Mary's little lamb

Just 48 hours ago I got a tearful call from my mom. "Mary's water broke."  Ready or not, baby Rachel was very likely coming and far too early for all of our liking. The fear in that call jarred me out of a sound sleep and the only thing I could do after I hung up was pray and struggle into a pair of jeans.

When your only sister faces a health crisis your heart beats faster as your brain treads on a momentary stabbing pain of 'if' ...and it scares you to death. Then you rationalize and try to just move...and do something.

 Both Mary and I have intimately known this fear before. Mine as she underwent a harrowing spinal surgery, hers, likely through various portions of my two bouts with cancer.

But this time around (and all along these three months prior) I've been terrified about the health and safety of two precious lives...my sister and her unborn baby Rachel.

Just after Thanksgiving we learned that the baby Mary was carrying (who we had just learned was a girl) was in trouble.
Fluid was accumulating inside of her, threatening the development of her organs. We feared together as Mary and Karl learned the odds were not great. The terror they felt as they were given an option to terminate her pregnancy woke my family into a reality that once again, life can be as cruel as it is beautiful.

But somehow my remarkable sister and brother in law were given a gift- medical hope for an experimental inter-utero intervention.  Faced with little other options they chose this sliver of hope...and they chose to try.

I watched my sister press on with courage and incredible love for this little girl who she and Karl wanted very much. Even though there was fear in her heart she kept her love and anticipation and her belief that this little life would make it. 

We took Mary and Karl's lead and held the fear at bay and celebrated the hope they had been given that this little girl might have a shot. Many people didn't even know that the baby they were expecting had been dealt such a tough prognosis. That is because we kept up the celebration. We were waiting for a new life...just like any other family.

And Tuesday at lunchtime my brother in law texted me a picture of a cluster of nursing staff lifting a tiny little form into an incubator. My eyes filled with tears. The next text was "she is here and she is breathing on her own".

Rachel Valerie Sieburg

I am an aunt! Rachel is here and all of us love her to pieces. 
At just two pounds and 14 ounces, she might seem fragile and helpless, but I think we all know better. This little girl who might not have been here without faith and hope is already showing us she is ready to take on life with a feisty spirit.

I looked at her last night in her incubator and recognized the visible etching of my sister's face. I see in Rachel the same rosy full lips from Mary's baby pictures. Karl, he's in there too, no question, but I am guided back to a time my childhood memory can't conjure. It's a time I am told of through family stories...a time when a little skipping girl (not even three) ran into a hospital room and presented a tiny rattle to her baby sister. That first gift would be one of many but that little girl never knew how much her baby sister would mean to her then. And certainly that little girl never had visions of another baby, three decades later that would mean just as much. A baby we were so aching to meet...hoping that she could find a way.

According to most translations of the meaning of the name Rachel, it means sheep. I thank God for watching over his little sheep...so we could have her here with us. But to me, her Aunt Leah, this tiny little miracle is a sweet little lamb.

Your mother was a 'amster

In DC with Patrick Bruce Jordan (third from left) and Tom Wahl (far right)

I'm engaged to King Arthur. That's right...some day, some day I shall be Queen! 

No, that's not quite right. But Patrick flew down to Sarasota this week to start rehearsals for Spamalot. It's directed by the incomparable Bruce Jordan who does comedy, farce and hilarity with crowd-pleasing precision.

I am so incredibly proud of Patrick and can't wait to see him in it when I go down there at Thanksgiving time.

Since Patrick and I have been together I've discovered all the heart and soul that goes into in his craft and it's made me appreciate how much dedication goes into the entire spectrum of every actor's life. And if ever there was a production that was tailor-made for my guy, I have to say this one is the pick. I can't wait to see him prance around the stage in full Monty Python glory. 

For every practical and understandable reason, I miss my fiance. Yet I delight each day with Patrick's new stories of his adventures fine tuning the role of King Arthur. Monty Python is simply whimsical non-sensical fun. Though he's more of the straight man in a cast of sillies...the whole world of Spamalot is the ultimate playground for an actor whose comedic chops just totally send me into snickering fits. You must remember, before we ever met in person I laughed my butt off watching him fall and laugh like a hyena on stage.

Last night I was treated to a little behind-the-scenes fun as we chatted on the phone. "Do you feel like reading my lines with me," he asked. My mouth dropped open.

Patrick has never before had me rehearse lines with him and he's always insisted that it was something he's just does better at solo.

But last night I read the role of the 'French Taunter'.

There's nothing quite as silly as reading back and forth to your fiance calling him an 'English bed wetter' and to go 'boil his bottom' under the guise of a script, of course.

Patrick has always laughed at my faux accents. None of them are of the accuracy of a classically trained linguist. But with silly Monthy Python I could almost be passable...maybe. 

I'm gonna try my French taunter out around town perhaps. Or maybe not. I'll leave that to the professionals.

So proud of my guy. If you happen to be in or around Florida the show opens up in 3 weeks. GO SEE it. Yet, I wouldn't wait to buy tickets. According to Patrick the house is selling out fast. 

She lit the way in uncertainty

The flow of tears yesterday was both a celebration and a mourning. Yesterday was the ninth anniversary of my first cancer diagnosis. It's a day I'll never forget.

In the nine years since I was first diagnosed I've felt tears fall for many reasons...but yesterday was a profound mix of gratitude and guilt. Gratitude for so many things...but a sense of profound sadness triggered by someone else's journey's end.

Yesterday I found out that a woman who was a tremendous resource to me during my darkest hours passed away just two weeks ago...from cancer. I didn't even get to say goodbye.

Coleen Jones was a classy woman. Her voice was instant comfort from the very first time her it came on the other end of the line in my call to the Western NY chapter of the Leukemia Lymphoma Society. In 2006 when my whole world felt uprooted and shaken, Coleen provided comfort and hope. She helped guide me through several application processes and was always charming and sweet. I first met her at a support group that I felt totally out of place at - as the only twenty something in a room full of older ladies, golf buddies and retirees. I returned only when I knew Coleen would be there moderating.

Coleen became in many ways so much more than a service provider in my life. Her sincere interest in my life (the one beyond my disease) and her casual banter with that charming chuckle made calls with Coleen a delight.

 In 2007 she nominated me as the Spokesperson for the Rochester Light the Night Walk. She gave me a huge hug when I walked off the stage that night. Our connections didn't end there...when we worked together on a cancer conference for young adults in Rochester in 2010. She told me how much she admired what I was doing in Rochester and never failed to make me feel truly special. I'm grateful that I always told her how much I appreciated her in return. I always reminded her how much of a difference she made to me during those days of complete chaos.

Remembering my cancerversary yesterday...I thought of her. I meant to find a way to call her yesterday- to schedule that lunch we'd meant to set up. Instead I found her obituary.

A true hero to so many cancer patients, Coleen herself became a patient when she was diagnosed with breast cancer. Though she made it through...her disease returned. I wish I could say that I learned of her recurrence from that obituary, but I didn't. I learned of it after I called her work number a year ago, only to find she had resigned and soon after learned the reason why.

I had her cell number and texted her a message of support. We exchanged a few lines and I made a plan to set up a lunch the next time I was near Buffalo. But time got away. It never seemed to be the right time. Perhaps it's too short notice for her, I thought. Yesterday I felt a lump of regret in my throat for all that procrastinating.

Coleen was special to so many. I can be sure that I'm not the only patient who felt the golden touch of her care and kindness. In the past nine years I have survived two different cancers. That was hard.

Saying goodbye to such wonderful people I've met on this journey is harder.

There are challenging bits of knowledge in the bright unfiltered light of survivorship. It's where the recognition of life's fragility meets our capacity to acknowledge it head on. It's a shattered faith in happy endings. Some run from it. It's easy to see why many desperately try to avoid the reminders of this finite and bitter reality. Damn right it's hard.

Yet people like Coleen should not be forgotten. And so if remembering her means knowing a little bit of life's unfairness... I chose to remember. Thank you Coleen.

Someone to watch over me

I've been up all night hacking with a cough that won't let me sleep solidly through the night. And it is these times, the early morning hours when nothing can settle me back in that I am forced into the reminder of the toughest early morning hours throughout my life. 

I've been having a lot of nightmares this week because of this. 

I have to settle back and remind myself that life has changed. Sick Leah is no more. But my subconscious is playing in the background while my body is fighting this really super un-fun bug.  

When you've spent as much time as I have in life not having a 'well body' it takes some doing to just know fully that all will be alright and somehow the immune system will do it's job. 

Others in healthy bodies just don't take the time to contemplate or easily realize what that's like. When I meet young people struggling with the after affects of cancer- not the disease itself- but the constant visits to the doctor to fix another part that's wrong... they have shared with me the things that bug them.

The comments and the 'sound advice' that others lob on them are exactly the same things others have said to me for years. 

"Can't you just find another doctor?"

"But aren't you done with all this?"

"You really should try doing more positive thinking..."

I knew Patrick was the man for me the first weekend I visited him in Queens when I got sick. All the sudden dizzy nauseous. And not a drink on me. I was terrified to be sick (any kind of sick) in front of someone I was dating. I had too many occasions of episodic dating that ended badly because of this. Pre-cancer and pre-advocate days, I had learned in some ways to hide my ill self from any guy I dated.

It was miraculous to me that night...Patrick seemed unfazed. He simply cuddled beside me on the couch and sat with me - no judgement, no prying laundry list of questions. He just held my hand. I had never, in all my life, known this kind of feeling. 

A few months after this I learned what it was to play the other side of that role. While in Rochester readying for a reading he did at Geva he developed a horrible virus that sent him to urgent care. We spent our long weekend together on the couch...and I nursed him with herbs and potions I'd dabbled with through the years from the 'help-me-I'm sick' section of Lori's Natural Foods. He made it through his reading and collapsed back on the couch with me afterwards.

I realized for the first time the reciprocity of caregiving...and the importance of a lack of judgement. To just be there...and to be present. 

Last night when I was just feeling awful it was his voice on the other end of the line soothing me. Wishing he were there in person but doing everything he could to make me smile. Because of his work we spend a lot of time apart, but he is still my guardian and caregiver from afar. He sings anything I request. Lullabyes seem cheesy I know but they have been a cornerstone in a long distance relationship that works.

I never realized how good it would feel to be 'looked after'. 

Someone to watch over me.

And guess what?

Exactly a year from today I'm going to marry this guy. 

The view from here

I do not know one more thing in life more visually awe-inspiring than being somewhere high and looking down at the earth you commonly tread. I'm no expert at getting there by any means. And it's a funny thing for someone like me to appreciate because of my lifelong dance with a fear of heights. I used to say "I'm not afraid of the height, just the falling from it."

Our TLC-ers look down at the glory of nature

This weekend getting up that supposedly 'easy climb' to the top of Peaked Mountain was no walk in the park. Our six TLC teens had to wrestle with more than a few roadblocks (what road?) as we meandered our way up the two mile terrain (Rick, our fearless guide's 'rough estimate was a blessing') and encounter a few snags along the way. Yet, of all the breathless moments and obstacles of the trek, we were reminded that obstacles come in so many other forms. Our obstacles, our fears - those that we consider so paralyzing may seem pale in comparison for another enduring something far more difficult. 
This is perspective.

Joining us on the journey up Peaked Mountain was Scott, outreach coordinator for Double H Ranch (a Paul Newman camp) and his girlfriend Kati. Scott was diagnosed with cancer as a baby and lost his leg before he ever learned to walk on two. Yet, here he was climbing a mountain with us. As much as a person with two legs can understand, I knew the difficulty added for Scott to an already challenging pursuit. His prosthetic with all of its high-tech capability can not grip, steady, push or turn as easily as a real leg.

Adam, Kati, Scott and Rick

Despite many difficulties, several uncomfortable maneuvers and a frustrating fall Scott made it up that mountain with us. Kati was his right hand woman and the two worked like a team.

Scott shared something with us that has stuck with me. When he is mistaken for a veteran or a wounded warrior he is thanked for his service and praised for his courage. However, when he inevitably corrects the mistaken praiser to the fact he lost his leg to cancer he is often greeted with uncomfortable silence. "Oh" is all they can often say. It's sad that cancer can still be to some such a taboo.

We still live in a world that is for the most part populated by people who do not have to fully test their own adversity. This is a good thing. But it is not a good thing if kindness and appreciation fail to accompany those lacking in the hard knocks knowledge. Those who do not walk the path should at least regard the journey of another they encounter with respect. 

 'Be kind; for everyone you meet is fighting a hard battle.'

What is it that has brought such wonderful people to my life? Is it their adversity alone? I don't think so. It is merely the adversity that sharpens the character that already existed. And then the transformation that comes from working through the adversity...that brings all of their character into a brilliant focus.

Losing hair. Losing a year of high school. Losing a leg. Losing a child.

What is it that makes the most difficult things in life tools and motivators?
Perhaps it's because the other option is to slide back-  to become less than your full self? That is a risk those I know are unwilling to take. 

Saying 'okay, you win cancer' is just a phrase we don't say. Those words will shut out life. And even a minute of wallowing in the ugliness shuts out a minute of the beauty of life. And it is so beautiful...and wonderful. 

And fear...well, yes that's just a part of the whole experience. You don't survive cancer or look upon a loved one enduring it without being afraid. I don't care who you are. But fear is something we must live with and manage to keep on going. 

So, did I mention that after we got to the top of that mountain there was just one more thing to do before descending? A 60 foot rappelling exercise- optional. Five of our six teens chose to do it.

What are our fears compared to what we can become if we tread a little outside of them? What become of our reasons for turning away when we view the challenges and victories of another who has waged them?

And what beauty lies in the discovery of all of it? Sharing, learning and growing stronger from our fears.

You learn early on that the world is imperfect. But some of us learn earlier than others...and perhaps some have to grow their courage by necessity in order to climb above life's imperfection. Climb above to find something else. Beauty.

I have not had the joy of being a parent so perhaps I have no right to own the particular pride I have for these young people. But I am so very proud of them. I am so very lucky to do what I do and I am lucky to be one small part of their journey. 

And I do all of this alongside a leader who inspires me with her courage. She did something I could not do this day in particular. Go Lauren!

The message in all this? Life really is beautiful. It's not always a pretty view but when it is...you have to stop and savor it. I pinch myself that I get to share this with all of you.

Reunited with my backpack

I found it this morning- deep down at the bottom of my closet. Crumpled. Forgotten. The orange and grey hikers backpack I had scavenged for and finally purchased from an outdoor thrift shop in Boulder! 

This backpack had been my constant companion for that summer in Colorado.

Tomorrow morning we take our teens to the Adirondacks for a trip of a lifetime and I am remembering the last time I wore that favorite bargain backpack. It's hard to believe that it's been two years since I was in so much fresh air.

When I took that road trip out to Colorado my mom was convinced I would become some headline on the 11 o'clock news- especially she learned that I was hiking a lot of places by myself. Public, marked hiking trails mom...at full daylight with a safety whistle. Gosh, two years later I still have to clarify that on my blog.

Anyway, as I pack for this trip and fill up the orange REI I am getting wistful. I am also getting butterflies. Can you believe it? So many things fall out of practice when you get settled into a different track in life...but those butterflies are really about excitement.
I'm excited to get back to fresh air and put miles between myself and the familiar...even if just for two days. I'm even more excited for all of this to happen to our teens- the wonder, the fear, the release of that fear, the enjoyment, the exhilaration and then...even the sadness at going home - all of it. 

Tomorrow, we do this! We begin TLC's greatest adventure headed up by adventure expert Rick French. A Peak Experience, if you will. We load 'em up, we head 'em out...and live our best lives...now.

Thank you matters

Ever really stop and think about who you have said thank you today? The pressures of our modern society can totally rob of of us multiple opportunities to make someone feel special. Think about how many times you are in and out of stores each day? Think about how many times you actually say thank you for the service you receive? Do you take the time before you run out of the store/restaurant/government facility?

Not a standard vacant muttering because it's just what you say. But a thank you and a conscious and genuine one?

Think about the person who waved you ahead at a crossing even though it was there turn to go.DO you smile? Do you wave?

I'm not saying overdo it. Don't become their best friend, but give a person the time to feel appreciated.Often negative exchanges in our world happen from inpatience. Consider traffic. I need not say more.

If you have a smart phone put it down when you're in line at the grocery store and look the cashier in the eye.
We aren't paying attention to the world around us as a whole. For the most part modern society works pretty well. Yet with a never-ending trail of people receiving demands and people trying to fill them...there are so many interactions. Many of them are halting, and many of them are filled with only lists, only demands and no thank yous. 

What is the difference when people have critical awareness about others? What if the constant monologue going on inside your head took a break long enough to look at the other person and give them something positve- even if you feel the pull of your own frustrations. 

A few months ago I was reading an excerpt from a graduation speech by David Foster Wallace. He talked about the imprisonment we are in with daily life and routines. It was called 'This is Water'. It went around like wild-fire on Youtube when it was condensed by a fan and made into a visually appealing video. It has since been yanked. But the point was that we are unconsciously creating a status quo of 'me' by listening only to our own voice inside our head. 

Stopping to consider the other person in every daily exchange we have is hard. It goes against the grain of what's going on around us.  Positive exchanges are applauded in our society but not reinforced by daily routines. Most people think they do enough stopping, but they don't. They go back to their default setting which continues the 'dialogue of me' which consists of what do I need. But what if we asked ourselves mentally what another person needs?

Selfishness is speaking louder than selflessness in our society. I have been guilty of being inpatient because of the stress I carry with me. I have been guilty of tuning out and sliding back into the own hum of my mental dialogue. But the minute I have slowed down, it's brought me back to center. All of us need constant reminders. Sometimes the only person to remind us is ourselves...and that involves changing the way we think and operate. Changing our 'default setting'.

The choice of how you think is up to you. Wallace described conscious and 'in the present' exchanges as being life altering. What if we looked at thank you as more than just platitude but something that had actual human value? That it might just produce positive change?

Upon receiving this link to a Ted Talk link...I realized it's saying essentially saying in a simpler way than Wallace. It's giving us an action piece that may seem so basic. But it's simplicity is it's beauty.

 Be present for another person and here is why thank you matters.

http://www.ted.com/talks/laura_trice_suggests_we_all_say_thank_you.html