The Ever Evolving Sort of Hope

“Feeling gratitude and not expressing it is like wrapping a present and not giving it.”
― William Arthur Ward

imagine my surprise!

Imagine my surprise when I finally had a moment to log on to my treasured blog and discover that I’ve not only reached 100 followers but have also been given the gift of 2 very lovely blog awards by 2 wonderful fellow bloggers!!!

 

The Leibster Award  from Anita’s Blog ~ Noted In Nashville –

Anita shares her music and makes me hungry when she shares her favorite foods. She is a singer and songwriter and also loves food ( did I mention that food part? 😀 )

and from another woman I read every chance I get,~ RARASAUR  came the ” Very Inspiring Blogger Award”  which she gave me for ” inspiring and encouraging the unexpected”  ( Which made me cry). This woman oozes writing talent and humor. I am honored beyond words. She is who I aspire my writing to be when my writing grows up.

When I get a whole uninterrupted minute and finish my chores, I plan on responding properly to these wonderful nominations. Thank you ladies for making this small town girl feel pretty darn big.

I only started blogging to hopefully raise some awareness about this thing called RSD. To maybe ease some of the pain of this dreadful disease and also to not feel quite as isolated. Getting 100 followers was something I never really thought about. I didn’t know if people would “get me” or understand my peculiar sense of humor. I didn’t think people would like to look at “one more photo that Hope posted”.  But you’ve all proved me wrong.

Who knows, maybe you don’t look at all the pics.. wait, we’ve had this conversation, haven’t we?~ “the sort of hope who knows you’re visual”

Anyway, I thank you for stopping by, for whatever reason.

And I thank you for continuing to inspire ME to go on.

“Unexpected” ~ that’s one word that has never been used when describing me before.

Guess that’s the ever evolving part. 😀

allsortsofhope.com~ the musing of a frustrated, modern day, red headed housewife , ever evolving mamarazzi of two teen athletes.

 

 

Pop Calls Them Pixies

“We’ll be Friends Forever, won’t we, Pooh?’ asked Piglet.
Even longer,’ Pooh answered.”
― A.A. MilneWinnie-the-Pooh

My daughter Natalia is quite an amazing young lady. Having been put on bed rest at 28 weeks into my pregnancy with her, she is not only one of my greatest challenges in this life, she has also been one of my greatest rewards. I like to tell people though, that even after being put on bed-rest at 28 weeks for premature labor, I ended up going past my due date with Natalia and had to be induced. That’s the thing about my daughter Natalia, she does everything her way. On her on time and at her own pace. And that became apparent at a very early age.  She is strong -willed, stubborn and determined.

She could walk early, talk early and ‘give direction’ ( read was quite bossy) at a very early age. One of our favorite memories of Natalia was when she lifted her beautiful little red head and blurted out in a crowded store for all to hear (at the toddling age of 3 )  ” Mommy, Nicky is antagonizing me!”

We simply had to find a way to channel all of her energy. I was injured when Natalia was only 2. Dealing with 2 toddlers while on crutches full time is difficult. So we needed to find something to do with them to help get their energy out. By the time Natalia turned 3 we had enrolled her into dance classes. By the time Natalia turned 4 her instructor had informed me that a ballerina she would never be. Fortunately for me, their was a mom in our class of a very talented gymnast in the area who recognized what Natalia just *may* be.

By the age of 5 we had enrolled her in tumbling classes. It didn’t take her long to get her first solo. She immediately began to excel.

By the age of 6 her Pop-Pop offered to enroll her in a local gym to try out some of the equipment “just for the summer”, as a birthday present. That  was June. When August rolled around, she was offered a chance to begin training on their “team training program” that they called “The Sparklers” at that time.  It was then that she met her best friend Brianna.

Fast forward 8 years. Brianna and Natalia have grown up together. Theirs is a friendship of mutual respect. I have watched them evolve as gymnasts and as people. I am incredibly proud of them both. Brianna’s family has been beyond generous to my daughter over the years. They treat her like she is theirs. She has traveled with them, stayed with them and vacationed with them. I joke that in the summertime Brianna’s parents and I share custody of them. I wouldn’t have it any other way.

I am delighted that their friendship has remained steadfast. I have seen very few serious arguments. Very few typical girl squabbles. Maybe because they go to different schools, or maybe because they are just that close. For whatever reason it is, I am grateful.

Bri and Natalia are my 2 favorite subjects to photograph. Brianna will humor me almost as much as Natalia does.

Brianna’s Pop has moved in with them recently. It hasn’t been an easy adjustment for her. But it makes me giggle when he calls them “the 2 Pixies” . I have named my collection of photos of them over the years ” Pop Calls Them Pixies” in his honor.

I love to see their joy when they are together. Love to hear their laughter. Even love to hear them argue a bit over who gets to stand where or wear what. Because that just means they care. And caring is a good thing.

I lost my best friend when I was just 16 years old and I would give the world to hear her crazy laugh again. Or even just to argue with her.

These are a few of my favorite ( older) photos of them. My daughter’s schedule has been so crazy we haven’t seen much of Brianna lately. I’ve been waiting to get them both out in front of my lens again. It’s been too long. I’m sure my daughter will let me know when the time is right.

The Hope for Hope Sort of Hope (again)


I struggled for days, weeks , with this next entry. Heck, I’m struggling as I type this. I am emotionally conflicted.

I’ve mentioned that my father, God love him, unbeknownst to me,  had gone ahead and organized another fundraiser for me. At first I flat out resisted. I’ll get to why in a minute.

The first few fundraisers were so successful. I made them last through countless treatments and countless trips/ appointments in Philadelphia, oodles of meds, covering all but 3 years. Sadly, though, my own series of unfortunate events, I have found myself right back where I started. I guess I should refresh everyone’s memory and say that I am currently suffering from RSD (reflex sympathetic dystrophy)  I am lucky enough to be treating in Philadelphia with the world’s leading specialist for RSD, Dr Robert Schwartzman. For the past 3 years I have been receiving IV Ketamine Therapy. I have had an initial 10 day treatment, countless 2 day treatments and 2 week long inpatient induced ‘coma’ treatments. I am a candidate for the month-long coma treatment that is not currently available in the USA because IV Ketamine therapy is still considered experimental and not all insurances cover it. I can’t even begin to think about that treatment option yet. The cost is in the hundreds of thousands dollars range. But I have been sooo incredibly lucky. IV Ketamine therapy has changed my life. It put me back in the game. Got me off of my forearm crutches, out of my wheelchair and back to a functioning member of society. And I couldn’t have done it without the help of my amazing community, family and friends.

(more about the K therapy>–>)http://rsdfoundation.org/en/abcnewsdr.schmartman1.html

I don’t know if the average Joe realizes how incredibly financially devastating having a chronic condition can be for a person, let alone a family. Not only did we lose my (substantial) income, we also lost the terrific benefits I carried through the hospital. We also had to become self insured (which I know many people must also do now in this country). Because of my condition, we paid out the nose for private insurance for over 10 years and because of my pride, I refused to accept government assistance even though I was eligible for medicare for the past 10 years. Can you believe that? I am so vain, so proud that I didn’t want to walk into a doctor’s office and hand them a medicare card because I know that people treat you differently when they ‘think’ that you are “sponging” off of the government. It’s a common misconception. Then one day, that oh so ‘glamorous’ insurance company that my pride made me carry decided to drop me because I maxed them out and I was left with no other choice but to accept what our government offers to me because I have a pre-existing condition” and most private insurances won’t touch me and those that will , will only do so at such a cost that I can’t even think of affording it. I’m sure I’m the only medicare card carrying member who would give the world to have her glamorous private insurance back, because that would mean I’m healthy again. We’re not all “spongers”.

Anyway, I mentioned in a previous entry how a few not so nice people have made things rather uncomfortable for my children and myself since the last round of fundraisers. These select Polly Perfects who do things for the show of it and not from their heart were heard to say things like ” oh, are those new shoes? Didn’t we just have a fundraiser for you like 2 years ago?” (as if one can never again clothe themselves because they once needed help or can’t get dressed despite the fact that I went back to a (very) part time job the minute the treatments began to work just so I *could* or buy things for my family.) The Polly Perfects were relentless. They judged at every turn and every chance. They are the reason for my hesitation.

But I have decided after meeting with Pastor Scott, my father, Mark Miller, Nicole Miller, my cousin Laurie and all the incredible people who have poured their heart and souls into making this happen for myself and my family that these Polly Perfects are people who really don’t matter in my life or the lives of my children. They are people who will never really understand what it feels like to give completely of themselves like I got to do for the Cups of Compassion. Polly Perfects are people who give so that others can *see* them giving. They are the people who do things and wonder what they get back in return. I don’t really need those sort of people in my life anyway. No one does.

So here it is, the flyer… I can’t keep it secret any more. It’s all over town now anyway. My dad really gets around 😉

I know of a few really cool Chinese auction items.. (these are the things I’ve seen so far)

** for my baseball fan friends**~ 4 Season Tickets to the Iron Pigs

** 4 Greens Fee passes to the Berkleigh Country Club

** A “Hope’s Favorite Things” Basket from Salon Lora filled with over $100 of my favorite retail from my generous boss..

From what I understand you can buy a ticket now, and if you can’t make it , the $25 becomes your donation.

But come play bingo,eat some baked goods..  I’d like to see you. ❤

BasketBingoFlyers (1)

Hope for Hope

Basket Bingo

 

Sun. – November 4, 2012

Alburtis Recreation Center:

DOORS OPEN 12:30PM    BINGO BEGINS 2:00PM

DONATION $25.00   (INCLUDES-Hot Dog and Beverage)

SPONSORED BY Trinity’s Helping Hands

 

 

TICKETS AVAILABLE AT:

MICHELE’S CORNER SALON  610-682-6638

OR CONTACT:

Mark Miller 610-721-2923

Trinity Lutheran Church 610-682-7352

 

Proceeds from this event will be donated to Hope (James) Distasio.

Hope is suffering from Reflex Sympathetic Dystrophy Syndrome (RSD).

RSD is a chronic pain condition that is believed to be the result of dysfunction in the nervous system.

 Currently, there is no cure for RSD.