The Pilgrims are coming!*

Running to the Farmers'
Market in the FOG.
May 9, 2015

We followed indoor graduation procedures this morning because of the fifth day in a row of real rain.  One of my graduating seniors commented that she doesn't remember this much rain since, well, ever. During a downpour in late April, a new faculty member asked, hopefully, "They say that spring is the rainy season here?" to which I had to respond, "This is my fifth year here and I haven't experienced a rainy season."
Two weeks later and I have now experienced a rainy season. The local paper reports that we haven't had this much rain in a 30 day period since the 1920s.  Last week's drought monitor had us downgraded to "severe" drought (and who knows, by Tuesday our drought might just be "moderate").

Even before the recent deluge, it was a great year for the roses all over town.  Peonies were blooming places I've never noticed them and mine are finally growing up.  I claim not to be a rose person or a pink person or a frilly, fu-fu person, I make exceptions for bouquets of May flowers**.  Images are of a bouquet I picked Tuesday, May 5 and took to Texas.  I also picked one here yesterday, that includes additional deep rose-colored peonies that are just starting to open.

Happy Rain!  Happy Flowers!

*"If April showers bring May flowers what do Mayflowers bring?  Pilgrims!"

**While I still have no images of my famous former peony parties, one can see images of my May flower fanaticism with peonies up close,  or a big West Virginia bouquet.

To pay for all of those "Kandu"s (why I advocate part 5 of n)

One of the reasons I'm blogging this "streak for stroke" is to help fund raise for the Children's Hemiplegia and Stroke Association (CHASA).
CHASA is a small, small budget organization.  If the "one handed shoe tie challenge" that we've been talking about went viral like the ALS ice bucket challenge, the volunteer administrators wouldn't know what to do (but I'm sure it would be a nice problem to have).  CHASA programs are all focused on a simple goal: helping families of pediatric stroke survivors* and most are similarly straight-forward. They include (but are not limited to):

• Connecting families virtually and in person to trade tips, victory stories, and shared gripes in order to help combat the isolating feeling that nobody else quite "gets this".
• Serving as an information clearinghouse for diverse topics from "how to phrase bi-lateral coordination such that it is an educational goal" to "are there ANY shoes wide enough to fit over an AFO?" 
• Connecting research studies with potential participants and funding pilot studies.
• Setting up a shoe exchange.
• Providing grants for orthotics not covered by insurance.
• Providing small scholarships for college and professional schools/
• Sending stuffed penguins to children with hemiplegia and asking the children to create appropriate orthotics for it.

I'm well aware that stuffed penguins are not solving world hunger, but I have watched the CHASA Facebook feed and have been in tears over the obvious joy when some of the kids unpack their kandus.  I've shed even more tears looking over the photographs of kids with their penguin in a matching orthotic who are crazy-excited to see the photographs of the other kids with their penguins and their braces, because it means that they are not alone.

If you were to financially support CHASA, you could do it be setting CHASA as the recipient of your Amazon Smile page or by donating directly to Megan's Birthday (no, I don't know Megan) or any of the other Crowdrise pages.

*Hemiplegia is one sided-weakness.  It is a set of motor and muscular problem that results from brain damage. If the brain damage was before 2 years of age and is non-progressive, then it is often diagnosed as cerebral palsy.  Not all kids with hemiplegia (or hemiparesis or hemiplegic cerebral palsy) had strokes, and not all pediatric stroke survivors have hemiplegic, but among the CHASA families, kids with both is the largest single group.  Aster had a stroke in utero and was diagnosed with cerebral palsy right after his second birthday.

Because empathy is contagious (why I advocate, part 4 of n)

Sometimes transmission of empathy and compassion is completely rational: my grandfather started recognizing good things about China after my mother introduced him to a friendly, intelligent Chinese woman who smiled at his stories.  Learning from CHASA parents about struggles with students forming letters, I've asked a colleague to reconsider the spaces she provides for essay questions.  I donated more quickly to relief efforts in Nepal just because I am connected to the people of Nepal through an occasional facebook friend.

One never knows what insects the flowers have endured.
Baptisia Summer 2014 (?)

It's a long road.  One never knows what is just over the hill.
Better stop and make some funny faces along the way.

Sometimes it makes very little sense.  There's no particular reason a blog post here should resonate with a friend whose daughter is struggling with reading or that watching friends deal with health issues should make me feel more kindly to students who can't be bothered to come to class, but it did and it does.

Contagious compassion can be irrational, but I think it is always personal.  Knowing that something exists is unlikely to change anyone's attitude; a good story might.

So this is why I advocate for pediatric stroke awareness. I'm here to share our stories, and I hope that they might make readers a little more alert to the daily struggles going on around them.  And that that alertness might translate into treating everyone (oneself included) with a healthy dose of empathetic compassion.  And, who knows?  I


t might spread from there.

They're learning something in grade negative two

"Mommy, did you know that a pterodactyl is a flying dinosaur?" asks Aster this morning.

This comes just a few weeks after he came home with a navy blue partially inflated balloon in a 2 liter bottle.
A: "We made baby arugula at school."
Parents: ??
A: "We made baby arugula at school."
Parents: ??  "You made baby arugula?"
A: [Exasperated sigh.] "Yes.  And a mommy. It has a blow hole" [Produces a whale of a stuffed white sock.]
Parent: "Is it a baby beluga?"
A: "Yes.  Babies are blue and mommies are white. They all have blow holes."

Aster loves developmental pre-K (officially -2 grade on the paperwork) and he is apparently learning lots, along with his physical, occupational, and speech therapy.  Beluga, arugula, almost the same thing.

To help you find CHASA or your own CHASA (why I advocate number 3 of n)

I'm blogging up a streak to raise awareness for pediatric stroke in case you stumbled upon this blog, desperate for a community of parents also dealing the uncomfortable unknowns of raising a child with hemiplegia, hemiparesis or other symptoms of childhood stroke or mild cerebral palsy.  If so, look no further and click on over to the Children's Hemiplegia And Stroke Association (CHASA) webpage.

Does anybody really "get" prairie turnips?
[Kansas, May 2013]

While that scenario seems unlikely, I became aware of CHASA when I googled "two handed-toys" in the fall of 2013 and ended up here on a personal blog from someone else's May "Streak for Stroke", so it certainly is within the realm of possibility that your search is as circuitous.

I'm also here to encourage you to find your own CHASA.  Most of us are dealing with some thing (or things) that other people just don't "get".  Among the many wonders of the internet is the ability to connect geographically disparate people facing similar issues.  Among the CHASA community there are countless stories of relief, of lonely and bewildered parents feeling just a tad better, because they can share with the CHASA community that "gets it".  If you need a CHASA, please find your CHASA.  Someone else "gets it."
 

Because not everyone with a brace has a broken ankle (why I advocate number 2 of n)

When well-meaning folks ask Aster, "Oh, did you have an owie?" Aster does not realize he's being asked, "Why are you wearing an AFO?*" nor, the few times we've been asked, do I, at least not immediately.  Weird pauses have ensued

With AFO Nov. 2014

June 2014

Explaining that he did not recently injure himself is not a big deal in our lives, but I know many CHASA parents and adults with hemiplegia tire of the questions, and some parents fear casted constraint therapy** just because they don't want to deal with queries about broken bones.

King of the Hill, Nov. 2014

Helping people understand that there are many reasons for braces, casts, gloves, and supports***, and that assuming recent injury can be awkward is a small reason for why I'm raising awareness about pediatric strokes, but it one.  I can recognize "When is he going to get that off?" as a kindly-meant conversation starter, yet I can see how tired mothers of kids who may be wearing AFOs for life see it as a trigger for defensive outbursts or tears. Some would rather pretend injury than deal with the embarrassed pity that can accompany, "actually he had a stroke/cerebral palsy/permanent brain damage and has worn braces since he was 2."
As you can see from the images, three-year-old Aster does not lead a life requiring pity, even with his oh-so-fashionable supports.



*Ankle Foot Orthosis

**The non-affected ("good") hand is casted so that the child must use the affected ("bad") hand and develop new neural circuitry and new muscle memories.

***Not to suggest that I am an expert on all of the many reasons.

Because it's not like breast cancer* (why I advocate, 1 of n)

Pediatric Stroke Awareness month begins today and once again I am planning a "Streak for Stroke" and will be blogging up a storm (at least 20 days in May) in hopes of raising awareness of pediatric stroke and hemiplegia and directing people towards the CHASA (Children's Hemiplegia And Stroke Association) website and support services.

Not that long ago, someone in the CHASA Facebook community asked if it was bad that she didn't want to be an advocate during the May purple-wearing hoopla the CHASA community has been gearing up for.  Of course simply having a child with hemiplegia doesn't mean one needs to pass out flyers door to door (or, in fact, do anything but take care of one's child), but the ensuing Facebook conversation made me try to articulate why raising awareness is important to me.  The first few blog posts of this streak will deal with the many reasons I want to do this.

First and foremost, the population is really not aware of pediatric stroke.  Even health care professionals can be surprised that "kids have strokes, too."  This is a problematic state of affairs, when an estimated 1 out of every 2,800 children in the US is a stroke survivor and early intervention may be key to better long term outcomes.  Kids cannot receive help for conditions they have not been diagnosed with and parents and health care workers cannot seek help for conditions they don't know exist.

A purple flower each day is my symbol for the streak.
This is a Stokesia at a history museum near Topeka.

So, if you know of someone with a baby who is demonstrating strong hand preference (typically not using one at all) before the age of one, suggest they read up on the other symptoms of pediatric stroke (available, among other places, on the CHASA web page) and make sure they are dealing with a pediatrician who will take concerns seriously.

You may not have known that kids can have strokes, sometimes before birth.  Now you do.  That's one reason I advocate.  Many more reasons to come.


*Even before last October, you probably already knew that cancerous cells can spread in and around breasts.  I'm very for promoting research into early detection, prevention, and treatment of breast cancer, along with programs that improve the quality of life of breast cancer patients and survivors, but I cringe about some of the corporate over-pinking during "breast cancer awareness month" as if most of us were already not aware (or all too well aware) of breast cancer.