Monday, May 25, 2009

Weekend Wanderings

Weeks go by quickly and before I know it, it is First Day again, or should I call that Sunday? In our family, right now, we seem to use the two interchangeably. Yesterday, I overslept and so our weekly dilema of whether I am well enough to go out to Meeting or Church became a moot point. Neither did we have to decide then which one we would head off to; that in itself was renewing. Instead, after a slow morning, we meandered around my favorite farm in our area, which is actually just minutes from our homestead. We feel right at home there as my husband and older daughter spent several seasons participating in a work exchange-education program at the farm. So when we go, we tend to allow ourselves to go to all the little forbidden hide-aways in these precious acres. Of course for me, that leads us along the straightest path possible through the woods and to the rocky creek below.

Memorial day denotes the official start of barefoot season at my house. It also means the big rubber boots that we water stomp in get tossed off and the first few steps in cold spring water are taken. Little one never hesitates.

I'm not convinced that God is offended by our lack of attendance, but rather may allow us to worship him along different paths in different seasons of life. Dear one often does devotionals of the girls choice and Bible readings for us on a Sunday, and so joined us and brought it all along with my picnic quilt. We set up our time for quiet comtemplation and devotions right there along the water.

Little one decided she could listen best from this rock that she affectionately named her "devotional rock." We all have our different learning styles!

Right there I prayed for the moment, for today, that the Spirit would come play in this place.....

......And to renew and strengthen us, bind us together to face the coming weeks ahead.

"For with You is the fountain of life; In Your Light we see light."
Psalm 36:8-9

Sunday, May 24, 2009

Party Time

I attended my first party in over three years this weekend other than extended family parties. I'm telling the truth, it's been that long, and I was frankly a bit overwhelmed with the thought of it. I've decided taking myself out, is akin to preparing to take a newborn out for the day. I'm never quite certain I'll be up for the task and how long I can deal with pain outside of my home without normal routines.

First of all, I've long given up the delicate purses and traded them in for a bunch of pretty tote bags. Even using them, I'm hard pressed for space. I need at least 3 water bottles, major amounts of medication, 6 types of eye drops, mouth moisturizer, candy, and food and snacks for every two hours I am out of the house as I cannot eat what most "normals" do. There's no quick dash through the nearest fast food drive-through that can serve me! I should be used to this from going to the doctor's offices so frequently and I really am getting in the habit of having my bag stocked and ready to grab at the last minute. However, instead of at the last minute grabbing a baby, I've got to make certain I've grabbed my moisture chamber glasses. This is no problem for a medical appointment or even out to the shops, but to a party I felt a bit shy. Well, perhaps a bit more than shy, I think I was feeling probably a little more apprehensive than that and on the verge of a panic attack beginning to register a 10 on a scale of 1-10.

When I first understood that I'd need to wear these glasses for dry eye due to Sjogren's Syndrome, I was told it would be just for an hour or two a day to help increase moisture. I'm one to roll with things, and decided to go ahead and purchase an inexpensive pair in pink. (Not shy at the time!) No big deal. That was last August and now I've faced the truth that I will always need them outdoors and can only take short breaks of maybe an hour or two off indoors. So, for the next pair I bought an expensive pair of glasses in tortoise that are photochromic and have an orbital seal. I don't think a thing of wearing them within my own home, as they help me profusely. One quirk indoors is, for some odd reason, I am unable to deal with wearing them while taking a phone call. I have no idea why....

Enter a party and all eyes turn for greetings and introductions. Outdoors, these glasses are not that noticeable, but indoors believe me people really stare! Mind you, last August I was extremely happy to replace my ordinary distance glasses with the most dainty little pair I've ever had before this heavy duty construction zone job! Well, those prescription glasses rarely get taken out of their pretty little case. I need to do what is best for me. What I wasn't prepared for, is I seem to be able to attract a whole different population of people, and these people are quite impressed! Truth be told, Sjogies have very little options other than culinary onion glasses or motorcycle glasses to act as moisture chambers. Someone definitely needs to market to our needs and could make a great deal of money, but as it is now it takes some ordering online or a jog down to the nearest Harley-Davidson Shop for a pair of Panoptx or Wileys and they are very tricky to fit properly. I've got Panoptx Solanos and evidently, they are COOL glasses to a very minute population of party goers. Who would have guessed?

I've decided I'm up for it. I might not be healthy enough to attend a lot of parties or to stay out until the wee hours of the dawn anymore, but I'm going to keep adapting and not let it get to me as much. I'm ready for the next party.

Wednesday, May 20, 2009

Wildflower Wednesday

"Give thanks to the Lord, for He is good; his love endures forever."
Psalm 107:1
purple trillium


Jack and the Pulpit...perhaps a reminder to sit and listen

lady slippers (yellow!)

native azaleas

Saturday, May 16, 2009

Here We Go Again

One glance out the window and I read three bodies like a book. Husband’s confidant and strong, one daughter steady and the other is absolutely distraught looking at our latest mess. Two horses, one running strong and the other one visibly sick. Then there’s me right then and there, having that same conversation with God, thanking him for his very Being in the midst of our complexities which we often bring on ourselves.

I’m holding on thanking him for his Presence with eyes wide open. Telling him once again I don’t understand, I whine a bit but tell him it’s all good. I know there’s good. The ill horse has gotten strangles–horse strep–every horse owner’s nightmare. I continue praying; I’m whispering my story, what’s important to me. It’s that story where my kids grow up with security, free from fear with a happy ending, but once again my heart’s skipped a beat.

The phone conversation repeats in my mind: highly contagious, too late to quarantine the other horse, no medication at this point so we just let it run it’s course. I think some people purchase a horse, put it in a field and it lives there for 25 or so years and then dies. Not our story. Well this is, and as symptomatic as this illness in horses go, it’s upper gland on the side of it’s neck has finally abscessed, split open and is draining white thick fluid like water pouring out of a hose. It’s day three and it is still draining.

Some times all gives way. Life is like that.

This will pass, though things like this tend to trip me. See, I’ve always been a late bloomer. I’ve had a strong faith for so long, but fears and trust issues challenge me periodically. I fall but I always get back up because it’s God that holds my hand and makes me a bit stronger, more focused, determined and growing in peace. I can’t do life without this praying continuously. But kids–kids are a big leap of faith. They are God’s and he’s entrusting them to me for a time, which is a huge responsibility.

So, how do you tell them that life’s slippery and it hurts, that all the while still hope glistens and there is joy if you hold on at the same time. That’s it, I mean, the holding on I must teach them as I learn myself. It’s not the same manner of living I lived just a short few years back; it is new territory. The little one has not had a similar experience as our older children. She’s experienced a lot of failed plans, and seen a lot more pain. She can only remember me sick, she does not remember the secure times, the times filled with spontaneous life and laughter. It some how doesn’t feel fair, her being the most sensitive of the bunch but life is not about being fair. Some days I think she is being prepared for quite a journey and is gathering training and strength to run her own race with resilience and I guess they all are.

I awake to a new day and her crying. She’s responding to being told that she is not to go into the horse area for a few days and that her father will feed and care for her horses. The cries don’t stop from this little one and as certain as I breathe, I knew they would not any time soon. Neither will she accept a hug or any consolation until she’s exhausted herself. My heart twists, as while watching this quiet one on the surface, she is normally doing all she can to please, but at the same time there is this little undertow of current with waves that crash due to her stubborn love. There is a small place that does not go with the flow. She is familiar. I recognize the way she loves and it is relentless, coming from a heart that spills. She’s heart broken down to her toes. She’s in for days stretched out before her of not hugging, touching, or grooming her horses needing all the while to care for them in illness and it’s due to me, her momma. A momma that needs to err on the side of caution due to taking immune-suppressant drugs. This momma hurts for both daughters, feels hope shot so soon in our second try to move on with these horses after the death of our first. Perhaps I am too introspective as my Beloved here motions about finely tuned and taking care of business as normal, sure in the midst of the heart spill. But there is an ache on the way to eventual happiness around the corner again, as this hurt and joy given mingle. I see a "maybe happy ending" out the window now that the little horse is eating it’s grain. It will turn around again. I want to turn around again.

I know that I should not shelter my children and I cannot take away life’s uncertainties. Every day is a precious opportunity to learn together how to accept and live this life. While some times I’m mumbling my words as I go along in prayer and other times in communion within silence, each day is a new story of learning to rest, trust and grasp hold of the abundant life, the one we all have been granted.

Little one finally accepts that hug and holds tight, our tears becoming one stream together. I read her face again and know we will be alright. It takes me a while to get there too, but the verse comes to me without seeking it out: "Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus." (1 Thess. 5:16-18.)

Wednesday, May 13, 2009

Time to Fly

"If nothing ever changed, there'd be no butterflies." --Author Unknown

Wednesday, May 6, 2009

Wordless Wednesday

As usual, it is hard for me to be completely "wordless". The item draped with the quilt in the background is a tv. that was blaring a ball game. It was our attempt last evening to make things a bit "wordless" so the quiet one could practice her harp. She is dreaming of a big cherry harp with all the levers and I am busily holding off and teaching contentness for the moment......

Sunday, May 3, 2009

Sjogren's Syndrome Walkabout 2009

I wasn’t looking forward to it. I avoided the notion of it for an entire year now, tucking the inner voice that was working on prodding me out of my comfort zone into action tightly away. A year ago this month, I was formally diagnosed with Sjogren’s Syndrome, which is the second most common autoimmune disease with a staggering four times as many cases as Lupus, yet so little is known that the majority of both general doctors and specialists are not educated in the simple symptoms enough to screen their patients and point them onto further diagnosis. I’ve lived this year in much thought about how that needs to change practically speaking and also carrying a load of guilt that I am the first person within my entire extended family to have an autoimmune disease; I have regrettably hurdled this genetic marker into our family’s future. The ability to join Sjogren’s Foundation and fund-raise has given me some where to put some of my thoughts into action.

To know me, is to know that I would not spontaneously choose to attend a walkabout with people with my disease. It is not that I do not feel compassion and great empathy for them, but my experiences with them has often led me to compare or catastrophize my own case.

I don’t breathe well in doctor’s rooms.

I don’t breathe well near other sjogren’s patients.

I wake up not breathing well with the thought that I am an autoimmune patient.

Though I am learning that I am truly no different a person than the day before I was diagnosed. Nothing really changed the day after and I’ve just been given a title in a society where it is almost a sin to have an undiagnosed disease, so it is for the best. It is information that I needed along with symptoms justified, and we are all in effect, in this process of dying. Socrates had a phrase for it, how to engage our days with "the practice of dying," asserting there is no way to fully live until we know how to die. I think I’ve walked a while down that road in my own mind a few times and so now most days I am ready to live more.

In the process of this daily dying and reflecting on that, I surprise myself at times and find the deeper, wider life. It’s not the one I had planned, but it is a life. Also, as a Friend, I am reminded to live means to take an action however small, to let go of all the stuff; all the cumber that weighs one down, as well as any lingering bitterness in the backroom of my soul.

So, I walked. I attended the Philadelphia Tri-state Area’s fund raiser along with my family. I had the pleasant surprise of a good friend who insisted she and her family walk along with us for support. I saw other people appearing a lot stronger than myself and many further progressed than me. However, that all faded away walking toward that common goal of continued research for future generations so that this neglected disease will get the attention it deserves and our descendants and others who will pass this way will not suffer so. There was no need for explanations, there was no need for embarrassment of wearing my hydration glasses, for clutching my water bottle, applying eye drops and taking medication. That was pleasant, as was the display of families just like mine, laughing, talking and persisting in living. Life holds many of these surprises around every corner, reminders of living with gratitude and joy on the way to death.

Together, we raised a total of $68,451 this past weekend. I did nothing but show up and give all the credit for my total portion to my family and contributors. I shocked myself in my ability to walk 1.7 miles that I never thought I could, but even more significant, I left with a little more joy and relief as I’ve dropped some of my guilt and sorrow, the responsibility I’ve carried for scarring my family. As I left, I tore the scarlet letter off my chest.

"Therefore we do not loose heart.
Though outwardly we are wasting away,
yet inwardly we are being renewed day by day.
For our light and momentary troubles are
achieving for us an Eternal glory
that outweighs them all.
So we fix our eyes not on what is seen
but what is unseen.
For what is seen is temporary,
what is unseen is Eternal."
2 Cor 4:16-18