I’m better with you

I swear at times the older I get the more absolutely clueless at life I become in ways.

For example. I have felt like I have a good handle on how to be a parent. Like, I got this, I’m good. I’m coming up on Thirty two years old now.

That’s garbage. There is SO MUCH MORE TO LEARN, not to mention so many more perspectives beyond my own that I am constantly taking in. Either from parents who have been there done that, professionals who have opinions, or just trail and error of my own! It’s all a process. Just like being Jewish, I learn how to be a better Jew or learn more about Judaism ALL THE TIME. You’d think after going through a FORMAL CLASS I’d know all I need right? A lot of people think so. You’d be DEAD WRONG in thinking that. Am I pulling out my three in one book of like, practical Judaic information so I don’t mess up the prayers lighting the Chanukah candles this year? You’re damn right I am.

Life is always smacking me in the head with DUH things. For example. I have always limited the amount of toys Alex was allowed upstairs because they drive me nuts. He has an entire playroom in the basement. Matt told me his mom had a rule when they were kids that all toys stayed downstairs. THAT, was a DUH moment for me. So, no more toys upstairs lol. It’s been rather nice to see him hanging out downstairs instead of all over the place.

I’ve known Matt roughly ten years now. There has never been a time I can’t talk to him, about anything. He’s been the absolute best friend I’ve ever had. I’ve logged more game time, webcam time, and phone time with him than any person I’ve ever known lol. Dating him has been this incredibly natural and comfortable. We have this spacial rhythm about us like we’ve been doing this forever.

Then it hit me. In a way, we have. In different stages of my life, he’s always been my rock. During break ups, surgeries, painful situations with family, hardships with life in general. Never mattered what it was. He was always there. Just from a few hundred miles away. That was always a constant. It was just here, present, in person for once, with his arms around me keeping me grounded. Holding my hand, lifting me up, and dealing with LIFE. It’s been the most natural thing in the world.

He’s the Matt I’ve always known and that’s all the same. The kicker though? I’m getting to know things and parts of him I never got to see. Like seeing the way he looks at Alex when he’s asleep in his lap. Or the immediate fear in his eyes when Alex gets away from him in a place he shouldn’t, and the split second response as he scoops him up quickly. The fatherly feelings. Seeing the level of responsibility in him immediately kick in when we have things we have to worry about and get done. I can’t explain what that stirred in me, but they’re things I’ve not had before. There’s more, but I’ll keep those things for myself. We’ll just say that despite it all I’m very happy right now, and I feel safe. Clueless though. Knowing someone so long, and yet missing pieces. Though I did know how much he loved family, I think I’ll chalk some of this up to distance. After all I’m not THAT blind, BUT, it’s melting my heart all the same.

I know that there is going to be plenty of things life is going to continue to teach me. I hope I’m around as many years as I can be for Alex, and right now I know that I don’t necessarily NEED someone to be my caretaker, but I want my life, the way that it is right now. There is a lot to figure out, but I see a good future involved in it.

There’s been so much emotion lately truthfully. My health is all over, divorce court is DURING Chanukah, I’m doing my very best to keep it all together. Then I got news that my Grandfather (father’s dad) passed away. While we weren’t incredibly close, I still loved him. I’m living in constant roller coaster mode at the moment and I’m really just waiting to land softly on the other side. I know it’ll all be okay, but I’m so thankful that I have Matt here. On TOP of all that I get to go meet his family for Thanksgiving and that is a thing I have not done in many years! Though the last family I met with a boyfriend I made a good impression I guess lol. They still talk to me. Come to think of it so does the first family I ever met. I’ve only done this twice before, so I guess it bodes well that they liked me. It dosen’t make me any less nervous.

I guess it’s back to the grind of life. I’ll try to remind myself to work past my goldfish memory, and enjoy the beauty that is my boyfriend as I get to know even more about the beautiful person I already knew. Before we know it it’ll be a new standard year ya’ll. Crazy right? We have beautiful Chanukah decor up. Soon I’m going to go back to posting on the YouTube channel, don’t forget about my twitter too, I’ll start actually using it.

Shari

 

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The Sabbath is the presence of God in the world, open to the soul of man. God is not in things of space, but in moments of time.

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A striking individual wrote the words above when speaking of a beautiful day in the Judaic week. Shabbat. Abraham Joshua Heschel, if you’re looking for some deeply interesting reads check out some of his books. In particular I have been reading “The Sabbath” and I have found it intrinsically beautiful. Like touching a part of another individuals pure love of their own Jewish soul.

For some who may be unaware, particularly because it appears so frequently, this day, is above all days the most important. What does it mean? What is Heschel is saying here?

“The Sabbath is the presence of God in the world, open to the soul of man. God is not in things of space, but in moments of time.” and for that matter, why above all else (save for one day) is this day so important? I have sought to explore this myself.

During my journey I had set a goal in mind to begin alternating the way we conduct Shabbat. Generally we spend our Friday nights immersed with our Congregation. With love, liturgy, community, and light. However, in my process I have met so many that, growing up, missed out on the home experience of Shabbat. Since, for a long time, our little guy at least is going to have to spend his time in the baby sitting room, we decided to alternate weeks at services outside the house and do some weeks at home so that we have home observance too. Myself having never conducted the Shabbat rituals at home before, and ever the perfectionist, wanted to have EVERYTHING in order, and be so well versed it would be shocking. Anyone who knows me wouldn’t be the least bit surprised by this at this point lol.

Of course, none of the things I had planned for the first time I did this happened at all. You know what though? It could not have felt more perfect, save for my husband being with us. I always had this idea in my head that I’d make this incredibly elaborate meal, that we’d have all the things we needed, the right table cloth, and even the havdalah set I have had my eye on to properly finish off Shabbat at it’s end.

Instead it was the first Shabbat after Chanukah. I missed very much the warmth that the candles brought, and the reflection that sparked inside me for those nights I will absolutely never forget. I missed my husband and was exhausted physically from driving around for all the hustle and bustle a Jewish holiday affair like that brings. I needed rest. I needed to stop. I NEEDED Shabbat, and if I’m honest, as my life progresses with Judaism as such an important part of it, I need those spiritual breaks more and more.

That, is why it is such an important day. We need that rest, just as there was rest in the creation of the world. I think even more so in such a weary world where it’s so hard to just rest. We are bombarded with so much all of the time from all directions all week long. It’s really difficult to set aside time to just cease. As a matter of fact, and as a side tidbit, the Hebrew for Shabbat, שַׁבָּת, has the root of three main Hebrew letters that actually mean to cease. I find Hebrew to be such an incredible language so everything about it and the meaning behind it to me becomes more and more meaningful as time goes by as well.

As I turned on music in Hebrew, made up my chicken thighs with their lovely spices filling the air of my kitchen, and my son helped me make the Challah, I stopped as I often do and drank in what was going on. As Heschel said, God is in the moments of time. I have to agree that is true to some degree. I feel God in a myriad of places, but there are many times that I know there is that presence. Watching the Challah rise and bake. Setting the table, lighting the candles, singing, doing Kiddush and HaMotzi, chanting the blessings over my sweet son and eating a meal with him, doing all of these things knowing that as he grows he will have all these as memories. My heart rose to new levels of joy that I’ve never known. I relaxed in a way I’ve never known as well. Shabbat was spent laughing, playing legos and puzzles, reading; both Jewish kids books and my own Torah study, and resting in the most positive ways I could. We marked the end of Shabbat with songs, and in our own way.

One day we’ll have all the right things, one day it’ll be more “proper” but one thing I have learned is it’s not about being perfect. Adonai does not expect perfection. We did all we could with what we had to show and we gave our praise to the one who brought us forth to this Earth, and to this moment, in this place. We will continue to do so at every step. I am so utterly proud of our family. Giving of myself all that I have is indeed probably the most important thing, or at least I’d like to hope so. As we are able, we’ll get better.

Is the Sabbath the presence of Adonai in the world open to us? I’d like to think that we have multiple facets of contact and presence with our creator at any given time. Certainly though, on that Shabbat, and the ones since, I have felt even more of a stirring and closer connection in my heart.

I know that I have my beautiful family, and have. I have lived with a darkness in my past before, and an ever aching feeling that I was alone in this world. I no longer fear the darkness, for I am a child of the light of HaShem and no matter how dark my world my seem or get I am never really alone. I never have been even when I didn’t know.

I end this post to you all with two of my favorite Shabbat songs. Thank you for sharing in my journey.

Our Endless Numbered Days, Wisdom Comes In Time

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“There are times that walk from you like some passing afternoon
Summer warmed the open window of her honeymoon
And she chose a yard to burn but the ground remembers her
Wooden spoons, her children stir her Bougainvillea blooms

There are things that drift away like our endless, numbered days
Autumn blew the quilt right off the perfect bed she made
And she’s chosen to believe in the hymns her mother sings
Sunday pulls its children from their piles of fallen leaves

There are sailing ships that pass all our bodies in the grass
Springtime calls her children ’till she let’s them go at last
And she’s chosen where to be, though she’s lost her wedding ring
Somewhere near her misplaced jar of Bougainvillea seeds

There are things we can’t recall, blind as night that finds us all
Winter tucks her children in, her fragile china dolls
But my hands remember hers, rolling ’round the shaded ferns
Naked arms, her secrets still like songs I’d never learned

There are names across the sea, only now I do believe
Sometimes, with the windows closed, she’ll sit and think of me
But she’ll mend his tattered clothes and they’ll kiss as if they know
A baby sleeps in all our bones, so scared to be alone”

I cannot get over the symbolism and beautiful undertones in this mans music. I have listened for so many years. A friend introduced me to his music when I was much younger. As I have aged, so has my understanding of things of course. As life continues so to does our knowledge and acquisition of it. I like to believe we become smarter as we age, though I’m not sure that’s true for all people. I have always strived to keep my mind sharper over time, seeking more to feed it. I am seeing every single song of his in a brand new light.

Granted I’m probably the last horse to cross the finish line on this one, though that may be, I’m fascinated. There is so much more substance than I ever knew in some of these songs. Of course “Jezebel” has always been easy to identify.

“Who’s seen Jezebel?
She was born to be the woman I would know
And hold like the breeze
Half as tight as both our eyes closed

Who’s seen Jezebel?
She went walking where the cedars line the road
Her blouse on the ground
Where the dogs were hungry, roaming

Saying, “Wait, we swear
We’ll love you more and wholly
Jezebel, it’s we, we that you are for
Only”

Who’s seen Jezebel?
She was born to be the woman we could blame
Make me a beast half as brave
I’d be the same

Who’s seen Jezebel?
She was gone before I ever got to say
“Lay here my love
You’re the only shape I’ll pray to, jezebel”

Who’s seen Jezebel?
Will the mountain last as long as i can wait
Wait like the dawn
How it aches to meet the day

Who’s seen Jezebel?
She was certainly the spark for all i’ve done
The window was wide
She could see the dogs come running

Saying, “Wait, we swear
We’ll love you more and wholly
Jezebel, it’s we, we that you are for
Only”

That said, it’s somewhat easy to identify that all of his music has ties to theology in some way (from what I read he is formerly Christian, and labels himself Agnostic currently). Thus of course not all of this resonates with me personally story wise being Jewish, but seeing the beauty in the artform is no less amazing. Knowing that a fair few of his songs were based in biblical reference was one thing. Seeing him weave this in such a way that songs I used to believe were simply about a man, woman, and a dress are not so, is quite incredible.

If any of you are unfamiliar with his work (Iron & Wine being the band name, though he does all the instrumentation and vocals) if you have ever seen movies such as Twilight, Garden State, or In Good Company, you’ve likely heard his songs. “Flightless Bird, American Mouth” was used in the Twilight series so it’s pretty familiar to most.

Sometimes things are not always what we first see, and sometimes, moreover, oftentimes, age gives us wisdom to see beyond what we once saw. Listen to music, listen again, read books once, twice, three times, then read them again.

During our last class we spoke of Ecclesiastes and the main question the younger people in class had was WHY is SUCH a sad book included in our reading for such a joyous occasion (Rosh Hashanah)? Now I’m not sure of everyone’s ages. I do know I’m one of the older individuals, and I do know for certain I am one of the only ones with children, I am still green in my years to be sure, though more seasoned than some. That said I felt it was an important inclusion in the readings. I listened intently as the Rabbi explained that the book is important at this time, so as to show us that we will leave this world the same as we entered it. “As he came forth from his mother’s womb, naked shall he go again as he came, and shall take nothing for his labor, which he may carry away in his hand.” Ecclesiastes (5:15). King Solomon realized too late in his life that all the materialistic items in this world would not matter once he had perished. Thus it leaves a depressing tone to the book to be sure, as there is a lamenting to the time lost. There is also a beauty in the realization of what is truly important. For that is the lesson taught. The bonds, the time we have here, the need not to look forward to work toward “what comes next”, the living here and now for those around us, that is the importance of it during Rosh Hashanah and even more during the reflection time coming into Yom Kippur in my personal opinion. In assessing your shortcomings, and the things you wish to improve upon, it is ever important to recall what truly matters in life.

The point I’m making on it is this, go back and revisit things from the past with new eyes. You never know what your new perspective and the wisdom of age will give you. Fresh ears too. As we move forward in life we grow, and that growth unlocks so many things in us. Push ever harder to be a better version of yourself, more giving, more loving, kinder, harder working. Not just during the times of the year we are told to do so, but all of the time. If we all did the world would be a much better place for it. Recall that life is fleeting, we are small in the place that God has created for us, and we return to Earth once we are no longer here. Marvel at the beauty around you. Drink it in. Live in it, while you can, for as long as you are given.

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Always learning, always seeking knowledge

Credit to MyJewishLearning

I am forever surrounded by books! Though I couldn’t be happier about it, we are ABSOLUTELY going to need another bookshelf hahaha. So my journey presses on, and I push forward. Learning Hebrew has been such a treasure. To stop and think of what the letters under my fingers mean as I learn them and recite their sounds aloud. To process in my mind the weight they’ve carried in the past, through generations of Jewish communities. The beautiful and holy words that have been carried in this language that is so utterly complex, but fascinating beyond measure.  It will take an immense amount of study to fully speak or understand everything in this language, but I figure if I could do it to learn German, I can do this over time. Beyond that, German was a hobby and interest based partially on my interest in Judaism in the first place.

The more I learn and immerse myself, the more convinced I become that my life has been a series of necessity. I have always been convinced that the horrible atrocities suffered in my life had been just scathing misfortune. Now more than ever I feel that my life was and has always been a preparatory event for multiple things. Just as people in general were not immediately ready to accept covenant with our creator, neither was I. Nor was I ready to accept the things I have experienced, or the reason for most of them. I am slowly beginning to understand the purpose for them. I fully believe my life as it stand is part of that reason. My family, and the life I am living. Without the experiences I went through and the things I endured, I have never believed I would be the person I am, and I have always said that. I am strong, and I do many things well. I would be ignorant to ignore the hand that I believe played a role in my life from time to time.

I took some classes recently at a learning event and the Rabbi from my Congregation made a point. Throughout history there have been times that the Jewish people have been saved, protected even, when they would have otherwise met with great peril. If any of you know me well, you know my life has been more than perilous. There have been so many times, a great many, that my life could, and should have ended. Somehow though, it did not. I was kept safe. Even when all those who were supposed to protect me had left me behind, I had a hand on me from somewhere. I have always been kept safe, and now, I owe it to everyone in my life, myself, my husband, and child to make the most I can out of the life I’ve been given. I will learn all I can. I will help others as much as possible, and I will be as good and kind as I know how to be. That is what I have, and that is what I am called to do.

With the month of Elul upon us, and my class tonight being about Rosh Hashanah, I have begun spending a lot of time on introspection. Shabbat services last week included the sounding of the Shofar, and the start of Sermon-In-Song which was absolutely touching. Every time I attend it’s like observing a living, breathing, captivating work of art. I can’t help but to begin to shed tears. The depths it adds to the feelings in my heart on my own spiritual journey is something I cannot put into words. They outright escape me, but suffice it to say it’s awe inspiring.

 

Give em land with a good view, to start a family

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Things in our country are tense right now. A lot has been going on the last few months and as someone who follows politics pretty closely, and who has been a pretty avid follower of it since I was in high school it’s all hit pretty close to home. I have seen a great deal of hate, sorrow, and ugliness in the days following the presidential election, and I feel the need to turn away from these things.

With some of the important holidays just around the corner I’ve felt it’s important to reflect on the things I’m thankful to have. Before I know it Alexandr will be three years old. His Birthday is in February, and I cannot believe he is growing so fast. His mind amazes me on a daily basis. My husband is my love light still and that flame burns with a ferocity that I’ve never known in life. I could look into his eyes for hours. Pretty sure he could do the same with me, though I cannot pass words from his lips in his absence, I think I could make a close appraisal of his level of affinity.

This year will find this house void of company come Thanksgiving. The sounds of my husbands voice and laughter will not be here. As a result, our footsteps shall not grace it’s floor either. Alexandr and I will do what most people do, and for once fit into a strange societal standard I’m not accustomed to meeting. We shall travel for the holiday. We will make new memories with my wonderful sister, and her beautiful children. We will forge fresh beginnings, and I’ll be invited into the warm and open arms of family. We’ll cook turkey, drink wine, and share our lives in a way we are not always able. I am grateful for the opportunity.

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Not all people are as blessed as I, nor do they lead as warm and loving a life as I do.

I face challenges, with my health, and my sons.

I do not lay my head down at night worrying about the roof over my head, or if there will be food to eat in my home anymore, I do not worry if we will be able to provide an ample Christmas to our child. The contrary, I wonder where we will put the new gifts he will be provided!

I realize now more than ever, that the love, and family that I have, albeit small compared to some, is so warm and strong, that I could wrap up in it like a thick blanket, and carry it with me. It would shield me from so much harm if I would let it. That is a true blessing, and for it I am incredibly thankful.

 

Constantly Mourning, and now I am 29.

In front of you, you see a woman who us struggling to maintain, one who, from day to day,e is doing everything she must and can to hold it together. While you may see the smile on my face sometimes, it all too often masks the complete anguish and turmoil I am in at this point.  Yes, that is a cane, yes i need it fairly often now. I even have a handicapped placard for the car I am no longer allowed to drive.

Yesterday I turned 29 and while my Birthday was the best I have ever had, some part of me is the saddest I have ever managed to be. I feel more of a burden and hindrance than ever before to my son and husband. In the past four months or so I have lost more of my independence than I thought possible by this age. My amount of medications is staggering to a degree that is officially alarming. Now that I am epileptic that takes a large chunk of me doing certain things without help, like driving, away. I even have a wheelchair on standby should I need it as well.

I miss being 19 sometimes, and sometimes I wish that Zane had met that version of me. So full of spit, fire, grit, and determination. Everything mentally I am today but with a bit more of an ability to carry on. Then at least Alex and him would have gotten more out of the less chronically ill me than they are now.

It is incredible to me to look back on all I am and wish for so much more. I always knew I would likely regret choices, but I would say that my choices led me here and I would not take them back. Now my real regret is not living fully when I had the days in front of me to advance and swim in. I had opportunities on and off my whole life to push myself as hard as I do on ky good days now, but man, the things I could have accomplished. I feel as though I should have made better use of the time given. I suppose everyone probably feels that way a bit.

I cried yesterday, and I cried because I know that I will likely never be what I once was and yet again it is time to lay to rest another version of myself that I will miss.

I do not know how many more years my precious life holds. I do know this.

When I wake up each morning I am greeted by a man who tells me he loves me and who makes sure I take my medication, and get food after I am up and about. Then I get to wake up our kid, who, despite his many issues is always at his door to greet us with a “Mama, Dada!”. Sometimes we get hugs, sometimes we do not. I just remember to drink in the mornings and nights that I do get them.

Thais birthday was the best of my life, hands down. It was also very sad. I have a feeling moving foward in my life that might be normal for me. For those of tou close to me, I love you all very much. Here is to next year and making it to the big 3-0. ( My cake and gifts thia year were awesome.)

Goodnight Everyone,

Shari

 

 

 

 

 

 

 

Being a Spoonie, and what’s wrong now?!?

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As many of you know, it’s believed that I have Lupus, though my diagnosis isn’t officially on paper yet. I go to see the doctor that will confirm this in July. This means that I am chronically sick. I am never fully healthy and I don’t ever “get better” which sucks. One of the most common terms tied to chronic illness is being a “Spoonie” this is often for those of us who have a hard time functioning on a daily basis. (Hang with me for those who know me I’m sorry if I mess this up you’ll read why I might be writing funny).

So the idea is that everyone has energy, and normal people have an unlimited amount. Those of us who are sick, are limited. This is measured in “spoons” kind of like teaspoons. Those of us who are sick, when we run out, we’re out. We only get so many a day and each activity uses up some of our spoons. You can read more about it here.

The Spoon Theory written by Christine Miserandino

So recently things took a large turn for me, on the 10th of March I ended up in the ER with some really severe pain. They treated me with steroids and the norm, did blood tests and everything came up the way it normally does. Not normal for a normal person, but semi normal for me. I went home, took the meds, rested, and immediately started to improve. Then it came time to come off the medication and things went to hell in a hand basket.

About a week later I came off the prednisone steroid med, and as soon as that happened I started to swell up, badly, and then my joints and muscles became so stiff that I could hardly function, I called my doctors office who could not fit me in, they told me to go back to the ER. When I returned they immediately gave me more steroids as well as some other medications to fix all the issues. They began to determine that I was in a flare. The next morning I saw my doctor who decided to continue to let me flare on and off until July when I see the rhuematologist. I’m thinking of switching doctors because he believes that treating me is a bad idea, instead he wants to wait until the problems worsen, and then try to fix them.

After all this on the 24th, I had a seizure, the first time I’ve had one where my body twitched. I ended up at the hospital again and they determined it was a simple partial seizure, they gave me ativan along with some other medication including more steroids because I was still swelling, and antibiotics because my bloodstream was showing antibodies as well as my white cell count being high. The next morning I saw a doctor in my doctors office, he is getting me a wheel chair, since I have now lost my ability to walk, the vertigo is too bad on me, at the current moment. He’s sending me to a neurologist to check me out with an EEG as soon as possible.

Since then I have had a petit mal seizure and a grand mal seizure, my very first one of those. I still cannot walk and after the grand mal seizure I was paralyzed for a good 10 minutes. Every seizure has been preceeded by some aura, from me smelling onions, to seeing our cat as shiny, to talking about random ducks and ladies that aren’t there.Everything about this has been scary as hell, but this is where I am today. I will continue to fight. I have no idea what my future brings or how many of you wanted to know any of this, I just felt like letting it out and a facebook post wouldn’t do it. I’ve let some of you who are closest to me know via private message what has been going on, and if you want to know more please feel free to ask me.

For those that are wondering what we think is happening here is your answer. Lupus as some of you may know, attacks the healthy cells and tissues in my body much like your immune system would attack a cold. It seems as though it’s beginning to attack my brain on top of the other organs it’s been attacking. This would explain why i am beginning to have seizures. We don’t really know anything for sure right now and right now I’m just in limbo. I’ve been so groggy

Zane has been amazing, he’s been taking care of everything, the house, bills, cooking, cleaning, Alex. Everything. I could not ask for a better partner in this life, he’s incredibly supportive and even though I know he’s just as scared as me, he’s there, 100%, exhausted, and fighting right by my side.

These boys are my strength. Happy Easter to you all.

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