Girl of Fiery Spirit

She inspires me, this girl of fiery spirit and noble heart. 

At such a young age, she knows her passions and dreams and is happy to put in the work to make them come true. She plans for a life of passions fulfilled, from horse farm to gluten-free bakery to home and family. But before that, a pursuit of knowledge through experience, experience through travel and exploration and hands-on-learning. She is fearless in this, taking on any task head-on. 

Her heart soars as she plays with little ones; as she remembers caring for and riding horses and dreams of doing that again soon; as she sings songs of thanks and praise while whipping up one gluten-free confection or another. Her joy is palpable as she does these things, and it's difficult not to get caught up in joy with her. 

She is sensitive, too. Easily upset by siblings' and others' plights. Always wanting to make things right, fair, and good. 

She is my daughter. She turned eleven today. Eleven. She is becoming such a wonderful, and wonder-filled young woman. 

I rejoice in her becoming, this girl of fiery spirit and noble heart. 

Seeing Red

The wind billowed red tapestries of assorted patterns and hues as we wound red yarn around our wrist or ankle and expressed gratitude once again for something in our lives. Connected to each other by this thread and in our thankfulness for things the size of Love to the tiniest chia seed, our formal time together ended, and feasting began.

In this Circle, we share our selves, or ideas, our hopes, our joys, and our pain. We gather to support each other; discuss life's tapestry; explore our feelings, thoughts, motives, desires, and needs; and connect with each other in a calm, loving atmosphere. We laugh. We cry. We give and we receive. We nourish our spirits with friendship and our bodies with good, good food. 

In our Red Tent, our girls come and go throughout the discussion, hopefully taking in some of what we're saying and storing it in their hearts. Today's topic is gratitude, and as I sit, listening to those around me share amazing things, my heart overflows with gratitude for these women, this place, this sacred time together.

Later, at home, I send two girls to bed, red yarn-encircled ankles and all, and once again my heart brims over in thanks for life's blessings, big and small - today, most of all, the connections between the women in my life, big and small. 

Captured Moments

Of the hundreds of photos from my children's childhoods, there are a probably only a few dozen that capture my heart. These captured moments show what the people in them are made of. Going through pictures of our early parenting years, I realized two things...

The first was that those days were my father's early grandparenting years as well. 

He is such an excellent grandfather. The look of adoration on his face when we watches his grandkids do just about anything is priceless. That twinkle in his eye betrays his still-youthful spirit. Papa has been a resting place for our kids heads and their hearts from the time they were tiny, our littlest still settling into his lap during worship. 

The second was that my husband had a lot of hair. I may or may not have fallen for his long hair before I fell for him. He's been shaving his head for five years now and looking at those pictures seems like it was a lifetime ago. I suppose it was Alia's lifetime ago, as he shaved his head when she was four months old.

To this day, my husband continues the tradition of fun and silly set forth by his grandfather, Pappy. I have to say that my kids have definitely inherited his sense of humor and quick wit. I love his spontaneity and ability to construct armor... or racing helmets? ...  out of just about anything. 

I do have to admit - in these three photos of my husband, it's not so much the long hair that makes him sexy to me (although it doesn't hurt a bit), it's the joy in his face, the fun he's obviously having, and the genuine love and care for his children that makes him so appealing. 

With great gratitude, I look forward to many more walks down memory lane, and more discoveries of precious moments like these preserved in a single image that speaks volumes.

One of Those Weeks

It's not been one of those days, it's been one of those weeks. One of those weeks when nothing seems to go right, when you can't seem to complete any major task and few minor ones. When the kids seem particularly ornery, even though it's most likely you that's overly ornery. 


Rain, lack of sleep due to carpal tunnel issues and too many happy supplements (no, not those happy supplements, just good old B2, B6, B12, and D3 ... LOTS of them, as prescribed by my healthcare providers) have all ganged up on me, and beat my emotional state to a pulp. 

I know the likely antidote or antidotes, so I shall write myself a prescription and do my best to stick with it:


1. Get. out. of. the. house. First to a breastfeeding support meeting (I first typed beastfeeding, which is also accurate at times); then for a massage, to apply for passports, and a visit to my grandmother on Friday; and then to a wonderful Red Tent Women's Circle on Saturday. 

2. Go forth in Gratitude. I need to take time each day, especially when things aren't going well, to fill my heart with gratitude for the bounty of love and beauty and good things that surrounds me. How timely that the topic of the Women's Circle is just that - gratitude! Each time I find myself getting frustrated or discouraged, I will stop, take a deep breath, and breathe out prayers of gratitude over all around me. 

3. Church. First, Coffee and Conversation, a wonderful prelude to worship, during which I get to converse with other adults about things other than parenting little ones and all that entails. Then a brief choir rehearsal, worship, and coffee hour. Just what I need to refresh my soul.

4. Family. It just so happens to be Father's Day on Sunday, complete with a gathering at my parents' house and my mom's delectable lasagna. It will be great to have some good food and good conversation with loved ones. 

Calmness wafts over me as I write this - anxiety over my overly busy week diminishes. I pray for a full night of quality sleep and a better attitude tomorrow than I had today. And I pray that we all weather this week with grace and mercy and find peace amongst the chaos that is life. 

Gray Day Blues

Bleary eyed, even after coffee and a shower, I sit, waiting for energy with which to tackle the day. A cat, sacked out next to me, seems to be having the same rainy-day issues as I. It's difficult to get moving on these days, and there have been too many lately. Gray, gloomy, damp, stormy - my joints and my emotional state don't appreciate this at all. My to-do list is long, my energy in short supply. 

Looking over my to-do list once more, and excitement fills me. Just look at these blessed things on my list:

 

Passports - who would have imagined just a couple months ago that I'd be planning for a trip to Israel in February of next year? Camp - less than three weeks away, and we're all incredibly excited!!!!!! (I was informed by the child reading over my shoulder that camp requires at least six exclamation points, so please excuse the over-enthusiasm.) I suppose I could do without the need to call the phone company or pay the water bill, but feel blessed that I may be able to lower my phone bill and that we have the money in the bank to pay our water bill, which somehow always manages to sneak up on me. Blessings abound in that list. Having the physical ability to tackle such a list brings tears to my eyes. 

And so I pick myself up and plant my feet firmly on the floor, ready to tackle the day. Instead of railing against the rain, perhaps we'll instead take this opportunity for some puddle jumping and be thankful that all this moisture will make for a wonderful wild mushroom season. 

But first, I'll go to the kitchen and beg my husband for another cup of coffee. A change in attitude doesn't change the horrible night of sleep I with which I was gifted last night. 

Rainy Day Painting Party

before

Outside, rain falls in sheets. Inside, drying off after welcoming guests, I sit, listening to a choir of giggling girls. They are creating works of art that will become a part of our lives, as they cover the walls of Haley's bedroom with a mural of their own design. Her eleventh birthday a week and a half away, Haley chose painting as her party's theme. Girls only. What a perfect activity for a rainy day!

They descend the stairs in search of snacks, which immediately get put on hold to play with cats. Finally, snacks in hand, they return to the room full of tubes and bottles of paint and all sorts of sizes and designs of paintbrushes, and let their creativity loose. I'm not sure who's more excited - the painters, or the Mama sitting at her computer, curious as to what wonderful things are going on upstairs, but wanting to let the girls have their space and their fun. 

The other half of the bedroom, if memory serves, was painted ten years ago by 1-4 year old children, then touched up and added to by grown-ups to make a nice fairy-tale-ish themed mural.  Haley, one of those 1 year olds at the time, was covered in (non-toxic, washable kid's) paint by the time they were done. Ten years ago. It's difficult to believe.

  
Emerging yet again, it's time for Dee's gluten-free cupcakes and the unwrapping of gifts. The delight on everyone's faces is priceless. When asked how things are going, I am informed that no one is allowed to see until they are done with their work. 


Daddy and siblings arriving home, the girls sprint up the stairs and close the door, banishing the curious onlookers, especially the ones who try to sneak up the stairs for a peek.


Mothers trickle in, arriving to take their artists home. Finally allowed to see the masterpiece - and the mess - it is evident that fun was had by all. 

after

So many parts of this mural are my favorites - from the unicorn-drawn carriage going over a bridge to the giant tree with an interesting story, to the love and the handprints and the magic that's found everywhere. But my most favorite part is the echo of giggles and joy-filled voices I'll hear every time I look at this marvelous work of art. 

I Didn't Know

There are so many things in life that I just didn't know, or realize, or fully take to heart. Not until I heard it come out of the mouth of a child, anyway. And most of them, I have to say, I should have known, and some I felt, but never put into words...

"Let me tell my own story. You tell yours. It's not polite to tell someone else's story." said a five-year-old to an older brother, who was "helping" her tell her story.

Those words stayed with me, whispering themselves into my ear for days. Yes - let me tell my own story. Let me own it - good and bad. Let me tell it to you from my point of view, after all, it is my story. And yes, you tell your story, too. The good and bad. I want to hear. Your story is valuable, just as you are. And no, it's not polite to tell someone else's story. Just as one cannot know what story is going to come out of a five-year-old's mouth, one cannot truly know another's story. We can only let them tell it. But it's only their point of view, you say? Well, isn't your story your point of view as well? Is your story and the way you tell it not formed by your entire life, your experiences, your brain chemistry, your programming? Just as I could not accurately tell your story, you cannot accurately tell mine, not having been in my shoes, or my wheelchair, or my body, or my mind.

"Don't just listen with your ears, listen with your silence and your heart." said by a seven-year-old who struggles to find his own internal silence, and therefore knows its value.

To truly listen to someone, to really hear what they're saying, you need silence. Not external silence, but internal. You cannot listen to someone if you are forming your own opinions, thoughts, replies, or stories while they are speaking. You cannot accurately hear what someone is saying if you don't open your heart to where they are coming from, letting go of your own suppositions, taking what they're saying without judgement, without placing value, without putting yourself in their place.

"It's ok not to be ok." said a wise almost-teenager who understands his mother's struggles all too well and uses her own words to comfort her, giving her permission to curl up in bed and let it all out, as she's done for him countless times.

I know this, but sometimes don't know it - don't own my own words. It is ok to not be ok. What a stagnant life we'd lead if everything was peachy all the time, if we were happy all the time. Growth comes from struggle, as do tears and frustrations and a need to recognize within ourselves when things are not ok. It is in these times when we need to not be ok - to sit with this not-ok-ness, listening to what it has to tell us, and moving on in the direction of what is right and good and holy.

"Some days are good for nothing, in which I mean good for doing nothing. Like nothing that requires energy or thought. Like video games. Lots and lots of video games." said by a teenager who, well, thinks like a teenager, at least some of the time. 

But he does have a point. Some days are good for doing nothing. For not having schedules or goals or to-do lists. For just lounging and reading and watching silly things and doing sillier things and just being. The thing about these days is that they are vital to our existence, especially in this world of go-go-go, do-be-accomplish. It is in these slow-down, good-for-nothing days that we can be still enough to just be, quiet enough to listen to our hearts, calm enough to let the precious moments of connection with our selves and with those around us speak volumes to our souls. 

"Sometimes you just have to go with what feels right and see if everything works out. Even if it doesn't turn out as planned, it's still usually great anyway." said an almost-eleven year old, full of moxie, about baking, but also about life. 

In the same way that she delves into gluten-free baking with joy and abandon, she approaches life. She is fearless in her baking experiments, sure that even should the end result not be as she envisioned, it will still be a delight to the palate. Life, it seems, should be viewed the same way. It may not turn out as expected, but it can still be wonderful nonetheless. If psoriatic arthritis taught me one thing, it's that things work out for the best if we let them. If there's one thing this amazing young woman has taught me, it's that I should not only enjoy whatever the journey has to offer along the way, but should move forward in wondrous expectation of brilliant things to come. 

What has your child taught you, that you didn't know?

Fun and Games

It all started with, Mama, can I use the face paint?

Rock star clown

Blue and black cat with a red scar across one eye.

Flower

The beauteous flower on my cheek, painted by our resident five-year-old, took around forty-five minutes and after this photo was taken, grew exponentially in size until it was down my neck to my chest and I announced that I needed to make dinner.

It was all fun and games until the green and blue didn't wash off very well. and it looked like I'd been beat up more than it did that I'd been ravaged by a face-painting rannygahoot. But if that's the price of priceless time with my kids, I'll pay it anytime. 

Ever-changing Landcape

There is no map to follow when living with chronic illness. The roads, the very landscape, can change from day to day, week to week. This ever-changing landscape is what makes living with chronic illness an adventure, but what also leads so many of us to feeling lost, lonely, depressed. 
  
For many of us, this unpredictable journey means never being able to fully commit to social gatherings and the unintended distancing of ourselves from friends and family as we figure out how to navigate these roads not yet traveled. At the same time, we cope with the myriad things our illnesses throw at us on a daily, if not hourly basis. It means needing to say no when we want to say yes. It means anyone who hasn't seen us for a week or a month might run into a completely differently functioning person - for the worse or for the better. Our health can go downhill quickly, or can turn around overnight. What is true for our limitations one month may be completely out the window the next. 

Having such a lack of stability in life is a major cause of depression and anxiety in people living with chronic illness, as we feel like we're more wandering through life than living it, or worse yet, heading for a goal only to have it continually ripped from our grasp. In addition, it's difficult for those around us to understand the ups and downs of our health. Strangely enough, it's often when we're at our healthiest that it's the most difficult, as loved ones are used to perceiving our limitations and are unaccustomed to the healthy version of ourselves.

At my most recent rheumatologist appointment I mentioned my issues with my neck and hands. Carpal tunnel, he said after a couple tests. And inflammation due to psoriatic arthritis / spondylitis in my neck and shoulders. After increasing the frequency of my infusions from every 8 to every 6 weeks at my last appointment, he upped my dosage this time. Hopefully this will do it. Hopefully I won't have increased side effects. It does mean change. Again.
 
Frankly, I'm tired. Tired of dealing with an unpredictable body. Tired of being exhausted. Tired of brain fog. Tired of the effects all of this has on those around me. Tired of not being understood. 
 
Don't get me wrong - my quality of life has vastly improved since going on Remicade. I'm able to function incredibly well most days. I think it's that I'm getting a taste of what normal-for-me life could be, and I merely want to get there. And just when I see normal just around the bend, a mountain of PsA issues pops up in between me and my destination and I need to make a side-trip to the ER, to the land of Prednisone, taking me way off course, and farther away from stable, from normal. I feel lost, and depressed, and as if my perception of life is once again out of whack. I know I need to find a new road toward wellness, and realize I need to address wellness in every area of my life.
 
I'm opening doors and windows. I'm letting the sunshine in. I'm getting rid of things in life that I don't need and welcoming new opportunities for growth. I'm adjusting my expectations moving forward a day at a time, an hour at a time, or a minute at a time if need be. I thank God every day for the friends I have who, even if they don't understand my illness, understand my illness is not me, and for family and friends who support me and whom I can support when they need it. I find peace in this circle that is life - where I can open myself to receiving what is needed and feels right as I give what I can and what feels right. I am learning to value the downs as much as the ups and to look for the message in my depression and anxiety, as growth happens perhaps more in these valleys of life than at its summits.
 
When I find myself growing road-weary, I take stock of where I've been and what I've learned. I look at how far I've come. I lean on family and friends, who help me find balance. I pray to God to guide my path toward wholeness and wellness, whatever that landscape may look like in my life. And I realize that sometimes it's on the bumpiest roads that we really find out what we're made of.

Out of My Mind

After telling many people in my life that I feel Called to go to Israel next year, I've received many different responses. Some of concern, some of joy and encouragement, and some of disdain.

I understand the concern. There's a lot going on in that part of the world. I'm living with psoriatic arthritis and celiac and will need to manage those things while far, far away from home. I'm taking my eleven year old daughter, who also has joint issues, with me to this foreign and potentially dangerous place. It's a big deal. A huge deal It will take a lot of money, time, and resources. I must be out of my mind if you look at it from that point of view.

I appreciate the joy and encouragement. I love hearing from others who have made the journey how wonderful, life-changing, and eye-opening of an experience it was for them. I would be out of my mind not to go, looking at it through their eyes.

I even understand those criticizing my choice to spend thousands of dollars on this trip when our family finances are at times a struggle. It's a lot of money. I am completely aware of that. It's going to take a lot of work and creativity on my part to raise the money to go, as I'm not cutting into our family's normal finances whatsoever to make this trip. I'm open to taking donations toward the trip from those who wish to donate, but am not counting on one cent of donation to get us there. 
I'm excited that my daughter, Haley, is going to learn a lot about money, about gluten-free baking (her way of raising money), about Israel and planning a journey there (her homeschool requirement for making the trip), and about earning your way toward your dreams. You can read about her journey on her blog, fuzzy yellow horse. We'd both be out of our minds to not take this opportunity for growth.

There are some things in life that I feel pulled toward - called to do. This trip is one of them. I've tried many times to talk myself out of it. But still, I feel compelled. I'd have to be out of my mind to not listen to the insistent voice that drowns out all doubt and tells me - go.

Photos of Israel taken by Brian Rajcok