Revisiting: The Roll Call

Since I’ve been musing about the possible death of blogging and the importance of not overstepping boundaries when it comes to storytelling I thought it would be a good idea to revisit (and then repost) the database of Cerebral Palsy related blogs, with a few vlogs thrown in.

It’s worth noting that many of these blogs haven’t been updated in years and are written by people who have family members who have CP, both facts that bring to light my previous points. However, they all have content worth looking at if you’re interested in getting to know a few individuals that make up the CP community.

This same list will be updated and expanded on an as needed basis here.

A Life Less Ordinary

A.J’s Awesome Adventures

A Place To Write Things

A T-Rex Life (Videos)

A T-Rex Life: Cerebral Palsy And Me

About The Small Stuff

Adapted World

Adventures In Mattyland

Amazing Amelia

Amazing Syafiah & Co

An INFJ With CP

And The Wheels Keep Turning

Andersen Family Blog

Ayla’s Rainbow Connection

Better Than Normal

Bird On The Street

Brace Yourself Declan

Brendan’s Life With Cerebral Palsy

Brielle and Me

Bringing The Sunshine

Caleigh’s Corner

Caneable

Cerebral Palsy Baby

Cerebral Palsy Daily Living

Cerebral Palsy Family

Cerebral Palsy Mamma

Cerebral Palsy Soccer

Coley’s Corner

CP Shoes

Cracks In The Pavement

Crip Video Productions

Dealing With My Life With CP

disABLED guy

Do It Myself Blog-Glenda Watson Hyatt

Drake And Lulu

EMDeerx Muse

Endless Jubilee

Finding My Way: Journey Of An Uppity Intellectual Activist Crip

Following Elias

Free As Trees

Gas-Food-Lodging

Hannah’s Adventures of Living Her Dreams

Hanpike

Henry’s Heroes

How Life Happens

I Heart Milo

I Will Skate

In Bloom

In My Eyes: Life With Cerebral Palsy

In The Words Of A Green Giraffe

Insights From The Sidelines

Isla’s Journey

Jake Olver (Videos)

Jentry Holthus (Videos)

John W. Quinn (Videos)

Journey With CP (Videos)

Jude, The Diary Of A Baby and A Stroke

Jump In For James

Kaitlyn’s News- Living A Happy Life With Cerebral Palsy

Katherine Hayward, My Life With Cerebral Palsy

Kelsey Can

Kendall’s Hope

Kristen’s Life With Cerebral Palsy

Lieck Triplets

Life And Family, Steve Wampler Is Living With Cerebral Palsy

Life In Holland

Life With The Loraines

Living My CP Life (videos)

Love That Max

Making My Mark

Mark Henry

Massagermommy

Mattes’s Madness

Micro Preemie Twins: The Story Of Holland & Eden

Miss Charlie

Missy’s CP Journey

My (dis)Abled Life

My Life With CP (Videos)

My Spelling Sucks

Nich Vaughan

No Superhero

Off Balanced

One Day At A Time

Our 3 Little Miracles

Outrageous Fortune

Painting For Hailey

Premeditations: Reflections On Preemie Parenting

Riley’s Smile

Rob J. Quinn

Ryn Tale’s Book Of Days

Sammy’s Walk Through Life

Smith’s Holiday Road

So… How Did You Break Your Leg Then?

Spashionista Report

Speak Up, Sit Down

Special Momma

Stories With Sam

Team Aidan

That Crazy Crippled Chick

The Blessing Counter

The CP Diary

The Deal With Disability

The Fabulous Adventures of a Four-Legged Woman

The Galli-ringo Family

The Girl In The Wheelchair

The Grappler Within

The Nest

The Writer

Three Chocolate Brownies

Tonia Says

Trailblazing With CP

Trousdell Five

Tutti Frutti

Twingle Mommy

Unexpected Lessons

Updates on Lewis Jack

Verses Of Vaughan

Victor’s Smile

View From A Walking Frame

Welcome Blessings

Welcome To Elijahland

Wherever He Leads We’ll Go

Writer In A Wheelchair

Zachary Fenell (Videos)

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Telling The Story You Have Ownership Of

During my Q&A in my capstone presentation I was given a piece of feedback that is still sticking to me, like flypaper.

“It would be nice if you incorporated more stories in your website like the ones you just shared with us.”

This wasn’t the 1st time this was suggested to me, so I responded appropriately (or what I felt was) inside I was like this:

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I understand stories need to be told but if they don’t belong to you, you have little, if no right, to tell them.

Although I read it all the time, it makes me uncomfortable when stories are told about someone, a child, sibling, spouse, etc is being told without their consent. I wonder what they would think if they knew?

Mostly I wonder what a child will think about their parent telling everyone about their lives before they ever knew what they were doing.

I understand that stories need to be told, I won’t be a writer if I didn’t, but where’s the line?

I feel like anyone with a keyboard can call themselves a writer these days.

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It sounds great, but what’s the real price tag?

At what point does sharing information become exploitation?

There’s an argument that true journalism is dead. I wonder if blogging has contributed to this. These days it seems like everyone has an agenda, meaning impartiality is gone.

I’m not saying that we shouldn’t tell stories. What I’m saying is that you should tell your story, especially when it comes to blogging. A child, for example, is under your care but when they grow up they’ll have to handle what you’ve said about them, because if it’s on the internet it’s quite possible that it won’t go away.

Tell the stories that you have full ownership of, yours.

Something

It’s been a busy week for me, so busy in fact I thought I might go a week without blogging, because the previous post was written before its actual postdate. So, I have about an hour to come up with something before the rest of my week, weekend included carries me away in its wake.

Oh, course I have next week off, and seemingly all the time in the world. Why does that always happen?

I’ve spent a fair amount of time in the car this week going from place to place, particularly yesterday, so I’ve had plenty of time to think in the midst of my self-imposed craziness.

It’s no secret that I’ve been doing a lot of reading these last few months, but even so the one thing I haven’t been reading is the Bible. There’s no excuse for it, it is sitting on the end table after all, less than a foot from where I sit to write, although I have been known to do a quick “verse check” now and then, thanks to the world wide web.

Although verses are still finding their way into my thoughts, no matter how long it’s been since I’ve had quality Bible time.

Even though I’ve been so busy I’ve been taking time, or rather seizing opportunities, to get out there and make an attempt to step out of my comfort zone. Since having surgery, and even before that, I’ve felt the Lord had given me a special mission. For those of you who have read Sleeping With Bread I’m talking about my sealed orders here.

But is hasn’t been an easy process………
(Is it ever?)

I know I can’t sit and wait for things to happen. But what direction do I go in? What if I go the wrong way? What if I go in the exact opposite direction of where I’m supposed to go?

So I’ve been being intentional and thoughtful of how I spend my free time these days, beginning this week. I’ve been trying to get “me,” for lack of a better word, out there. I’m considering saying “Yes” to things I would typically say “No” to. Just to see what happens. Maybe saying “yes” when I would’ve said “no” will make all the difference.

It’s working out well so far, as far as I can tell anyway.

Here’s to saying “Yes” even when you really don’t want to.

*A similar version of this post was written on May 21, 2010

On Change

I’ve been trying to write something for more than a week. You’ve been there, right?

If you haven’t, lie to me.

May has been a challenging month. It went from being, “If I can just make it though these next few weeks” to “If I can just make it though this month.”

For those of you familiar with the spoon theory; I am out of spoons, almost.

I’m not sure where or when it started. At this point it doesn’t matter much. Life happens.

May (and a portion of April) has involved a lot of change. I have a love/hate relationship with change. It’s nice to break from the usual but the usual is the usual for a reason, because it works.

I’ve been thinking a lot about change. It’s a common topic of my life these days. I use to think I could handle change pretty easily, sure there were rough moments but they were manageable. And it was only one thing happening at once, usually.

These days every change seems to be followed by another, if not preceding another. It’s a lot. When I found myself “escaping” to my day job I discovered my “fill line” for change.

I keep telling friends and family that I feel things changing, and I wonder if they’re for the better, for the worse, or just time for it. My brain has been going through a category phase. It needs to categorize as much as it can as quickly as it can.

The thing that’s bothering me about all of this change, I think, is that 99% isn’t under my control, I chose very little of it. Change is exciting when you choose it or when you choose to accept it. I’ve had to figure out where I fit, if at all, in all of it. It’s not a fun process.

Change has a ripple effect. Even if you’re not the one changing the change can still affect you; hence the reason why I’ve had to figure out where I fit in constantly changing interpersonal dynamics with those around me.

To make matters worse, or at least it felt like it at the time, an opportunity presented itself that I wanted to take. It just wasn’t as easy as I thought it would be.

I had to write an essay. But it just wasn’t just an essay. It had to be a personal statement.

In an effort to lesson my mental anguish at the process people asked if I had something already written that I could just update. Under the advice of a high school teacher I’ve kept everything I’ve ever written, mostly, even notes. So it wasn’t out of the realm of possibility that I had a personal statement somewhere, or something I could turn into one.

I did the math, for filing purposes, at least at first. The last time I wrote an essay, of any kind, was ’07 (ironically April).

A lot has changed since then. I’m not a completely different person than I was back then but a lot has changed. None of those most “recent” essays would do.

Change happens. How you handle it is where the real change(s) seem to occur.

In the meantime, does anyone out there have any extra spoons?

*A similar version of this post was written on May 30, 2013

Is Blogging Dead?

I started blogging when it wasn’t a popular thing to do. I didn’t really read other blogs, if I did it was because another blogger left a comment on my blog first. It wasn’t until I was out late one night for a cast party when the director confessed that he often spent hours every night reading random blogs, literally random, he rarely read the same blog twice.

It was only a few years later that my bookmarks were full of blogs, which I checked before starting my day, every day. At times it took up so much time that I was almost late to class on multiple occasions.

At some point I stopped reading my laundry list of blogs and moved on. I’m not sure why but it’s how it happened.

However, I knew the power of blogging. So much so that I compiled a list of blogs that were similar to mine in one aspect. Mainly because I wanted other people to be able to find what I wanted to see for years.

Every once and a while I’d check in on a blog or two that I used to visit daily (or even multiple times a day if called for) to catch up on what’s been going on with that individual, or their child, or their family, or some mixture of any of it.

Some have disappeared. Some of their authors and/or their children have even died.

Some haven’t been updated. Some are still around, a few are even thriving, but it’s not the same as it was.

I suppose it’s a good thing, but I wonder what the downsides are.

These days it’s rare that I read any blog on a regular basis.

These days I grab my phone, 99% of the time before I’ve even gotten out of bed and scroll through social media platforms. I scroll so fast I doubt I’m actually reading anything, unless osmosis is indeed possible.

Some of my blogging friends have turned to Inst@gram I feel like that’s become the new blogging in some ways. I miss the blog posts, but I appreciate that Inst@gam is probably a better fit for their lives these days.

One of my biggest issues with social networking platforms is that I can’t compile a list of people in similar life circumstances that I can with blogs, even if I make a list it’s hard to let others know about it in the same way you can with blogs.

It’s difficult to foster the same type of environment on social media platforms as you can with blogs and the opposite is true as well.

And given how the internet & other technologies have evolved over the years I keep coming back to one question:

Is blogging dead?

My first instinct is to say yes. But upon deeper reflection I’m more inclined to say that it’s just not how it was. It’s just evolved.

Maybe I’m Not An Expert

With March coming to a close so goes my blogging blitz. It never ends up how I think it’s going to and this year was no exception.

I feel like this year was different than the others, for a few reasons, less facts, more stories, for one thing, or is that two?

There were topics I wanted to write about but never got around to or have already written about. When I came up short I dove into my archives, probably more than I wanted to, but it worked. I think?

I’ll get to more stories later on, possibly when the timing is better.

One thing that kept getting my attention this year was the focus on children and the desire to treat, if not cure Cerebral Palsy as soon as possible.

This isn’t new by any means, but it seems to be gaining more attention for whatever reason.

In a way my focus this past month has been more personal because it’s how I’ve grown into adulthood and the different phases of life that people, CP or no CP, find themselves in.

Not every aspect of life comes with statistics, and even those that do come with outliers.

So, for now, and probably in the future, I leave you with more stories than statistics because you can find statistics somewhere else.

Life as an adult with CP is an oddity, a misconception which I brush up against every day, so although Cerebral Palsy Awareness month is over that doesn’t mean my efforts are over, at least not completely.

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All Cerebral Palsy related posts

If I Did Not Have Special Needs

Ellen did an If My Child Did Not Have Special Needs list/post. I didn’t think this would be the most fun of ideas, but I did sit and wonder what my list would look like if I did the grown-up version.

 If I Did Not Have Special Needs I would probably freak out at most medical related situations, like most people do. Instead I tend to treat them like social occasions.

If I Did Not Have Special Needs I would be more flexible with my time, money, and any and all other resources. I would probably be much vainer too.

If I Did Not Have Special Needs I would probably treat kids with special needs as abnormal. Instead I see them as normal, like the other kids.

If I Did Not Have Special Needs I wouldn’t look at the other side of the coin. When people complain that they weren’t told something my first response is usually, “Did you ask?” And that’s just one of many situations.

If I Did Not Have Special Needs I’d be at least 5ft 3’, in really great shape, and have a shoe addition. (Riiiight)

If I Did Not Have Special Needs a lot would come easily to me & I would take it all for granted. Like being able to do something crazy, like run a marathon, on a whim.

If I Did Not Have Special Needs I’d let insurance companies get the best of me. I’d also foolishly believe you catch more flies with honey. Instead I’m like a pit bull with pot roast, but I will try being nice on the first attempt.

Since we’re on the topic of insurance……. If I Did Not Have Special Needs I probably wouldn’t have insurance & be O.K. with it.

If I Did Not Have Special Needs I would not be a blogger. I would not be spending my free time writing for who-knows-who. I would not be writing this very post. Instead I’d be a bestselling writer with sales second only to the Bible (even in my non-special needs dreams).

If I Did Not Have Special Needs I would not be a trailblazer. Instead I would be “just like everyone else,” and although that’s what we all aim for, it’s not the way to live your whole life.

If I Did Not Have Special Needs I probably wouldn’t be a role model to many, if any. Being an adult with special needs I’ve found myself in the position of role model for other children (and often their parents).

If I Did Not Have Special Needs I would not know who my real friends are as well as I do. A gift that very few people are privileged to have.

If I Did Not Have Special Needs I would be nothing close to the person I am today.

*A similar version of this post first appeared on an old blog on September 1, 2011

I’m Not An Expert, But I Play One In Life

March is Cerebral Palsy Awareness month, as a person with a disability, which happens to be CP, I feel obligated to do my part in spreading a greater sense of awareness; because although CP is common few people really know about it.

I’m not an expert in CP. I have not studied it in textbooks, read studies, or analyzed people with the disability, from an objective standpoint.

I’ve lived more than three decades with Cerebral Palsy; I’m not an expert, but I play one in life.

Lecture halls and textbooks have their place but there’s something to be said for the value of living something day in and day out without the sterility that can come with formal education.

So, what do I have to tell the world, or at least the internet?

It all depends.

I used to put everything out there, or at least that’s what it felt like, now I pick my spots, just because I don’t put it out there doesn’t mean someone else can’t put it out there, or just because it’s not out there doesn’t mean it has to be out there.

Boundaries, they’re a wonderful thing, when used well.

But boundaries can, and do, change.

Every once and a while I relax the boundaries, and it’s mainly for one reason.

I can talk about Cerebral Palsy as much as I want but there’s only so much writing and talking I can do without some sort of feedback. There’s only so much yelling into a void anyone can do before losing their voice?

I’ve done this before, and I want to do it again.

What do you want to know?

What questions do you have?

What possible myths have you heard?

What do you know about Cerebral Palsy?

What do you wish you knew, or even had the slightest idea about?

I know parents of kids with CP & young adults with CP read my blog. Both groups have questions and opinions (I would too if I were in their place).

I may not have all the answers to every question or myth that there is out there, but I believe I can provide guidance and provide inroads.

I’ll be the first one to tell you that I’m not in expert in Cerebral Palsy, but I do have live experience to draw on, and that’s not something I take lightly.

Why I: Don’t Suggest Giving Up Social Media For Lent

There are certain things I can count on as Lent approaches. Without a doubt, “What are you giving up for Lent?” is the most popular question to ask and/or be asked.

Now that social media has become such an important part of our lives it’s natural to consider whether or not to give it up for 40 days. I have several friends who engage in this practice, problem is most of them don’t use social media that much anyway. So is it really that sacrificial or are they really getting any benefit from it?

A point worth considering, but not the one I wanted to make right now.

As I write this there’s a snowstorm outside (I’m a write ahead & schedule blogging type). In fact at one point it was snowing so hard that it was snowing sideways. Thus my plans for the day have been canceled and I’m attempting to stay occupied indoors. In a way it’s going to make the point of this post much more poignant, at least I hope so.

The internet, and social media, has opened up everyone’s world. What I don’t think a lot of people realize is just how much it’s opened up the world for those with disabilities.

I wouldn’t be friends with many people if it weren’t for the internet, or at least I wouldn’t be as good of friends with people if things didn’t start on the internet. Let’s just say as an introvert with a disability it’s nice to get the “getting to know you” stuff out of the way when you only get to see people in person a few times in your entire life.

I can’t forget to mention Sara. If there’s anyone who taught me that just because you have physical limits doesn’t mean you can’t create solid friendships and an intentional community. Our friendship may have been short but it left me forever changed.

I don’t suggest giving up social media for Lent for one quasi-simple reason:

You may be part of someone’s community, and it may be the only community they have access to (especially in the winter months).

Giving up your social media routine for 40 days may seem like a good idea and in some ways it can be beneficial but if you do consider who you’ll be leaving behind for 40 days.

Here are some thoughts to consider:

How much can happen in 40 days?

Also consider your group of friends, do they also give something(s) up for Lent?

Do you all give up the same thing for Lent? If so, do you still have that same sense of community because you have other ways of keeping in contact or are you able to see each other in person?

Do you have one friend (or maybe more) that seems uncomfortable with your plan for a 40 day social media fast?

Have you ever stopped and really considered why someone is resistant to give up social media (especially if you “only” know them virtually)?

Lenten sacrifices are meant to make you a better person, but not at the expense of other people. If your sacrifice is harmful to someone else than are you really working towards a greater communion with the Body of Christ?

Alternatives to consider:

Cut back on your social media practices. Check in once a day or once a week.

Post the same thing on all of your social media accounts (idea borrowed from Pat Padley FYI).

Keep community connected through email or text, or an old fashioned phone call.

Make your intentions known early on, as in before today, so if any of your friends have reservations or objections you can engage in thoughtful conversation.

Have a way to contact you on your social media profiles and make it easy to find. Have you ever received an “out of office reply” with a contact email or number included? Like that.

I’m not saying that you absolutely shouldn’t give up social media for Lent.

I’m not God, Jesus, or the Holy Spirit so I can’t say such things with absolute conviction. But I wish people wouldn’t make the decision as easily as they seem to. Virtual community isn’t the same as in person community but it’s still a community that needs nurturing, attention, and people to take part in it.

*A similar version of this post first appeared on an old blog on February 10, 2016

Hear My Cry

I devote the month of March to posts about Cerebral Palsy awareness, since March is Cerebral Palsy awareness month & I have Cerebral Palsy it makes sense.

There’s only one problem.

I have no idea what to write about.

No.

Idea.

At.

All.

Part of the problem is that I’ve written a fair amount about Cerebral Palsy already.

There isn’t an endless well of ideas to draw from, contrary to what many writing teaching and consultants will tell you.

It’s almost February, which means it’s almost March, so I need to get working.

I have a few options, like repost previously published material; but been there done that, will probably keep doing it on occasion.

I try updating material that I’ve already published on the off chance I’ve changed my thoughts and opinions, but that seems unlikely for a few reasons.

I troll the internet for ideas, but most blogs I’ve followed for ideas have long been abandoned for one reason or another, and I’ve probably drained them for ideas already.

I compile some guest posts, I’ve done it before so it’s not completely out of the question, but I’m not the biggest fan of a marathon of material not written by me on something that belongs to me. I would need to vet people and posts, something that takes time and energy, possibly more than if I just wrote for myself.

And the option I like most of all, I open up the floor, meaning I take suggestions.

So, I’m taking suggestions, answering questions, welcoming the idea of potential contributors, and anything else.