Nonna's Neuropoetry

The musings of a small soul searching for holiness in the daily grind…

A Graduate and an Upcoming Birth…

Sunset on the Mountain
I just wrote a huge post – literally. And when I hit publish it completely disappeared – the only thing that remains is the title.

So here’s a brief run down of what I said:

The Professor graduated last June -earning his high school diploma from West River Academy.
Graduate
He’s now spending 13 hours a day at the monastery in a kind of apprenticeship situation. He works and prays with the monks learning everything from masonry to gardening, and he’ll be helping out in the publishing branch of the monastery as well with editing and such.

The Philosopher is getting used to not having his brother around as much. We went to the pound and brought home a sweet dog to help keep him company. :)
Pat-me
We brought her home on the Feast of St. John the Evangelist and named her Pat-me for the island of Patmos that he spent so much time on… Of course, “Pat-me” is a great fit for her because she just wants everyone to “pat” her all the time. She’s the most loving, sweet little personality – a great fit for our family, and such a blessing.

The other news I wrote about was the upcoming birth of my niece or nephew. My little sister and her husband are going to have their first baby soon, and if all goes according to plan, I’ll be able to be there.
Three Siblings
I can’t believe this baby girl is about to have her own baby!

I had written more, with my gratitude posts and all, but I don’t have time now to re-do it all. I’m just hoping this goes through this time…

It’s all Grace… even major computer glitches… :)

Lord have mercy…

To Belong…

Birthday
There’s an article that’s been going around Facebook the past couple of days and I just had to mention it here. It’s about the reality that 80% of families with “special needs” children do not attend church anywhere. This does not mean that they don’t want to, many want to – but they do not feel able to, or do not feel wanted. There’s a reason why this article has been all over my Facebook feed — it hit way too close to home for the “special needs” community… in fact, everyone – every single one of us – could relate to it. Those of us who have pushed through the hurtful looks and “outsider-ness” in order to raise our children within a faith community are actually rare. Which probably doesn’t help us become any more visible. Afterall, if there’s only one family in a church body with a “special needs” child there’s really no incentive to try to include them — if the numbers are higher then suddenly they become a “ministry opportunity”.

The reality is if we are going to create a welcoming environment for “special needs” families, the families themselves are going to have to come together and make it happen. Unfortunately, we live the intensity of the 24/7 “special needs parenting” lifestyle – special diets, running to different therapies, evaluations, IEPs, doctors, alternative care options, hospital stays, therapists, therapists, therapists, every day is a whirlwind and nighttime doesn’t guarantee sleep. Is it realistic for us to find ways to minister to each other in the midst of all this? But who else can do it like we can? Who else really understands what our lives are like, and who else is able to hear us? We are an invisible, growing statistic. We are numbers, not humans. We are “other” – we are isolated by the nature of what our families are. We are the obvious ones who can reach out to each other.

But how?

There are things that faith communities can do to make attendance for special needs families realistic, and most of the time just a little bit of education, a little bit of understanding, is all that people need to be able to welcome “others” into their community. What if there was an area in the church – not a place to isolate and contain, not a place with a negative feel – what if it was a place where sensory stimulus was more controlled? What if it was a positive place where many families with children of different abilities could all sit together? What if there was a basket full of sound cancellers to share – like some parishes have a basket of headscarves to share? What if there was an older couple there, a couple who had navigated the waters of community life with special needs children for years who were willing to give other young families a bit of encouragement? What if our children were recognized for their positive attributes rather than their negative ones? What if our kids could be made so comfortable that they wouldn’t start crying as soon as they realized we were going to church? What if mothers didn’t have to go home crying because someone told them it was their “lack of faith” that was keeping their child the way they are? What if a public meltdown was cause for compassion and understanding being poured out upon parents from their cohorts, rather than a cause for disapproving looks and rude comments that reinforce “outsider” and “insider” status? What if we could all belong in the Family of God?

Because the Truth is — we are all made in the image of God and it should be our goal to grow into His likeness. Our children may not be “normal” – they may have different physical or mental abilities – but they are just as capable of spiritual growth as anyone else if they’re given the opportunity. My boys are not like neurotypical kids – but you know what? They are kind, they are simple hearted, they are compassionate, they are forgiving… they are striving for spiritual growth. What if they hadn’t been given the opportunity to learn to pray? Imagine if they weren’t who they have become? The world would have missed out on them. My life wouldn’t have been enriched just by knowing them… Our children can help us grow in compassion, in kindness, in unconditional love… We have the opportunity to share them with faith communities, and give those communities the opportunity for that kind of spiritual growth if they will only accept us as we are and help us stand beside them. Our kids are not bad – they are different, and their lives are hard – but they are still kids. Maybe there isn’t a “Sunday School” they can go to – maybe “Youth Group” is a nightmare, and “Camp” is the stuff dreams are made of (whether good or bad). But they can belong – we can be part of the community if room is made for us.

We need advocates with people in “spiritual authority” positions – most of us have been hurt enough by someone in spiritual authority that we do not willingly open ourselves up to close contact with them. We need a place within in the community that we can call our own, and we need people who will reach out and let us know that such a place exists. Most likely we won’t believe you… we have become cynical and untrusting… but we might surprise even ourselves and show up some time. And if we are loved there – if our entire family is welcomed – if people smile at us and comment on the loveliness of our children’s eyes – if no one flinches at an excited yell in a pregnant moment – if no one turns and stares at us like we are aliens instead of humans… if we are loved… then we will tell our friends. And they will tell their friends… and we will all get to know the love of Christ in Truth — we will all know what it is to belong.

There’s a lot more that can be said on this subject. These few paragraphs are purely the work of sitting down, typing, and seeing what comes out – there has been no pre-planned outline, there’s been no rhyme or reason… this is all just “heart-talk” – and it’s limited. I’m just me – just Little Nonna – frustrated with the many years I’ve tried to find a place my boys can belong in the Life of the Church. They are loved now, they are accepted as they are, they are respected and appreciated for who they are now — but it’s been a long journey to get here, and most families just don’t bother with the struggle. There are so many other things to struggle over in this life, it’s easy for families to just decide that this particular struggle isn’t worth the pain. Lord have mercy on us all… may the day come when we all know what it is to belong.

Continuing to Remember the Mercies of God:

1731… freshly baked bread – the house smells wonderful

1732… sitting on the porch in the sunshine

1733… the smell of newly growing grass

1743… green, green – everywhere green!

1744… upcoming Chrismations and Baptisms! :)

1745… pajama days

1746… reading aloud to The Philosopher before bed

1747… The Professor up and ready to go for every service we let him go to :)

1748… Facebook community

1749… “date-walks” with my Mister

1750… late night laughter

P.S. The photo at the top of this post is of The Professor and The Philosopher when they were 7 and 4 — where has the time gone?!

Glory to God for all things…

Lord, have mercy…

Jumbled Thoughts…


Quick!! I have a couple minutes to write a few lines here before I have to move on to something else. Life has been even more busy lately than normal, but thankfully, I haven’t been assigned my “ghostwriting blog posts” from the company I work for yet this week – so I have a few extra minutes in my schedule today. Plus, we have a virus here that the boys keep relapsing into – so since I had to bring The Philosopher down from Pre-Sanctified Liturgy today because he started to feel “icky” again, I have an excuse to sit at the keyboard while he’s laying in bed. (Yes, yes, I need to go bake a loaf of GF bread… I will, I will, just a minute!)

Hold on, the cat is throwing up… if it isn’t one thing it’s another!

Later: Okay… Cat mess cleaned up, check. Water on to boil for “just ‘buttered’ noodles with garlic powder” for sick boy, check. Welcome home the rest of the family from Liturgy, check… Let’s try this again.

Now what was I going to say?

We had a wonderful visit with a group of young pilgrims from our home parish in Oregon! It’s always such a blessing to see people from home, and two of them were two of my favorite young women. :) I know pilgrims usually think that their time at a monastery is for their own edification, but what they often don’t realize is that if they take their pilgrimage seriously, they can also encourage everyone they come in contact with… the monks were blessed by them too. :) In the Body of Christ – spiritual encouragement goes “both ways” – we give and receive strength and edification from one another… such a beautiful thing!

A little later: There’s no such thing as uninterrupted time to write anymore!!

My Mister and I have been feeling rather nostalgic lately. The Professor is in the middle of his capstone project for high school – he’ll be finished this coming summer – and The Philosopher turns thirteen this weekend. In a few brief years this adventure with our boys will be over. For a couple who had hoped to be raising children together for decades, and having only been given two – it makes us a bit teary-eyed to realize that they’ll be grown in the blink of eye. I’m so grateful to have been given the opportunity to raise such unique, amazing people — and to get to educate them as well has been a double blessing. These years haven’t been easy, but they have been worth all the effort… it’s just hard to see how quickly it’s gone.

Apparently, if I want to get my thoughts into this little space I need to do it in short bursts.

The desire to have little ones in the house has led us full circle back to the idea of foster parenting. (This is probably a bit of a surprise to some people, but hey, when have we not been full of surprises? This is the couple that moved to the middle of nowhere to be near a monastery…) :) This time we foster though, the goal won’t be adoption. Our little house only qualifies for little ones from 1-23 months (and 29 days) :) – just because we only have room for them in our room – and we’ll be focusing on medically fragile little ones. We figured, with all our medical experience while I was so sick – everything from ports to giving shots etc. – we might as well put all that knowledge to good use. We can give little ones a loving home until their parents are able to take care of them. I want to reiterate, as of now we have absolutely no plans for adoption — we’re not completely closed to the idea, but it’s definitely not the goal. We want to help the parents as well as the children… and fostering is a wonderful way to show what unconditional love is like. We begin classes this week – Thursdays for the “foster care basic training” type class, and Mondays for the “medically fragile children” class…

Hours later…

The picture at the top of this post was designed by The Philosopher – he calls it simply “Storybook”. It’s one of my favorites that he’s done. :) If you want to see any of his others you can find them at Platina Photography.

I suppose it’s time to finish this jumbled thought update… I had hoped to get a little more detail posted about all that’s been going on around here lately. But apparently I don’t have the time to do anything but hit the highlights. I’m off to start the loaf of bread I’ve been planning on baking all day. :) I hope everyone’s Lenten struggle has been fruitful so far — it seems we never realize how much we grow during the Lenten Spring. But then, measuring spiritual progress isn’t our job – whether it’s our own progress or someone else’s. Our job is just to keep going… keep living this Way…

Remembering the Presence of God with gratitude:

1721… pilgrim hugs

1722… reading aloud to the Philosopher

1723… rearranging the house (how “roomy” can we make this 740 sq. ft?)

1724… warm blankets

1725… paperwork

1726… The Prayer of St. Ephraim – “Grant me to see my own sins, and not to judge my brother…”

1727… twin beds

1728… Quiet prayer

1729… too many books for the bookshelves!! :)

1730… laughing with my Mister

Glory to God for all things…

Lord, have mercy…

Preparing to Prepare Again…


I’m still here.

We’ve flown through the major feasts around Christmas and Theophany on the Julian Calendar, and now we’re about to begin the Triodion Period – those few weeks before the Great Fast of Lent begins. This is the time to get ourselves “prepared to prepare” – Great Lent is a time of intense preparation for the Great Feast of Pascha – so intense that it requires a few weeks of preparation itself. We ease into the ascetic practices of the Fast as the weeks pass, so that we don’t have to suddenly try to tackle it all at once. It’s also a good time to decide on any specific additions you might want to make to your personal prayer rule during the Fast – aside from the expected addition of the Prayer of St. Ephraim (one of my favorites – the Professor loves it so much he uses it all year round). It’s also common to discuss with your spiritual father any encouraging spiritual readings you might want to add to your day… the Fast is such an intense period of time that it’s good to have extra spiritual food around – that’s why we have the addition of Pre-Sanctified Liturgies during the week as well.

Anyway, all that to give you a background on what’s going on around here at St. Herman’s Monastery right now. After the whirlwind of the Nativity Fast and all the Feasts that followed it, we’re about to begin another intense period of time — only with a very different feel. This is a time of spiritual struggle, and hopefully a time of growth as we move toward the Light of Pascha. It isn’t easy, but going through it together as a community makes it easier. The Church knows that we need each other even more during this time, so there are more services, more times of communal prayer to help us as we struggle together.

To tell you the truth, I need the Triodion Period this year. I feel totally unprepared for the struggle of the Great Fast. My prayer rule needs to be reworked so that it can be done consistently (anyone who’s Orthodox will tell you that you need your prayers during Lent), and I need to balance out my days in general (which usually happens automatically when your prayer rule is functioning properly). Of course, the funny thing about Lenten plans is that they usually get “re-written” by circumstances that God allows, and you end up learning things you never even thought about learning… but the “original plan” is a necessary starting point.

Of course, I have yet to finish a book that was supposed to be my “Lenten Reading,” and my grandiose ideas about the changes I’m going to make have yet to work out properly, but a big part of the journey is realizing just how weak and human we are. I really can’t do anything in and of myself. I need what God has given… it’s all a very practical lesson in His Mercy. It’s good to be reminded that we’re human, and it’s only by the power of His Grace that we make any progress at all. We struggle and strive for growth, but He gives the fruit – and we can’t even struggle on our own…

…it’s good to remember that we don’t struggle alone.

This Triodion I’m “preparing to prepare again,” but I’m also remembering that I’m not in this alone. The Church is passing through this season in Communion as we journey to the Paschal Light, and ultimately… it is God that brings us through.

Remembering all His goodness with Gratitude:

1701… surprise visitors at the monastery – once in a lifetime meetings

1702… return pilgrims bringing their encouragement

1703… evening spent crocheting repairs for a dear friend

1704… new schedules planned out

1705… Christmas presents to read (books, books, and more books!)

1706… house blessings!

1707… sharing gluten free brownies

1708… new computers for the boys! Such a blessing!!!

1709… becoming Godparents again soon!

1710… laughing with my Mister over old BBC comedies on youtube

1711… the Professor’s papers – 2 down – 4 more to go for his High School Program capstone

1712… the Philosopher’s new photography work

1713… making progress in Greek – Αυτός είναι ένας καλός δάσκαλος. (And I might have written that right.) :)

1714… Whitman’s Chocolates from my Mister

1715… the Philosopher’s first sketch of an icon finished

1716… the Professor spending his Name Day at the Monastery – one happy boy

1717… my Mister doing the dishes for me :)

1718… Rain

1719… bedtime snacks

1720… Christmas Liturgy – began at 11:00pm on Christmas Eve, we came home at 6:00 the next morning… it was amazing! Liturgy, Festal Meal, and presents with all the pilgrims too!! Awesome.

Glory to God for all things…

Lord, have mercy…

Snow and Silence…


The Nativity Fast is in full swing now. We have our Jesse Tree up again – despite the fact that The Professor will be 16 the day after tomorrow and The Philosopher will be 13 in just a few months. Autism in the family means that family traditions like the Jesse Tree aren’t outgrown easily. :) I’m glad, the part of me that still yearns to have small children in the house is very grateful that I don’t have to give up our Christmas and Nativity Fast traditions yet. I thought the boys might not be interested this year, they have so many other things going on now, but they still look forward to it every evening…

The weather here has been crazy cold. The town’s water tanks were frozen, so we were out of water for days. Thankfully, it’s working again now, and I managed to catch up on all the dirty dishes. :) While we were “water-less” my Mister actually braved a night with the boys alone, and sent me for my first overnight stay with the nuns at St. Xenia Skete. They joked that I finally managed to visit overnight on the coldest night of the year so far – it was 3 degrees when I woke up on Sunday morning. My dear neighbor and I left for the Skete on Saturday afternoon, and then came back with the nuns for Liturgy at St. Herman’s Sunday morning. This night away was the first time I’ve left my Mister with the boys overnight since they were 2 and 5… I’ll let you decide what the reason for that might be. ;) Nighttime parenting with autism is a gamble – even when children are older. Sleeping and autism go together like oil and water… I had to really focus on not worrying about how the guys were doing at home and just enjoy the handful of hours that I had at St. Xenia’s.

It might have been cold, but it was absolutely beautiful. Snow covered all the trees and buildings… everything was quiet as you walked the shoveled paths from one building to another. We stayed in The Four Evangelists Cabin – I was in St. Mark’s room… (as was a giant Daddy Long-legs Spider — from the tip of one leg to the tip of the other he was over 5 inches! I was too creeped out to sleep with him there, and seriously considered changing rooms, only I really liked the icon corner in that one… :) So I decided to stay, but I mentioned it to the nuns and Abbess Dorothea took pity on me – she simply went and removed him – my hero!) In that little room I actually had time to just “be” – without any interruptions. While I was standing at prayer a little bird flew down onto the branch of a snow-laden bush right outside my window – he fluffed his feathers and looked at me as I looked at him. We watched each other for a good minute and a half or so before he flew away. There was a sense of peace in his brief visit, and I smiled as he left – my heart resting in the fullness of silence in the candlelight. Sometimes it’s the little gifts that your soul needs…

Chanting the Canon for the “Leave-taking of the Feast of the Entrance of the Theotokos” with one of the nuns that night, I kept falling in and out of disbelief that I was actually there – in St. Xenia’s winter chapel. We read the service books by the light of a single candle, while a few others reflected their light off of the icons surrounding us… other than the sound of our mingled voices and the fire in the woodstove, it was beautifully quiet. And that night, as I hiked out to the Four Evangelists Cabin, the only sound came from the crunching of the snow beneath my feet. It was very cold, but my heart was warm with prayer and peace. Then there was the toasty warm air of the cabin as I opened the door and went in out of the icy air of the night. The fire was getting low, so I added the logs I had picked up and brought with me from the woodshed. Then I found myself in my little “cell” – sitting in the silence of the night with only the roar of the woodstove to disturb the quiet. I wanted to stay awake, to enjoy every moment I could possibly have in the peace, but I was tired. And I knew that I might not get another chance for an undisturbed night of sleep for a very long time… so I grabbed my prayer rope, curled up in the cozy bed, blew out my candle… and fell asleep before 10 o’clock! :)

I did wake repeatedly during the night – I’m well-trained to wake up and make sure everything is okay – but I didn’t have to get up (other than to make sure the fire was still going), and my body thought it had slept too much by the time 6:45 came around. It was morning before I knew it though, and time to leave for Liturgy where all three of my boys were quite happy to see me. :) Thankfully, they had a good night, and it looks like I’m going to be able to have a night of rest at St. Xenia’s once a month or so – God-willing. We’ll see… I’m grateful for the sacrifice my little family made in order for me to have the time I did. I am so blessed.

Remembering the Goodness of God:

1691… Snow beauty

1692… water flowing again!

1693… good neighbors

1694… Christmas Lights!!!!

1695… Jesse Tree evenings

1696… chanting by candlelight

1697… Greek lessons (I think we’re actually learning something!)

1698… Christmas Music

1699… breakfast cookies

1700… reading aloud Dickens’ Christmas Carol

Glory to God for all things…

Lord, have mercy…

Watering the Dry…

It rained!

It actually rained. :) Living in the Pacific Northwest most of my life, I took the rain for granted. The presence of water everywhere, the smell of it in the air… the weight of it – such a normal part of life I only noticed when I paused and force myself to see it. With the water came the color green… not one of those greens that come from a crayon box, but the many shades of living green. All those myriad greens – they’ve been one of my favorite things since my childhood. Since then I’ve learned the beauty of the many shades of brown too – but in my heart, those living greens bring back the days of outdoor play and joy of my early years… nothing can be quite like that.

After living through the summer of the mountains in Northern California, I will never be able to take the magic of water falling from the sky for granted again. The last time it rained was when we were celebrating the Feast of the Nativity of the Theotokos – that was last September – and that was only a brief rain, barely enough to really wet the ground – let alone replenish the water supply for our little town. The dust covered everything – even the monastery dog is a different color from the red dust. I took comfort in the sunlight – especially as its heat faded a bit as the orbit of the planet shifted – and I looked up often… looking down at the waterless land – its browns and “deadness” adding to the crunching fall of leaves that naturally come from Autumn – it would make me thirsty with empathy just to glance at my feet as I walked along — my feet kicking up a cloud of dust no matter how carefully I tried to avoid it. (Who wants their skirt lined with dust at the bottom if they can avoid it?) Dry doesn’t seem to be enough of a word for the reality of a landscape in need of water.

This morning the weight of the air – heavy with water and the smell of life – is comforting and familiar… there’s a sense of home hiding in it with each breath. Of course, there are other unpleasant side effects with the change of weather, but those are purely physical and I choose not to dwell on them. Instead, I’m focusing on the left over aroma of the lentils we had for lunch, and the bread baking in the oven. The pain in my body – like a headache that encompasses every inch from head to toe – a deep ache in some places, a stabbing sharpness in others – it’s also familiar in a strange way. I’m definitely alive. :) It just adds to my desire to wrap up in a blanket and revel in this real beginning of the cozy time of year. It’s a time to love and be loved – to share mugs of warm drinks and good stories – a time to remember all that is good and True. The rain has come, and for now, all the world is drinking deep…

It’s time…

Our Nativity Fast is quickly approaching. While most of my Orthodox friends have begun their Nativity Fast already, those of us on the Old Calendar are still in the midst of preparations for the season. My boys are older now (12 1/2 and almost 16), and it’s likely they would no longer be interested in our Jesse Tree and such if they were “normal” – but being autistic, there’s just as much joy in it for them as there was when we first started. It’s familiar, and it’s unchanged. As chaotic as the holiday seasons are, our Nativity Fast preparations are a time of guaranteed quiet in the storm. These times of family traditions that are centered on our Faith give our thirsty souls the water we need to continue to grow in all the busyness of the season. This is one of the ways the Faith is woven into our lives – there will be a Jesse Tree, a wreath, candles, and lots of Scripture readings. Within the four walls of our home this time before the Feast of Christmas is just as important as the feast itself, and by the time the feast arrives our hearts will be prepared to celebrate the fullness of it, despite the way our culture might try to dilute the meaning…

*

A side note:
There’s now an icon of St. Nonna on the women’s side of the main church at St. Herman’s Monastery. :) Having her there during during the Liturgy this morning made me smile so big – the boys and my Mister already had icons of their saints there, and now I do too.
:)

*

May this season of Light prepare our hearts to receive the Light, and may we drink fully of the refreshment it brings to our thirsty souls…

Remembering the Goodness of God:

1681… dates with my hubby at the Platina Store (you won’t find a more amazing burger anywhere)

1682… RAIN!!!

1683… blue skies following rainstorms

1684… plans to travel North to see family for Thanksgiving

1685… water in the creek — I can pump water into the machine for washing clothes!

1686… new icons

1687… The Professor reading nighttime prayers at the kliros

1688… The Philosopher working on an icon sketch with one of the monks

1689… Greek lessons going well – learning the names for family members now!

1690… celebrating Liturgy today for the Feast of St. Michael the Archangel, all the Archangels, angels and the heavenly hosts! A beautiful morning for Liturgy – blessed name day to all celebrating today!

Glory to God for all things…

Lord, have mercy…

Remembrance of Death…

There aren’t many spare moments in life right now. This past week has been particularly busy since we’ve had multiple Liturgies and celebrations – not the least of which was the elevation of Mother Dorothea to Abbess of the St. Xenia Skete – the women’s monastery connected to St. Herman’s. Bishop MAXIM came (of course), and it was our family’s first Liturgy at St. Xenia’s. Their church is quite a bit smaller than St. Herman’s and there were so many people who wanted to be there for Mother Dorothea’s “big day” that it was full to nearly bursting! :) Our boys “hung in there” – but they definitely struggled with claustrophobia issues. I was really impressed with how well they handled themselves though, and of course being with Bishop MAXIM was a blessing for them as always.

I’ll admit that all the excitement has worn me out a bit. I am tired. And despite all the things I have to be grateful for, all the many joys and blessings… it’s still easy for me to fall into discouragement. Thank goodness Confession is available whenever I need it.

A few days ago we found out that our landlady was only given a few days left to live – and we just found out she passed away early this morning from breast cancer – her sudden downturn has taken this tiny town by surprise. It’s been a complete shock, and she leaves a very large “hole” in this community that no one will be able to fill. When a town is this small – 60 people – the loss of one person naturally has a large impact, but Sue played a larger than life role… she was like the matriarch of Platina.

Then yesterday I found out that a friend of mine from “across the pond” – Michelle – died suddenly last Tuesday. She struggled with the same illnesses/disease that I have… only she recently took a downturn. Now, with Dysautonomia and ME/CFS you often get “low points,” and you just learn to wait them out. But it seems Michelle’s done with the struggle now. She went to the doctor on Tuesday, I know because she posted about it on her blog. But something went wrong Tuesday evening, and her daughter then had to put up a post to let us know of her mother’s passing that night. I was totally shocked. I am totally shocked still. Michelle was one of those people who is always so encouraging – I looked forward to her comments here on my blog – and she had a great sense of humor. She left behind six children and loving husband… I’m at such a loss… it’s similar to when “we” lost Sara about 2 years ago. I’m just an “internet friend” – I’m far away – there’s no way for me to attend a funeral or anything like that. There’s just a nothingness — the end of shared words. Michelle’s passing hit me really hard though because she had Dysautonomia too, and it was just such a shock. Doctor’s try to tell you that POTS/Dysautonomia and ME/CFS don’t kill you… but I know of too many people who have died.

This week has been such a reminder of the fleetingness of our lives on this planet. It isn’t very often that we’re given the blatant opportunity for the remembrance of Death — at least not in our regular day to day lives. Perhaps our family has more opportunity than most people because we spend so much time at the monastery – the monks are often asked to pray after someone has passed away – and the remembrance of Death is a big part of the life of monastics. But it’s something we all need to be reminded of… we need to remember that our moments are numbered, how do we want to spend them?

I can’t help feeling like I’m living on “borrowed time” since my visit to St. John last year. Father Seraphim said, “It is later than you think, hasten, therefore, to do the will of God,” and that phrase has been with me so much lately. Of course, in a sense, we’re all living on borrowed time. Every breath we take is given to us, we’ve done nothing to earn it, and the day will come when time for us will end. It’s funny, there seems to be a bit of a “thing” in society about the “end of the world” in one form or another, but the truth is… each of us will experience the end of the world as we know it… we all have an end… But for now, I’ve been given these moments, and I don’t want to waste them. It feels like I am though, like too many of them are slipping by in my discouragement. It’s too easy to forget God still – to forget He has a plan… to worry, to fall. It is only by His Grace that I remember to look up at all.

I am such a small soul.

Lord have mercy on us all…

1671… blue skies – not a single cloud

1672… running creek water — hmmm there might be enough to wash clothes with?

1673… teddy bear sent in the mail

1674… prayer rope made and sent too!

1675… setting up my new Etsy shop – almost ready to open! (NeuroPoetic Knits and Knots) :)

1676… Greek Lessons — παμε! (anyone know how to add accent marks where they belong?)

1677… Panikihida services

1678… Akathists at night while waiting for the boys to sleep

1679… The Philosopher practicing piano

1680… The Professor chanting at the kliros with the monks — he’s getting pretty good! :)

Glory to God for all things…

Lord, have mercy…

One Year Ago…

A Year Ago…

This past weekend marked the one year anniversary since our pilgrimage down to San Francisco to see St. John and the Myrrh-Streaming icon of the Theotokos, and our first visit here to St. Herman’s Monastery – when we could only stay a few hours. Looking back, it seems just like yesterday… literally, it seems like we were just there… but then so much has happened since then! Not just the drastic improvement in my health, but our move here down the mountain from the Monastery… and so many other changes in ourselves — everyone in our family has grown (and the boys quite literally — The Professor is quite a bit taller than me now!)

I have a lot of projects going right now I should be working on… not just the daily chores, but a handful (or maybe arm-ful!) of knitting projects I’m trying to get off in the mail, as well as the editing with the boys of the Abbess Thaisia book for the monks (it’s been moved to ebook form and needs at least four “re-reads” to check for typos — a wonderful book by the way… definitely worth adding to your “to read” list), and now we’ve begun Greek lessons with one of the monks (which is a lot of fun – I want to learn Russian, but Greek is a good language to start with and I wasn’t about to turn down the offer of free Greek lessons just because I also want to learn Russian — I hope to learn Serbian and perhaps a couple other languages as well as time passes.) Keeping up with this little corner hasn’t been easy amidst all the other things I have going on… and I’m still balancing my energy levels as well. My body really is doing so much better, I’m doing things now I had stopped even dreaming about, but every once in awhile this body reminds me that it has been through a lot, and still needs to be treated gently. I had another small seizure in my sleep and woke up feeling pretty miserable this morning, but thankfully, I’m recovering quickly today – just some shakiness, a bit of “all-over pain” left, and some drooping of my right eye… also, my stomach isn’t digesting much, but that’s okay – not really a big deal at this point. I’m staying on top of the things that need to be done, so I’m not feeling frustrated — all is well. :)

Taking a break from everything to play “catch up” in my corner here is a good way for me to put my feet up and rest for awhile after cleaning our kitchen this morning. :) We had a moleben of Thanksgiving this weekend (a special prayer service) to mark this one year anniversary – there’s so much to be grateful for! I’ve learned so much over this last year… things you don’t learn from books or even other people’s experiences. These lessons have been the kind you have to personally learn – no matter how much you might read about them – you don’t grasp their meaning until you live them. For one thing… I am a great sinner. Those aren’t just words… they are fact. This isn’t about comparisons with other people, it isn’t about some kind of “perfection complex” – it’s just a plain fact. I am a great sinner. I’ve also learned I’m prone to falling into sin when situations come up that catch me off guard. When a spiritual battle comes, it doesn’t appear directly in front of you, it isn’t usually obvious or coming from a direction you’ve already fortified… it sneaks up on you, or sideswipes you, or catches you in the one unguarded moment you have… And yet, I fall for the same sneak attacks over and over again! How ridiculous is that! Just when I think a specific area is “under control” – the moment I let my guard down – I catch myself falling into the same attitudes and actions. Of course, I’m more aware now, it’s easier to jump up after a particular fall and apologize, “Forgive me a sinner” is heard often around our house. :) And, that is the most important part… recognize your sin-sickness, and then move on… the battle isn’t lost unless you just lay there and wallow in your mistakes. Our falls keep us humble… they remind us that we truly are no better than anyone else… that we are human and it is God’s love for us that grants us His great mercy. Our falls can be the instigation of our drawing even nearer to God as we rejoice with gratitude over His goodness to us, despite our weaknesses. He is merciful and compassionate when we run to Him with repentant hearts… just like any loving parent – yet even more so…

There is no way to explain the “grateful indebtedness” I feel for God’s goodness to me. This year I have learned about His Goodness – because I have experienced it… In all the hardships and difficulties, in all the struggles and battles, I have seen His Goodness — and I can rest in it. I can trust that even when all is dark, God is Light, and His Presence transforms the darkness into Light. He takes what looks like the absence of Good – what is evil – and makes it work for good in our lives. He draws us ever closer to Communion with Him – salvation is union with God – and uses every moment of our lives for that purpose. When we are baptized into His Life – He makes that Life live within us… it is all Grace… every breath in these lungs he made, and every beat of this weak heart of mine.

And Now…

It is All Grace…

with Gratitude for all His Goodness:

1661… lentils on the stovetop

1662… Greek lessons

1663… reading Greek with the boys

1664… Compline in the Candlelight

1665… teddy bear finishing touches

1666… new books and hot cocoa

1667… aprons

1668… Russian labels all around the house

1669… granola from the nuns in Santa Cruz

1670… Confession when all the world looks dark

Glory to God for all things…

Lord, have mercy…

Peace and Quiet…

I’ve been busy with my knitting lately. Slowly, stitch by stitch, I’ve watched projects take shape on my needles… the Prayer running along within as the rows build upon each other — my heart wrapped up in prayer and hope for the one whose fingers will clasp these fibers when I mail them away. My hands have taken these skeins of color and brought form to the prayers of my heart…

“Lord Jesus Christ, Son of God, have mercy…”

Life has been hectic – as life always seems to be – we are full swing into the rhythm of learning during the day, and then the evening services at the monastery… Our days fly by…
…but inside, in my little soul, all is very still right now. I have found the Quiet within once more almost overwhelming. It’s likely a result of my current recovery from another seizure… another one of those “silent” ones that just leave me looking like I’ve had a stroke, and feeling like my body is made out of something unbelievably heavy. I haven’t had one since April (I thought it was January, but a look back through my blog revealed that it wasn’t quite that long ago). I have to admit that it caught me totally by surprise, it’s been so long since I had one and I’m so busy with life right now — I’m not thinking much about my health, despite the higher pain levels lately. But things like this force life to slow down again… and it’s a small thing to fall heavily into the Prayer once again… to have the Prayer force itself up from within — bubbling up with the overwhelming Quiet.

Lord Jesus Christ, have mercy…

As I sit here listening to my boys laughing over their lunch, as I type and rest and type some more, the Prayer fills my heartbeats. Sometimes now, it seems I can feel it like a living thing inside, even if the words don’t settle into my thoughts. But, it’s not usually like this… often, I’m so distracted by life the Quiet becomes “background noise” — sad, but true. I forget to hear it… I forget to feel its presence… I forget the Constant Presence of God — Our God Who is everywhere present, and filling all things… After a seizure or other intense health event though, it’s like my life is put on “pause” – everything around me becomes secondary – less “real” – and the strength of prayer within takes over for the weakness without. My small soul remembers… I remember Communion. I remember Peace. I remember Rest.

I remember God.

Days like today I know why this struggle has not been totally removed from me — I know why I am here, in this place, at this time. I’m here to learn to be – to learn to pray… to learn the reality of what it is to be in Communion. As I look around at the chaos of our little house – a house I’ve been unable to “keep up with” for a few days now as I recover – it’s like looking at a room from far away… (one that appears to have been hit by some kind of strange mini-tornado that focuses mostly on tossing books and papers about in order to create the biggest disaster possible in the shortest amount of time) :) The chaos is there, but unable to reach past the shield of the prayer within… it can’t create the panic I usually feel when I need to clean, but I don’t have the energy resources for it. Today, I’m too worn to feel anything but Quiet… Still… there is no pebble that can create ripples within the pool of my soul right now. And that is a blessed side-effect of all this. I am forced to Rest, because I can’t NOT rest. :)

The miracle would be to be able to hold on to the depth of this Quiet without it being forced upon me by my body’s failings — to remember God without the remembrance being thrust upon me in all its glory and intensity. Is that possible for a soul as small as mine? I don’t know. Today, all I can do is pray…

Lord Jesus Christ, Son of God, have mercy on me, a sinner.

With Gratitude for the Gifts of God’s Love:

1651… knitting needles and yarn stashes

1652… All Encompassing Peace

1653… wind dancing with the leaves in the sunlight

1654… cooler temperatures and the coming of Autumn!

1655… hot cocoa with my Mister

1656… dinner with the monks every evening – no dishes! :)

1657… Confession every week – healing for my soul’s sicknesses

1658… Feast Days and Name Days at St. Herman’s

1659… blogs of faraway friends – bringing them just a bit closer

1660… water for showers and dishes :)

Glory to God for all things…

Lord, have mercy…

Here I am…

sunset coming down from St. Herman’s

Here I am again. I woke up this morning feeling overwhelmed by this world. My pain level has been high lately – for no reason that I can come up with – which is very tiring and discouraging. It’s the only issue I’m dealing with right now, so I don’t want to complain – things could be so much worse… looking around the world right now – my life seems simple and carefree in comparison to so many others.

I moved here to Platina last March unsure what my purpose for coming here was… according to doctor “hints” my time on this planet seemed to be winding down… perhaps measured in just a handful of years. I figured the gift of moving to this far-away, middle-of-nowhere place was to prepare myself for my last days – days I had already begun.

Here I am though. I’m doing so much better than I was when we moved here, and even at that point I had shown improvement from the autumn before after our pilgrimage to see St. John and the Myrrh Streaming Icon from Hawaii. There’s just been a steady, slow improvement. At this point, I’m able to go about life in a fairly normal manner — sure I still have pain, some digestive issues, but while I might still have limitations, I’m not feeling like I’m dying anymore. The discouragement can be pretty intense though. It’s easy to just want more and more and more… easy to want my “old life” entirely back… but I have a feeling that’s not actually possible. Even if I was symptom free, I wouldn’t be the “me” I used to be…

I’m very different than I was… my perspective of life, my focus, my joys, my sorrows… everything about me has changed in these years that I’ve struggled with this illness. Looking back through the years, I can’t even pinpoint when the changes began. It’s been as subtle as growing up is — a definite change, but one you don’t see as it happens – only in retrospect… in memory and pictures of the past. It’s unsettling. Strange. For so many years I would think about how much I wanted my “old life” back – how I wanted to have back all the lost years, all the memories I could have made… yada, yada. But the reality is, I can’t go back — even in a fully healthy body, I wouldn’t be the same person I was then…

Is this good? Is it bad? I don’t know. I have to trust that God has a purpose and a plan for me — for my family. I have to trust that the me I am now is what is best for the salvation of my soul. I have to rest in that… especially on days like today – days when the hurts of the rest of the world seem to come alive in the pain of my small body – days when the weight of my failures and shortcomings adds to the mental anguish of my already discouraged soul. Yes, it’s time for Confession – thank goodness. Tonight I will go unburden my soul, and I will walk up from the lower church carrying only the pain of my body… so much lighter a burden than soul-pain. How the world can handle all this war and loss without the freedom of Confession, I have no idea. It is in metanoia that prayer can come alive again, and the Quiet can return its healing embrace. It is with gratitude that my heart is preparing to relieve its burdens…

This world is in so much pain right now, and it all seems so close… As Orthodox Christians, we’re closely connected to so much of the human suffering going on. I know people with family in Syria and in Egypt. I avoid talking about politics, but for the record – nothing we hear about in the Western media is an accurate portrayal of what is really going on. It’s easy to lose heart in the face of so much evil… don’t. There is always hope — as long as there is Life, there is Hope.

Glory to God for All Things – even in the dark…

1641… waiting for rain

1642… sunbeams on the icons at St. Herman’s

1643… knitting for Syrian Refugees http://www.bevscountrycottage.com/8inch-squares.html

1644… an online baby shower :)

1645… Hope

1646… knitting a teddy bear for a soon-to-be-arrival :)

1647… visitors from Oregon – lots!

1648… September birthdays coming up (both of my parents!)

1649… The Philosopher’s cleaning help

1650… movies and laughter with my Mister

… there are more… always more — but it’s time to get ready to go up to the monastery for service now… and my heart needs it.

Lord, have mercy…

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