You Look Radiant...

Quick stop on the way to Stanford...

October is flying by.  Already half way through. I feel like I'm chasing myself. It's a feeling that I know many of you share. How to balance all our responsibilities and still nurture ourselves? It's a question that I find myself asking more often.

October is filled with two major trips, one to the medical center at Stanford. Have I mentioned California is a big state?  Stanford is about five hours away from home. During the trip I will meet with my cardiac and neurology teams. A week after Stanford, I will leave for a week long trip back East to DC. The trip is already packed with visits to NIH, my old doctors, meeting business contacts and handling some media.  On the trip, I'm trying to sneak in visits to as many friends and family as I can. I never lose weight on these trips, I'm very well fed!  I promise a full report on the entire trip, the media opportunities and all the delicious meals in the coming weeks.

Which gets me to the point of this post. Women are so good at taking care of others that we forget that nurturing our-self is the most important job. The consequences can be severe when we don't: mental health issues can arise, in my case my health can take a turn and we can just feel tapped-out, that we have nothing left to offer the beautiful ones we love most.

I have been leading a faith sharing group at my parish and within that group one of the participants teases me that I can't possibly have health struggles because "I'm Radiant". He means that with so much love and support.  I'm coming each week to give them the best two hours of my day (or sometimes the best two hours of my week.)

I have explained that they are one of my weekly priorities and they are getting the best of me for that day. After each session, I go home, wash my face, put on pjs and climb into bed. Did I mention its was Noon?  I don't pick up the Beauties from school, I don't make dinner, I rest for what's left of the day.

Now here's the critical take away from this choice. My Beauties and Jeff are not getting the best of me on Friday. I have chosen with intention; to freely give my energy, my sparkle and my love to others. Friday is for this group, in return my family get a wife/mother who naps and watches Netflix from bed.

Now some of you will disagree with this choice. Shouldn't my best energy always be for my family first?

In my heart the answer is well... No.

Here's why.

This post isn't just about my health, it is about all of you beautiful working moms who struggle with balance. Sometimes you have to feed yourself first. For me it's getting to run this group, a space where I grow in my faith life, and improve my facilitating skills. It is because of my interactions with others that all of the aspects of my life bloom.  This service for others, places the focus away from my health woes. I get to focus on my talents for philosophy/theology and public speaking; I get to work on my gifts and in the process I'm feeding myself.

When I feed myself; and give myself permission to grow and shine; I'm also making myself better for people who love and count on me. Investing in yourself is never selfish as long as you balance all aspects of your life. When my schedule is filled with more choices away from my family. When all of my choices are about me and not considering my family. That is when I'm out of sorts.

You should schedule that cut/color, manicure or dinner with your girlfriends, train for that marathon, attend that conference for professional development. My friend Jess called me to talk about a professional conference she is attending. Jess felt like it would be great for me; she also shared, it was the first time she was attending because it always fell on her youngest daughter's birthday. This year it wasn't, so she was finally able to go.  What I love about her friendship is she is unabashed at saying she loves to work, but never at the expense of her family. She gets it! Balance. Choices.

For me or others with chronic health issues, it goes even deeper. I never know how much energy I have till I'm flat on my back, with my body reminding me that it is in fact the one in charge of running this rodeo. That reality adds an extra level of complexity to balancing choices, to make sure that I'm doing what is best for everyone. A sick Kathryn only adds pressure to an already taxed body and it puts undo pressure on Jeffrey and the Beauties. So when it's ever avoidable, I'm not going to put my body to work when it needs rest. But, often it is impossible to know ahead of time, where that limit line is...

So we make the best choices we can each day on how we spread our radiance, hoping we shine enough for the ones we love, before the tank runs dry.  Some days we choose well.  Some days we may fail.  Each day is a new day to get it right.

Radiance is the sun-shining out of you. It's your ability to share your love, your talents, your truth with not only your family but the world. The world never has too much radiance, too much joy or too many beacons of light.

So as my friend Satnam says, "Keep shining brightly."

Namaste my fellow Pilgrims.

The Divine in me is honored to bow to the Divine in you. Always...

xo,

Kathryn

PilgrimageGal

Photo Credit: PilgrimageGal

Thank you for walking with me this week and always. I do use social media to keep in touch. You are welcome to find me on

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or comment below. I personally answer all my correspondence...and I'm always glad to meet another traveler. xo

Stress, Worry and Disappointing Others...

Unmailed cards and letters...

I met a new friend for coffee yesterday. Making new friends is a lot like dating. You often need several simple easy outings to see if you and the other person are clicking and other times you just know right out of the gate you will be a good fit. My new friend and I were sharing some honest truths when she asked me a great question, "What is the hardest thing in your life right now?"

Let me be totally straight; this post is FILLED with FIRST WORLD PROBLEMS. I mean really, in the grand scheme of things, my life is CAKE. So while you read this post; it's designed to remind all of us, that daily life often derails us. O'my goodness, we can get caught up in-it. The foolishness that just tanks our whole day, that are barriers to being present. The negative thought that constantly rolls across your brain like the crawl on CNN. We all have these moments.

I'm a pleaser. I don't like to disappoint. I don't want to be a burden. I love nothing more than having guests in my home, fixing the sheets, finding treats for their room. I love that experience. But this time, I'm the guest... and I'm a little nervous.

Norah and I are flying to Maryland for a week; my little mini-me and I are having the exact same feelings as we set off. We are excited and nervous.

Excited is so easy, I get to wake-up in my Mom's beautiful condo, with all her mama love and attention. I get to curl up and get unending hugs and snuggles, too. I will sit in her kitchen while she makes me breakfast in my pjs, giggle and drink tea. I get alone time with both my girls; my mom and Norah.  Norah and I have a hit list of favorite restaurants that we need to eat in a billion times! And of course we are on pins and needles to see everyone we love so much. We are spending two nights having sleepovers in friend's houses. Which is amazing since I have never slept in their homes before since we used to live next door!

I explained to my new friend, that I'm loved so well by so many that I'm nervous. Nervous I won't be my best for each and everyone we see. I'm worried about my humanness. I will be tired and my loved ones will be disappointed, that they won't get me at my best. That I don't have time for everyone and that makes my stomach hurt. I want to see each and every person I love.  The leaving was so gut-wrenching, it felt like my soul was being ripped out of my body, it was the death of part of my life. I have in the last 6 months come out stronger and healthier; I need my loves to see that. To understand that I'm really good. That we are on our way; we are all good. To see that in our faces, to feel it in our hugs, to know that we are loved and happy.

I'm nervous that I have to face NIH without Jeff. I need to do it on my own. And once again I have to face this disease. The one I never asked for, the one I tolerate, the one that is the gift that keeps giving. I don't want to answer the mind-numbing questions yet again. I want to play. I want to forget I have this horrible disease.

Then just a few days ago, Norah asked, "Mom, what if the plane crashes?" Thank you flipping 24 hour news channels... We talked her off the ledge, but really, why must everything be so hard.

So my head is just a little busy... With a whole ton of foolishness.

I came across a stack of letters I never mailed. The letters were written on the plane as I left Maryland 6 months ago and in the first days after we arrived. I never mailed them.  I found them last week. I can feel my pain in the letters as I re-read them. Oodles of thank yous and I love yous, and in-between the lines, the pain and worry that the personal connections will be broken by time and the miles of separation...  Thoughts never sent, to my friends and family; people that I love most in the world.

Interesting isn't it?  I'm the girl who spills it all out all the time. But, I just couldn't mail them, or reveal the pain... And I'm still not sure when or if I'll be able to send them...

Which gets me to my busy prayer life:

I have been reading the Act's of the Apostles lately. It really has helped me. This hot mess of early Christians; who find themselves in the same place I've been visiting. Wandering a little lost, but well loved. This group of folks who will build our church. A church from nothing. This group of believers, wandering around the Mediterranean talking about this one guy. We are being kind when we say none of them would have been on anyone's list to change the world.  To wake up and find their whole world suddenly turned upside down... I feel a special closeness.  I feel like them often.

I'm a little lost.

More aptly: I'm in the weeds.

When you wait on tables; often you suddenly have your station filled, you can feel paralyzed.  In the restaurant world, it's called being in the weeds. I'm in the weeds, as I head back to DC. Everything will be there; but I will be in the weeds. Trying to be healthy, trying to see everyone, trying to be my best.

So when I say, "first world problems," it's no joke. What an abundance of joy to be worried about juggling so much. The abundance of love, of kindness, of joy. What a problem to get out of the way of!  We are very blessed to be loved so well by so many... Sooooo many.

So as I rotate laundry, find my luggage, pack my things; I will do what I do best. Take a big deep breath. The Divine has this all in hand. Every second, I will work on being present, and know that the Divine has this all figured out just for us. Miss Norah and I will have so many unplanned moments of Grace, that we just can't pre-plan. We must allow the Divine to orchestrate the moments.

I'm off to pack too many shoes into one bag, find a book for the flight, and sit back and once again be reminded of how much love I'm about to be drenched in!

Norah and I are as lucky as we are Irish; and filled with an embarrassment of blessings--today, always and forever.

I'm taking a week or two off... but promise to be in touch when we are back home and rested.

Till then... Try looking at your abundance of blessings.

And as my dear SP says to me, "Go Gently..."

So as we depart, go gently till we meet up again...

Much love always.

Kathryn and this time Norah too!

XO

Photo credit:

pixabay

Summer Vacations, Field Trips and Medical Procedures...

Field Trip Selfie at NIH...

For the last two years, on one of our extremely hot summer days, I load the Beauties into our dirty minivan and we road trip to NIH (The National Institute of Health: Clinical Center). It is a 15 minute drive from our house. I check the Beauties in at the gate and they get awesome visitor's badges, they go through the metal detectors, watch the car get tested for explosive devices and then we drive on campus. They love this day. According to Norah, "It's the best cafeteria in the world" and she also said, "Yep, I really think I could work here one day!" and Ian "loves the architecture and design of the building".

We look at the photos of the Presidents who have visited and compare notes on the exotic fish in all the fish tanks. I show them where I get my blood drawn or where I have received various treatments. It is an all access pass.... The day we go is always a day that I put on make-up, a pretty sundress and feel good. I want the children to see me at my best.  Today we went to pick-up some medical records, but we also scored lemonade, sandwiches and some tasty chips. Then I watched them as they went around and around in the revolving front door at the hospital.

It was a fun day. Hard to believe, but it was...

And it was supposed to be. We are in the business of educating and de-stigmatizing the experience. I own this conversation, I shape the dialogue, I guide with my hand what the Beauties' understand about my disease. I own that... So I frame NIH as my place of wellness, it is the place I get better and so it should look like a fun place, a happy and safe place.

Norah suggested that Jeff and I go there for a date night. It looks like the lobby of a grand hotel!

Make no mistake, it is a hospital, the inhabitants are very sick, and for many it's the last stop. But that doesn't mean that it shouldn't be a place of great hope; and that is what I have made it for my family--a place of hope.

I mention this day for two reasons. One, I get to talk about my fantastic Beauties! But more importantly, I can share with you how I frame the tough stuff.  My children aren't shielded from much. Not the divorces in our family, not the mental health struggles of loved ones, not the horrible case Jeff sat on as a juror this week. Nope they get a ringside seat for all of life. Almost everything can be explained to the children in age appropriate language.

This past Friday, we picked up my mom and took her for an endoscopy. This was Norah's second time, we had done it a year ago when she was 7. This was Ian's first time. So we are in the car driving to pick-up grandma and I start to remind Norah and explain to Ian what the day entails. We have electronic devices charged, water bottles and some chocolate stashed, we all ate a huge breakfast and were ready for the day.

I explained that we would be in a doctor's office, and back behind the waiting room would be a hospital, filled with gurneys and medical devices. But before I could explain to Ian the set up, Norah speaks-up, "Mom you drive, I've got this" and then she begins...

"So Ian, Grandma needs to have a camera put down her throat to see if her throat and stomach are healthy. But you can't put a camera down your throat when you are awake. So the doctor gives Grandma medicine that makes her fall to sleep.  When she is asleep, she is also monitored for her heart and breathing with a pulse-ox like mom's and a blood pressure cuff. But she is going to be just fine, she has no chance of dying because she and mom have done this A LOT. And the doctors are there to keep her safe."

Hard to believe, but I just read it to her to make sure the quote is correct. My ever technical daughter said, "Good."

As I drove, I witnessed my daughter offer bedside manner from her booster seat in the back of my mini-van. I almost cried as I listened to her, thinking that some future patient is going to be blessed by this childhood- blessed that my Norah has been on this Pilgrimage with me.  As she lives with my chronic disease, she has been honing her skills from an early age. This is how you frame life's horrible truths. You realize that someone else will benefit from your struggle. We are paying it forward in the most unorthodox manner.

Norah also talked about the wires and beeping that you would hear, and that while it looked scary it is all safe. I also explained that Grandma would be super hungry because she hadn't eaten and that I thought she would treat us to a tasty lunch. (which she did!)

When we saw my Mom she was fine, antsy to get going. The nurse was nervous about Norah wanting to read the report with the photos of mom's esophagus, duodenum and stomach. But Norah was all in, Ian was sitting in the chair playing on the DS saying, "Grandma, I'm just glad you lived." More on Ian's version of this trip in a later post.

There we are in post-op, in the the equivalent of an ER, I have my beautiful anxious Aspie, my junior medical intern and my mom who is a little stoned and ready to roll... Trying to keep them all organized, managed and comfortable was my challenge for the day!

So when I say Norah is going to be a doctor, I'm not kidding, she wanted every detail. She watched the vitals, we had to talk about if they were high or low. While sitting on my lap reading the report she is watching the nurse pull out the IV. Norah was enthralled.  The nurse was worried Norah would faint. My mom said, "Ah no, she helps give her mother shots." The nurse was gobsmacked. Not the right choice for every 8 year old, but good for my daughter.

I have too many gems from both these trips to share today. I need a whole post on my sweet Ian's worries about my mom's procedure and perhaps another on the challenges of raising two divergent beautiful souls.

I try my best to use every opportunity to teach, to guide them for the future. We work through situations with training wheels so that when adulthood comes-- all too soon with too many challenges for anyone, they will hopefully have the skills and ability to take off their own training wheels and pedal on without me.

Peace be with you,

   Kathryn

   PilgrimageGal

Photo Credit: PilgrimageGal

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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matthileo

via

photopin

cc

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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ginnerobot

via

photopin

cc