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Christmas 2008 in Montclair, Christmas Eve Candlelight Service, Family, Great Mary, Healthy Foods I <3, Journaling, Lupus, Memorial at First Presbyterian of Auburn, My Weekly Chemo Injections (Oh Joy!), NJ, The Awesome Man In My Life, The Holiday Season, The Ocean, Writing

Great Mary <3

So, yesterday would have been my amazing Grandma’s 95th birthday. 95. Can you even fathom living that long? Honestly, I can’t. I turned 34 this year and even that still doesn’t seem possible to me. She died just a few weeks ago from complications after having a stroke, so it was a tough day for pretty much everyone in my family I do believe.

I was very “stuck in my head” and mourning a good bit of yesterday, so I never got around to posting about it all. I need to address it and be thankful for all of the time that we had with her, though. So here I go.

She was an absolutely exceptional woman in every sense of the word. Smart as a whip, and very funny too. She would surprise you the things she knew how to do, also. For Christmas almost three years ago now, my husband Christopher and I flew up to spend the holidays with her. Despite the “brain tumor” scare two days before we flew out (I didn’t have one – but it was ridiculously stressful – story for another time though!). Well, we went anyway because I felt VERY strongly that this would probably and most likely be my last chance to do something like this with her.

See, I grew up in the south way too far away from my Dad’s side of the family in California and my Mom’s side of the family in the NYC/NJ area, and I had never gotten to spend Christmas with her but one time my entire life and that was down in Florida the year we got married on New Year’s Eve almost five years ago now. We ended up living as southern “transplants” the majority of my life because of my step-Dad’s job. His family was in Oregon so we never got to see them either, really.

Point being, I wanted to spend Christmas up there with my Grandma and knew time was running short. I wanted to see NYC all decorated for Christmas. I wanted to show Chris where I grew up spending my summers at my grandparents’ beach house in Mantaloking, NJ. I wanted to be with her and be there for all the fun family get-togethers first hand instead of just seeing pictures like I had my whole life. If there’s one thing I regret in this life of mine, it’s that all my family is so far away and I wish I’d had that extended family “thing”. I wish I’d been in all those pictures. I still remember getting pictures of my cousins Nina and Lesley with the wishbone all the Thanksgivings they’d all spent at the shore house. It would make me SO jealous I wasn’t there with them, even as a little girl.

I know regret is a pretty much useless emotion when you really get down to it, but fact being I do regret being so far away from BOTH of my families on opposite coasts. It seemed weird and unfair that all my friends had grandparents, cousins, aunts, uncles all in the same town or a quick car ride away. I was definitely always very in awe of it all, especially because my best friend Amanda’s grandparents lived right across the street from them! And her cousins were right down the street too! I never had that and I wish I had because I think I have the most amazing and interesting families and I have missed out on SO much.

No amount of 30 hour road trips to spend a month at the shore in the summer seemed like enough time. The older we all got, the shorter the trips would be because we had things like summer camps and then the trips even ceased completely when I went to college or I could no longer go along because I was in summer school. I’d always wanted to just BE THERE. And three years ago now I had that opportunity finally, and I am so very glad that I did. It was everything I’d hoped it to be, and many things I’d never expected all at once. But I was THERE. Right in the middle of the pictures, smiling my best smile and loving every minute of it <3

I still can’t believe that she’s gone honestly. And now because I am back on weekly chemo injections to help with my Lupus, I can’t even go to her memorial this next Monday. It truly sucks, but I just know that if I did I would end up in the hospital. My health seems to be teetering on the “unhealthy” brink… and I know this because of how I feel in comparison to other times since my diagnosis and due to the way I’ve been feeling and due to my blood work results. My chemo dosage amount was upped to almost double the weekly dose a week and a half ago now, so it’s DEFINITELY not the time to be stuck in airports and on planes with sick people everywhere at the busiest time of the year to travel. I know this logically, but it still sucks.

So yesterday I called First Presbyterian Church of Auburn. I am not a regular attendee either. Honestly I just go to the Christmas Eve candlelight service every year. I grew up going every year at First Presbyterian in Vicksburg, MS and it’s the only time and place I ever feel the PEACE ON EARTH you are supposed to feel this time of year but I honestly am usually lacking. Well, I explained my situation to the sweet preacher Dr. Covington and he offered to let me come sit in the chapel and light a candle and even offered to sit and talk with me and anyone else who comes with me. It was such a nice, warm feeling that I haven’t gotten in a long time from a church honestly. I am so glad to have something planned for that day instead of just sitting around feeling left out. It is a huge relief and I am so thankful for their kindness!

Truth is… we can’t afford Christmas this year, or last year, or the year before honestly. My stupid medications and doctor visit co-pays and the fact that I haven’t been well enough to work for two and a half years now royally blows. We had like $300 to spend the entire two weeks we were up in NYC/NJ three years ago, but we made it last somehow because we stayed with family. We even got to go into the city twice. We took the bus (cheap), just walked around (free), took pictures (free), got calzones from a cheap but delicious pizza joint. Don’t let anyone tell you that you can’t do NYC for cheap, because if you have to you really can. Point being, Christmas isn’t what it is to most people for us.

I really don’t understand the greed/capitalism of the season and everyone running around like chickens with their heads cut off. Mostly because I can’t participate, but also because I’ve realized it’s all a bunch of phony baloney. I’m on very strict dietary modifications, so I can’t even eat any of the snacks at holiday get-togethers either. I also don’t know who in that persons household had flu last week and if I’ll get exposed to things other healthy people can fight off that I just can’t. So it’s a very, very different scene for me than everyone else.

But I really don’t mind anymore and am not asking anyone to feel sorry for me. I’m simply stating how different life is for me than for most because of my health… and that through all this I have come to realize that the Christmas Eve candlelight service and that amazing feeling I get from it really IS the reason for the season. And I feel blessed that I get to see through all the artificiality to the core. It’s strange how life works, isn’t it?

Well, this was more than I ever planned to write… but obviously needed to vent a bit. And if I can’t do it here where can I do it? So I will wrap it up and promise to tell more stories about my trip to Grandma’s house in separate posts because I don’t ever want to forget anything about that trip.  Also, I challenge you to try to see through to the real truth this time of year too. It makes all the difference in the world when you can and do.

<3 HopeBetweenTheDreams

PS – I know that if we had kids we’d have to participate moreso than we do, but honestly our kids all have fur and all they care about is being with us!



About HopeBetweenTheDreams

I have this crystal-clear memory of picking out my first diary when I was five years old. It was Hello Kitty and had beautiful gold edged pages that I still have in my possession thirty-one years later crazily enough. I remember how angry it made me when my older brother would pick the lock and make fun of me for the "secrets" I'd written inside. But who was I kidding anyway? Those flimsy locks couldn't keep a toddler out. So I guess you can say I developed a strong sense of importance about my written words and memories from a very young age. I continued to keep hand written journals my entire life (and will put some hilarious excerpts in here from time to time for sh*ts and giggles - as well as share some of the things I'm most proud of having written). In November of 2003 I stormed the world of LiveJournal with my first online blog and made some of the closest friends I've never had and still have honestly. I was blown away by how much someone could care about me whom had never even laid eyes upon me in person, hugged me, or been to a birthday party of mine. My friendships "in real life" honestly didn't hold a candle shockingly and I slowly began to see this. Especially when things got tough in the years ahead... I was diagnosed with Lupus (SLE) in October of 2009 and I started a new journal on Blogspot just so that I'd have a separate place for writing about what I was going through. For some reason I felt a deep-seated need to compartmentalize my health problems from the rest of my life and other thoughts and ideas. Which anyone with a chronic illness knows (or will soon enough learn) is really an impossible feat and takes way too much energy you already don't have. But honestly neither blog has been used much for years now, which in turn brought me here to you. Sporadic posts here and there just aren't cutting it. So I think I need a fresh start. A clean slate. A new crowd. I will welcome any of my old pals with open arms, but I need a new place to call my own. One with no expectations of who or what I used to be... one without thousands of entries that are my past weighing me down. For now, I'm going to try the anonymous/open blog thing on for size again and see how it goes. I've got a lot on my mind and Fakebook just doesn't seem the appropriate forum if you know what I mean. And I know that you DO know what I mean ;) So welcome to my world. Open minds only, please. It's my one and only rule! ♡♥♡♥ Oh, and please play nicely while you talk amongst yourselves. Discussion and debate are more than encouraged and are some of my favorite things as you will learn, but we can all do it in a polite and respectful way. One of the best life lessons I have learned over the years is that just because someone has different beliefs or is from a different walk of life than you does NOT mean you can't learn a lot from them or become great friends. If you keep your hearts and minds open I promise you that this great wide world will surprise and amaze and shock the hell out of you every single day. ♡♥♡♥


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