Monday, March 31, 2014

My View From Here

If there's one thing psoriatic arthritis (and his buddy ankylosing spondylitis) has given me, it's a new point of view. Actually, several points of view.

There's the view from my bed, where I happen to spend a lot of time. Not only is my bed my bed, but it's located in our living room and acts as our couch during the day. Over the weekend I was quite ill, and had sick children as well, and found myself in the same place, my bed, for hours on end. Snuggling. Cuddling. Enjoying my view from here.

I can see works of art created by my children, odd things carved by a relative of my husband many years ago, art I created, as well as paintings done by my husband's great-grandmother, among many other objects of art, beauty, and whimsy. I can also see the dusting that needs to be done, but that will get done eventually. 

And then there's the view from my back door. The snow is melting. Trees are budding. Skulls are emerging. Sometimes the sun even peeks out. On days my legs aren't up to taking me very far, I can at least step out my back door and see some beautiful, and somewhat unique, sights.

The view from my window isn't too bad, either. My new obsession is taking photos of the moon...

Some may be surprised that I don't mind the view from my wheelchair at all. A recent necessity on a trip to the Science Center, my kids got to enjoy plenty of time to explore three floors of exhibits and I didn't feel wiped out and in pain in the first ten minutes, as would have happened had I not brought Ziggy along for the ride. 

Living with Psoriatic Arthritis and friends can be a challenge, but the view from here can be amazing. 

A Moondragon hitching a ride on the back of my wheelchair

Thursday, March 27, 2014

The Well

At worship a few nights ago, the pastor was preaching about the story of the Samaritan woman at the well whom Jesus, a Jew, asked for a drink of water. That a Jew would ask anything of a Samaritan in those days was unthinkable - it just didn't happen. And then he moved on to talking about Lent. It was, after all, and Ecumenical Lenten Worship, where different congregations and denominations gathered to worship together during Lent. The pastor posed this question: if we of different Christian faiths could come together on a Monday night to worship together, could we also lay aside the divisiveness in our daily lives and open our minds and our hearts to people who aren't like us? Could we, like the Samaritan woman, open our minds to things foreign to us and learn to respect and perhaps appreciate different lifestyles or points of view? After all respect and appreciation for someone else's way of living or belief system doesn't mean we have to accept it as our own or even agree with it. Could we do this, especially with those who make us most uncomfortable? 

 As he was speaking, I was sitting between two of my children, who have been raised to respect and accept people from all walks of life. I just kept thinking about how blessed I am to have our homeschool community - our big, loving, diverse homeschool community. Each Friday my kids get to get together with people of a wide range of ages, colors, and spiritual beliefs; of differing cognitive, social, physical, and behavioral abilities; of different sexual and gender identities; of a rainbow of haircolors; of varying heights and weights; boys with long hair, girls with short hair, and vice versa; people who hula hoop and people who are completely deficient in the art of hula hooping; with vegans, vegetarians, omnivores, celiacs, those who eat only raw foods, and people on varying diets for food allergies or sensitivities or treating various illnesses or disorders. In this community, we don't judge people by appearance, ability, lifestyle or belief system. I do admit that one might let out a giggle at the lack of hula hooping ability of some. Well, ok, of me. And usually it's me laughing at myself. And my kids laughing at me. I just can't seem to figure out how to keep that hoop aloft.

My daughter, Haley, in a skit about bullying at homeschool co-op, written and acted out by students.
She played the bully - and the girls she hurt in the skit came together to offer the bully love and friendship,
realizing her actions were based in hurt and loneliness, and because everyone deserves to be loved. 
In this community I have never heard anyone take offense over someone else's questions about why they don't eat this, whether they're a girl or a boy, why they have a different skin color than their siblings, or any other question. I've also never encountered anyone afraid to ask a question such as "why does that mom wear a burka?" or "why do you use a cane?" Here, difference is seen as an opportunity to learn something new, not a cause for discomfort. Here questions are normal, acceptance is normal, diversity is normal, love is normal. 

Homeschoolers building a human pyramid on "Share Day" -
their class was about learning to work together to accomplish goals.
How I wish I had had a chance to speak with that pastor, to invite him to come and see the well of acceptance and love that exists in our little part of the world. My weekly drinking in from this well sustains me through the myriad news stories and personal experiences of intolerance and hate in this world. 

For us, putting aside divisiveness is not a what if - it's the only way to live. 

Thursday, March 20, 2014

Making the Best of a Rotten Situation

On days like this when life hits me hard, I want to scream, to cry, to panic, and curl up in a ball of misery. But I don't. Instead I pray, and pray, and reach out, accept offered help, and pray some more. Ok, so maybe I cry a little, too. 

Years ago, I would have been a mess of worry, stress, and anxiety. Today, I choose to see this as an opportunity to get my house, quite literally, in order. To fix what needs to be fixed, replace what needs to be replaced, and have a better house in the end. 

We'll find a way to pay back my parents' generosity, should it be needed,  and will reach out to our community for whatever help can be provided. Our house may be falling apart in the most literal sense of the words, and at times I may feel like I might fall apart as well,  but I know we will get through this, just like we've gotten through myriad other tough times. Since I can't change the situation, I'll just have to change how I view it...

After all, we still have a roof over our heads. We have food to eat. We will emerge on the other side of this with a stronger, safer house. We will then, little by little, tackle the comparatively minor repairs when we can. We will be ok. 

Finding out water has been getting behind the deck lashing and rotting a wall of our house for years gave us quite a shock. I'm sure the dollar amount on the adjuster's estimate to rebuild the wall and the deck will do the same. I can't imagine what the demolition and rebuilding process is going to be like, but I am sure of one thing - we'll make the best of this rotten situation (pun intended). 

Monday, March 10, 2014

I Would Never Do That

If there's one thing life has taught me since I became a parent, it's that just about every time the thought, "I would never do that" came across my mind, I'd end up, eventually, doing just that thing. 

"I would never let my baby sleep in bed with me!" That's much too dangerous. Right? Maybe? And then my firstborn wasn't yet twenty-four hours old and he would scream every time he was put down and wouldn't sleep unless he had physical contact with a human being and I realized that the only way I was going to sleep was to sleep with him with me. Upon our arrival home, I slept with him on the futon, as it wasn't the same as bed-sharing, was it? Finally, my husband and "The Family Bed' by Tine Thevenin convinced me that my Mama instincts were operating properly and sleeping with my baby was a perfectly safe and biologically normal thing to do. And I loved cosleeping with all of my children. 

"I would never sit my kids in front of the tv just to get some peace and quiet." There are so many other quiet activities they can do - reading, crafting, writing, drawing - that I'll never have to resort to using the tv as a babysitter. Enter real life, five kids, multiple autoimmune diseases that cause extreme exhaustion, and "let's watch a movie" can quickly morph into "let's have a movie night" and then into "let's have a movie day." Some days it's just necessary for my entire household to turn into zombies for 24 hours so Mama doesn't turn into one permanently. And I love the peace and quiet and naps I can sneak while the kids are entertained enough not to wreck the house in the meantime.

Then there's the collection of breastfeeding I would nevers: "I would never breastfeed a child who can talk;" "I'll never breastfeed two/three children at one time - that's crazy!"; and "I'd never breastfeed another person's child." I did all of the above. Many, many times. I nursed a child who could do algebra, for heaven's sake. Admittedly, he was quite precocious in that area, but still. And I loved just about every moment of breastfeeding my kids, no matter what their ages or how many or whether or not there was a queue.

Have you seen those commercials on tv for prescription drugs where half of the commercial is a list of the warnings and scary possible side effects? So many times I thought or said, "Why on earth would someone take that? You'd never catch me taking something that sounds more dangerous for you than any illness!" Then psoriatic arthritis and ankylosing spondylitis reared their ugly heads and poof I was practically begging to take a drug whose pages and pages of warnings and adverse reactions and contraindications scare the carp out of me. And I LOVE love Love this drug. It has changed my life in so many amazing ways, though it is still crazy scary. 

"I will never, ever, drink soda again." Now, this I was one-hundred percent invested in. I cringe every time one of my children drinks soda, not that that happens very often. Soda is damaging, toxic, destructive...and the only treatment we've found for my migraines. One Coke (why it has to be Coke, I have no idea, but it's the only one that seems to work and that I can keep down - and no, coffee doesn't work), and around eighty percent of the time, I get a break from my migraine. It's horrible. It's gross. But it's better than nothing, as my doctors have yet to be able to find a medication that will get rid of my migraines and not kill me or make me incredibly ill in the process. 

Taking all of this into consideration, I'd like to say that I will never, ever, get a hot tub, as they cost too much and are too high maintenance. Nope. Never. 

Thursday, March 6, 2014

To Dust We Shall Return

She sat. She squirmed. She doodled, drew, underlined, and crossed out. She cuddled, snuggled, and rummaged around in my purse for a vitamin C drop. We were at Ash Wednesday worship, very close to bedtime, on the day after her great-grandmother, her Nanna, died. 

Death was the theme of the evening, wasn't it? "Remember that you are dust, and to dust you shall return." 

Pastor Gollenberg was talking about how all of us gathered there were aliens - different, weird, set apart from others because we were at worship on a Wednesday, getting ashed smeared on our foreheads, believing in a God who was going to die. He talked about fasting, not necessarily from food, but from things that tend to take over our lives, if I recall correctly. I admit, things got a little fuzzy for a while there. Not because it was late and I was tired and my bed was calling; not because I was daydreaming or nodding off; but because the squirmy child climbed into my lap. 

She motioned for me to tilt my ear toward her, and whispered in my ear. 

"I'm glad that Nanna decided to die the day before Ash Wednesday," she said. "It's good to be here at worship tonight. All this talk about death really helps me to feel better." I didn't respond right away, partly because Pastor was saying something about not hoarding earthly treasures and I really did want to hear what he was preaching, but mostly because my mind was reeling from this child - so deep is her faith, that she finds comfort in the reminder that death is not the end. 

We talked about it more this morning - or perhaps I should say she talked about it more this morning, as I drove us home from the store. "Pastor said, 'Remember that you are dust, and to dust you shall return.' I think that is talking about the body part of ourselves. I think if we talk about the soul part, we can say, 'Remember you are from God, and to God you will return. We'll bury Nanna's body in the ground tomorrow, but her soul is with God. I think dying is kind of like sleeping. When you die it's like you fall asleep. Your body part doesn't wake up. It's dead because your soul wakes up with God. Your soul is your energy and when it leaves your body your body dies because it doesn't have your energy in it anymore. Or something like that. At least that's what I think. Imagine that - waking up and finding you're with God!" 

She's going with me to the funeral mass and burial tomorrow while my husband takes our other kids, who do not wish to attend, to homeschool co-op. Some people are worried about how my just-turned-six-year-old will handle everything. I think she'll be just fine. 

I, however, may have a tough time convincing her that a Catholic Mass is not the time for a rousing chorus of There's One More Angel in Heaven

Wednesday, March 5, 2014

She Walked Powerfully

She walked powerfully through my life.

During my childhood, she went to work while her retired husband stayed home and tended house, yet got up early Sunday mornings making dinner from scratch for her extended family. Picking her up at her office was perhaps the highlight of my Saturday. There was something magical about typewriters and adding machines and the high counter in the front where my grandfather would sometimes let me sit. She planted the seed that a woman's place is wherever she wants to be.

During my teen years, she unabashedly shared her opinion and encouraged me to stand firm in my convictions. She remembered with me my history, as well as family history. Stories of my mother´s childhood, the Depression, and her own life we're the history lessons of my youth.

At my wedding when I was just barely 21, she danced joyfully with my grandfather to their song - I Found a Million Dollar Baby in a Five and Ten Cent Store. As I witnessed love reverberate between them, I prayed that one day my husband and I would live up to that example, the love between us palpable to all in the room. 

As a new mom, unsure of my ability to live up to any number of perceived expectations, Nanna encouraged me to relax and listen to my instincts and my baby, assuring me that things would work themselves out. Quite unexpectedly, at least as far as I was concerned, she was one of my biggest breastfeeding supporters, regaling me with the story of a mom in her old neighborhood who seemed to be nursing all the little ones in the block. "She would just throw her breast over her shoulder and they would all follow after her." 

In more recent years, I witnessed her weakness, stubbornness, and strength when she was faced with the death of her husband, my Grampy. I saw her with new eyes as she ventured forth through life on her own, making new friends, and striving to be fiercely independent as she was forced to depend on others. I delighted in seeing the sheer joy in her face as she interacted with her great-grandchildren and treasured every opportunity to take another walk down memory lane with my Nanna. 

Two days ago, I went to visit Nanna for the last time. In the few moments I had alone with her, I told her how much I loved her and that she needed to be at peace. That we would all be ok. I said goodbye. Yesterday she left her earthly body behind to journey into Everlasting Life.

Today, Ash Wednesday, I celebrate her life. I'll cuddle with her great-grandchildren and share memories. I'm sure we'll laugh, certain we'll cry, and know that we'll never forget this woman who walked so powerfully through our lives. 

You are dust, and to dust you shall return. (Genesis 3:19b)

Monday, March 3, 2014

Letting Go of Lent

Every Lent I try to have a Lenten discipline of some sort. Giving up things for Lent doesn't so much work for me, so instead I try to Do or Be or Give or Love or Resist.

This year I'm Letting Go.

I'm letting go of stuff. Room by room, closet by closet, shelf by shelf, I'm letting things go. So many things live in my house that don't need to be here - extras of this and that, things we might need someday, more VHS tapes than anyone ever needed, clothing, accessories, books, books, and more books. Day by day I will release the chaff to the wind and keep only what nourishes our bodies and souls, and what is necessary, essential to living.

I'm letting go of expectations. My expectations of myself get in the way of my own joy, my own sense of fulfillment. My expectations of my husband are often unrealistic to who he is and how he goes about things. My expectations of my children are sometimes limiting to them, and other times too wild and free for their personalities. I'm letting them all go.

I'm letting go of the negative feelings I have about my body, in particular, my weight. It is what it is, I'm doing everything within my power to be as healthy as I can, and the rest is up to my body.

Letting go of stuff will open up space in my house for people, for creativity, for a greater feeling of home. Letting go of expectations will open relationships to greater love and deeper trust. Letting go of negative feelings will help me better love and nurture myself so I may share more love with others. Letting go will open my heart, my mind, and my spirit to God's abounding love, and to receive the great Gift he gave all of us through His sacrifice.

I'm also letting go of Lent - of how I think Lent should look or feel or be. I'm letting Lent be what it needs to be for me and for my family, as we journey through loss and change and growth and all the unexpected blessings that are the true gifts of life.