Tag Archives: Family

The Sort of Hope Whose Son Is 17

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Jan 5th will always be one of the most special days to me.

It is the day that I gave birth to my son, Nicholas Michael.

Last year, for his 16th birthday, I made him this video. It has taken me a whole year to figure out how to convert it from “just tv viewing” to other viewing. At the risk of someone complaining ” Well, there’s 12 minutes of my life I’ll never get back.” I do realize that videos like this are rarely appreciated by anyone other than the family involved. I enjoy viewing things like this for more than just face value. I like to watch the evolution of film. The evolution of photography, and of someone’s talent. I like to watch how a child evolves, too. I like to see how their friends have grown as well.  Sometimes, people just take things for what they are worth and forget to actually ‘look’ at them.

Anyway…

I’ve always said that my son is the sort of child that I could wake up at 2 am and he’d smile at me and say ” what do you need, mom?”  He’s truly my SONshine.  My constant source of strength. Nick is quiet, but he is funny.  He is a lot like his father in that way.  He is talented, smart and handsome. He is strong, but gentle. But don’t ask him to sing!

Nick will flash me his smile with his dimple and I feel like I want to hand him the world. ( If  only I could). He works hard. He has a goal and I admire his determination.

Nick was 4 when I got sick. He probably doesn’t even remember a healthy mom or the things we used to do together.  And that’s ok. We’ve done plenty of different things together since then. He’s also grown into a more compassionate, empathetic, understanding young man because of my condition. So in a way, I guess it’s not all a bad thing.

So, before I cry ( again),  Happy 17th birthday to the biggest and best surprise of my life.

The Jolly Sort of Hope pt 1.

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Ever since I started dating my husband, the last Sunday before Christmas was always one of my favorite days. His mom and step father host a party that is filled with family and food and children. Santa even comes to personally give all the little children their “early drop-offs.” Everyone gets a chance to sit on Santa’s lap and tell him what they wish for and/or have their photo taken. For as long as I have been married ( 16years) there has never ever been a shortage of small children in this family. They are the joy of Christmas for me. How wonderful it must feel to be able to host such an event! Sadly this year, for the first time in my life with my husband, I couldn’t even make it to the end of the night. Thank you RSD.

Normally we arrive way before everyone else and stay way past everyone else. It’s time we don’t often get to spend with some of the people at the party. Plus I always felt like I needed to help my MIL as much as I or my family could that day. It’s a huge undertaking for one person. But I’m sure worth every moment once you see the smiles on the children’s faces as they see Santa come down the stairs. Last year I positioned myself perfectly to take pictures of just that. The little children as Santa arrived. Sheer Christmas magic!!

This year I photographed the event with my broken 18-105mm lens. The focus doesn’t always focus and the zoom doesn’t always zoom.  Challenging at best. Like many of my mentors, I don’t shoot with flash. Indoor lighting and I are not the best of friends. That being said, I’m not too terribly disappointed with the results. It can sometimes be like a mini press conference when the children hop on Santa’s lap. But I did get most of the kids as they sat on the guy in the red suit’s lap. Some didn’t stay long enough for my fickle lens. Some did. Some families looked at other people who said “say Cheese” and  sadly you can’t go back and get a do-over.

So as my BFF has been heard to say to her 2 boys ” you get what you get and you don’t get upset.” ~ In any event, I hope no one get’s upset. My in law’s Christmas party never fails to help make me jolly. Holidays are about families and love.

Merry (after) Christmas!

The Thanks and Giving Sort of Hope

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“Nothing says loving like something from the oven. ” ~ How many of us have some love waiting to fly out of our ovens right now?  For that, I am thankful. For the oven, for the electricity, for the family to eat the food and for the food itself.

Wanted to take a moment to express some gratitude to my new found blog friends on this holiday all about Thanks… and giving.

I can’t believe it’s only been about 12 weeks for me since the discovery of this word press world. I am truly grateful for the warm reception. You all have exceeded my expectations of this thing called blogging.  I have discovered some incredible talents around the globe as well, making it even more enjoyable for this gal to rise and shine every morning, and for that, I am also quite thankful. For your continued giving of yourselves, we others are so blessed.

I have had such a wonderful week. I am now officially under one week until my next treatment. So very thankful to all of those who have helped distract me to this point.

I did an incredibly fun photo shoot with my very talented friend Kevin Brett from Soul Imagery. Can’t wait to see the results. Went so far out of my comfort zone. Ditched my stuffy conservative self and even donned some tiger striped spandex and crawled into an antique claw foot cast iron tub! Many thanks to my uber talented big sister Holly James for transforming me from plain jane to something else. ( not sure what?) Very thankful for people like Kevin and my sister who share their talents with me. Willingly.

My oldest has passed his driver’s license test and is now driving on his own. His first trip sans adult driver was a trip to the not so local McDonalds with his sister. Watching your older most prized possession drive your younger most prized possession out of your driveway is a very surreal experience. Watching them drive back in, however, is one of the best feelings in the world. I am thankful for their safety. I will continue this thankfulness every day for the rest of my life.

I saw an incredible sunset this week while I waiting to pick Natalia up from Cheer practice. I am very thankful that I can still see. That there are still sunsets and that I can still take pictures. ( even though this was only a cell photo.) I am thankful for colors so beautiful that it is impossible to miss their glory. I am thankful for things like smart phones that keep me in touch with my friends and family and allow me to take pictures on the fly. What would I do if I couldn’t take pictures 24×7? Or text!

I am thankful for things like cappuccinos, and hugs and kisses, and baseball games and gymnastics and cheer. And children with talents. For children’s laughter and for smiles that light up a room.

I am thankful that I can still get out of bed by myself every day. For whatever amount of time is possible, it sure beats being stuck there all day. And for the days that I am stuck there, I am grateful for really soft sheets and pillows that don’t hurt my ears.

I am thankful that when I told my children to clean out their closets and their drawers because the people who were affected by Hurricane Sandy lost everything and needed clothes, that my children didn’t miss a beat. I am thankful that they understand Giving. Many teenagers these days simply don’t .

We have had a tradition of “Giving” on Thanksgiving since my children were little. I always made them pick a few toys that they were willing to part with for the Children’s Home or another charity. I always wanted them to understand how to be Thankful for what they did have.

I am thankful for so very many things – friends, family, LOVE, patience and understanding, but I promised myself this wouldn’t become “one of those” blogs.. and I fear it’s starting to become that.

Happy Thanks and Giving my online friends.

~ Remember  ” There is always, always something to be thankful for” ~ I think that’s an Annon. It’s a long time fav. ❤

The Shady Maple-d Sort of Hope

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**16 Days til my Philadelphia Freedom!

Today marks one of my favorite days. It’s how the James Girls kick of the holiday season. Dawn breaks and Dad throws us all in the car. We then head to the place where cholesterol parties and desserts dance, otherwise known as The Shady Maple Smorgasbord.

Dad is the only male allowed and girls may only join provided they are of the James lineage and only under the stipulation that they have reached high school age, as it is often times a rated PG-13 ( at best) function. {*refer to an earlier blog entry about my obsession with balls. This obsession seems to just flourish around the holidays as balls are found around every corner and my sisters really feed into my obsession.} This year we welcomed my Natalia into the sisterhood.

The ride to Shady Maple is beautiful. It’s all country views. Cows, farms, green fields. Endless blue skies today.

Veteran’s Day was observed today for some schools today so it was a bit more crowded than our normal breakfasting/ shopping excursion. Mom seemed a bit disturbed by it but dad didn’t seem to mind. 

Little Sister Rachel>-> who will not be pleased that I posted this with Mom who shocked us all with this outlandish behavior. Mom is ever the lady.>–>

^Holly , the big sister with Dad. Holly is a poser. Dad, The Marine and proud Veteran, never stops eating long enough to partake of such shenanigans. Eating is serious business for a Marine. Many a time he has regaled us with the tales of having to eat maggots out of his helmet along with his food and therefore he is always just grateful for food in general. Daddy is delightful at dinner. 😀

During breakfast Holive entertained us all ( as usual) in the way that only Holly can. Which won’t be funny to anyone else so I won’t attempt to try to relive it. Suffice it to say,   Holly is fascinated by the most mundane little things and can make just about anything funny. Today it was a collapsible brush. Who knew such a cheap thing could provide such entertainment?

After we got our feed on, we headed to the gift shops to spend what my dad calls “all of our egg money” , which is dad speak for all the money we saved all year for this very day.

^ HOPE is the thing with feathers. ( Emily Dickinson fans ? )

Holly found a HOPE ornament with a ball in the O.  SCORE.  Posed in front of some fuzzy white and red balls for me, too!

.. and the winner of the strangest thing I saw all all day goes to this piece of blown glass poo… I mean slug. (Apologies to slugs everywhere).

We laugh, we eat, we shop.We laugh some more.  This close to my next treatment, it’s going to take me at least 3 days to recover from our excursion, but I don’t mind. Today not only signifies the beginning of the holiday season for me, it also reminds me how lucky I am. I’ve got sisters. Great, beautiful, kind sisters and I still have both my parents. Sadly, I don’t spend enough time with either of my sisters or my mom and dad, which is really quite a shame. But the time I do spend with them is always filled with laughter and love. And for that I truly grateful.

My fav jam from the ride! You gals “made my day”.  ❤

The Sort of Hope Who “Benefit”-ed .

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^ A collage I made of some of  favorite moments from my first 10 day Inpatient Ketamine Infusions, April 2010.  As luck would have it, my little (though much bigger) brother was in Philadelphia at the same time on business- got to see him for the first time in yearrrrrrrrrrrrrrs. Didn’t remember it too much sadly 😦  Two AMAZINGLY generous , selfless women ( who also both have RSD!)  Heather and Susie  flew in from their respective states, Rhode Island and Texas at their own expenses to help me through my infusions. Susie took the first week, Heather took the second. My first friend in this life- Scotty also lives in Philly and I got to spend some time with him ! My mom and dad were with me off and on. Mom mostly on, dad mostly off. My sisters stopped in and my family (bottom center) stopped in over Natalia’s sectional weekend which I got to watch via webcam- the gym skyped me in ( got special permission) because I wasn’t allowed to be there during treatment and it broke my heart. I had never missed any of her competitions prior to that.  My husband and my children were not with me during my 10 day. I only saw them that day and again at the end of my infusions. We did skype several times during my treatments when I was lucid enough for conversations. Though Natalia will tell a completely different story.

That first round of infusions was made possible by the kindness of my facebook friends, friends in this incredible community , people from my churches ( old and new ) and yes, even strangers.  The money from those fundraisers carried me through to this year. I turned a few special treatments away. But basically, we made it work. And I am so very grateful.

Hope for Hope basket bingo was held yesterday. I can’t even begin to describe the emotions that go along with being on the receiving end of something like that-a charity event of that magnitude. How do you even begin to thank the people involved in helping to keep you “in the game” for the next year or two ?  for the countless hours of work involved in organizing something like that? The blood, the sweat and yes, the tears. (though  most of the tears were mine!)

To my delight, my event was like a long overdue high school reunion. Most of the people who came out to support me were friends from my high school days, some old friends from church and family of course, and some friends of my parents that I hadn’t seen in quite a number of years. It was like “going home”.

I was overwhelmed with the generosity of local merchants and especially my baseball family, Berkshire Baseball who went above and beyond for myself and my family.

I am still trying to digest it all.

The organizers of my event, Trinity’s Helping Hands, were even generous enough to allow me to save the leftover beverages and non perishables to take to the event that I help out with in a few weeks called “The Cups of Compassion” for the homeless people in the city of Reading ( I blogged about that previously.)

Though I still have mixed feelings about having allowed my father to have spearheaded this for me, I felt a little bit better after remembering something I read rather recently. I shared it as a status on my facebook yesterday. It’s from a book that a friend of mine wrote. His name is Dan Clouser. Dan is the president of Berkshire Baseball and one of the most generous people I have had the good fortune to meet in this lifetime. Mr C is a neat man. He is generally quiet and very unassuming. But his smile and laughter are so contagious.  His book is called ” The Beauty of A Diamond ~ Through the Eyes of a Coach.”  It is a must read for parents, coaches, players, heck, for human beings in general. 

Anyway, it goes something like this ~ “The important thing to understand is that everyone in this world has been helped by someone along the way. No one here can simply go it alone. We may try from time to time, but we all depend on someone along the way. The sooner we all understand that, the world will be a much better place.” ~ Dan Clouser  The Beauty of a Diamond , through the eyes of a coach

Yesterday was a very long day, physically and emotionally. As I (literally) crawled into my bed, I fluffed my pillows and got distracted by a lovely bright red ladybug. I always seem to find them on “special” days….. Or, perhaps, they find me.  ❤

The Vacationing Sort of Hope

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“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.