Weakness splintered through with joy

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IMG_0478With trepidation I packed for yet another trip to Seattle.  This time it wasn’t so much fear of test results.  Allistaire seemed to be doing well and I was hoping labs, an exam and CT would confirm what appeared to be a girl full of life.  Honestly I was afraid to even get on the bike.  Not only had I not even sat on a bike since last year’s Obliteride, I had never sat on a road bike.  I wasn’t sure how I would balance on those nimble tires or have the presence of mind to both figure out how to shift those weird gears planted on the center of the frame below the handle bars and get my legs to push up a hill at the same time.  We had lots of company the end of June and into July and I just didn’t feel I had the time to train.  I mean what would happen if I only had time for a few rides – just enough to make by butt hurt real good but not enough time to get acclimated?  Surely I was stronger than a year ago, right?  I mean, I no longer live every day sustained by the steady stream of Starbucks food and I’ve been regularly hiking a big, lovely hill near our home.  I was swapping out my old mountain bike for my sister-in-law’s old road bike.  It’s all fixed up she told me.  Plus, it has these sweet bright blue pedals that match the bright blue water bottle holders.  Bright blue is well-known to increase speed and stamina.  One year prior, I got on my mountain bike with eye lids still swollen from hard crying the day before.  I didn’t know how I’d make it through those 25 miles, but I knew that the news that Allistaire only had a 5% chance at life and probably less than 6 months spurred me on all the more.  Never was I so determined, so motivated to the core to exert myself for the hope of better options for my beloved.  Cancer research was the only thing that would give Allistaire a shot at survival.  And my whole self tore open with anguished, wailing love for her.  No matter what, I would ride those 25 miles.

It has been one year since that brutal day; that day that lacerated my already tattered, bleeding heart.  I told myself two things.  Someone has to be the 5% – whose to say Allistaire won’t be in that small space of survival?  God, my God, the God who ordains every day of my life before one of them comes to be, this God is in charge of Allistaire’s life.  It is He who will determine how long or short this little girl lives.  Her life is in His hands and no cancer or other threat can overpower the beautiful sovereignty of God.  And so here we are, one year later with her life thriving.  Thus far she has been spared and while God has capacity to use mysterious means to accomplish His will, so too can He use the tangible, the measurable, the concrete.  He chose to use a clinical trial through Fred Hutchinson Cancer Research and the brilliant minds of the doctors there to offer healing from certain death for my daughter.  And I rejoice that even the tangible nature of chemotherapy is still mysterious as is the spectacular immune system.  Right there, within the concrete is incomprehensibleness, is throbbing beauty and glory!  So now I have even more reason to get on my bike and ride.  I have all the more reason to shout my thanks and endure whatever pain and challenge this bike ride might present.  It’s weight negligible like that of a shadow of the real thing.

At last the time came to depart for Seattle.  I got on the bike just long enough to lower the seat to the appropriate height.  I learned how to secure the bikes to our new bike rack and we set out.  It was supposed to be a quick stop to pick up bagels for the road trip ahead.  Somehow, however, a man in a very tiny teal car managed to not see the enormous shape of a Suburban and bike rack laden with 3 bikes, backing right into it.  I was so flabbergasted that I could not even manage to see the mangled front wheel of the bike I was to ride.  Thankfully he was an honest man and stayed to acknowledge his action and provide insurance info.  We sped westward, through smoky summer skies from countless forest fires in the Cascades.  In Olympia, Washington, at last we arrived and were able to get the bikes fixed thanks to the great guys at Joy Ride Bikes who made it happen despite their crammed maintenance schedule.

On Thursday, August 7th, Allistaire had another CT to check the status of the Cryptogenic Organizing Pneumonia (COP) in her lungs.  We then had to head over to SCCA (Seattle Cancer Care Alliance) for a blood draw and appointment with Dr. Carpenter.  I had dreaded this moment where I would have to park the beast of the Suburban, now extended by another nearly 4 feet due to the bike rack, in the cramped SCCA parking garage.  There is a fellow whose name I don’t know, but who almost always works the parking booth.  Over the many months of appointments at SCCA, we have a running joke about his juice he sets just outside his window to keep it cool.  Our connection is clearly not deep but nevertheless joy to have familiarity with this other human, he a lovely Eritrean man.  It only took eye contact for him to wave me into a reserved parking spot, vast in its proportions.  I didn’t even need to speak a word and with a wave of his hand he provided for one of my bright points of anxiety about this trip.  Thank you Lord I repeated.  Thank you for caring for even the smallest detail of my need.

We arrived early in order to get blood drawn in time to have results back by our appointment time.  Allistaire’s face turned red as she began to scream in fear of what was to come.  Solveig looked terrified and wanted to flee the room.  I forced her to stay, to allow the sound of those cries and the look of terror on her sister’s face to enter into her.  How little she knows of her sister’s suffering, how intangible it has been to her.  Here Solveig, expose your heart to the biting pain of your sister’s pain, know in very small part her reality and thus your understanding will expand and your compassion grow and one day when you look back upon these days, perhaps you will see them not only from the perspective of what it cost you, but what it cost your sister, what it cost me, what it has cost us as a family.  I pray then you will know that I would have never left you had I not been forced to.  When you see the closeness I have with Allistaire, I so hope you understand it is because I had to wrap my life around her’s with all the strength I possessed.  She was surrounded, death pursued her and it was all I could do to try to shield her.  Thousands upon thousands of times I looked at her face wondering how many more times I would be able to do so.  I greedily took in the curve of her cheeks and dimple, the color of her blue eyes and I craved yet more of her because I was desperate to not have her ripped from my arms.  I praise God I have never known that sort of threat on your life Solveig, but it has also had the effect that I have not cherished you as you deserve.  My dear love, my first-born, please forgive me and find in your heart release for my loving you differently.  I never intended to.  And I fight now to gain that closeness with you that comes so easily with Allistaire.  I seek to gaze into your beautiful gray hazel eyes and watch the adorable way your lips move over your toothless gap.  I force myself to slow and take in the wonder of who you are, how it is possible that such a creature, so vast and individual and beautifully creative could have actually come from my flesh.  My mind contorts to try to fathom that your eight year old limbs were ever wee enough to have grown inside of me.  I listen to your joy as you finish book after book, consuming stories with the gift of your amazing imagination.  While I have had to focus so long on your sister, you have grown taller and taller and more and more your own person in the world.  I love you dearly Solveig Kailen and I pray the Lord will help me to make that known to you sweet child, that you would go out into this world knowing how very wondrous you are and dear to me.  I have to trust the Lord with this brokenness as much as I must choose to entrust the brokenness of Allistaire’s flesh with Him.

Without even fully entering the exam room, Joan Suver, the amazing P.A. that works with Dr. Carpenter, swept in, pale yellow gown flowing and her voice trilling that the CT looks great.  If results were going to be announced in such form I figured I might as well blurt out my request to know how the labs were.  Great, great, she said.  The CT showed no evidence of COP.  Her white blood cell count 8.32, hematocrit 43, platelets 212, ANC 6,830, and liver functions tests 32 AST and 21 ALT.  “Well she has a few freckles on her face,” I said tentatively, knowing her skin would be scrutinized for GVHD and failure to protect her from the sun.  “Oh, she looks nice and white,” Joan responds.  I sighed relief at good results and the freckles being allowed to only be signs of cuteness, not lack of protectiveness on my part and danger for Allistaire.  Dr. Carpenter later entered with a question. uttered with laughing voice, “Did you have a transplant?”  Allistaire just giggled and rolled around on the crackly paper atop the exam bed.  She mostly obliged with the exam and went through the required maneuvers such as criss-cross-applesauce and my favorite, the namaste pose where both palms meet and elbows flare out perpendicular to the torso.  All these positions check for evidence of skin and joint tightening which can be signs of GVHD.  Once again, it was stated that having had a peripheral stem-cell transplant, Allistaire is at highest risk of chronic GVHD.  “For how long,” I plead.  Apparently she is at risk for up to 3 – 5 years post transplant to still develop GVHD, so no evidence now is no guarantee she is in the clear.  Nevertheless for the time being, she looks remarkable.  So pleased was Dr. Carpenter that the conversation about future appointments was extremely low-key.  He feels no need for her to have another CT to check her lungs unless symptoms show up.  We talked about her next appointment being either around Thanksgiving or New Years – it’s up to us to decide.  So amazed by this release from constant doctor appointments and trips to Seattle was I that I forgot to even ask about blood tests.  When it occurred to me, I tracked him down in the hall.  “Does she still need monthly blood tests?” I asked with eyes wide.  “Oh, no, I don’t think so,” came fast his words.  Then, with head cocked to the side, he tells me just to pick a date to have her labs checked halfway between now and the time he will see her again.

We left the 6th floor and I sort of just floated out, mouth inwardly gaping at our continued good fortune.  We had intended to explore the gift shop for a few minutes at Allistaire’s request; this a well entrenched tradition of ours.  And then there was squealing with glee and I jerked my head to look for the source.  There coming out of the bathroom, were our friends from Bozeman that we met through the Kid’s Support program provided through Cancer Support Community.  I knew they were in Seattle for Megan’s follow-up CT for lymphoma.  I knew that they had been given the incredible gift of clear scans.  What I didn’t know is that Megan was at that moment scheduled for her very last blood draw followed by having her line pulled.  What joy it is to see people from home, people who inhabit both worlds of Bozeman and Cancer.  I had to hold back my hand from rubbing the fine light brown fuzz on top of her gorgeous head.  My cheeks hurt with a smile that would not let down from joy that would not stop.

After a fun day hanging out with Emily, Jo and Lysen and the girls staying with my parents, it was at long last, time to get on with the business of Obliteride.  Emily was giddy with excitement and repeated how great the course was.  With joy she relayed that we would go down Lake Washington’s west side, around the bottom in Renton, out to Issaquah, up to the I-90 bridge, around Mercer Island, across the I-90 floating bridge and back up to Magnuson Park where we began.  Only then did the terror of the actuality of those 50 miles really start to sink in.  I was very, very familiar with these landmarks and knew how long it takes to drive that route, I could not imagine how I would make it all that way on a bike.  Oh, and the course was actually 55 miles rather than 50 I learned – that’s just what they had to do to make the course work.  Oh dear.  Oh dear.  This could be very bad.

On Sunday morning, August 10th, we set out from a friend’s house a few miles from Magnuson park.  This was my chance to get the feel of my bike and figure out how the gear shifters worked.  My dear friends knew my fear and continued to encourage me that they were here to do this with me.  I cannot overstate how indebted I am to Jo, Emily and Lysen for making this ride with me and being an incredible support.  They sacrificed time, money and the fun they could have had to ride by my side, supporting me, our family and  the furthering of cancer research at Fred Hutch.  Such amazing women I can count as dear and close.  We rode the first 14 miles to the first aid station rather uneventfully.  I realized quickly that if I was going to make it to the end, I had to maximize my momentum on the down hills.  At one point I somehow failed to notice the tide of bikers in front of me turning right.  Somehow I missed the police man too as he waved out our direction.  I blasted right through the line of cyclists, narrowly missing the back wheel of one and had to make a fat U-turn, losing all speed as I approached the hill I should have glided up.  I confess I did not delight, as I could have, in the spectacular views of Lake Washington as we rode along.  I was intent on making my legs turn.  At our first stop I did not choose to indulge in the gummy bears and chips and such.  Why would I need those?  After using the port-a-potty, and determining to try to enjoy myself more, we set out.

The path out of the aid station excited immediately up a steep hill.  As I struggled up the incline, I spy Emily crouched down at the top, intent on getting my photo.  “What are you doing that for?” I gasped.  “So you won’t forget this hill,” was the response.  As though I could.  We continued on south along the lake and as we rounded the bottom and headed back north on the east side, I began to feel cramping in my quads.  Lysen generously offered me her water bottle full of electrolytes.  It soon became clear that not only was I not physically prepared for this ride, I was ignorant of what one does to prepare to endure long distance.  I knew nothing of electrolytes and goo and salt and all that stuff that could help get me through.  Not long later I was mystified to feel my quads turning to concrete.  It was such a strange sensation of them absolutely losing their ability to function.  Can you tell I’ve never really had to fight long to get my body to do what I need it to do?  Around the point on the Lake where the enormous Seahawks training facility juts up out of the trees, I sat on the side of the trail while Jo and Lysen massaged my quads with the mysterious glory of BioFreeze and I chugged more electrolytes.  Finally my quads released their rage and we went on.  We agreed that at the next aid station I would tank up on all those essentials laid out for our consumption.  I was slow enough that Lysen and Jo had the time to stop for some much-anticipated blackberry picking.  Jo had rigged up a cup on her handle bars for just such an occasion.

The third aid station was situated just at the top of the first segment of the I-90 bridge on Mercer Island.  There I ate salty chips, gooey gummy bears and even succumbed to a banana, my least favorite food, all in the attempt to pack in all those mysterious elements my body needed to keep my muscles functioning.  I felt good as we departed but was again amazed at how even the slightest incline felt ridiculously more difficult than it seemed it should have.  At times my friends rode on ahead of me to give me more time to anticipate a turn or make use of my speed down a hill.  The view was beautiful as we circled Mercer Island but I soon became very, very ready to get off the island and closer to our finish line.  As we headed up the western side of the island toward the second segment of the bridge, there appeared in my view a long hill, not so very steep, but so very long.  I saw a few others walking their bikes and I determined I would not walk, rather I would take it in the easiest gear; surely that would work.  But as Emily lied, yelling out she saw the top of the hill, I felt that now familiar sensation of my legs cramping up into rock solid forms.  At one point I rode so slowly I was amazed the bike stayed upright.  I could not believe I was riding slower than it seemed I could have walked.  It came to me that I would have to walk the rest of the way up the hill, my quads were about to seize up.  And then as I set my right foot down, it locked up solid.  In an attempt not to fall over, I set my left foot down only to have that leg seize up as well.  I looked helplessly down at my legs unable to remain standing, but utterly incapable of getting myself off the bike to sit down because my legs would absolutely not bend.  I called for Jo and Emily who were close by and somehow I found myself sitting in the hot gravel alongside the road, my legs so tight that the heels of my feet could not even rest on the ground.  I cried out for the BioFreeze, which with blessed speed Emily and Jo began vigorously slathering on my thighs.  Cars and bikers alike stopped to see if we needed help.  I suppose it looked as though I had crashed, so hastily was my bike discarded.  At one point I asked Emily to bend my legs, but the pain was so intense I made her stop.  Eventually the BioFreeze started to take effect and I grabbed each ankle, forcing my legs to at last bend.  Throughout this agonizing few minutes I had the sense of having an out-of-body experience.  I really had never imagined this sort of thing happening.  I mean, I knew the ride would be hard, but I figured with a road bike and being a bit stronger, it would actually turn out better.  I was mortified at how horrifically weak I apparently was and couldn’t help but laugh at how outrageous the whole thing was.  I felt bad for my weakness so impacting the ride that my friends could be having, but I was also so thankful for their generous presence in the face of my absurd incapacity to do what I had determined to do.

We made it to the top of the hill walking.  Emily called ahead to the next aid station to ask them to set aside some BioFreeze for me, as we had used up all of our supply.  She hesitantly told me they also said they could send an aid car.  NO WAY!  No way!  There was absolutely no way I was going to get in an aid car.  Somehow, someway, I was going to finish this thing, even if I had to walk the last 17 miles.  Emily generously offered to let me ride her new amazing bike, thinking it would be easier on me than the old mint green Bianchi.  We didn’t have the tool necessary to lower her seat so we decided we’d switch at the next and last aid station.  As we descended down the hill and onto the floating bridge portion of I-90, I felt my quads ever on the verge of absolute cramping again.  I wanted to turn my face to the glorious wind sweeping off the winds of  Lake Washington to the north, but all I could think is that I needed to get across this bridge and make it to the aid station on other side, at the top of another long hill.  Once I sensed my quads, hamstrings and triceps all in cramping revolt, I got off and walked the rest of the way across the bridge.  Eventually the metal clicking of Jo and Lysen’s clippless shoes joined my slow progress forward.

Turns out there was no BioFreeze left at the aid station, but I forced down more chips and another wretched banana while Emily adjusted the bikes upon which we planned to trade places.  As my contact lenses conspired against me and dried out so I could not see clearly, I tried to both make the most of the speed gained on each hill and not crash Emily’s new bike on some unseen crack or hole in the pavement.  At long last we were back across the University Street bridge and now I knew the streets intimately having lived five years of my life at the University of Washington and then all those months at the hospital and at Ron Don.  It was sweet relief to see a dear and familiar part of the Burke Gilman Trail.  We crossed 41st street, just on the north side of Ron Don.  How strange it was to exist in this same physical spot exactly one year later.  It was from this crossing we set out to Obliteride a year ago.  How many times had I waited for bikers to pass before crossing over this line in the months we fought for Allistaire’s life.  It was surreal.  As we grew closer to Magnuson Park, my emotion, pressed down in order to focus on the physical challenge, now welled up.  As much as I yearned to be done with this ride and off this bike, I yearned more to see Allistaire’s sweet face and hold her tight.  What gift it was.

I had felt so very weak a year prior.  I felt beaten down, crushed.  I thought I was stronger now, but clearly, almost not strong enough to make it to the end.  Were it not for my sweet, patient friends and the grace of God, I would not have made it.  What takes an average of five hours, took me seven.  Part of this journey, a big part really, has been about learning to accept and come to peace with being weak.  Weakness was always something I reviled and fled from.  I would go to great lengths to avoid those things that put my weakness on display, like playing volleyball which might seem insignificant but is just one marker of my desperate need to feel in control, not stupid, not ugly, not weak, not a burden on others, not useless.  I’ve worked hard in my life to excel at what’s in front of me and I have unknowingly worked hard to protect myself from situations where my confidence would be challenged.  In many ways I have been a fool.  In many ways I have just been an average human, weak and made of dust, temporal and flawed.  I have sought to find a foothold here and there to steady my life, to keep my head up, to keep from sinking.  I have tried to pull in towards myself, to gather those identifiers that might buoy me up, that would color my life as worthwhile, as admirable.  In the last two and half years, these footholds have given way.  I have no job, no career, no assets, less beauty, less awareness and intelligence about the happenings in the world.  While some have offered words of what a great mom I am, I know my propensity toward anger and impatience.  I am well aware of my failings.  I look around, wildly at times, searching for those stones upon which to stand, upon which to build my self-worth, my identity.  My panic comes sometimes as anger, sometimes as tears that won’t stop.  As I stand in the circle of beautiful, intelligent, accomplished women at Solveig’s school at pick-up time, I feel grossly inadequate.  And I see Him out of the corner of my eye, and I know exactly what He is saying to me.  He is calling me yet again, to at long last, just rest in Him.  There is no panic in Him as my strongholds are torn down bit by bit.  He is not anxious as He sees me sink down.  He stretches out His hand and calls for me to grab hold, to stake my security in the one and only thing, being actually, that will never give way.  He sees me utterly as I am.  He is not fooled.  He is not enamored by my attempts to look good.  He loves me just because He has chosen to and because mysteriously, miraculously and gloriously, He has made me to bear His likeness.  My identity rests solidly in Him, on the claims He has made about me.

So as I sat on those hard, hot rocks on the side of the road, forced to accept the help of my friends, in a most unflattering way and later as I succumbed to a massage of my weary muscles, glutes included, I gave in to my weakness and received care and kindness.  I am finding strange delight at being at ease with my limits, my finiteness, me neediness, my weakness, my unloveliness.  It still absolutely cuts against the grain of my natural self, but I am discovering the power and weight blown out of my fear.  I am stripped and found weak, and yet I stand.  I stand.  I stand with head held high because He is my foundation.  My Father is my strength.  His power is truly made perfect in my weakness.  It is mystery.  It is beauty, as of another world.  I grasp words to put outline to the view the Lord is showing me.  While Allistaire thrives, I know at any moment the ground could crumble again.  I still struggle with the sin of my anger, at the many ways I tear down Solveig when I should be the first person in her world to build her up.  I have shame over that failing.  I still have no work besides that of a housewife.  I am still unclear on the way ahead.  My life is not all cleaned up and pretty.  It is in many ways ragged.  I often still hit that wall of panic, of the suffocating, drowning sense that this is not how I imagined my life, this is not what I want my life to look like, this is not who I ever wanted to be.  There is so much outside of my finite control and want to scream and cry all at once that I just can’t seem to fix it.  But He is ever there, calling my name, extending His hand, soothing my brow, calling me to rest in Him, to trust Him, to give way to His sovereignty over my children, my husband, my days and my heart.

I want to be the strong one, the one to forge ahead.  I want to be in control of my life.  I want to have the capacity to determine the course of my days.  I would far prefer to be the one to give than the one who must stretch out palms to receive.  This year’s Obliteride was and will be quite memorable, epic even perhaps.  Not in the way in which I would have wanted, but really, in a glorious way that highlighted what needed most to be highlighted.  That we are people frail, at risk for all sorts of brokenness.  My sister’s were the hands and feet of Christ to me, caring for me in my weakness.  And in my weakness, I gave all that I had to give, which was little, but all that was necessary, and even in that there was beauty.  Beauty and grace marked the day.  And thanks, thanks and praise for the bounty that I celebrated having the joy to receive.  It was sweetest, overwhelming joy to hold my little girl tight in my arms, to know it could have been different, so very different.  It is a foreign fragrance, as of another land, to be at rest with weakness as I rest in my God, to be in need and to receive so abundantly.

Thank you to all who gave so generously in my name to Fred Hutchinson Cancer Research Center.  I am indebted to you as I am to those scientists and doctors who tirelessly endeavor to find better ways to put an end to the ravages of cancer.  And if you can believe it, despite it all, the whole experience has made me excited about riding again next year and the next and the next.  I’ve actually started imagining the fun I could have if I had a road bike and got out regularly, barring the snow of course.  I might be able to actually enjoy the scenery next year.

If you’d like to give to further cancer research but fear you’ve missed the deadline, fear not!  The cutoff date to give to Obliteride isn’t until September 30th.  So far, $1.65 million dollars has been raised, but this is $600,000 short of the goal.  So feel free to click HERE to give to Obliteride in my name.  Remember, another way to give to Obliteride is to order a sweet Smack Down Shirt.  Your last chance to get a Smack Down shirt ends this coming Friday, August 29th.

There’s yet another amazing way to give.  My sweet and hard-core brother-in-law Bjorn, is running the Cascade Crest 100 – a 100 mile race today, August 23rd, in the Cascade mountains of Washington.  Yeah, you read that right – one hundred miles.  Part of his motivation to run is to raise financial support for the Ben Towne Foundation which specifically conducts pediatric cancer research in Seattle in collaboration with Seattle Children’s and Fred Hutch.  One hundred percent of all donations to the Ben Towne Foundation go to directly to fund pediatric cancer research.  You can click HERE to go to Bjorn’s fundraising page and give.  You can also watch a short video of Bjorn HERE as he articulates his motivation to run and you can track his progress in the race HERE.

Lastly, following are a whole bunch of fun pictures from our Obliteride weekend.  After that I have included some of the harder pictures from a year ago.  The last picture is of Allistaire just a few days ago, making impressive progress on her salad training.  She actually declared that she loves tomatoes and cucumbers and cheered when she was served up a plate of salad for dinner.  Shock and awe.  And thanks 🙂




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2 responses »

  1. I rejoice with you at Allistaire’s test results and her life filled being! I know that man at SCCA parking garage! We have teased him about his juice sitting on the outside ledge. Bravo on finishing the course for Obliteride! Anna desires to enter next year as she will (hopefully) have more time to prepare now that she is well on her way to being her normal energetic self again! Her brother and a friend from church also want to enter. So glad that you all are getting your happy ending!! Love to you all!!

  2. I read this just after getting back from my trip, and I keep thinking about the cramping, the stopping, the brutality of 55 miles untrained and unready. And I remember falling into Rob’s arms weeping, for the frailty of a small life that I cared about so very much despite only knowing her through church nursery. And rejoicing when you rejoiced. What a privilege to walk with you, however indirectly, in this path through life, pain, love, joy, grief, burden. What a joy to get to see you face to face and learn more about each other while our children beat the tar out of one another. I appreciate you and your frankness, your care with words, your story-telling, and your heart.

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