Mohawk Madness! (Alternatively Titled: “Have I Lost My Mind? Probably…”)

Well, it’s that time again….

Yup! The time Matt and I set our alarms to get up early, to watch Sarah shave her hair into a mohawk for hydrocephalus …

 

Wait.

No.

That’s not quite right, now is it?   This year, circumstances are a little different.

This time, I’ll be joining her.

If you knew me around this time last year,  chances are you’ll find this extremely funny . Why?  Because as excited as I was that Sarah was doing her fundraiser, and as much as I shared her posts about it, and tried to support her — would I have done it myself?

Nope.  No way.  Not happening.

I even made it pretty clear on all my posts about her fundraiser. Most of my tweets about it contained something like the following:  “Good for Sarah, and it’s fantastic of her to do something like this… but there’s no way I’d ever have the guts to do something like this. ”

Famous last words, right?

Anywho. This year, Sarah announced it again. Only this time, she invited other people to join her, donating the money to whichever hydrocephalus organization they chose.   That, was pretty cool. And lately, I’ve been more involved with the hydrocephalus community, between my support groups, making Boozle Bears, and Project Pixie Dust.  So naturally, the idea stuck in my head a little bit.

Not, that I particularly want a mohawk.  I certainly don’t feel comfortable in the fact that I could pull one off — but, it’s just hair, right?

But, there isn’t any denying that it would be an attention grabber . Especially if I shave my head, and have my shunt scar showing.  That screams ‘conversation starter’.   And that’s what we want – we want attention. The opportunity to talk about a condition that isn’t talked about enough. The more people know about a condition, and how it affects people , the less likely they are to ignore it.

The money doesn’t hurt either.  For raising a thousand dollars for a good cause, I can chop my hair off. It’ll grow back, and the money will be put to good use.  All of the donations I receive, regardless of if I meet my goal or not, will be donated to the Hydrocephalus Association. 

Not to mention all the poor people who will hear ALL ABOUT it, during the months when I’ll be raising the  money. 🙂  Really, you folks that follow me on social media may hate me by the end, but… you know, if I don’t talk about it – I for sure won’t hit my goal. 🙂

That being said?  I’m still terrified.   I can’t pull a mohawk off!  I’ve got the face of a 16-year-old, not a punk kid! (Or a glamour model, both of which I’ve seen pull the style off flawlessly!)

I have lots and lots of hangups on the subject. Most of which I’ll leave out of this initial blog – it gives me something to write about as we go. 🙂  It’ll be interesting to see if this experience changes my view-point on it, as we get closer to hawk time. 😉

The fundraiser starts tomorrow, and ends October 31st.  The cut is happening sometime in November, if I raise $1000.  The wonderfully talented Holly at Ooley’s will be cutting it for me.  Which, let me tell you, sets me a great deal more at ease. I’ve been to her twice, and I can’t imagine her letting me leave unhappy — or unattractive. 🙂

 

If you’d like to donate, or even share the link with someone else, I would be more than grateful. 🙂  Click here to visit my GoFundMe page. 

Also, if you could be so kind, if you find any pictures of gorgeous, breathtaking (or…feminine friendly in general) mohawks – leave me the link in the comments!  I have some major planning to do….)

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Project Pixie Dust’s First Giveaway!!

Wait.

Does that mean I’m a genuine blogger now?  Except for that little fact that I seem to forget I even have a blog somedays…..     Scary stuff, let me tell you. 🙂

Anyway, I’m really excited about this so, I won’t mince my words.

As you all know, I volunteer in my free time, for the Hydrocephalus Association.  Recently, (and if you’ve been keeping up with the Bear drama, bless you) I’ve finally gotten started assembling these teddy bears with shunts, called Boozle Bears.   I absolutely love them, they’re fantastic for explaining to little kids what hydrocephalus is, and how it’s treated.

Only thing, they’re a touch expensive.  (Granted, once you try to make one of them, you QUICKLY understand why. Not to mention, they have a real shunt inside of them!)

boozle

Look! All finished, stuffed, shunted and smiling. 🙂 You’d never guess he was such a nightmare to assemble… 😉

So, I got the brilliant idea to give my Boozle Bear away! I mean, I know perfectly well how my shunt works, why not give it to a family who needs it?

Expanding on the idea- we’re taking him to Disney with us, and taking pictures of him with all the characters.  Then, we’ll make up a photo album/autograph book for him, and we’ll give that away with him as well. 🙂

I’m beyond excited for it. I mean, I was already excited about taking the trip to Walt Disney World – who wouldn’t be?  But now, I know the little bear is going to be a fabulous conversation starter, and I’m going to have multiple chances to discuss the condition with people, and hopefully spread a little awareness while I’m at it.

Then, we come home, and I get to share the memories and the pixie dust with someone who may really need it. How cool is that?

So, if you would, do me a favor?   If you know anyone, or have anyone following you on social media who has hydrocephalus, or has a child with it, could you please share this giveaway?  I have it linked on Project Pixie Dust’s Facebook page , here. It doesn’t cost anything to enter, so if you know someone who needs something like this, please – let them know!

In the comments, let me know what you think of this bear, would you? Personally, I think he’s great, but I’m a touch biased… 🙂

Hydrocephalus Awareness Month

September is Hydrocephalus Awareness month .

If you follow me on FB or Twitter, you probably know that already .

You might even be wondering why the month is almost over…. And I haven’t mentioned it at all on here .

I could take the easy way out, say I haven’t been on the laptop much– and blogging from my phone is a pain.

I could say I’ve been playing on Tumblr, and have just forgotten. 

I could point out all the other wonderful blogs about this month, and say that there’s nothing I could possibly add .

The list of excuses goes on. And in reality, they’re all half truths.

But…..that’s not all.

Things about this month just make me mad.

And since you’re reading my blog… I’m afraid you’ll have to indulge me.

First, why is one month any different from the others?
Yes .. having an awareness month is good for getting the getting the general public involved. But all of us who have it, or are deeply affected by it…. We should have this mentality all the time! We should always want to raise awareness.

Second, people are fickle.
On Twitter , people were all over RTing facts, trying to trend #hydrocephalus. Facts were also all over FB.
I mentioned on Twitter about contacting governments. Actually doing something to tell them we need more funding.
I got some RTs. A few people said that it was a waste of time to do so. Two people said they contacted their reps.
..
Really? Are we the same people preaching on Twitter & FB about needing more awareness?
What is that worth, if we don’t do anything to make a difference ourselves ?

Who are we to get angry that the world doesn’t care about our condition, if we don’t care ourselves?!

It seems like such a no brainer. But simply complaining about the lack of a cure , won’t change it.
We can’t will a cure into being.
We can’t wish for more research funding, & expect to get it.
We can’t keep hoping someone else will come along, & fight OUR battle for us. 

There are several hydrocephalus organizations around. National AND local. Find one, get involved.
Contact your government. Your law makers. Explain why we need funding.

Here is an event happening Friday. If you can, attend. Anyone from HA or the PHF can give you more information.

We–you and I– need to step up, and make a change. If for nothing else, so no one else has to go through what we do.

Blog: My Broken Cranium

Oh my goodness. I’ve blogged three times in the past three days…. No one have a heart attack or anything. 😉

 

A friend of mine, (well, a Twitter friend, at least) has started a blog about living with hydrocephalus and bi-polar disorder.  You should check it out. The first post is great, and she is a writer, so it’s a good chance that even if you aren’t particularly interested in hydrocephalus or bi-polar disorder, it could still be an engaging read.

My Broken Cranium

 

Help the Hydrocephalus Association!

Some of you have probably seen the FB posts around, but Vivint is giving away 1.25 million dollars to charities- and the HA is in the top 20!!

This is good- because after June 11th, the top 20 will move on to a new phase- and the rest of the charities are out of the running!

So please, take a second and endorse the HA. 🙂  It’s a great organization and could really use the money.

 

<img src=”http://media.vivint.com/www.vivint.com/en/images/givesbackproject/givesback_banner_728x90_version_1.gif” alt=”Vivint is giving away $1.25 Million to charities. Help us win!” width=”728″ height=”90″ />

On Twitter? Join our #hydrocephalus TweetChat!

For anyone who hasn’t noticed the growing use of the ‘ #hydrocephalus ‘ hashtag on Twitter… we’ve started doing hydrocephalus chats on Twitter!

They’re fun to do (to me, annywayy) because you meet new people, and learn more about the condition. In the last two chats, I learned more about the ETV treatment than I’d ever known,  (And, I feel really awkward for not knowing it in the first place. Internet research, here I come!) AND “met” several new people, all of whom I’m now following, and vice versa.

Also, although I work with the Hydrocephalus Association, ( and love the organization!) these tweetchats aren’t hosted by any associations, organizations, etc. It’s simply a way for people with hydrocephalus to connect. Talk about anything you want, any organization you want, any support groups you want, et cetera. 🙂  My goal here is just to spread some awareness, and help people make connections they otherwise wouldn’t have. 🙂

Also, since everyone participating tags their post with “#hydrocephalus,”  it gets the #hydrocephalus hashtag around, in more people’s Twitter feeds. I’ve seen other Twitter chats get their topic to be a “trending topic,” which leads to even more exposure. 🙂

If you’re on Twitter, and want to join, you can click on the “#hydrocephalus” in any posts on twitter, or search for “#hydrocephalus,” and it’ll take you to a page that collects those tweets…. or an easier way… you can also join by logging in, then going to www.tweetchat.com and type in “hydrocephalus” in the box to follow the flow of the conversation! =)  This will also add the tag to your tweets for you, so you don’t have to remember!

We were doing a chat Sundays at 1, but that time wasn’t popular for people. So we tested out Tuesday nights last night, at 7 CST… and despite Twitter’s glitchiness, we had a wonderful turn out! 🙂  So, we’re going to keep the chat on Tuesday nights, and see how it goes!

Going to try and get a transcript up in the next day or so, check back!

Hydrocephalus Association- Oklahoma Partner

  All Ages Support Group Meeting

WHEN:
Saturday, June 4th,
WHERE:
Friendship Baptist Church in Owasso, in the New Beginnings classroom, at 7 pm.
WHAT:
This month, we’re lucky enough to have Dr. Nancy Merritt, D.O, out of Warren Clinic speaking with us.
She’ll be not only giving her perspective on caring for patients with hydrocephalus,and the doctor/patient relationship, but also answering any questions we may have for her.
If you have anything you’d especially like to hear Dr. Merritt cover when she speaks to us, please, send me an email and let me know, so I can pass the information along to her!
We hope to see you then! Not only are these meetings a great way to get useful information, they’re also excellent ways to network and meet and share information and resources with others with the condition.
As always, anyone is welcome to attend. Most of our members either have hydrocephalus, or are friends or  family members of someone with the condition – but anyone is welcome to attend.
Please RSVP by Monday, May 30th, so that we can make sure we have plenty of refreshments and any handout information we might have.
If you have any questions, please contact Tina Daniels at 918-694-9212 or owassosupport@hydroassoc.biz