Thanksgiving as an Active Verb...

My beloved insisted we use this photo: Peeps from a Thanksgiving past...notice Jeff is pouring a drink in the background. And my turkey is drinking ginger-ale.

I have a joke, albeit a bad one, that from the week before Halloween till the day after Miss Norah’s birthday (mid-January), my life is a disaster.  I just triage as best I can. 

The last few weeks are no exception. 

I shared a booth at a craft event with my dear flower girl. I made it one of the two days, my wonderful mom jumped in when I couldn't get out of bed for day two.  I've been in bed more than out and I’m not even close to my 50% benchmark. But, as hard as I try to say no to commitments and lock our life down; well it just keeps moving at warp speed. 

Jeffrey left last Monday for a business trip and my mom graciously steeped in to help with my four daily shots and ground transport for the kids on the cold mornings. Mind you we just celebrated her 70th birthday and she still works full time. She just told me that for the next three weeks, she is running the company that she works for while the GM is out of the country. We are talking 100’s of employees and she is doing all of that while keeping me afloat. So when Jeffrey returned, he rolled-in just in time to watch Ian go under with the stomach bug. So as I type here in my bed, thanks to my awesome flu shot, on a very cold Sunday and while Ian putters close by; my dynamic duo are attending mass, hitting the grocery and keeping up our appearances!

So that gives you a sense of the world as we prepare to host my favorite holiday of the year on Thursday. That’s right fellow Pilgrimage travelers, I’m a Thanksgiving girl. And it has nothing to do with the meal; it’s the ritual. 

I love Thursday because we are all one on this day. It’s the most encompassing holiday for Americans. It’s what unites us in this busy unpredictable present day world. We all want that moment to sit down and look around us and know at our core we belong; we are loved and we are valued. In all our brokenness, in all our dysfunction, we have a spot, a place at the table, a place in this world.  That is why Thanksgiving is meaningful to me. At whatever table you sit, it is home, if even for just one night. 

I have had Thanksgiving in Seattle, where we had the peeps who couldn't fly home Shrimp Creole and margaritas non traditional Thanksgiving. That one produced some legendary stories (I always think of those very special friends on this day!).  I’ve had Thanksgiving dinner at Disneyland, and at my first real job’s boss’ house, and in a seafood restaurant a month after my step-dad died.  I’ve hosted Thanksgiving for the better part of the last 15+ years.  My mom and Aunt Susan knew before I did I was pregnant with Ian, was on bed-rest with Norah with a midnight call to the OB for my horrible cough that woke the entire house full of family. Jeffrey and I have cooked this meal in countless kitchens and with too many people I love to count. 

The only constant at all these meals, my Jeffrey. The guest lists have changed, we have added two beautiful children, we have taken in friends, family, friends of friends, friends of family.

Our table is always a mystery and always a gift. 

That is why it’s my favorite holiday. It’s not that we are doing anything that is miraculous. We just open our home and hearts to whatever crazy and delicious meal we roll out to share with an assortment of friends and family. 

So when my Mom and Jeff both tried to talk me out of hosting Thanksgiving, it crushed my soul, profoundly. Mom had quietly tried to

un-invite

some people, and wanted us to just have Thanksgiving be the Ferguson Four. But what got me was when we mentioned this to the kids. It was just going to be us in our pj’s with a hungry man frozen dinners... The kids would have none of it, “Are you kidding me, that’s just dinner.

I've

written the thanksgiving prayer, I have place cards to make, Mom. It’s just not Thanksgiving without the guests.“ 

I realized that I had turned them into Thanksgiving people too! 

So this year, as we have for many previous years, we are hosting Thanksgiving. It’s very small, just seven of us.  

I've

sadly farmed out dessert and agreed to less food dishes (sorry relish tray, sorry brussel sprouts with horseradish cream sauce). But, I did save my world famous

Kathryn cranberries

(the link is worth the read, and the

recipe

has been made by all my previous guests.) How anyone cannot make this is outrageous! How do you say no to cranberries cooked in red wine, cinnamon, cloves and oranges.... Make it, you will love me forever, trust me! 

But, up until we sit down, we are always ready for more.  You see, Thanksgiving is the most profound opportunity to love. 

Every year, no matter where we are, I look down the table and what I see is Jeffrey holding up my world, creating a better one with me, one meal at a time. 

So this year as you hustle and bustle to make the world a better place, remember Thanksgiving as a verb--the action of loving, the state of loving, the occurrence of loving.

Because to me, that is what thankfulness is all about. 

Happy Thanksgiving, my fellow travelers. 

Kathryn

Pilgrimage Gal

photo credit: PilgrimageGal

Living in the Body...

The body is miraculous. We really don’t consider all her wonder when she is operating at optimal levels.  Which is like how I think about technology, Lord help me if my wi-fi goes down; or my car

doesn't

start. I have zero and I mean zero patience for system failure. Perhaps that’s why I struggle with my health so.  It’s so inconceivable that this body wouldn't work.

For the last two weeks, the weather in the Nation’s Capitol has turned crazy, from darn hot to freeze warnings. And that is not the weather that this girl can take. It has caused me to have cold attacks when a rain storm caught me unprepared and to have my body shutter this week at the huge drop in temps. This huge change makes it difficult for my body to keep up. So my chest pain is excruciating, like a weight fell on me, it’s hard to breathe deeply, to catch my breath and I’m forced to sleep elevated to just breath. That coupled with the arthritis type joint and muscle pain, makes me cranky. I delayed my flu shot this week just because I’m too run down to go for it. I have increased the wonder shot to support this weakened body, but what it needs is to rest, to stay in bed and re-boot.

How many mothers can do that? Not this one.

While I have scaled back life, you just can’t roll up shop. Your family needs the stability. They can’t have a Mom in bed at 3:30 in the afternoon. I picked-up my future doctor after school this week and she looked at me and her first question was, ”Mom are you mad? Because you don’t look good.”

Well I’m glad I put on my expensive lip gloss, what would she have said if I had put on the cheap stuff?

They see it, I see it, my loves see it all, they see the pain on my face. The labored breath, the greyness of my skin at the end of the day. The kids hear my voice get raspy and not in a hot Kathleen Turner kind of way. In a breathing through a wet straw, kind of way.

In a former life, I was the ultimate go-getter, working at the top of my game, being a decision maker and a doer. I was the one you called when it HAD to get done.  But, I’m not that girl anymore. I’m the head of the I’m sorry, can’t do that today, maybe tomorrow club. It makes me crazy.  I can’t make peace with it. The part of myself I loved most is gone. The get it done, high-heels, ponytail flapping behind me, as I light the world on fire.  I love her, I long for her like a former lover, I long for the body that worked, performed at that level.

I think that the hardest part of brokenness, is when you can see it, touch it, taste it, feel it. And you are forced to make peace with it.

And making peace is what we are all called to do. Make peace with our demons. The truest test is to be able to quietly sit in a room with ourselves and be at peace. To tolerate the intolerable, the excruciating, the anger we feel within ourselves. We are called to live this, NEVER accept, but to tolerate.

That is what I’m trying to teach my beauties, tolerate the intolerable. Live through the discomfort, live through the disappointment, live through the brokenness of your dreams and learn what the gift is.  It is there if you are willing to be present. Few of us learn in the victories, they are short-lived; it is in the failures that we met our true self.

The real me is not the high heeled pony-tail girl, oh she is a part of me, she is me, but she is the unsustainable me, she is not the essence of what makes me fearless, she was too busy off running, she wasn’t stopping to see the world around her, she wasn’t in awe of the life that she has, the love she has, the people who love her so unselfishly, so perfectly. No, pony-tail girl is too busy trying to be first, the best, shockingly beautiful.  She is the selfish version of me, no wonder I ascribe so much attention to her... She is all that and a bag of chips.

But, what she lacks is compassion... And that is what I lack most. Not compassion for others, compassion for myself, for my shortcomings. I just get angry and curl up, and woe is me through it.

That is why struggle is the ultimate key to personal success and growth.

It reminds me of the decadence of a long run, when you get to the sweet spot where the pain lessens and you are in the present, you are the run, your lungs no longer burn you just feel your heart, your breath, in the run, the warm sun on your face, the perfection in the moment, that makes the pain insignificant and the achievement meaningful.

I’m not in the sweet part of the run this week. I’m running up that beast of a hill, and it’s really, really hard, but the crest is coming, I can sense it and soon, oh Lord soon, I will be in-it, the perfection of the run. And things will get just a little easier.

My prayer is that the run gets easier before Halloween.

I have lots of candy to hand out, lots of parties to attend and lots of little goblins, witches; a warrior and a mad-scientist to delight in. So dig deep, my fellow travelers; like I am, find the kick in your legs and get it done. It will be worth it soon...

We are far too strong not to make this better.

And even though I’m broken and you are too, we are still vessels of the Divine, the Divine dwells in me and she dwells in you.

My prayer for you is that you don’t for a minute forget that she is residing, breathing, moving in you.

Namaste (The Divine in me is honored to bow to the Divine in you.)

Kathryn

photo credit:

Lekke

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Free Falling into Fall...

I love Fall, the break in the DC humidity, the abundance of golds, browns and that warm orange sun; the warm soups, afternoons of green tea with my girls and the settling down with this beautiful family.  I love my beauties as they enjoy All Hallows Eve, and the huge table of loved ones at Thanksgiving.  Fall seems to  allow me to nurture; I get more creative, it is the most fulfilling time of the year for me. I delight in the season change.  

But all change comes at a cost for my family.

Fall brings on a manicness that sometimes scares Jeff. He never knows who he will come home to, and what hair-brained project I will have taken on.  We have an agreement in our marriage that I will not use a pick-ax or power saws. It’s just to keep him happy. I have no doubt that I can manage them just fine, but we all sacrifice. Some girls have to promise not to hit the high end department stores. I have to promise not to hit the thrift store with a credit card. I always can find a great project that will make me so happy. Jeffie not so much. I can upholster, sand, paint and pretty up just about anything. I love the broken and a little battered.

Last Friday was no exception, he came home to find me unable to move on the couch with six sanded desk draws ready for primer.  I had adopted a beauty, a little writing desk, destined to sit in our living room and be the home of all my future writing.

I have serious issues, Jeffrey would say too many to count. But, I have a tiny, tiny little issue with thinking that my body is still in decent shape. My projects are where my brokenness shines. I can feel the adrenaline pump, my happiness grow as I’m in the process of transformation. Unfortunately, while my work may be transformative for the desk, it is not for my body.

And that’s why Jeff found me, gasping for breath, covered in non-pulmonary approved dust, sweaty and in rough shape. Jeff walks in and takes one look at me and doesn’t get mad, just smiles, that are you flipping kidding me smile and he says, “you done?”

Fall brings a drop in temperature that brings on my panic mode. Knowing that soon I will be trapped inside for weeks at a time, with a list of projects that never get finished. When I’m in the cold months mode, I don’t get depressed which is a gift.  I’m beautifully resigned to this part of my life. But as with most of my anxieties; it’s the lead up that’s painful for anyone that loves me.

I don’t get up in the night to do projects, I don’t get up early, I just focus my days on things that are imperative. Like a farmer who only has a short time for planting. I can only paint in certain conditions, I always paint furniture outside, with my mostly VOC paints, mask and alike. I find painting furniture a most relaxing and happy pursuit. It frees my mind and spirit. I also am proud to say I’m good at it.  The painting may be my therapy, but my dogged determination that this time I won’t succumb, never changes. My friend M and I joke that on my headstone it will say, “wife, mother, friend and lover of all spray paint.” My friends are always happier when they see me outside with my spray paint working on a project. 

Norah also loves it! “Mom you are always so happy when you are being crafty!”

I’m Sisyphus rolling that damn rock up the hill. It never changes, I never learn, I never just accept the challenges.  I just plow through. It’s no surprise that the paint color I picked for my desk with Norah is named Pollyanna. The gods they are funny, no? I mean that is the honest truth.

Now this determination is vintage my Mom, I have on more than one occasion found her with a scotch in one hand and a heating pad in the other from a similar brilliant albeit simple minded decision. We just get a hair-brained, flat out stupid idea, and we go for it. Most of the time we don’t get caught, but when we do it’s the stuff of legends. Mom just doesn't get caught much anymore, she

doesn't

have a  husband and young kids to answer to. There is a great family story about her on the first day home from the hospital after, and I’m not joking, BRAIN SURGERY, and a cab ride without my step-father’s consent about her hair.  But because I love you, I will keep that one quiet. Just know at anytime, I can out you! By the way Mom your hair looks great, just saying.

Friday’s activity led to both Saturday and Sunday on the couch. And my irritation grows as my desk sits in two separate rooms unfinished. Staring, mocking me. “You will never finish, you are weak, you are sick.”

And while my inanimate desk continues to speak to me...

Norah gets sick, for the first time this year and she went down, 103-104 degrees; for three days, hard. And that isn’t good. I see it, her brokenness. She hates to be told, NO SCHOOL, NO TENNIS, NO GIRL SCOUTS, and it terrifies me. She was so angry at one point; she was taking her temp and when it beeped and turned red, she rocket launched it across the room.  She has a good tennis serve for a reason. Thank goodness we ditched mercury thermometers, that would have been a toxic mess!

I know as a parent I should have

disciplined

her for losing her “stuff”. But, that is not how I run my rodeo, you see, it is crystal clear: I thought good for you, honey. You know that flipping beeping device is your enemy. I get it, it is telling you that you are going to miss your life for a week.  A week that your life is on hold, from the things that matter.  I get her at the core on every level. Will the female Taylor line of broken genes continue its run?

Will

this be the time that she gets really, really sick? Like 104 isn’t!?!?!

And I ask myself, when I do wake at 3:30am to hear her calling out, fever raging.  How am I going to ease this, how do I support this? How do I teach her balance, when I clearly have none. How do I counsel my sweet girl, who is flipping smart and looks at me and says, “I don’t want to be sick like you.” And I hold her in my arms and say; I don’t want this for you either. 

My God, I don’t want this for my worst enemy. But, here we sit.

I know this is where faith comes in, that NIH already has more info for me than I have ever had. That they will know more about my disease in the next few years than they have in the last 1500 years. That Norah my future doctor may be the girl who fixes all our brokenness.

But, that is the future, that does nothing to ease the pains of a beautiful 7 year old or of her mother who is holding her.

It’s late and the fever has finally broken, she will return to school. 

Tomorrow, I will drop off the kids and head to the grocery store for some much needed food in the morning.

I will also pick-up more sandpaper...

Because, that desk will not get the best of me.

Kathryn

May the divine in me, bow to the divine in you.

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Whatsy Mendoza

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The Road to Emmaus...

PilgrimageGal Note:

I realize for many of my non-Catholic friends this post and some of my others are very “religiousy” and for some of you it’s hard to relate... If you would indulge me, I encourage you to substitute Christ for your interpretation of a greater power, however that speaks to you. I also use the word “HE” as the pronoun for God. That is really a misnomer, I see God as neither male or female, but

succumb

to years of Catholic education in which we referred to God as “HIM”. To be honest it's just easier to use one consistent choice when I write...  My true goal of this post is to remind ourselves that God is with us in ways big and small and to be open to that path.

xo,

Kathryn

Do you ever have th

at moment when can’t find your keys... You go looking all over... Searching... Turning over your couch cushions, dumping your purse, only to go back to the place you started and there they are... In our blindness, we just can’t see what is right in front of us...

I have a wise teacher and special friend who aids me with my blindness... I love when we gather and sit on her back deck, it’s a stillness my spirit knows only with her... We have a short hand together, she sees me and sees through me... Her wisdom, her brilliance, is in fact Christ working in her and I see that as her Gift of the Spirit.  While standing in the kitchen today, she showed me a tile, an image from Emmaus.  When we parted, always with a hug and a kiss, I recognize that I’m leaving part of me, and taking part of her with me... She always tells me to “go gently.”  As I drove-off, I realized that I have been walking toward Emmaus... Emmaus was the lesson I have been searching for....

Luke 24:24-30:

When he was at the table with them, he took bread, gave thanks,

broke it

 and began to give it to them.

Then their eyes were opened and they recognized him,

 and he disappeared from their sight.

For those of you who need a little Emmaus refresher... It’s the road that Christ appeared to two of his disciples after the Resurrection. Some say it’s the afternoon after the girls recognized the tomb was empty. The boys were walking with Christ for some time and only after they stopped, broke bread and chillaxed, did they realize that it was in fact the risen Christ. They walked with him for years, talked with him for years and broke bread with him for years... But, this time they missed it... They never really saw Him... They had a spiritual blindness...

I think as people of the Spirit, we all want to be Paul and have this super-star conversion experience... (Paul, formerly known as Saul, was widely known to have persecuted Jews and followers of Christ as a Roman soldier. It was only while traveling on horseback that he was blinded by a bright light and heard a voice from the light telling him to stop slaughtering God’s people. And from then on, he was known as Paul and one of our most beloved writers and evangelists.)

We are all screaming for the bright light, the drama of falling off our horse, being blinded by God.

But in fact, most of us are on the road to Emmaus... We are all walking with Christ all the time, but it’s only when we sit down, take a break from the journey, have a bite to eat, do we realize we were walking with HIM the whole time.

For some reason, we think that we are not special, precious, beloved. That scores of others are more special, more talented, richer and more successful... That we

aren't

enough... But, that is where we all fall short. Because we fail to see that each and everyone of us has a unique gift, a special purpose and no two are the same. While it may seem insignificant to us, without it, none of us would succeed... We are all interdependent.

That is why faith is so hard for so many... They can’t see it’s simplicity...

Faith is actually very, very quiet... You have to slow down to see, to be present in it.  Faith is quiet and simple. We try so hard to complicate it, to make it more than it is...

It’s not sitting in a Church being told that we are sinners. For most of us, beating ourselves up is as easy as pouring a cup of coffee in the morning. No, finding Christ is looking in the mirror and seeing Him in you.

You are the gift. You are HIS beloved, with whom HE is well pleased.

We are all so busy we fail to see that our Gifts are the smile on the elevator, the thanks for making my appointment easier, in my case the skilled phlebotomist who doesn’t tear my arm off drawing blood. That is where I meet Christ. Sadly, I don’t always meet him in my Church lately, with a bureaucracy that is too large and constantly on the defensive... I think Jesus would be turning over more than a few tables if he walked in...

I see the goodness of God all around me... It’s not hard, but it does require you to open yourself up to vulnerability.

If you open yourself up to whatever you call God, you will find that HE is at work... In your coffee shop, at the store, or wherever you are... See who Christ has put in your life... Each person is designed to be a partner in some aspect of your journey... Every lesson, every person fills a part; each interaction is a piece of your mosaic, a tile of your life, like the one in my friends kitchen...

When I look back on the people and places that have left and still leave the most lasting impression on me... It’s what they saw in me, what they taught me... about myself, that has shaped and guided me to today. My Spirit, is on all the time, it’s what propels me even in the darkest of times.  Without the journey, with out the steps, this life would have taken me somewhere else...

I understand now, that different road would not have been for the better... I’m learning, more in this brokenness, in the despair that my health has caused me, in the darkness I have learned, that I have grown into the woman, I’m called to be... I have learned that none of us are ever full... We are always searching for the need to feel satisfied. To be full, less hungry, and only when this happens will we be content, happy and fulfilled....

Of course, that will never be, we are in a broken world that can never fill us up... We are here to learn and survive. It is a type of boot camp of the Spirit... Many of the saints were hungry sinful folks. They are the first to admit it, St. Teresa of Avila was sick most of her life, in bed or writing, she was never filled... The list is long... Sick, hungry, searching...

The reason so many of us struggle and yearn to be filled, is that we have moments of the Divine... We can see it, touch it, feel it, but it is fleeting...

When we feel the light on our face, get the good nights rest, enjoy that one great picnic, feel the complete love of our partner, the moment of delight with our kids... 

For me, one of those moments is sitting down on Thanksgiving, when we all look beautiful, Jeff has made this amazing feast and I see who has voyaged to our home to break bread with us... I feel the Divine, my Jeffrey looks at me and he gives me his smile that says, I did this for you, he would rather have had a pizza in his pjs with a bourbon and football... But, he did it for me...

We get tastes of it and we are all greedy for more... Just like Saul... If we are truly honest, we realize that the type of fulfillment we want is only with Faith.... The only thing that is sustaining and everlasting.

That is truly why so few of us see that the story of the road to Emmaus, is really about all of us...

All of us are blinded to a Christ, that is simply, quietly, profoundly working in our life...

May your eyes be open on your journey to Emmaus...

Kathryn

PilgrimageGal

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mrsdkrebs

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Week One...

I was always under the impression that Summer is all ice cream, sunscreen, and lazy days...The promise of relaxation, the opportunity to travel, the fun in the sun with the kids... 

That never really happened for us and I’m not sure why... 

But anywho, without much fanfare, we are back at it... All at once, the school grind, the up early, not in bed early enough, the please eat some protein for breakfast and the chorus of, “yes you do in fact need both deodorant and a shower”, to my 10 year old.  Seriously?... Tell me we won’t be discussing this at 20?!

That coupled with some grade A meltdowns, by all of us, had me longing for the old 1970’s, “Calgon, Take me Away!”, commercials. 

So here we are the first week back, a new school and new everything. I wish I could say that the transition has been an easy one... But, as I held my sweet daughter in my arms sobbing last night, I knew this was going to be a process... My sweet girl is a disaster, it is all too much. 

Too many changes, too much hard stuff... 

When you have the gift of raising an old soul, parenting is a little unusual. She challenges me in ways that are staggering.  Norah makes me on a regular basis wonder, if in fact we are reincarnated, because she has insights that seven year olds should not understand. 

You see she struggles at times, because her beautiful body is seven and so is her heart... So when this beauty understands things beyond her years....it’s her heart that pays the price of youth; and that body, well it crumbles under the weight of years of inexperience.  And it usually includes some rolling around on the floor, in a spectacular Oscar worthy meltdown. As a mother it is agonizing to watch... 

The cross of raising an old soul.

My seven year old Irish Princess is as much a warrior as she is a Princess... God love her, everyday she is back at it, working on her tough challenges, finding her way.

Last night we talked about the changes and challenges with the new school. She really loves the school, her teacher, the opportunity to get lunch from a cafeteria... She made a sweet friend in the first minute of the first day... All great things for my little extrovert. But she misses the familiar. She misses her peeps, wants both worlds and explains it all so effortlessly... 

She wants all of it not to hurt, to feel confusing or conflicting... 

She is tired of being uncomfortable. Aren't we all? She loves and hates the change all at the same time. 

As we snuggled, her long legs draped across me, her chipped hot pink and glittered toe nails and the tears making my shirt damp, she began to explain to me all of her worries...

She correctly senses, without being told, that her best buddy in the neighborhood, daughter of a Coast Guard officer, will eventually be transferred to a new assignment and city.  My Princess just instinctively knows that her BFF can’t stay here forever, and she said, “A and I will never live this close together ever again!”   “We just need lots more time and being in different schools takes up my time.”  On top of all that, she is tired of answering questions about why she left her beloved school... Her answer, “It’s complicated”. 

It’s complicated, who thinks to say that at 7!

And she is missing her “Em”. The worlds best college sophomore, who has from Norah’s birth; held her, rocked her, biked with her, pushed her on a swing, watched her and put her to bed more than any other person besides Jeff and I.  She lives for ‘her’ Em, and when Em leaves, its just a hole in her heart where Em should be. The funny thing is, this summer, they didn’t get that much time together, but just seeing her everyday, for a smile and hug was enough... 

When Em was leaving for school Norah made her a card, put Smarties candies all over, and gave her the biggest hug... We then sat on the curb and watched her Dad drive her back to College... More change... 

Now as a woman of faith, it’s a learning opportunity to teach about living in the present, to bathe ourselves in the moments we share, and not focus on what will be. To live in today. But, how do we teach authenticity when it’s the thing as adults we struggle with too?  I’m reminded, that this is why faith is so important to me.... I don’t have half the answers for her, but I’m so grateful that I believe that there is something bigger than this.  

We are all called to be present in this life... We teach others, in our ability to love, to be open to possibilities. To our willingness to share ourselves with the world, to give a piece of ourselves to everyone we meet. To live it... To love.

And what I have tried to teach the beauties, is that loving is sometimes painful, truly loving can hurt, but; it is in this ability to love that we meet God, or the Divine.  We don’t learn about ourselves in our successes, our fancy dress. We learn and are drawn closer to who we are called to be, in the messy, in the miserable, in the uncomfortable. It’s in the darkest of night that we meet daybreak, it is in the moments when we “give in” and tolerate the intolerable, that we find ourselves. It is the hardest lesson that we face daily... That learning in the messy is what makes us our best selves. 

When we look around and see who is standing next to us, who is holding out the hand to pull us up... That is the chance to meet the Divine here on Earth... As Christians it is about seeing Christ in others. All Creeds have a similar concept.

So the question to ask yourself today: is who does that for you?  Can you do it for yourself? Or even better... Who are you willing to sacrifice for? Who are you willing to stand in the fire for, who are you willing to get messy for? 

For that answer is the truest test, of friendship, fidelity, of honesty.

So, as I walk with my Norah, and teach her that the journey is difficult at times, I squeeze her hand a little tighter, hold her a little closer, and remind her that she never walks alone... I can still see her ponytail bounce as she walks through the school doors and gasp, that she never, ever looks back to see me watch her...because she knows, I'm with her every step. 

As you walk on this portion of the journey with me....I pray that your journey is just a little easier...

The Divine in Me bows to the Divine in You....

xo

Kathryn

PilgrimageGal

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Andreanna Moya Photography

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Birthday Bliss...

Everyone has different feelings about turning older....

For men it is easy and don’t say its not.

You all look amazing, grey looks good on every guy, it actually makes you more attractive... I can only picture Cary Grant after 40, not at 29.

Which is just annoying. Seriously. My husband is way better looking at 48, (he turns 49 in 48 hours) than at 26.

For women, we struggle... Because in this world, full of the next young thing, where we spend billions on nips, tucks and anti-aging products, we sometimes lose sight of what birthdays really are... Gifts.

That’s right a gift.

Unlike our taxes where we are forced to pay... Our birthdays pay us; and I don’t mean in gifts and cake. They are the hallmark of a life well lived.  For those of us fortunate enough to have children; we see how our beauties change as we age. They are smarter, more independent... Some are even lucky enough to see them grow, love and have families of their own. What magic it must be to see your baby hold their baby... To realize that they have followed a similar path...

I mark this August 20th with special fondness, it is the first time in years, where I’m remarkably better this year than last. My health is more stable, I have access to medical knowledge about my illness that my team has lacked for so long. So in many ways, it is the culmination of many hard fought victories.

Last night, on the eve of this birthday, I was frustrated. The path to wellness means, letting go of more medications. This requires tapering down the dosage, and frankly, it doesn’t feel good...

Withdrawal from caffeine, sugar, or electronic devices can be hard.  But meds that have been your mainstay for a looooong time, well that is hard too...

The body likes what it likes, and letting go for some is harder than others.  I’m very grateful,  I have a relatively easy time stepping down on meds, I don’t seem to have the serious withdrawals that others have from my cocktails and sliding my meds thing-up and down has usually been easier than many of my medical warrior friends have with their side-effects.

So when I got cranky with my goto doc Harvard, well it was just out of frustration.  I wanted the pain to be gone and the meds too, and its not going to work that way for me.  I understand that without a miraculous miracle, I will struggle with significant chest pain for the rest of my life.

Which to be honest makes me angry, hurt, frustrated, confused, and plain old grumpy!

And so, I was grumpy and irritated with the doctor... who walks with me through every mile post of this journey and has never given up or asked for a break. Because he knows as I do that deep down, I wanted to wake up this morning feeling 100%; to wake-up and throw on my running shoes and go; come back, drink a cup of coffee and take the kids for a bike ride, then to the pool...

He took the hit for the team.  Because he knows that this is the beautiful reality of my dearest girlfriends... That is the life they can live. But, it is not mine.

And truthfully it really, really hurts at times... I know in my heart, I will improve even more for my next birthday... I also know that things will always be a struggle.  

I can make peace with that... This is my normal now.

If wisdom comes with age, what did I really learn this year? How has it made me better?

Well this year I learned to listen to myself: to emphatically trust my value, my ideals, my insights, my passions and my truths. It is a big work in progress. But all in all, I used my voice to call out the foolishness in my own life.  I chose to protect and honor what is at my core.  I learned to listen to what moves me, what delights me and to move all the rest out for the Goodwill truck that comes often to pick up the things, the people, the choices that don’t sustain my core. That is the wisdom I lacked in my youth.

And the best part... I don’t feel sad or guilty or diminished. I’m just too busy!

I also am learning to make peace with the parts of myself that I struggle with, my anxiety has less of a hold now than ever. I have worked to be honest. When I tell my team that I’m worried about whatever the medical foolishness de jour that pops up, I don’t even consider for a second what they think... It is my reality and I want help to lessen that burden.  I have made peace, that my medical friends will always be with me. We won’t break-up; I’ve learned to embrace collaboration, what I can achieve with my treatments, what makes me uncomfortable, what I can’t tolerate.

Like technicians that don’t know how to draw blood... Small commercial; I have the two and out rule. You can stick me twice, and that’s it, you don’t get to dig or fish around looking for the vein. Let me be the first to tell you all, there are some world class stickers out there, they can find my vein when I’m dehydrated, when I’m sick and when I’m well and there are some... Well they need to do something else.  You should never leave a doctor’s office with track marks and bruises like a wolverine gnawed on your arm...  You can stick me twice, then you need to call for reinforcements.

But, I digress as I’m known to do... But its my Birthday, so I’m entitled. The one day a year when we actually are entitled to something!

I often say I don’t suffer fools gladly and I don’t, I love too deeply. So if you are an asshole, your time with me will be short. All I really expect from folks is to be kind, and if you're not, well we don’t have much to discuss. And by the way, I don’t judge or make fun of anyone's faith or choice to worship or not... So don’t make fun of mine... Just saying, you don’t have to worship with me, you don’t have to pray with me, but don’t diminish my beliefs.

I also am getting better about my sphere of influence and my areas of concern. I’ve got a lot going on in my life... I have a son with special needs, a daughter that needs to be reminded that she is in fact 7 and not 37, a husband who I really just want more perfect ordinary moments with.... So my free time is precious. And my good energy is gold.

I would rather go to the farmer’s market and watch the 7 year old give puppy-eyes to our favorite farmer for not having beets than anything.  My girl loves her beets with arugula and goat cheese, seriously, she is 7!  She is killing this farmer, cause two weeks running no beets. I’m thinking she is going to have her own beet garden next year.  I love making the world’s best peach crisp for my family... That is my free time.  And HBO, I love me some HBO... I give thanks for cable everyday.

So as I embark on my 43rd year, all in all I’m grateful.

Grateful for faith, hope and love.

And a life filled with more champagne on Tuesdays, because we can always find room for that!

So if you need a toast tonight, toast for me...

Because, I’m toasting for me, too!

Cheers!,

Kathryn

PilgrimageGal

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Madonna and Child...

I have this beautiful old Madonna and Child on my window sill... A gift from a dear family friend. The figurine is tiny, but perfect. With her chipped paint-giving way to the resin from underneath, you see glimpses of perfection and imperfection all at once... 

It is why I love this little statue so completely... She is broken just like me... 

We are all broken, some in body like me; others in spirit, or soul, whatever speaks to you, some in other ways that are far more noticeable. But, what makes me love this statue, is that you can be imperfect and perfect at the same time... 

It is what makes you whole.

I have had to face my imperfections again and come to peace with who I am. My NIH team found Pulmonary Hypertension in a routine ECHO; this news just stinks. At first, I swallowed hard and was reminded that this diagnosis in its worst case is very serious, but in my heart I know it will be just another annoying facet of Kathryn-ness that is just irritating. Something that requires management and time, and requires some medical folks to breath deeply, before speaking...

I think that is why, I trust and love the doctors who care for me so much... They all just get me or I educate them on the Kathryn-ness of the world till they do. They understand that while medically, I may be a hot mess, inside I’m feisty as ever. Just irritated daily by the limitations my body has placed on me.  I love that in the core of who I am; I still fight the good fight and live for the day that I have a great one... 

But, still delight in the mediocre... 

The world is a very hard place and it pulls many under... 

The one gift this brokenness has provided me is that we all live on the razor's edge. When you see that life is really a breath away from ending, you make the breaths count... When you are reminded of this, you don’t worry about what may be the medical thing that ends it... You are also keenly aware of the fact people die driving to get milk... 

Time is short, and it makes me have an urgency that frankly others don’t have.

I try my best, I am very human, and I screw up all the time, but I see the world very clearly...That even on the bad days, I find the way to make the day special. 

We have been lucky enough to have Jeffrey’s parents here for the week. Jeff’s dad is able to fix or build anything and so projects that have needed attention are finally getting fixed... Our home needed the love. But after dinner, I was very tired and really losing my patience over things that shouldn't have irritated me. A sign that pain and fatigue had moved in for the duration... I explained to Jeff’s mom that one of her son’s gifts is he sees my grumpy, before I really notice... And he lovingly sends me to bed. He just says so beautifully, “your done”.  Sometimes it is a joke or a hand gesture that makes me laugh or he just lovingly says to the kids, “time for mommy to head to bed.” 

Its our own shorthand on life... 

No one is nice all the time, no one has nearly enough patience, we all need a partner... Jeff does that for me... I’m still wondering what I do for him, but its something or he would have kicked me to the curb years ago!

Which gets me back to my little statue... 

I look at her everyday, when I wake, when I go to sleep. How did Mary do it? Every time, I’m on this bed, she is with me, maybe that is the purpose.  To remind myself that I’m a great Mom, and a wonderful wife... I’m broken, but its in the broken that my perfection shines like the sun... 

Mary is what as Mom’s we strive to be... Perfect... But, none of us are... 

I will stick to looking at my little statue with hopes of more Divine interventions...

May you see your perfection, your gifts, your love, your true beauty all around...

Kathryn

PilgrimageGal

Photo Credit: Kathryn Ferguson

Ice Tea With A Hero...

I have had a good week. 

My meds have all worked together for the greater good. I was able to be a normal Mom for a change and really live up to that billing.  I got my growing by the minute Irish prince to his activities in the early morning and was able to pick-him up. While accomplishing all my errands, grocery store runs and making a couple of dinners. 

All in all a great week.

And while the DC weather has been dreary, hot and humid, I have visited with close friends and had a visit from our family’s greatest hero. My Uncle Douglas and his bride, my fantastic Aunt Pat.

I feel very blessed to have them both in my life. I can’t recall a moment when I didn’t feel loved by this dynamic duo. They have always been more than generous, thoughtful and so invested in my life. No matter where I lived they have visited, fed me and given me some unbelievably generous gifts. My wedding gift from them, a stunning Waterford decanter, has always been on display in my home.  When I opened it, Uncle Doug told me tongue firmly in cheek, always keep it filled... A request that Jeff has been happy to oblige.... The bottomless bourbon decanter. 

All of that aside, it is them, their generosity of love, that I have always treasured. Two people who have spent their entire adult life in service dedicated to our country. And what is astonishing about my Uncle, is he is the most humble man I know. He never shares his accomplishments, he is only interested in yours. I can only imagine what kind of leader he was in his Military career, his selflessness for the people who looked up to him. The fantastic men and women who learned under his guidance about leadership, integrity and bravery. We all should be so lucky. 

What always has been key is that family has always been first to both of them. They are the best dinner companions and Thanksgiving is always better when they are at the table. My fondest memories have them joining us and they always rave about my man’s cooking.  I pray that this year we can make it all come together and that I feel well enough to host. It is my favorite holiday, to sit with my loved ones and delight in my family. 

What Uncle Doug has taught me more than anything is how to manage a chronic disease. Our family genetics clearly runs through his mother, sister and now niece. We all have benefited from some of his Mother Ellen’s gifts, but we have suffered as she did with unusual health complications. Uncle Doug has had Myasthenia Gravis for years. As a kid I always thought his eye patch made him seem like a pirate, or a spy... It was cool, I never thought it was scary.  But, MG can be very scary and serious. Uncle Doug would not let this disease slow him down, he continued to serve our country, and lead a very active life, including a stellar golf game. And while I wish I could acknowledge all of his military honors and talk at length of his volunteer work, I can’t because he is just too modest. 

What I can talk about is that he has managed a serious health issue for more years than he can count. With cocktails of meds, medical teams and alike without ever losing his humor or grace. We laughed when he came to visit,  I was sweating so profusely even with the the a/c, so when they arrived, I apologized as they both hugged me and without skipping a beat he said to me, ”darlin, I've been sweating for years...”   And there we stood in my kitchen laughing, because it was the gift of our overlapping DNA... We were both sweating! Everything else was fine!  And as we both laughed about another shared gift from his mother, we sat down for a lovely visit. We compared excel spread sheets of drug treatments, side-effects, and laughed about our doctors. 

Not the classic family conversation, but a shorthand that we both understood all too well.  

I think that is why he is my hero... Not for his military service (which is amazing), but for the life lessons Uncle Doug has taught me.... 

That you can manage health, and still be the person you are; still trust in the future without being foolish... 

By loving your family, you can grow.

In serving others you can find grace, peace and strength.

I always feel so blessed when I have company on the Pilgrimage... 

Thank you Uncle Doug for holding my hand and walking along...

I love you... KT

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Hammer Moments...

Time is Precious

You know how it feels when you go to an event and you walk in and everyone is so happy to see you and you are treated like a celebrity, you amaze all the guests with your stories, witty repartee and your unquestionable beauty?... Yep, me either.

Have you ever been in a room with countless doctors, nurses, PA’s and med students? Or had multiple doctors say things like: “You may in fact be a new mutation of another disease”, “You may in fact be the only person in the world who has been given this drug and have it show some improvement in treating Cold Urticaria”,  or my favorite... “You are so interesting, would you mind if I bring in my med students to watch?”, or finally,  “The way your body handles this is so unusual, I think we may want to follow you for a while in our research lab”.

Now that last comment was said to me on three occasions, by three unrelated doctors for three separate disciplines.... So goes the beginning of the two day summit at the amazing world class facility at NIH.  PS. Thanks for paying your taxes... I’m very grateful!

When you consider that this Pilgrimage has been going on for a long time, you realize that there are things about yourself....Well that, you are still learning. Some that you are excited to learn, and others that rip your heart out of your body with the whole world to witness.

When you have been poked and prodded by the world’s best, you sometimes realize that you can be de-sensitized by the medical world.  For instance, more folks have seen my naked 190 lb body, than ever even looked twice at my 130 lb body... Oh how I long for that body again.  I have lost count of the times a stethoscope has been used to listen to my lungs... Lord, if I had a dollar for every time that trick was done!  I don’t care if you see my AA’s for the echo, or touch ‘em when you listen to my heart, lungs or whatever. My current body is not the body of old, the one I never realized was so beautiful, the one I took for granted...  

What I do find that amazes me, is how different it is done... I can tell the folks who are checking a box and the ones who are really listening to hear the murmur, or hear the crackle of my lungs with pleurisy.

I also, have long realized that my health was very serious, and that some version of this disease may be what eventually takes my life.  I have worried that we may not find the problem in time to slow down my disease pattern.... That has given me and those who love me some seriously sleepless nights.  And I have worried about what I need my children to learn, while I’m here.

What are the core things about myself that are critical for me to give them? What lessons, beliefs, what stories do I need them to know? The ones I want them too have heard so many times that they will never ever forget.  What places and people will always feel like home because they were my safe places, when this world was hard.

Who are these people that I love, and why do I love them so?

These are the ideas, the values, the stories that are our legacy, and what we are leaving  behind... It’s not the houses, or camps, trips, it’s not the sports or music lessons...

It is us, it’s the exquisite everyday moments we make, when we put down the phone or other electronic device and look into the eyes of our children. We make such a fuss about how our kids need to stop and look at us. But, do we offer them the same courtesy? Do we stop chopping, reading, folding, ordering, and directing to give our loved ones the same. I know,  I’m guilty of it.

My beloved Ian said to me this week, ”Mom stop saying uh, or mmm and please look at me and answer me.”  Well hello hammer moment...

definition:

Hammer Moment

:

verb, from the english

,  A life lesson that hits you square in the face, with a metaphorical hammer. That imparts wisdom, knowledge or provides an education tool. The source of said learning is never expected.

sentence

: My children once again provided me with a hammer moment about parenting.

Writing this little blog is tricky sometimes, because to be authentic, it requires me to talk about the people who matter most to me. My Clive Owen look alike Jeffrey, or my Mom, the beauties, core girls, or my doctors. So I try my very best to respect their privacy while I share my own truth.  It is a balancing act, my closest, nearest and dearest struggle to read what I write. Perhaps, it’s because they are ring-side on the real deal. They see what pain and illness really look like. My Mom sat next to me on the green couch as I cried this week from pain, frustration, worry and guilt about the state of affairs. This pilgrimage is no joke, its real life, and it’s happening in real time for all of us.

I think that explains my urgency, my demands of you the readers, to pay attention to the moments... Don’t waste time.

I feel like one of those crazy people holding a sign... “It’s the end of the word”.

No it’s not, but heaven knows, life is much too short... It’s not about the silly Kardashian's, or whatever Housewives you watch. It’s all here, it’s real and it’s slipping through our fingers faster than we realize...

So even if you are sick like me, try to make it work, find your gifts and share them.

Be present in the lives of those who matter to you.... Be in it.

To put it in perspective, all you need to do is walk through a major medical hospital... It is the culmination of the journey for many of us... It’s our last hope for wellness.

As I walked through the doors at NIH this week, a beautiful 8 year old boy who could have been my Ian, walked in front of me leading the way with a black backpack on his slim frame and his fresh crew-cut... What you could have missed, if you weren't paying attention was that backpack held a long clear tube providing a drug to his body... Likely a drug working to kill cells and mobilize others.

He was leading me toward wellness, running ahead through the lobby...

And I was running, to catch up with his optimism, love and faith...

The divine in me, bows to the divine in you...

Please know that I pray for all of you, as I hope you will pray for me... It is a powerful promise that I don’t take lightly...

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Agitated...

So let me get it out... I’m grumpy, agitated, irritated and feel miserable... How is that to start the journey... My health stinks and I’m scared, afraid, worried and nervous... There I said it... I go back to my awesome girl power team at NIH this week and get an update on where things are and I’m worried I’ll get answers and also worried I may leave without any...

I have new symptoms that NIH is concerned about, I have massive hair loss, Lifetime TV hair loss, like being in the shower and clumps fall out... Now I realize I can always count on some good hair extensions to rock the chic BH Housewives look... But, it is just another irritation in my life that no girl should have to live through.

As If I didn't win the lottery already, the sweating is so profound that I’m in a full body sweat from loading the breakfast bowls into the dishwasher.... Now that is just stupid, I was on my 4th outfit of the day by 10:30 one day this week. No girl should have to deal with that and I do sometimes have to shower again too.... There is no justice... I’m headed to Target to buy more white t-shirts and cozy pants, and bras.... Who needs expensive, when you change them 4 times a-day!

Soooooooo, that said my pain, the pounding headaches and body fatigue are so debilitating, it has been a soul crushing week... I don’t know how to describe the pain to folks who don’t suffer from it... I have given birth without drugs, while having blood clots in my lungs and nothing feels like this pain. The chest wall pain is so great it hurts to move, to hook a bra is just stupid, and to take deep breaths; well that is just not going on here.

When I told Clive about the hair loss and I was curled up in his t-shirt in bed and said, “Jeff, there is nothing left of me, everything is broken and I’m such a mess....”

And my Jeffrey just turned around and looked at me and said, “I didn’t marry you for the outside that is just the package, I married you for the inside...”

I know you are all jealous... Well that made me cry harder, and I told him to go do something stupid, so I can be mad and not love him so much....

Cause you can’t be in feel sorry for me mode when you have that talking to you. He is all that, all the time... He is the nicest guy on the planet and stupid easy to be married too....

So where do we go from here... We put band-aids on the blisters and we set out again in the morning to find answers and if you see me in Target buying 20 white t-shirts you will know why.

Stop and say hi...

------------

May you find the light on the road as I walk ahead blazing the trail and making the fire. There we can sit, rest a while and talk about the Pilgrimage together. God Bless, and keep walking.

The Pilgrimage is nothing without you and your support.

Please know I pray for all of you ceaselessly.....xo Kathryn

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Love, 3 am Calls, and the One True Love...

Special note:  this is the post I told myself I would never write, the one about my Jeffrey, but it slipped-out... So here is the insight into my very private world, the stuff I usually don't share... But here it is and "share it, I shall" as Master Yoda would say!

----------------------

Who are your 3 am calls? And who is calling you in crisis?  I like to think that even in my lesser state, I'm still on many people's short-list. Now my list of folks that I would roll out of bed for at 3 am is very long... They may never call me, but if they did, no questions asked, I would be wherever and whenever and my people know who they are...

I think it would be a good party theme.... Come celebrate, you are someone I would roll outta bed for at 3 am! Come, celebrate, have a drink and get your t-shirt!  "I'm on Kathryn's 3 am list"...  "She will help me in my hour of need!"

But in all seriousness, that is why making this list is so important. Who are you in-it for? Who matters in your life?  Who do you love?  Your answer is telling; and I think you need to have twice as many people to roll-out of bed for; as would roll-out of bed for you!  This tells you your love quotient... What is your number?, how many people are on these lists?

Who you love and how you love... It is a timeless question.  Are you living openly, are you participating in your life, are you living and loving to your fullness? Or are you a bystander?  Tough questions for everyone,

especially

my warrior sisters.

When my health was just starting to spin out of control... My dear friend got engaged, she was so happy and I was thrilled for her.  She asked of me the most loving request. She asked me to stand in as the celebrant if you will.... Talk about honored.  I have been asked to do some fun things, and some important things; but never asked to share and celebrate the joining of two lives. I was devastated when a few weeks later, I had to pull out of attending her wedding and not join in the happiness to see her marry her husband.

But truthfully, I still have no idea of what she saw in me, to ask me to have such an important job.

I love being married, it is the hardest work you will ever do, but it is the best work you can ever find. When done well, you are better than when you start; and you grow into the person you are called to be.

I believe loving another is so critical.  My definitions of love is wider... I mean are you committed fully to another? 

Now I have had a ringside seat on relationships of every kind that have gone wrong.

And I for a time, I tried to sabotage my own. I call my 20's, my terrible 2's!  It was only when I stopped fighting myself, stopped over-thinking, and realized that Jeffrey and I were unique as ourselves, and what we had was truly ours alone... Not the successes or failures of our parent's relationships... Something Jeffrey understood and I needed to learn...

When I started to find myself, and see what Jeffrey saw in me, I was finally able to really meet myself and my husband. And learn how to be happy...

I married Jeffrey 6 weeks after I turned 22... It is still shocking how young I was, and how little I knew of love at the time. How much I needed to learn and that marriage is about both independence and  interdependence.

Jeffrey is my biggest teacher, the smartest guy in every room, the most patient, humble, and compassionate man. He is what every Mother wishes for her daughter. Gentle and protective husband and father.  On a good day my beloved possesses a 5th grade sense of humor; laughs at my foolishness and delights in my spirit...  He is my world... The love of my life. And without question, I love him more today than yesterday...

I'm very blessed to say that we will be married 21 years this fall...

I see myself today, even in this body that is broken, as having more to offer than I did when I was "healthy".  My illness has transformed me, into a different woman, friend and lover. And without over sharing, my health has made loving more beautiful, more intimate, more intense.  When you and your partner are working to make your love intimate, in a body that is broken, wracked with pain, when breathing, pressure, contact are excruciating... You become cleaver, creative and you find meaningful ways of sharing and loving.

Maybe it's being married forever now, having children, or friendships that are new, and some that are years, and years in the making...

But I have had a paradigm shift about relationships. (I need to add a little caveat here: except in acts of violence, that is not nor will ever be a relationship)

Every encounter is the opportunity for a relationship, and each one has a message, life as scavenger hunt, every person is offering us a clue, a lesson to take, to learn from... The bad ones sometimes have bigger lessons than the good. But each one tells us something about ourselves and where we are going.

That to me is key... I take nothing for granted, nothing... Life moves daily like the tide and sand on the beach. These are the lessons, they don't teach in marriage prep., because there is no way to wrap your head around it, no way to prepare... How life changes, how it moves.

So make you list, make and meet some new 3 am people...

The longer the list, the fuller your life...

Share some love this week...

on your journey...

Kathryn, 

Pilgrimage Gal

Some other notes from the Pilgrimage:

I'm so grateful to all my sister chronic disease sufferers, I'm with you in spirit, thanks for your support on this little journey... 

And to all of you on the road with me...

In an effort to talk to more of you... I added a place on the side to contact me, this sends me a private email for my eyes only... So If you want to reach me that is a great way.

If you love the journey, don't forget to sign-up for my email updates.... you sign-up via your email then you are magically sent a "confirmation email" back. You have to open/click on the confirmation email, if you don't get one check your spam folder. 

I read each and every comment and try my best to answer them all... So please let me know what you think and leave a comment below.

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Perseverance...

This stop on the Pilgrimage is a two-fer, I have emotional and spiritual pain... Both are hard and you don't want them to show at the same time... None the less, they are here and have to be faced.

I have mentioned before that line, "God doesn't give you more than you can handle".  Well that is a lie, and that line is in my Rolodex of Shame... The Rolodex of Shame, is the place where I keep all of the comments from well intended people who say stupid things. You do not want to be in the Rolodex of Shame... Well, because it is shameful...

This line haunts me, and I'm really concerned that the next time I hear it at Mass, I will go up to the priest and lovingly say....

"You good Father, go sit down, I've got this."

Can you even imagine! Promise I won't do it. But it is on my dream list.

Because many days the pain, the suffering, it is much more than I can handle. It is way more than my family, my children, can endure, I try as best as I can to put a smile-on; and remind myself that there are people who are suffering and have problems far worse than mine. While that is very true, I don't want to be in the business of minimizing my reality.

This burden, this brokenness of body, is heavy and far from light.  That is what makes a Pilgrimage hard. You journey in all weather, you get blisters, you are sore from your pack, you are hot in the sun, cold in the wind and rain. But, you continue walking, because you have a path and a plan. Because, I'm always trying to find the spiritual-silver lining. To be optimistic and see the good...

The girls in my 'hood on a warm night love to sneak onto each others porches for a quick glass of wine; this is where we catch-up on the week.  Many who visit my post-WWII 'hood, with our brick colonials nestling next to each other, think we are right out of the '50s. We rarely knock, and everyone knows each other. And when you can't find a child, or an adult; your first inclination isn't panic, you just look in the kitchen or yard next door. Not what you would expect in a bedroom community of Washington, DC. in 2013.

My Jeffrey rolled home early on Friday; and while my body wanted me to just stay on the couch, my spirit wasn't going to miss Friday night greetings. So as I walked in the front door of one house, to cut through the  backyard to the hostess', I realized that the 100 ft and the natural unevenness of the backyard terrain was trickier than normal, and I was shaking... My body was firing off an internal memo reminding me that it was not cleared for this adventure.

That's pain for you, it's the thief, that robs you...  And I was having none of it.

My girlfriends, saw me unsteady, shaky, as I found the first chair. The glass of water I drank, well it felt like the oasis in the desert. None of this was good news;  I knew instantly,  I would need twenty minutes just to have the strength to walk home. My girls faces turned from happy clinking wine glasses, to a group of worried faces; during my quick week update. When I told everyone, I was fine, and I was absolutely fine. "Fine", meant I wasn't going to pass-out, and I would walk myself home...

One of my girls said, "I hope you are offering up this suffering for something/someone really good..." And that got me thinking; was I, doing that or something different?  As Catholics, we believe that suffering is the opportunity to encounter the Divine. Without question, Christ on the cross is suffering, and we also look at the role models of our church the Saints.  Not many of them got off easy, they all suffered, some tremendously. 

And that through suffering, we find the Gift, that without the pain or struggle, we would miss this opportunity of spiritual enlightenment.

Can I just say, I was very happy drinking a diet coke, would prefer not answering the call to "enlightenment". I have a wonderful marriage, beautiful children who occasionally listen, and a great life. I'm good, thanks.

First, not sure I buy this call to Enlightenment.  I'm not so sure I have much to offer... And also, I'm not sure that I want the gift that suffering has to offer.

I want my life back.

I don't want to make lemonade any longer, I wold prefer to drink tequila...

Can we be really honest, when you are vomiting in the toilet from pain, curled up in bed begging people not to touch you or your bed because the vibration hurts.  How do we resolve life, when anger, frustration and disappointment are so present. Or when YOUR body is racked, with such pain that you are short and lacking patience with loved ones.

I wonder if this pain in my body is so much worse because; it's my body that pulled-up stakes on me... It is my body that quit, when my spirit, and will to fight has only gotten stronger... It's a deep betrayal and it's personal. And there is no outside force to occasionally lay the blame on.... It is all mine...

When I planned my life with Jeff, this was never what was planned... EVER. And frankly, I'm pissed about it... God's Silver-Lining?... Because I can't seem to find the return receipt to give it back and get to my "real" life...

It's at these moments, when life is too hard, that I'm grateful to have faith.

To feel in my heart that these moments of desperation and frustration are temporary, all too 

human and deserved, don't last long.  It is my body's cry for help under the weight of pain.  I  WILL  find peace in a short time and these days of spiritual pain will heal.

It is a great comfort that God can take my anger and frustration.  I never envision God as this all white light filled being of Art and Religious books of my youth. I don't picture him in robes filled with gold. I see a gentle beautiful man best described like a St. Francis of sorts, ageless, and timeless.  When I raise my voice and complain about what ails me, drop a bad word or two.  I see that face with the glint in his eye as he looks at me and smiles, "You done?" And then we have tea and chat. That is how I see God.  I see his humanity, I see his simplicity, his calm, and that is why I'm drawn to him.  The silence in the storm.

So while I'm in this quicksand, I will find my footing, and find the peace that both my body and spirit need.  I will find the Divine, in my children, my friends, in communion, and feel the loving arms of my husband. These are the gifts... The lifelines that pull me along, when I'm too tired to continue.  Maybe that is just what the Gift of Suffering is.... Perseverance.

That is why I can smile at the warm breeze of summer, and delight in the happy sounds of basketball on the street. They are my reminders of normal. That it will come...  You see, I see the face of the Divine, everyday, in my children, in my husband, in my mail carrier, who smiles and says daily, "I'm praying for you girl, don't sweat it."  It is all around us, the simplicity of our life, not the fame or the money. 

The gifts are found in how much we are loving the people we are called to serve.

Do I know that the shot will settle in? Yes, absolutely!  And it will create more good days than the pain can cause me to suffer.  I'm an optimist, we can not call ourselves hopeful people otherwise.

Thank you for joining me on the Pilgrimage.

Kathryn, the PilgrimageGal

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The Mothers We May Overlook...

Easter our "formal "portrait...

As we prepare for Mother's Day, I thought I would share a few words about Moms...

I'm reminded of the opening montage of the movie "Love Actually" where you see the arrivals at Heathrow airport, all these folks so happy to see their loved ones... The film's directors actually set up cameras and got real people arriving into the arms of loved ones. It is so simple the way we love, when we open our hearts to the people who matter, see the perfect love in their eyes, it's true love... And perfect... Everything else, well it melts away... The piddly-stuff and foolish worries...

I think that's why a mother's love is so profound, it melts all the other stuff away, I see it in my own children, and see it in the lives that matter most to me... The touch of a mother is everlasting.

That first time you hold your child, it's like a love flood... You have waited and waited for this child... I think of my girls who have adopted, that moment they have longed for, and suffered for, all the different pains and then the moment... The moment that girl holds that baby in her arms...

The world stops for longer than an instant and we are all transformed.

I've been so fortunate to be in the hospital, after girls I love have had their babies; and its that magical and powerful moment.  I also have shared some private moments, with friends that are painful and grace filled all at the same time... But in all of these moments, I'm moved by the fact that as women, we really do shape the world. And without our touch we all would be lost.

What a blessing, to be surrounded by girls who do the Mom thing right... From the Moms who care for their children's chronic diseases and make it all seem "normal".  To the girls, who are caregivers for there Moms and their families all at the same time... To the women who are mothers, but never had children.... These women are the truest mothers in all of us... The women who have taken vocations of service, or marriage or have remained single, but they have never forgotten a birthday, are always the ones you call when you are in a pinch, are as comfortable doing your laundry as their own and are out running the free world... You know these quiet mothers.... We all have this woman; who save us, or saved us as kids, filled in for the brokenness in our own families...

The female doctors and nurses in my life and the religious sisters who taught me service and unfailing love of  faith.  Doctors, nurses and nuns are cut from the same cloth... They share all your moments; both offer comfort and a safety that you only find with the sisterhood of women.  They get it all, because they do it all... They don't get the luxury of saying, "I'm busy." They are both bound by vows of service, daily putting other's needs above their own.

That's Motherhood in its most basic form.

And as women we all do that....

So this Mother's Day, as we are loved with burnt toast and warmish tea... Remember the silent Mothers among us, the ones who have our backs, raise our children, and bless us with their selfless love....

They are our Mothers too... 

Happy Mother's Day...

The Divine in me bows to the Divine in you....

Kathryn, the Pilgrimage Gal....

Having a Monday on a Monday...

Finding peace in the pain...

My wonder shot is causing some issues, my team at NIH is trying to sort out if  I'm in a flare, or having a reaction underneath the shot... Can we just be honest, none of  that is good news, or at all easy to tolerate!  Pain, headaches, nausea, and did I mention pain, and an unbelievable desire to scrub away all my flesh, for some relief from the itching of hives... Sorry to be so blunt.

My team is unstoppable, so no worries, we will get good answers in a few hours, but my beauties had the day-off, I'm in bed and my beloved is home from work... Everyone is having a Monday!

Yesterday, two of my adorable neighbors received their First Holy Communion, a beautiful day in the Catholic Church. Second graders put on their beautiful white dresses and receive the Body of Christ for the first time. It is a day of celebration, and I love it!  But this year, I missed it... It was not to be, I spent the day in bed, waiting for news on the Mass from my peeps.

Waiting and pain seem to go hand and hand for me, not always the best bed fellows, but the ones, I'm forced to make peace with.  And peace we do, because without peacefulness, we are all disasters:  we are angry, bitter, and more importantly alone.  And when our life is at its most difficult, we can't be alone. We need our spiritual nourishment, we need the constancy of faith... Because in the chaos, is silence, and when you can reach the eye of the storm, for just a minute you find the peace in the pain.

How do I do it?... I shut it all down, I climb into bed, stop and listen to her (my body). Listen, to what I'm trying to so desperately ignore and let her tell me the sad truth, the truth I can't bear to hear... This body is more broken than I let on, she is starved for rest and balance, and she needs to find the silence.

That very message, for 14 days I have turned off, pushed through, laughed at, and attempted to forget. You see I won the medical lottery, I had the golden ticket, I had THE SHOT, I was going to leave this sad diseased body behind and make my own Bionic Woman.... But, my beautiful body had news for me... Not so much, she said.

When will I ever learn;  you can't run away from the things we don't like about ourselves... We have to love them more... To care for the brokenness, it is our true and honest gift,  our  brokeness is our humanity, our real truth. And it is the gift that we try to neglet, ignore and push to the side... We fail our gift, we fail to see that it is what makes us unique, beatuiful and perfect in God's eyes.

We are the gift... Why do we try so hard to ignore it?

My real truth is not the high-heel, ponytail, scotch drinking, set the biz world on fire girl... The real truth is the loving, green tea drinking me, that sometimes spends too much time in pj's. That can't always wear a bra because the pain in my ribs.... so debilitaing that I can't breathe... Within that pain is my ability to love at its most basic level, it's the me that does't judge, but just loves, it tollerates the imperfect.... It is in that space...  my soul sustains me, it basks in the light of Christ, not the girl running for the fences, trying to be everything to everyone...

And frankly, as we approach Mother's Day, that is not the girl; I want to teach my children... I need to remember that Christ is always hanging with the less desirable, the imperfect and that in my brokenness is the real me, the girl searching for balance, finding peace, letting go of perfection and just being myself...

So curled up in bed, writing with an open heart, I'm reminded again to look for the Devine in my brokeness... To embrace her...

Embrace the gifts, I'm blessed to have...

And as always the the Devine in me bows to the Devine in you...

xo,

Kathryn the Pilgrimage Gal

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Picking Your Team...

Working together to achieve wellness...

When you are managing a chronic disease or suddenly diagnosed with a major health crisis, it takes more than a village to keep you healthy… It takes a tactical army; of friends, doctors,  therapists and great cooks…

My therapist is a Sister of the Holy Names, so in my case I have a therapist who is an expert on medical issues, families with chronic disease, but she is also my unofficial spiritual director… So in one pick I scored a two-fer, and she is my rock next to Jeffrey. She gets life so beautifully and cuts through the foolishness, is action oriented, and gives great hugs. That is a double win in my book.

She gave me a lovely compliment this week; she told me that she didn't know anyone who had assembled a better team… Which made me think, how do you assemble a great team?

Assembling this team has been a process for years, but this core group has been solid for several years… The key to my team, they all understand two fundamentals of my wellness:

First:  My husband Jeffery is my whole world and our children are our life

. We were married 10 years before we started our family. We grew into our marriage, I had to grow-up and then we were ready to start our family.  And it was the best decision we made and as a couple now married over 20 years; our choices work...

Second

:

I don’t want someone to just make me feel better; I want someone who demands I get better. 

Big difference in this statement… It requires both action and commitment.

When you identify what you are striving for, not just feeling better, but true wellness, it becomes tangible. All of my goals are based on these principles… Medicines, procedures, tests, appointments… How many flipping times have I had to give my medical history… But, it’s a step, a rock we turn over, it moves us down the road… It's more training for this marathon we call life.

Every step is moving me towards wellness, I believe that… I have a clear idea of what wellness is…. Will I be the girl I was before all this, NOPE… Never again… I will have limits… 

What I am is fearless, and unbreakable in spirit. Because every person who is welcomed onto my team gets instantly my two guiding principles… It’s that simple… If you are not on team Kathryn, you are lovingly retired and not welcomed back.

You learn that chronic disease is designed for the TYPE A… We are the only ones who will not curl-up and die under the weight of the pain... We learn how to survive and we flourish… My Hawaiian girl stopped by yesterday and we had a lovely chat, while our girls worked on their fairy garden, she said that she loved my “spirit” (so many compliments in a week.) But what she loves is my optimism… If you don’t have faith in wellness, you will NEVER EVER be well…

Many of these team members/players need whole posts on how to select them… Today I'm going to focus on forming the team:

Doctors:

 you need one, in my case two, Go-to doctors… The doctors who get you, know who you are, your priorities, your symptoms, tell you the hard truth and see you as a person not a disease. Now here is the thing, this is a relationship and like all relationships they require a lot of work, respect, and a ton of humor.

TIP: You know you are in the presence of a Go-to doctor when they say, “I’m out of answers or I don’t know, I've never seen this before… But, I know a person...”  And then: They make the call, send the email, get you the appointment.

Go-to docs have two jobs: manage your day to day and be the conduit for outside help when they run out of answers. My Go-to’s are not my primary physician, I still see her once/twice a year for check-ups, but my Go-to are specialists. One is an immunologist/allergist the other is a pulmonologist/critical care. They are the ones who use their relationships to find me experts on my health issues, they call in favors, make demands of colleagues and fight to get me access to the best the world has to offer.

And I LOVE my Go-to's… My Go-to lost some points and colleague's support by going over the heads of some folks to get me “in-to” the guy she wanted me to see.  That is the amazing support of my Go-to doctors... They go above and beyond, just to help me.

Therapist:

 Your therapist is the other leg on a three leg stool, your Go-to’s are one leg, you and your supports are another, and your Therapist, well mine stands alone…

Because she is soooo important. 

Picking the right one is possibly the most important member of your team, she will be with you for a long time, she knows all your issues is often your co-pilot on sorting things out.

My requirements

 are very simple… I don’t want someone to hold my hand and dry my tears;  I want someone who is in-it with me to get answers.

Simple also means… Direct.  You should leave every appointment with a to-do list, homework, what you need to get done. You need tangible goals… If you have a therapist that wants you to just smell the roses and pass you tissues… You need to run like hell… You are much too busy for that brand of foolishness, time is not your friend, you have to have  urgency

 to find wellness. You need to have action oriented steps, plans, goals objectives.

Sometimes my homework is to rest, take care of my body… Other times it is to get my team mobilized for the next hospital and next specialist.  She is often the sounding board to my new ideas, plans and goals. She is also the one who helps me shape my "new reality" of what wellness means, how you live happily in the brokenness.

Your therapist does many things, she is an impartial viewer of you… 

Sometimes she has a better gauge on where I am; than I do… I get so mired in my own stuff; and she helps me sort-through it. Now listen, I do believe that therapy is vital when facing a chronic or serious disease.  I have had frank conversations with both my doctors and my therapist to say, “listen if I’m doing something psychological to make myself sick, then we need to find that too… because I want to be well.”  You have to be willing to look at every aspect of your life. Likewise you want your therapist to say, “Kathryn this is not in your head, your body is broken, we will find answers, you are doing the work.”

That is demanding wellness, not just making me feel better…

Spiritual Direction

and Spiritual Guide, your own personal Yoda:

We all need a Yoda, the person who guides us to the “Force” and leads you to your spiritual center. I have been in a women’s prayer group for eight years, drop in on another,  I practice   yoga, meditation, along with an active prayer life. Also, I have a life-long family friend that I call regularly to talk about matters of faith… And then I have my therapist. Your mental health is equal to spiritual heath in all matters … You need to constantly grow this side of your life… 

You must find peace in the foolishness….

Having

a spiritual guide is one of the best investments and she is easy to find… All you need to do is take an inventory of the folks in your life. The person who is always at peace in the hurricane of life? That is where you start… Ask her how she does it? Where does she go? Who does she talk with? Chances are high she does not do this in isolation. And if she does, well she is a saint. So hold on to her!

In the Catholic church, priests and nuns have relied on Spiritual Directors, a kind of spiritual  teacher/guide. The job of a Spiritual Director is simple--help you draw closer to God. You can find both formal or informal guides.  For some, you’re therapist may be able to provide you with a two-fer, like I have, or you may find that your minister or other faith leader may provide you with the tools to fit your life and lifestyle… 

Please, don’t over look this part of your team… Spiritual Direction allows you to grow in so many amazing avenues. When you open the door to this idea, it won’t take long to find your path… You may find that when you are open, the guide will appear.

Your Three AM call

… and your fairy godmothers:

This job falls on a several different girls in my life. This job is the one, when you are really sick you call this friend at 3 am.... They come running and my True Love takes me to the hospital.

This friend comes over in pj’s and sleeps with your kids when you are admitted. She makes pancakes in pj’s, watches tv, and has unlimited hugs, loves till the day or night gets sorted out.

This job also requires creating out of thin air, carpools, play dates, AND world class entertainment, when I was too sick to lift my head.

My list also includes my extended "created" family…. This is for the non-biological members of my family, who are just as important as our "real" family… Jeff and I could not survive without this branch of our clan… 

They are most evident in my

Fairy Godmothers…

The fairy godmothers are the women in my life who are my soul-sisters, who drop their very busy lives, jobs, spouses and roll-in and make the magic happen… They come when my True Love travels, they nurse me, Loooord they feed me sooooo good, and how they love my beauties… It makes me weep just talking about them...

Fairy Godmothers sprinkle the fairy dust... And I rest, sleep and curl up under their beautiful wings… I get to bask in their sunshine. No one has better Fairy Godmothers than I do, and my kids about die when my A-listers roll into town… These women, are the best of the best… 

This year we were blessed to have Norah’s godmother Jane and my stunningly beautiful soul-sister Shelly, both came for a week when I was too sick to do much of anything. What makes their arrival so special is they make the time beautiful, fun, seamless and my beauties forget that I'm sick, Dad's away and life is hard... My FG's have known me so intimately for so long, that they can run my household the way I want to and that creates calm and fun…. Which makes it all work for everyone… And it’s a huge help for Jeffrey, because he doesn't have to worry about us and he can drink a beer, watch the game in his hotel and work.

So this is what I mean when I say I have a small army… All of this would be nothing without my Jeffrey and my Mom, who almost daily drops life to help her baby… I am constantly surrounded by my Army of team Kathryn… All searching for the goal of wellness…

In my upcoming posts queue, I will discuss how you find your doctors… The supports at school for my kids... How communication with your team is critical, and more on spirituality/faith,  my thoughts on what wellness really means. I would also like to talk about what causes me stress as a Mom with an autoimmune disease... All that and so much more as we roll into spring and summer… 

If you have any ideas, suggestions or questions, please leave a comment, or don’t hesitate to contact me directly via email at pilgrimagegal "AT" gmail "dot" com.

As always, thank you for walking along on this Pilgrimage with me... 

The Divine in me bows to the Divine in you...

Kathryn the Pilgrimage Gal

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Holding Back the Tears…

One Day of Blissful Perfection.

I’m typing this Saturday night after the busiest two days I have had in years… Just doing normal Mom stuff; picking up kids, attending practices, having lunch with my Mom and walking two blocks to a friend’s house…

This is more than I have done in a long time. Toss that on top of a trip to NIH that in the past put me in bed for days and it is just short of a miracle. My life has changed profoundly in three days all because of a little needle I have been putting in my leg every morning… A treatment, if it works may cost $250,000 a year. No words for that… (Except pray that our insurance covers it…)

How do you say the word “improvement”, when that has not been in my vocabulary for seven years…? I don’t like to make comparisons, but it is as if I have been unable to walk and suddenly stood on my own… I have never been so happy that one of my doctors was out of town, because I can hear Harvard now… “Kathryn, please just take it easy, don’t overdo- it…” To which I lovingly want to say, “Are you kidding me!” “Seriously?!” We all have been waiting and praying for improvement. Now as I write this tonight, I’m in serious pain, and I hurt everywhere, clearly the marks of overdoing…

I’m like the contestants on Survivor during a food challenge… They know they are going to throw-up because they have been living off bugs and rice; but the chocolate cake and pizza just taste too good… That’s where I am…

I will gladly trade the pain for the ability to Live… Norah told our neighbor, “Ever since Mom went to NIH, she has been awesome!” Out of the mouth of my baby… Truth!

But it is also scary… I’m so scared, truly frightened, I have tasted something that I had forgotten was possible… I forgot what it was like to be my effervescent self… I have not had a day like today in a long time… Where I simply loved and lived my life…

So I’m scared; maybe it was a placebo effect, maybe my spirit wanted something so badly that my mind has created this illusion… Or maybe the awful side-effects will roll in tomorrow…

What if….?

The two words that wreck us every time… So as I sit in my bed, exhausted, and feeling so blessed that my Norah faded on this day before I did…. That I have had a miracle day… I will take it, even if it is just for today…

My blessed miracle… Today was perfection and I’m grateful. 

I do believe in miracles… Maybe just maybe, this one is for me…

PilgrimageGal

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Connecting the Dots...

Following the right path...

Pilgrimage Gals's guide and day to day tips on managing chronic disease.

Friday was a PJ day… I try to make time for days of rest. And that also means, I don’t beat myself up about it. I accept it. 

Acceptance makes everything easier....on my mind, body, spirit.  I didn’t do too much today… I mean I did nothing… My accomplishments: brushed teeth, took my meds, kissed my family good-bye or should I say they kissed me! With my cup of Irish breakfast tea, I curled back into my bed. After my lovely nap, I had a bite to eat, and changed my clothes...a t-shirt with a cozy sweater to keep me warm. My bra got a day off too, thanks inpart to my famous cough, for making my ribs so painful my whole body ached. My beauties (children) got home at 3, they were happy to see me clean and awake as I handed out Friday afterschool treats…

I have a very wise advisor in my life, and she told me, “Kathryn, you are a tough one, you have a very high pain threshold, a very high depression threshold, a very high anxiety threshold… So when you start to feel those feelings, you need to pay very close attention.” 

That means in my world, if those thoughts and feelings are moving in, a HUGE warning light is going off… The reactor is overheating, so when I feel that stress on my body, it means I need to slow the heck down.  When the reactor light is flashing, and the alarms in my body are going off, I need to quickly shut it all down, batten down the hatches, maybe even raise the white flag and call for reinforcements (

I’ve got a post on that

)… 

I volunteer for an auction committee for my kid’s school. Every other year, we have a big Gala Night, where we get dressed-up and raise money. Being on the committee, I work all along leading up to the big night. But the morning of the event, I’m at home watching tv, and the day after, I’m home in pjs. I can’t help with set-up and tear down. But I’m way up front at the committee meetings, I say flat out what I can’t do, followed by what I will do. And I don’t feel bad at all about not helping, because I have done my part. And yes, I’m the only one on the committee who is not there the day before and after… But, I’m a part of the team, I contribute. Never has anyone said anything, but good stuff about my team work… I make my abilities speak for what I can do, not for what my body can’t.

In a former life, I worked for Starbucks Coffee in Seattle as a Project Manager for most of the products sold at retail. I managed the timelines for the production of: coffee bags, packaged foods, CDs of music, shopping bags, the coffee cups you drink out of every day; and so much more… It was my job to make sure artwork got delivered on time so the product made delivery deadlines… It was the perfect job for an over achieving type A in her 20’s. But the most important lesson I learned, whether talking to senior executives or vendors, is to manage expectations, never overpromise, and if you do, have a really good back-up plan. 

Now remember, calamities occur, we are all imperfect, but this biz strategy has helped me more than once or twice in the last few years as my personal health issues became way more complicated than a Starbucks product roll out…

You see, I have learned how to manage the unmanageable. And that is by no means a small task. My business experience, my life as a mother and all around busy girlness, have helped me come up with this road map… Hopefully some of them work for you…

So here is my checklist. My strategy for getting through a week, fighting the good fight.

1. Every Sunday night look at your planned activities for the week; and decide which are critical and which are not.

For example, scheduled doctor’s appointment, school field trip, therapy session, grocery store run, planned dinners for the week, lunch with friends, kids’ activities.

Not everything has the same value. And it is highly likely that you cannot do everything on that list. You must pick ONE thing as the most important. And you don’t get to change the activity after you have accomplished it. It is the key to success for the week. Now here is the thing, only you can decide, not your kids, not your beloved, not your parents… You must own this choice. Maybe it’s going on the field-trip, maybe it’s the lunch or probably it’s the doctor appointment. You are in control of the choice. I also have a very strict rule in my house about the weekend. I can only commit to one social event on a weekend. Meaning I can’t do dinner out on Friday night and then do a Saturday antiquing trip with my girls. I have to pick one or the other. My body is not in the shape to do multiple events on a weekend. And in keeping this schedule, you have to be honest with your body, about its strengths and limitations.

2. Plan for at least two unexpected “surprises”, a sick child, a fun unplanned lunch, spouse working late.

Life will always intrude and be more complicated than you expect. So leave room in your schedule and your energy reserve to handle these surprises.

3. Plan for mandatory rest periods.

If I have a doctor appointment, pick-up new meds, and hit the grocery store. My afternoon better be on the couch, with nothing planned till the kids get home. And that means feet-up, blanket-out, and pillow ready. Relaxing… No laundry, no calls, no social media… Nothing, but rest. 

4. Schedule in something nice for yourself everyday.

Maybe it’s a warm bath, or swim at the pool, or a long walk,  reading a book, or getting your nails done, or watching that special tv show, picking up flowers while at the store as a  reward for a successful day. Some little thing that makes you feel special, beautiful, nurtured, loved… Something you do to care for yourself.

5. Make time for your spiritual journey DAILY.  

This is as important as taking your meds, or going to the doctor. As you all know, I’m Catholic so for me that is prayer and Mass. But in addition, it is listening to music, meditation, reading a faith based book or scripture, writing in a journal, doing yoga, taking a walk in nature, attending my prayer group. I also receive daily emails from faith blogs that I follow, they always have a question that I can reflect on during my day or in prayer.

Any avenue in which you are open to seeking the divine.  It is different for everyone, talk to the girls in my prayer group and you will get as many different answers as girls in the room. My Flower Girl, does the flowers for our church, which is its own kind of prayer. 

6. Take time to eat well and exercise.

I have a love affair with sugar; it’s my dirty little secret. When I eat too much, I feel sick. When I eat clean and fresh with little to no processed foods, I feel better. I have been gluten free for 7 yrs. I don’t have celiac, but I’m sure that I have a sensitivity. As for exercise, that is really hard for me. My issues make it very hard to exercise right now. I try to do my best, yoga, walking when I can. Just try to move… Every good choice helps…

7. Don’t ever lie to yourself.

That is a huge one for all of  us… Folks who fight chronic disease are warriors, we fight every single day, we keep the world running for our family, and friends… We are tough… So you may lie to others about how you are, but don’t lie to yourself. Take care of you, your soul, your mind, your broken body... That is the only way to stay strong for everyone else…

This was a different kind of post for me… I hope everyone can find a little gem to take away for their own life… Some of these items need whole posts just for them… But it’s a start.

What’s on your list?

Namaste... The Divine in me bows to the Divine in you...

Kathryn 

Pilgriamgegal

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Vainsang

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What Makes a Great Day...

Spring... Finally...

Today is the most beautiful day in 2013, our first real sighting of a lasting spring… And the third day in a row that I have held it together, meaning I accomplished my goals for the day.  The weather helps and makes moving around tons easier.  My doors and windows are open, my outside fountain was turned on… and I lived. 

It’s time to discuss what it means to achieve a daily goal… My goals today: drive and shop at the grocery store, and to manage my doctor’s appointment… Alone. 

That is all I did, and to me that is a huge success. I also made my own lunch (which was an amazing salad with club soda), did some laundry, returned some calls, made snack for the kids after school, helped with homework, started dinner, watched over showers and bedtime rituals, cleaned and tidied the house a wee bit and finally sat down to write a post.  

Now if you were reading clearly, here is what I didn't do: Get the kids ready for school, make lunches, breakfast, drive carpool, pull a lunch/playground shift, drive carpool home, make dinner, do dishes…

And that is “A OK”,  in my book, I have shifted my priorities, I have embraced what works for me and I have also made peace with what I can accomplish in this body.  

I do plan-ahead for the busy week, knowing that the wave of unrelenting fatigue can come at any time… But I also triumph in my good days… Today fit the bill, and I loved it and lodged it into my list of beautiful memories, my exquisite moments… 

A good day also means possibly stepping down off medicines, or maybe it means that the meds are holding me steady, that I’m finally stable, I’m managed… These are all safe words for us… Those who battle this war within… 

When I was a teen we had the most glam neighbor, her name was Molly, she was from Kentucky and she was in her 70s when I was in my teens. She had been married to her husband for 50 yrs. and they still looked and acted like lovers in their 20s… They were the real “Notebook” couple with none of the drama. Molly gave me lots of practical advice; I would sit and drink lemonade in my school uniform while she worked in her flower garden… 

She and her beloved would garden and work hard outside, and at 5, she would step inside and come back out with Waterford champagne flutes and they would drink good champagne in their muddy garden clothes. Later she would go inside, shower, dress and make this amazing dinner. She would serve a four course meal, more wine, crystal, candles and china on the back patio, listening to music and they would delight in the garden and each other… 

It was from watching them, teachers of marriage, that I learned the best lesson of my life, which is; drink champagne on Tuesday… Celebrate the normal… Celebrate the everyday… 

Don’t wait for a special occasion, celebrate the sunshine or a bunch of flowers at the store, a nice phone call, an A on the spelling test or better yet celebrate the B-… Or a successful day in the garden... Delight in the everyday, in the normal; because when life is bumpy, you will long for the simple, for the normal…

So that is why I celebrate today.

Because, today was perfect!

I went to the store and got to the doctors and my family is safe, happy and really tired… 

It was a great day…

Hope yours was too… 

Kathryn

PilgrimageGal

photo credit: Kathryn Ferguson

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The Elephant in Every Room...

The Elephant in Every Room...

The Elephant in Every Room... How are you feeling and other lovely questions...

I have had a beautifully busy last few weeks. I have attended dinner parties, birthday parties, a fabulous sparkling water and wine club with the girls, and some fantastic chats on the green sofa. And I'm struck by a common thread... I'm losing my conversational edge... No, really, I don't know how to do social chit-chat.

On my red pen list of things I'm doing wrong: I'm struggling with how to handle well wishes... How crazy is that?  And I know my friends often struggle with the same... 

These days any social encounter, a quick stop at a store, or just being out and about, I'm treated like a celebrity. People are surprised to see me, so they flock to me to say hello, and I LOVE IT!  Nothing makes someone who has a chronic illness feel better than friends and loved ones who are happy to see you... It fills your soul with an extra energy boost. I'm seldom alone on these outings; and I seem to always have a beauty or two with me, and they smile and hold a hand, happy too, to have me out-and-about!

But inevitably the question comes, "How are you feeling?", and it's a hard-one to answer, because usually it has taken all my energy to be anywhere... For instance at Easter, so many friends gave me hugs, love and told me I looked great and asked, "How are things?" and I didn't know what to say. I either make a joke about my magical make-up skills that cover the dark bags under my eyes and horrible pale skin.  I used the make-up line, five or six times... Or I say "fine", which is a lie; or my gran-daddy answer "horrible", or I say "good-enough", because that is all I have. All of these answers seem wrong or lacking...

My Sunshine Girl always asks me in the most loving way, maybe it's because she is Sunshine...  She asks: "Is it a good day?", and I love that question, it's not about my body, or my mind, or my spirit, it's about all of me... And that works for some reason. Because it gives me more ways to answer. And my answers are more than just how my body is working... Sunshine doesn't even know she asks it that way, it's just how her spirit works, open and honest. It gives me the chance to say it's a perfect day, because my beauty just sang in the choir, or  it's a great day because the sun is out and it feels great on my skin. Or I got to the cake store and we are in the possession of some amazing ingredient... You see, I'm the first one to tell people when I have great news or I feel good...

Now if you are someone who has asked me, "How are you doing/feeling?", don't beat yourself up... I catch myself asking people all the time, to friends who are ill, have parents that are sick, and then I get in the car and kick myself, I know this is not an easy question with a quick answer. Or classic/favorite: ask a pointed question with kids standing around, done that more than a few times too... I'm the one who has the illness; the expert. Nice...

We just all want to fix what is broken, our hearts and minds act so differently... Our hearts won't tolerate the pain of a loved one, and we can't settle in our hearts suffering of any kind. To solve the problem, we allow our mind to act as the "fixer". How are you? What can I do?How can we fix the problem? Men hold doctorates in this. Men are hardwired to fix, that's why women get so frustrated; we want them to listen and feel... And we are all too aware, not everything can be fixed. 

There is nothing wrong about any of it... And sometimes it's fine to ask, when I'm alone... But some days you just want to give your chronic disease a holiday, and you from always being known as the sick girl.

Go back to my celebrity analogy for a second, you wouldn't go up to Meryl Streep if you saw her in a restaurant with her kids having a family meal to say, "Hi, I'm your biggest fan, can I have your autograph and talk about your theory on acting"... Listen, I'm not trying to say I'm a zillion time Oscar winner, or I'm better than anyone else... I'm just saying, sometimes Meryl wants to be Mom, wife, girlfriend, not Academy Award wining actress...

Does this make sense at all? Or do I sound like some crazy snob? That is not my point, and if that is your takeaway, I have completely failed in this post. It's just, I'm so happy to be out and about, I want to talk about you, your family, can we gossip about shoes, spring trends, or kids?  Normal stuff and give my chronic disease a day off... 

And to be honest, sometimes I worry that I have lost my cocktail party banter, that I can't talk about anything else...

But, I do understand, it's a double edge sword, because I/we/all chronically ill folks, don't want to be forgotten, and do want you to ask how we are... So it is a fine line... At times, I'm more worried about you, I don't want you to be disappointed when I tell you that my life is hard, and my pain is really bad, and I'm going to be in bed in an hour because I gave all my energy away... 

I do love a quick email that says, "give it to me, what is the latest", and I will speak my truth if you come over for tea, and we have an hour to visit. 

There is no magical answer.  And I know that it is more about me and how I react to the question, then the question itself.

But, I can tell you what friends have said that I have cherished: the extra hug that says, "you look beautiful", "The kids are so happy, don't worry", "This event was better just because we got to see your face", "I love seeing you on my couch, (and I don't care you are in PJ's)", "Jeff is always smiling with the kids", "I'm so touched you made it, thank you", "I've got this spot on the sofa for you and a blanket", or just the knowing smile that says, you rock Kathryn and I'm all in with you.

This post feels heavy handed, and I don't want it too... We all just want life to be normal again, but that may not be possible.  So this is what normal for me looks like today... 

It all can change in an instant... 

I heard this quote on the news, I wish I had the source; but it's too good not to share:

"Good things are coming, they are already planned for you!" 

Well alrighty then... Lets get to the getting...

More than any post I have written, I want your feedback... So please share your thoughts, your challenges with love ones or your experiences with chronic disease.

And please, feel free to share this post. Sometimes just pulling the curtain back and talking about the Elephant in the Room, helps us all...

Namaste (the divine in me, bows to the divine in you)

xo,

Kathryn

The P

ilgrimage Gal

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David W. Siu

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photopin

cc

If you would like to join me on this pilgrimage, filled with my bad spelling, self-invented grammar, and over all foolishness…  Click on the web version of this post and look for the “GET PILGRIMAGEGAL UPDATES VIA EMAIL” option at the top of the right border and enter your email address.

Love Letter to Mom...

Three Generations...

(Back when I could go to the beach.)

Happy Spring...

I have used this Lent as an opportunity to review the last year, and it reminds me how much I love Easter; the chance for rebirth, renewal, of hope.

Lent offered a time for blogging reflection, to see how this whole exercise has changed me and my relationships...

Lately, I have had some of the loveliest talks with my Mom. We got away for a perfect lunch and I just delighted in her company. Maybe I'm the one who is finally becoming an adult at the ripe old age of 42. For the longest time, I was under the impression that the whole blogging thing was too much Irish for her German soul to handle. But, I was wrong, like so many things about my Mom. She is so mysterious to me, now more than ever...

You see, parenting is really hard and I'm learning that grown-up parenting is way harder than navigating the "he touched me" or "Mom, she is so annoying; the way she constantly talks, can't I please have a moment of peace."  The real question is, which Mother was hearing these comments... My Mom in the 70's or what I heard today? Scary, the answer is both... HOLY CATs and DOGs!... The irony... God your sense of humor is not funny... Seriously...

But, back to my Mom, she has always been my biggest fan, and has told me so. But, she hurt my feelings early on with the blog. I wrote what I thought was a love letter about my

Grandmother

(her mom) and she read it and well she didn't love it... So immediately, I'm all on defense, getting my Irish-up. We didn't discuss the blog for a long time. Several months later, I broke down and showed her another post... And she loved it... And I was 7 yrs old again looking for approval and wondering, why this time and not that other one... 

And then she sprang it on me...

Basically, she told me that she never realized that writing was one of my gifts.  My writing was too much for her, the reality of  my pain and struggles...Well they hit too close...  But, she explained that I had developed this voice, because of my illness, and I was writing in-spite of my illness; and oh by the way, I had tapped into this from a place of physical pain and made it beautiful... And she was so proud of me...

Well, you could have knocked me over with that one... This conversation continued for two or three talks where Mom shared how my writing has touched her... Again, in my narcissism, I never saw that coming... Never... 

And what made our conversations so powerful, was how right she was... About everything. I have become more open, vulnerable,  honest... This space has given me a peacefulness that I have never had... An opportunity to pray, via my words, to share my spirit and to feel the presence of  Christ in a different way... 

That is what this exercise has given me... Peacefulness...

You see my illness has changed me so profoundly...

We all have heard stories about some people who lose a sense and then the other senses become keener and more aware... Maybe that is what I am learning.  My body is failing me completely, but it has given my mind, spirit and heart the ability to love better... To see clearly...

No surprise that the woman who spends so many sleepless nights worrying about her daughter is the one who sees me so brilliantly...

I love you so much Mom... Thank you, for all the beauty in your life lessons...

Forever yours,

Kathryn