The Sort of Hope Who Lived in 2012

Bye Bye 2012

My how times have changed. Mike and I are enjoying a fabulous stir fry that I’ve prepared at home, our very quiet home and now the children are the ones who are out, and we are the ones staying in,  owed in part to this cold I can’t seem to shake. But it’s no big deal, I never cared much for New Year’s Eve anyway. I feel like it’s rookie night. All the prices go up, and the people who never party go out. Not for me, thanks. Give me my pj’s and the quiet. I don’t need the noise and the crowds.

I’ll stay home and watch the recaps. Read about words we don’t want to make it to 2013.. like Yolo (eew) or fiscal cliff. I’ll lament the passing of my treasured light bulbs. I’ll thank the Myans for being wrong. I’ll say a little prayer for all of the innocent children of Sandy Hook and the other victims of terrible, senseless crimes this year ( like Mike’s young cousin Timmy, a murder victim back in Feb of 2012). I’ll continue to think about the people still rebuilding from Super Storm Sandy.

And I’ll praise women like Jennifer Livingston the news anchor who stood up to the bully who called her fat.  ( I blogged about that before here: read on for more..) I’ll be thankful that her words went viral in a matter of hours. I’ll be hopeful that perhaps just one girl will listen. Hopeful that perhaps just one self image of a fragile teen age girl will be saved. Hopeful that maybe 2013 will be the year we can knock social media bullying down a few pegs.

Hope

thank you Kevin Brett of Soul Imagery for allowing me to edit this.

And then, because a woman who has walked a mile in my shoes has finally convinced me to stop looking at all things I can’t do and instead celebrate the things I’ve done, I’ll look at what I’ve managed to be a part of in this past year.

2012.. my highlights.

I was somehow able to keep up with my tumble off champ, my All Berks/ All State Player, my Level 7 USA Gymnast who medaled many times, my HS cheerleader/2 time tumble off champ, another NHS member, My Summer Love- (Schuylkill Berks Legion League Berks Co Div Champs )~oh what a season~! , a 2 x Tourny Winning 18Y Berkshire Showcase Team, a permitted driver to a licensed driver. Natalia turned 14 Nick turned 16. Seems impossible. What am I forgetting?

On my birthday I said good bye to the family Jeepster. Jeepster had been a part of our family for nearly a decade. I have yet to replace it.

In 2012 I personally loved a few and lost a few – {my ball buddy ~ “you know what I mean?” },  flew to South Dakota for my first vacation in years, spent 7 whole days with the James Gang & saw my brother get married. Was able to once again participate in Cups of Compassion and feel what it really means to give of one’s self.

Sadly, I’m still learning that no matter what you think, no one or anything is ever truly as it seems and that people can still manage to surprise you even after 40.

I’m thankful for the chances I was given to share my talents this year. I’m so grateful for those who shared theirs with me.

This year I survived another 7 day inpatient coma and 5 outpatient treatments to help control and slow the progression of my 12 year battle with fully body/ internal RSD.

Oh and I started “allsortsofhope.com”.

As far as this life I lead, well, I owe so much of it to you, my friends who helped to keep me in this game called life yet again.

I am grateful for my new audience and as always, treasure my old one.

13 is my lucky number. I have a feeling 2013 is going to be a great year.

Stick around, won’t you?

newyearsresolution

The Vacationing Sort of Hope

 

“Fauxtographer” ~ have you heard that one yet? I have .

Silly.

People are silly.

A couple of years ago I was a candidate for an experimental treatment which my insurance did not cover. At the time, I was using forearm crutches daily and occasionally a wheelchair. The pain from my disease was off the charts. This treatment, IV Ketamine infusions, offered a potential reduction in my symptoms. But it came at a huge cost. When some good friends, family and community heard about my opportunity, they rallied around me and instantly began fundraising for “Hope for Hope”. I felt so blessed. So lucky, So humbled.

I was fortunate enough to have had those events raise enough to carry me through quite a few trips to Philly and back. My husband and I have had to use a pile of savings to cover a few treatments that I’ve had too, all in the hopes of me having some sort of semblance of a “normal ” life. The good news is, it’s working. I haven’t had to walk with assistive devices since I began my treatments. My pain levels are usually tolerable and things are under control for the most part.

Sadly, there are a select few people who “donate” to a cause for show or for the reason of feeling entitled to something or truly, I’m not quite sure why. I was raised to give of yourself even when you have nothing to give. And I have done so at every opportunity. Yet ever since my fundraisers, people have treated myself, my children and family differently. They question what my children wear, where they go, what they do. Same holds true for me.

One precocious young girl said to my daughter in middle school a year or so ago ” Wow, you got new shoes? Didn’t we have to have a fundraiser for your mom like a year ago?”  People comment on the fact that my children play sports. Or the fact that they go out with their friends. They question where “their $20” went. It is very difficult for me at times to bite my tongue.

So when my brother called this past winter offering my children and I an all expense paid vacation to fly out to his wedding in South Dakota over the 4th of July, I was hesitant. Very very hesitant. I knew what was coming. The questions, the snide comments.. the looks. I’m so proud of my baby brother, he does quite well for himself. His now wife is also very successful. The fact that they could fly our entire family out to spend a week with them and house us all was beyond a generous gift and an opportunity I couldn’t pass up for myself and the children.

Our very first family vacation in over 10 years came at a terrible time. It was the peak of Legion Baseball season~My “Summer Love”- The Oley Topton Patriots. My family takes their athletic commitments very seriously. Missing a week would be unprecedented for a Distasio.  And I was truly enamored with this team. They were in the fast lane to a championship I was certain.

Sure enough, the minute I announced that we would be heading west, the comments started. “Oh, you’re going on vacation? How’s that possible”… as if it were anyone else’s business…

Though I was apprehensive, that week in South Dakota turned out to be just what the doctor ordered. I had really never traveled before. I had coffee on the patio with my sisters in the morning and dinner with my parents and the whole extended family in the evenings. It had been years since “the James Gang” was all together! The scenery was breathtaking. The creatures were beyond things I’d seen here in PA. The food and family were everything I’d hoped they would be. I even climbed a rock. Me. “the disabled housewife”.  Who knew?

Why am I sharing all this? Stop and think before you speak , people. If you don’t want to give of yourself, don’t. If you question peoples motives/ genuineness, then don’t be a part of something. No one wants to live their lives feeling like they owe you explanations for every single thing they do, particularly if they are already sick. It’s just added stress they simply don’t need.

My father is in the process of organizing another “Hope for Hope”.  God love him, he did it without even asking me. I initially told him I didn’t want any parts of it. Then our car died….. and in trying to fix/ get a new one I couldn’t even book my next treatment.  Not that it’s any of anyone’s business.

Then someone said to me ” maybe you could use Hope for Hope for a new car.”

I can assure you my funds went for my care and well being.  They are all gone now.

You can stop asking.

People really are silly.