A feisty patient

Dear Little Rachel,

Some day when you are older I am going to tell you how brave your mama is. I am going to tell you how strong I've had to see her be when she didn't think it was in her. I know so clearly that you are her daughter because 'feisty' is just what you are. In all of nature's unfairness - to be given the hand you were dealt before your tiny little lungs drew breath - you somehow found a way to be here with us. And that I know is not a universal quirk - it is a solid and steady indomitable will...just like your mama. 

Some day when you are older I will tell you how I watched your mama stay calm and peaceful for you as you turned from perky pink to clamshell grey, to a most horrible oyster blue in her arms. Your mama listened calmly to Lisa, the nurse as she talked her through how to coax your body back and nudge you back into the breath your brain and body are too young to get control of yet. There was palpable fear in the room and tears were streaming down your mama's face but she was focused on keeping herself calm to let you know you would be okay. 

Some day I hope I can tell you that your Mama and Daddy are two of the bravest parents I know...Here it is - only day 22 on earth- they have already had to dig down deep into their hearts and souls for you. Long before you made your entrance they had to summon up some courage that knew no carved-out path before them. When the rest of the world told them you should not or could not be here - they believed in miracles. But little Rachel it is you who are showing them the way. I watched you endure these moments yesterday- in one long untaken breath - a whisper of agony for us all in the room. Agony for your mom and I - and even for your very wise nurse Lisa - who told me as we sat in the chairs together talking side by side that she has hard moments in her job like these. It touches her soul to watch this bewildering terror of moms who see their children fight for these breaths.

 I watched all of this that happened with you and saw you show US all how to breathe calm again. How, you say?...You made us laugh when we needed to take that breath of exhale again.Ten minutes after you stunned us to tears and pindrop silence, you stretched out like a pin-up girl in your crib and smiled. And minutes after your next terrifying 'event' you blew a giant bubble. I was able to take a picture...and I will show you. And oh, yeah your feeding tube upgrade - that was all you - 'removed by patient.' Feisty indeed.

Yes, little Rachel you are tough and some day I am going to tell you when you can really understand. Some day I am going to tell you how as scary as that was for me today, to see you and your mama endure these unfathomable moments...you showed me how to be even braver than I thought I could be. And as we sat together quiet in that chair - just you and I- and a lot of beeping noises, I felt my heart grow too. 

I love you, my niece, little Rachel and you don't know this, but you remind me of someone I know and love very much. She's the person who held my hand when I needed it so many times. So I wanted to hold hers today. And yours, little Rachel.

You are your mother's daughter.

Love Auntie Leah

A 'good journey' of promise

There is nothing to put age on you like returning to the former stomping grounds of your college campus...and at last, realize you can no longer pass - even by a longshot- for an undergrad student. Trust me, I tried yesterday- sneaking back to my old dorm. 
Now I am an officially seen as a card-carrying alum- might as well face it. With all affection and reverence, of course.

Yesterday as I gave the keynote speech at the 2014 Woman of Promise awards, I realized how far I have come since the time I sat as a petrified freshman in that same auditorium in which I was now taking the podium. 

I looked up in the audience and saw "Denny", the professor who changed my life- forcing me to stop, plow forward and believe a four year college education was not only doable, but within my reach. He had pulled my transcript for our first meeting scratched his chin and said "18 credit hours...18 credit hours," he repeated. "18 credit hours of college level work in high school...That's impressive." 

 For a young woman whose 'then-life' had been filled with nothing but chronic illness and high school teachers who graded and returned my assignments with little other than casual obligation, someone who had been written me off as the 'sick-kid' or the school phobic, this was a pivotal and monumental idea. Someone could be impressed by me?
The kid who was perhaps doomed to a life of scrambling just to strive for mediocrity and normalcy. How could I ever impress anyone? 

I was happily and joyously wrong.

Whether Denny's exact four words were "I-believe-in-you" or not...it was the clear and solid message to an 18-year-old who had spent all but brief flashes of her high school career between being bed-ridden or wandering through a constant fog of cognitive dysfunction from an illness no-one really could demystify.

I kept looking at him, remembering where I was then...and how long it took me to get from there (knees knocking in a freshman 101 class) to delivering a keynote before the journalism school. 

I told the crowd of students that those four words changed my world. They did. 

Though Denny wasn't the only voice at St. Bonaventure who told me I could do it...his was the most constant. He was my advisor. His voice was a stern but loving echo in that time, one fraught with fear and frequent trips home to recover from pneumonia or bugs I picked up at school and I couldn't fight off like the 'average', 'normal' and 'healthy' kids who took for granted their God-given immune systems and happily washed the weekend down with shots... simply exercising a rite of passage. I didn't have the ability to exercise the freedoms of casual abandon because I was fighting to keep my grasp on as close to normal of a college experience as possible. Denny knew if I was out of class it was not because I was recovering from a hangover. He knew my story. He knew I would always get my work done...or die trying.

The woman for whom this Woman of Promise award is named, Dr. Mary Hamilton, also held a number of my fondest memories at St. Bonaventure. During my senior year Dr. Hamilton was my senior capstone advisor- in the dark ages when the 'hottest technology' for storing large filed documents existed on giant drives you could barely fit in your backpack - and that last semester of school I lost my entire senior capstone project. I had already completed most of it when the drive malfunctioned and warped the entire document, rendering it utterly useless.

My project was a 40 page retrospective yearbook on the history of the Francis E. Kelley Oxford program of which I had just returned from as a student that previous summer. I had all but one of my articles in hard copy so that was easily retyped but the design work and the hours in the lab and designing and finagling were gone. Scanned pictures- gone. Hours of work and design - lost. 

Dr Hamilton was my advisor for this project and she encouraged me as I rebuilt the document. Doing everything but sleeping in the yearbook office using its high-end software program- the one I could not afford to purchase for my dorm computer. I began to wish I had taken the research paper route instead. That project went through numerous and careful revisions, but when I put that finished yearbook on Dr. Hamilton's desk- she smiled from ear to ear. 

These are the people you never forget. These were my rainbows in the clouds. 

When you remember the people in your life who made you better, you remember not their words, but how they made you feel. And those feelings are transformative. 
They can help you wade through the thick waters of disappointment or disillusionment when someone knocks you down. Perhaps like many of us, I've had my fair share of those who have played this other unfortunate role in my life. Yet, coming back to campus and having a few of these special heroes embrace me was like a warm blanket wrapped tightly around my shoulders.

I had the good fortune to help present the Dr. Mary Hamilton Woman of Promise award (alongside Dr. Hamilton) to a very special young woman named Makeda Loney. Remember that name because she is going to do incredible things- I know this.

As she climbed the stairs to the stage I couldn't help but hug her before even going in for a handshake. I had read her story and in between the lines of her biography I sorted out the story of someone who much like me had challenges to overcome when she first stepped on campus. No doubt, she fought through them in a way that led her to be wholly worthy of being honored yesterday. 

"Are you nervous," I asked. 
"YES", Makeda answered back without hesitation.

As she visibly fought through the nerves of preparing her acceptance speech my whole life came full-circle with the sound of Patrick's voice. My fiance who had been quietly smiling and playing the supportive role all day interjected with a smile.

"Makeda, can I give you some advice?," he said
"Yes," Makeda answered.
"When you are talking up there...when you are speaking and you see our faces...you just have to know that everyone in that audience is on your side."

This journalism major is also steps away from being a theater minor. Patrick, an actor was just the person to give these words of advice. 

I smiled with pride. Full circle indeed. Here was my husband to be, the man who had successfully conquered his own childhood fears of stage fright, giving this special young lady some words of encouragement. 

This is why life is good. This is why you should never give up. We all have moments where we doubt ourselves and our abilities...we all have moments where someone else judges us unfairly and steals our joy. Yet, we have to keep on keepin' on and looking for those rainbows in the clouds along the way. When we find them- we have to work extra hard to make those 'I-believe-in-you' voices louder louder than those voices that discouraged us.

Yet, when we are able to take that power and give it back to someone else...then we have become aware of the fullness of our humanity. It is the power of life. It is the power of love. It is the power of promise.

With Makeda, truly a woman of promise

I told Makeda in my speech that there are 3 things to keep in mind about being a woman of promise. Perspective, perseverance and purpose. 

Perspective- to see where she started, and where she is now.

Perseverance- to see how she can keep going in tough times.

Purpose- to know who she is fully and know what drives her.

Those are things we can all remember when we believe in our own promise. Life will never ever be easy - but it sure will be worth it.

Zen with sneakers

In spring 2010

I have a confession. Without realizing it over the last year I've slipped into somewhat of a fitness slump.

By the time Patrick came home a month ago and nudged me to accompany him on visits to the gym, I realized exercise was the thing I had been chopping off my list consistently when there was any time crunch. Fatigue has also played a role in this...

With the way my life is set up now, I didn't really even realize how slowly and yet dramatically this pulling away from exercise has impacted me.

There are lots of ways to find spirituality. I'm not speaking about God necessarily. I don't do any of my praying during workouts. I'm speaking about a sense of calm and serenity- and an ease that everything is going to be okay. Even if it isn't, everything will be okay. A sense that somehow the things you have no control over don't have a hold on you and instead you can hold on them at bay. A sense that you can  channel any negative messages or fears and turn them around.

Everyone needs a place to release and re-invite that message that 'everything will be okay'. That place for me over the last month has oddly enough been the gym.

For the last few weeks when I'm sweating it out on the eliptical, it's the one place I can't be reached on the phone or feel I need to attend to something else. I zone out completely and let the pure rush of solitude (in a crowded gym) wash over me. Here I have a very singular purpose and here there are
no interruptions.

The spin class with the amazing Marti has become my zen. And Patrick's too. Even though we're pedaling beside each other in class - the experience is totally our own. Yesterday I entered the class carrying many worries in with me, but by the end of class they were unburdened and I felt that comforting hum that is peace.

In no way am I advocating abandoning religion for a gym membership.  I just think it's time I regain a little sweat equity in the work that is just on me.

Isn't she lovely?