advocacy · Down syndrome · Uncategorized

Down Syndrome Awareness is Not Just For Little Ones

When my son Alex was first born, I felt compelled to make sure everyone in our lives knew just how precious he was. I enjoyed great success, but in retrospect, Alex made it easy. Babies with Down syndrome are often adorable, and Alex was no exception. He made my advocacy job easy, and after awhile, considering my success, I relaxed a bit on the advocacy. There were IEP meetings, and plenty of parenting tasks to take up my time, so campaigning for the acceptance he already enjoyed seemed somewhat superfluous.

Fast forward 16 years, and Alex has hairy legs and armpits, a deep voice, and is almost my height. As any mother does, I still think he’s the most spectacular child in the world, and as cute as ever. However, when you add in significant speech and social skills delays, compounded by the already interesting early teen phase, he often doesn’t get the warm public reception he once did.

But as Alex’s mom, I want to tell you that he is the most thoughtful young man I know. Every single day he asks young man I know. Every single day he asks me how my day was, and even actually listens to my answer. He loves nothing more than cooking, except eating, and will cheerfully lend a hand to anyone who asks.

Alex is a gamer extraordinaire, and can beat just about everyone he knows in almost any game. He can throw an awesome spiral with a football, and hit a home run in baseball. (He gets his athleticism from his father, not me.)

Alex deserves awareness too, just as much as the older teens and adults do. People with Down syndrome are diverse, interesting and valuable as members of our communities. They have desires and interests, and live full, active, productive lives. More and more they are branching out into careers as actors, models, business owners, and contributing their considerable gifts the the communities where they reside, and their communities are better for it.

Uncategorized

Dear Suckmeisters and Jerks, I Am Talking to You

I brought Ben to the doctor for the second time this week. The first time he wasn’t quite sick enough for long enough. The second time, this morning, he had an ear infection, sinus infection and probably strep, but we didn’t swab his throat because the treatment would be the same regardless of the result.

When we got to the doctor, we parked close to the door, and as we walked side by side up the walk a woman brushed past us. Upon catching up to her at the door, she hustled up to the desk of the first come, first served walk in clinic.

Sigh.

She had symptoms of influenza and leaned on the desk to complete the paperwork, which took several minutes because she had gotten married and changed jobs. She coughed all over the check in desk the whole time.

I had my own pen out and jotted Ben’s name on the sign in sheet without resting my hands or arms on the desk and sanitized as soon as I was done.

For the record, our check in took less than 30 seconds.

It’s not actually a big deal I suppose, that this woman set us back a few minutes, unless, of course, she left some airborne influenza hanging around for us to bring home. But I’m annoyed, and though I told myself to just get over it, since she might have had a reason for her behavior or a bad day (besides the reason she was there), of which I was unaware.

But the fact remains that she was rude.

And if it costs us a case of influenza, much more than just rude.

When you’re an intentionally polite person, it can feel like your kindness exists in a vacuum. I go through life trying to put others first by being thoughtful and courteous at every possible occasion, but there are days, like when I’m tired from caring for my sick little dude and concerned about his wellness, that my reserves run low. It’s at those times when the thoughtfulness of others is especially appreciated, and the lack thereof especially apparent.

The kindness in the world needs to be recognized and amplified, and by and large that is my focus. However, I think I would be remiss to completely avoid calling out the suckmeisters. The people who take care of themselves first while showing little care for their impact on others.

I’m tired of the suckmeisters.

Both small time like this woman, and in the bigger sense, I’m just over it. Maybe this was an isolated incident for this woman and I should give her grace. Maybe she had already had more than she could take for the day by 8 am and didn’t have the emotional reserves to show a little consideration. But chances are that she was just being a jerk. This world is hard enough to navigate most days without having to work around the suckmeisters and jerks.

So do the world a favor, do what your preschool teacher taught you, and say “excuse me”, and don’t cut in line. The world works better for everyone, including you, when you wait your turn and be polite. Assume that the next person is just as important and valuable as you, and that they have needs too. And when you blow it, say you’re sorry.

In so doing you take a little of the suck out if the world and pay forward kindness, and kindness matters. It really does.

Uncategorized

Finding a Fabulous Lip Gloss on A Snow Day

It’s a snow day. Not for actual snow though, we have just a dusting, but beneath it is a layer of ice.

A snow day would be great, we have a sledding hill about 40 feet out our door, but this? If you can make it 4 steps without landing on your tailbone it’s a success. There’s no way we can play outside in this.

I’m over it. This is the 4th snow day since Christmas break, and not one of them has been for actual snow, which we enjoy, but for bitter cold temps and ice.

In other words, we’ve been shut in together a bit too much this winter.

I wasn’t even going to get dressed. My bathrobe seemed to suffice, but I can’t quite manage to stay in jammies unless I’m sick, it’s a weird hangup. So up I went to get dressed, quite likely muttering under my breath as I went. It’s darn cold, so I opened my sweater drawer to grab a cardigan, and couldn’t find the one I was seeking, but low and behold, in my digging, this came up.

I have no idea how it got there, I don’t remember getting it, and I certainly have no recollection of burying it in my sweater drawer, but there it was. I snatched it from the drawer, threw on my clothes and went downstairs to the bathroom to try it on.

Next thing I knew, everything changed. You can’t wear lip color without mascara, and I added blush just for good measure. And low and behold, my attitude perked right up with my face. I’m not big on makeup, and since I work at home, my MO is to go with little or none, so I was surprised at the pick me up I got from a flattering lip gloss.

I took a deep breath and decided that my attitude should match my face, and got myself squared away.

Then I looked outside to see fat, juicy flakes of snow coming down hard and fast. Today is going to be a good day after all.

introvert · Uncategorized

Will That Be One Lump Or Ten?

Phone calls vex me.

Assertiveness is toward the bottom of my list of personality traits.

I would rather streak across the Super Bowl football field holding a neon sign over my head than confront anyone about anything ever.

But part of adulting is doing all of the above. And I do them often. In order to manage my home and family, I have to make uncomfortable phone calls, and with the high needs of my kids, I would bet those come more often than average.

For me, a socially anxious introvert, to move past this and be a somewhat effective human being, adult and parent, I developed a hack. The one social skill I actually do possess is the ability to find something my conversation partner will talk about. And in so doing, I throw in a handful or two of sugar, (or sometimes ten). I am great at getting people to feel good, or at least better about themselves, and getting a chuckle out of a mediocre joke.

For example, yesterday I had to call my son’s doctor three times for the same issue. Each time I spoke with a different person, someone who had contributed nothing to my frustrations. It would have been misplaced at best for me to act out the annoyance on person 3, who was doing her best to solve our problem, but at the same time, I was to the point where if the job didn’t get done right a supervisor would need to get involved. Yet I was acutely aware of the fact that if I was a jerk, things would only go downhill. So I started joking.

In my experience, at least two thirds of the time that you’re on the phone with a customer service representative, they will mention that the computer is slow. This is pretty much a freebie. I make fun of the computer, and suddenly we’re allies.

Then I thank them for just doing their job, even if they haven’t done it yet. There’s a good chance that the person I’m talking to has had a few frustrating conversations already that day, so if I can be the one that makes them feel like what they’re doing is worth it, it is that much more likely that they’ll get the job done quickly and well.

Then I find a reason to compliment them. This completes my trifecta.

I get great results with this formula, and hopefully leave the person I speak with in a little better place than I found them, which is a goal of mine in virtually every interaction ever. But the bottom line is that I do it for me. It’s a coping skill.

Having a set formula for phone interactions not only gets me the results I’m seeking, and gives the person I speak with a boost, it’s the ticket to dealing with what might otherwise derail me. I remind myself before dialing just what my steps should be, and having a plan empowers me to have an effective conversation.

It works in person too.

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.

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.

Uncategorized

Living Gratitude

Bear with me, this is something I’m hashing out in real time, so I don’t have it all polished and pretty. In fact, this writing is primarily intended for myself in order to work through my thoughts.

At Thanksgiving we pause to profess gratitude, often for things we take for granted on an ordinary basis. It’s a beautiful practice, especially before a giving (and receiving) season, to appreciate what we have. But…

Is there more?

Should there be more?

What if we take this day of thankfulness and soup it up, put wheels on it, and take it out for a drive?

For example: “I’m thankful for my healthy body.” What is the logical way to enact that thankfulness? A conscientious diet? Giving up a vice? Committing to exercise?

Or “I am thankful for my spouse.” But are you acting like it? Would your spouse say they feel appreciated? Do you thank them for their contribution to your home and family? Do you show them how much you value them?

What about your house? Your children?

Looking at myself, I suspect that my gratitude can often be superficial, just lip service, something to check off my list of things to do before digging into a glorious feast and then turning around and griping about the dishes.

I know that mindfulness and intentionality are buzz words that we hear too often, we slap the word authentic on something to make it look like we mean it, but do we? Are we fleshing out our gratitude and walking a thankful life every day? Are we even pausing to do that with sincerity for this one day a year?

It seems that I have more questions than answers, I’m afraid. But I can’t help but notice that even though I have more than I could ever need, I still crave more and more. And I’m not alone. I want to at least slow down this runaway train instead of just shrugging my shoulders because I’m not the engineer.

I guess what I’m saying is that I want to live out my blessings. I want my spouse to know what he means to me, and my kids to feel valued. I want to recognize the great fortune of having a home that stays warm in the winter and cool in the summer and a luxurious bed to sleep in. I want to live and breathe and eat and sleep gratefulness for each advantage I enjoy each day.

And then, (and I think this is the real key to happiness) I want to share it.