A Stumble and Some News

Well, we got our Articles of Incorporation back from the Secretary of State's office.  We have to make a couple of changes and resubmit them before they can be approved.  Just minor changes, so hopefully the next round will be the final one.  :)

Sandy Dans of Jewels for Hope designed three beautiful bracelets for the foundation.  We received two of them a little while ago and are taking photos so we can share them with you.  They are simply gorgeous!

Our friends, Kendall Gagliano and John Dreyer have signed onto the foundation team.  They will join Ellen, Kathi, Aimee, and me in posting tidbits on our Facebook page and maybe even an entry or two here on the blog.  We'll introduce them to you over the coming weeks.

Kathi Bear went on a new adventure.... a shopping spree!  Check it out on her blog HERE.

~ Pia

Merry Christmas, everyone!

We've been busy little bees over here, working hard to get our little foundation off the ground..... such exciting stuff going on!

1) Our Articles of Incorporation have been written, approved, and sent to the Secretary of State.  We should soon be on our way to officially becoming a nonprofit!

2) We've found some wonderful people from a couple of IH awareness Facebook groups -- we'll be adding their group info to our website along with links.

3) We received our first Meet Our IH Families questionnaire response and will introduce that lovely lady to you in the next few days.

We're looking forward to 2013 with great hope and joy, and we hope you are, too!

~ Pia

Cleaning the Sink

One day when I was younger, I did the dishes totally on my own -- with no prodding from anyone.  Yay, me!  I was pretty happy with myself for being so "unselfish" and "thoughtful" so I told my mom what I had accomplished (I wasn't very interested in humility at that age).  Her response: "Did you clean the sink afterward?"  Hmmmm..... not exactly the pat on the back I had been looking for.  And of course, I don't think I had done that part.  Rats.  Back I went to clean the sink.  Ever since that day, whenever I get almost done washing the dishes I think of my mom.  Her question echoes in my ears until I actually do clean the sink.  Only then do I consider myself done with the dishes.  

As I was washing dishes today, the same thing happened.  Only this time, there was a second part to it.  I realized today that my mom's question was a prompting from her to finish whatever I start.  It was a reminder that any job half done is not a job well done.  And then I started thinking about the areas in my life where a job well done is the only acceptable kind of job there is.  You know, some things you can do and as long as they're mostly done and you gave it your best effort it's no big deal -- even if they're not really "well" done.  These are things like making the bed (who's going to see it besides me, anyway?), folding my laundry (I can iron whatever is beyond the wrinkle limit right before wearing it), and parallel parking (if I'm pretty close to the curb and my car is reasonably straight, I'm good).

Some things, though, just have to be well done.  Take, for instance, all the things I have to do about Kathi's IH issues -- doctor appointments to make and follow-up on, records to keep, research to.... well.... research.  I can get a specialist to make a referral to another medical professional but if I don't follow up on getting the authorization from the insurance company so Kathi can actually get the appointment, what good was the referral?  I can get Kathi to the ER to be seen when she needs it, but if I don't give them the history on her IH and information on her current symptoms, they can't do their job well enough to give her the help she needs. I can rant and worry all I want that there is no cure or adequate treatment for my daughter's rare disease, but if I don't do my part to help raise awareness and educate people and talk to the doctors on my daughter's behalf, then the chances of actually finding that cure or adequate treatment are that much slimmer.  In all these things, I have to be diligent and follow through to the end of the job.  

It's not enough to just do the dishes; I need to clean the sink.  

So as much as I hated to hear my mom's question at the time that she asked it, I'm grateful to her for it now.  It's funny what we remember from our childhoods; what sticks and can be applied to our adult lives.  Thanks, Mom, for knowing what I needed to hear and having the wisdom to say it.

~ Pia

Happy Anniversary

From flower to seed to new life

As you may know, November marks the 3-year anniversary of Kathi's "Diagnosis Day".  We heard from another IH'er this morning that today is her 12-year Diagnosis Day anniversary.  I left her a comment wishing her a happy anniversary and sending her love and hope today.  Does that sound strange?  People celebrating (announcing, marking) the day that they found out they have a rare, incurable brain disease that will bring them constant, often excruciating pain for the rest of their lives?  I don't think so, myself.

I look at IH anniversaries as a chance to look back at all that has happened in the past year and say, "You did it!  You made it through another year and you are still strong!  You are still you!"  Break out the cake and pour the sparkling cider!  Toss the confetti!  You are here and you are beautiful!  That's a great reason to celebrate!  

IH changes your life.  I don't think I'm being overly dramatic when I say that IH ends your former life and births you a new one.  I've seen what it does.  I saw the life my Kathi led three years ago and I see how IH has taken that life away from her.  But I also see how it has given her something else in its place.  Kathi may not be able to run around amusement parks with abandon like she used to, but she is able to look into people's hearts and have compassion for them in a way far deeper than she was able to before.  She may not be able to dance around and sing like a rock star as often as she used to, but when she does sing, her songs are soulful and moving and filled with understanding.  She may not get to hang out with her friends in noisy malls or go to concerts with all the lights and crowds much anymore, but her gatherings with friends these days are more intimate events in small groups where they can really get to know each other and enjoy each other's company.

Such drastic change is hard, but it's not always empty of blessing.  For whatever IH has taken away, my girl has received something even better in its place.  Sure, she misses the old days.  So do I, for her.  But the new days bring their own delights, their own lessons, and their own joys, too.  IH can be a cruel disease, but it can also bring gifts that might not have been received otherwise.  

Celebrate an IH Diagnosis Day anniversary?  Yes!  This year and every year.  To our Facebook friend, Vickie -- HAPPY ANNIVERSARY!  You did it! You made it through another year and you are still strong!  You are still you!  Congratulations on 12 years.  We are united with you in love and hope.  Have a  great day!

How about all of you?  How has IH changed your life?  What blessings have you received in place of the things that you've had to let go?

~ Pia

Send a Message of HOPE

We designed a card of encouragement for Kathi's Facebook community, one that people can post on the Walls of those who need a lift.  The quote at the bottom is by Author Unknown... no one seems to know who originally said it, but it's been making the Internet rounds for quite a while.  We thought it was perfect for our little image.

IH can be such a painful, debilitating disease, especially when pressures are elevated and you just can't seem to find relief.  That's often exacerbated by extreme frustration when even your medical team can't find any way to help you.  Sadly, that's par for the course with IH.  IH'ers are strong people.  No matter their ages, I have repeatedly seen them look to the bright side amidst their suffering.  But sometimes, it all gets to be too much.  No one seems to understand, and those who do maybe get a little inkling of what they're going through are helpless when it comes to finding a source of relief for them.  It's during these times that having HOPE is absolutely necessary.

Kathi, on her 20th birthday (June 2012)

It's days like these, when all you want is just one day of being pain free.... one day of feeling healthy.... just one day of knowing what it feels like to have no vise clamping your head and your neck and your spine, that IH'ers are in danger of losing hope for ever getting better; that they risk sinking into a deep depression; that they need most of all to be encouraged and reassured that there are brighter days ahead if they can just hold on a little longer.  It's for days like this that we created the picture at the top of this post.  It's for days like this that can sometimes drag on into weeks and months that we want people to share the picture we made.  Share that message of HOPE.  Kathi lives by the motto that HOPE is neverending.  With hope in our hearts, we know that there is always a brighter tomorrow.  God promises us this, and we know that He keeps His promises.

We shared the IHope for You picture on Facebook and someone asked if they could order them.  We thought that was a great idea!  So we checked it out and arranged to have a batch printed as postcards.  We'll sell them on the foundation website (2 postcards for $1.00) so that you can buy some to send to people you know -- what a great, personal way to cheer someone up and let them know you're in their corner.  Thank you to Tammy R. for suggesting that we have them to order.  You are awesome!

Kathi with her cousin, Brady (August 2012)

Look for the postcards on our website in a couple of weeks.  Send a message of HOPE to people in your life who need it.  You might just put a smile on their faces and a giggle in their hearts.  Like these two.  They are full of life and hope!  I love them so much!

~ Pia

A Website Is Born and a Bear Has Some Fun

Our website is live at last!  There is still more to add, and it will be growing steadily as we continue to grow.

Kathi is working on a photo collage (possibly two) for the website.  If you'd like to be included, please email us the following:
1) a photo of you with something that inspires you
2) a photo of you with a sunflower
Send it to us at TheIHopeFoundation@gmail.com and Kathi will do the rest!

We're also working on a Meet Our IH Family section.  We have a questionnaire to send you if you would like to participate.  Just email us at TheIHopeFoundation@gmail.com to let us know.  We'll send you the questionnaire, then you send us the answers -- with a photo of you if you'd like.  We do hope you'll be part of this.  We would love for the world to meet our awesome IH family!

A little sneak peek of Kathi Bear's very first adventure!

Kathi and I took Kathi Bear on her very first adventure yesterday.  We had such a great time!  I think the people at the park thought we were awfully funny, with both of us giggling at each other as we posed Kathi Bear and took pictures wherever we found a great spot.  It was fantastic!  Kathi didn't feel well enough to stay long, but we got some great shots and we enjoyed our adventure.  Read all about it in The Adventures of Kathi Bear -- the post will be up in a day or two!

Lastly, Monica of TG Bears told us today that she just sent out the very first Kathi Bear order to a client in San Dimas, California!  Woohoo!!  We thank this wonderful lady for making Kathi Bear part of her family!  Maybe we'll get to see some photos and hear about her Kathi Bear's adventures, too!

~ Pia

Kathi Bear

Kathi Bear by TG Bears

Introducing Kathi Bear!  Our friend, Monica of TG Bears has created a cute, cuddly charity bear for our foundation! She used Kathi's logo and tagline, and incorporated them into a totally huggable stuffed bear that is just SO lovable!  Kathi chose white fur for her bear, and Monica stocks the softest fur.  Kathi Bear's paws are white suede, so that Kathi's tagline doesn't get lost in a fur forest.  And we were absolutely tickled that Monica added the blue-and-green (the IH colors) ribbon scarf AND a little sunflower!

Seriously.... how CUTE is this bear???

Kathi Bear is 16" tall and has jointed arms and legs.  She is just the right size for cuddling, and her stylish ribbon scarf helps her fit in anywhere from a country picnic to an elegant charity ball!

Kathi Bear arrived in a protective plastic cover, nestled in paper in a snug cardboard box.  She was traveling in style!  Monica always makes sure her handcrafted bears arrive in excellent condition, ready for loving!

I took Kathi Bear out of her box and sat her on the passenger seat for our trip to the mall to visit our favorite bear clothier, Build-a-Bear!  At 16" tall, Kathi Bear can wear so many of Build-a-Bear's fun outfits!  You can tell by this picture that the day was kind of grey and drizzly.... Good thing she was wrapped in plastic for this!

The first order of business was to get Kathi Bear this neat little red convertible that Kathi and I saw during a previous visit.  I just knew I had to get it for her bear!  I mean, it's almost a perfect replica of Kathi's own car. How could I resist?

This is the pic I showed the clerk,
so she could see Kathi's glasses.

A pair of eyeglasses was another must-have!  Ha ha, what were the odds they would have glasses just like Kathi's?  Awesome!!

The clerk at Build-a-Bear thought Kathi Bear was just too cute!!  She gave us (and I do mean GAVE) some blue and green ear ribbons to match her scarf and once we put Kathi Bear's glasses and ear ribbons on and sat her in her convertible, I knew her look was complete!   No need to buy any outfit this time, but there's always next time!

It was like torture waiting for the day when I could finally present Kathi with her Kathi Bear!  She had no idea that it was already being crafted.  As far as she knew, we were only in talks with Monica about the design.  When the day came to give her her surprise, the look on her face was priceless!!  I wish I'd had my camera ready!  Well, okay, I had my camera but she had bed head, ha ha.  Shhhh... don't tell her I told you!

Anyway, Kathi Bear is now ready for some serious exploring!  Check out The Adventures of Kathi Bear here on our blog to see where she goes and what she's up to!  Want to join the fun with your own Kathi Bear?  Click HERE to order yours -- the purchase price includes shipping to any US address and a $20 donation to The IHope Foundation -- then dress her up (or not), take some pics, and email them to us at TheIHopeFoundation@gmail.com.  You just might see your own Kathi Bear on our blog!

~ Pia