome scenes. Never once have I flashed back on one of them, no matter how traumatic they were, because I’m incapable of flashbacks. I remember them, and returning to the scene can be emotional (driving by accident locations, or a rest area where a violent injury occurred for example), but though I can describe what I saw, I cannot picture it at all.

In daily life I don’t miss visualization, I have a running narrative constantly going in my head, and as a primarily auditory person, I focus on sounds far more than sights anyway. I lack a frame of reference for going through life with mental pictures, and it’s hard to miss what you’ve never had.

What I would enjoy, though, is being able to remember the faces of departed loved ones. I can remember details like eye color and face shape, but having an image come to mind sounds so lovely. At best I can bring up a vague phantom of a silhouette which immediately dissipates. Such as below.

My dreams are hazy and largely experiential with the running narrative which is the constant background to my waking mind. Any imagery involved is scant and indistinct.

But truly, as far as variations in the human experience go, this is just being at one end of a spectrum of ability. Other than finding visualization exercises tedious and fruitless and a complete failure to be hypnotized at my high school graduate party, I’m not actually missing out.

grief · Uncategorized

What You See (And What You Don’t)

What you see is me being strong.

What you don’t see are all the times I’m so very weak.

What you see is me smiling.

What you don’t see is the pain creasing the corner of the smile.

What you hear is my laugh.

What you don’t hear is the effort it takes to produce the laugh.

What you see is me looking perfectly normal.

What you don’t see is the giant hole in my heart.

What you see is my stoicism.

What you don’t see is my vulnerability.

What you see is how well I’m coping.

What you don’t see is the enormous effort it takes to do it.

What you see is that grief seems to have come and gone.

What you don’t see is how I just don’t want to burden you with it.

What you can see is taking everything I have. It seems like I’m supposed to pick up and move on, so I put on the show and do my best, but it’s a thin veneer. Life only pauses briefly for grief, then it zooms ahead at normal speed, forcing the griever to keep up.

Often it’s easier that way. I feel like I’m staying ahead of it when I keep moving, but it’s right there on my back all along, just waiting for me to remember the weight of it. And when I notice it it crushes me.

So if I seem a little edgy, a little quiet, or have a hard time coming out of my shell, I need you to remember this: I’m not trying to be difficult; in fact I’d much rather just be my normal self again. Truth is I barely remember how to be her right now, and I’m afraid she’s never coming back, which makes this even harder.

Please don’t hold it against me, I’m doing my very best.

advocacy · parenting · special needs parenting

7 Big Truths About Special Needs Parents

Every week or so my messenger app dings with a message from someone reaching out. Often it’s a question; someone looking for input or encouragement, asking advice or giving any of the above. Sometimes it’s a local friend, often strangers find me via Google or an article and seek me out.

No matter who it is or what the reasoning, I welcome it.

I’ve noticed a few things as well. Though I’m reluctant to generalize, there are some threads common to many of these families.

  1. We’re dedicated. Whether it’s helping a child with ADHD or dyslexia succeed in a general classroom, finding a niche for a child with Asperger’s (yes, I know it’s technically not called that anymore) who is gifted, making plans for a child with a complex medical diagnosis or finding the right fit for someone with a developmental disability; families are bound and determined to do right by their kids.
  2. The resources aren’t readily available. This many years after IDEA and ABLE, it’s still hard to find and create resources for people who need any services or aids outside the norm.
  3. We’re tired. We struggle to find child care or respite, we spend untold hours driving to and attending appointments and meetings, we often are years or even decades behind on sleep, and we’re often trying to brainstorm, troubleshoot and solve behaviors.
  4. We’re broke. Between copays, deductibles, and gas, our money flies out of the bank account with extraordinary speed, and it’s not from being irresponsible. In fact we often feel guilty for small indulgences that many people take for granted because we know that the $2 we dropped on coffee is $2 less we can pay on bills.
  5. Despite all that we’re usually grateful. We realize that the services we can access for our kids are unprecidented, and though we struggle to make it all work, we do so gladly!
  6. We’re an unparalleled network. We find each other, we support each other, we advocate together and encourage each other. It’s a worldwide commune where people gladly share anything they have, eager to help one another out.
  7. We have a vision. It starts with our desire to make the world a better place for our children, and a recognition that our children make the world a better place. And we’ll go to the end of the world to bring it to fruition.

What would you add?