My Mommy had a Double Lung Transplant

2022-01-08T14:54:00.000-08:00

Eighteen years ago I tried to sleep. My body called out for it as did my weary mind. How do I explain every bone in my body aching as every breath I took hit my lungs like ice shooting out from frozen eaves.

I was fighting to live another day. The daylight would soon come and I would deliver my babies. It was not optimal but it what what we had at our arsenal. My body was at war with itself. Everything I had feared about my Cystic Fibrosis was being realized. My twin pregnancy was in my 26th week and going in such a downward trend no one was sure what would happen. I was fighting for every drop of oxygen. Any breath I took was shallow and produced such an insidious cough that it seemed to shake the walls around me.

It was a night unlike any other yet like the previous ones of that week. Counting the days, hours and minutes I could keep my babies and myself alive. I had my father and husband alternating to sleep in my hospital room because my anxiety was at such an all-time high. When you fight for breath, it creates anxiety and that anxiety makes you not breath which is the very thing you need. It is a cycle that is like a nightmare without ending.

Sometimes when i find myself out of breath I think about those moments yet nothing I experience now is like that feeling of fighting tooth and nail to actually breath. Post lung transplant I actually catch my breath with barely a glitch in time. Anxiety, though, is another matter. The reasons may have changed why I experience anxiousness at times but the intensity has not. Raising these two wonderful gifts comes with so much euphorbia yet so many challenges. I won't lie either, keeping my health issues stable is a tight balancing rope with one wrong slip on a thin wire and I could be set back for months. Living through the COVID nonsense doesn't help either as I constantly remind myself #faithoverfear.

Why write this? Why write any of this in general. Well.

writing to me is a form of stress relief. I don't like to burden people with my problems yet I am human and need to open that jar up and release them.

I also tell these memories not to impress anyone but maybe just maybe I can impress upon someone a little bit of empathy for others who also struggle. Maybe it's a fishing line for those struggling to admit what is wrong, to say it's OK. We all are living the human condition. We did not come with a book or manual. We came with our forms of communications and this is mine for you. We can do this. THe sun always rises in the morning. Even if it is cloudy.

Don't Stop Believing

2018-05-29T06:39:00.004-07:00

What an amazing reason to celebrate. I woke up today and it was my 12 year anniversary of my double lung transplant. I woke up remembering all the events of that fateful day 12 years ago and I can honestly say it was one of the top days of my life. So many days of breathing free have followed that day when I received the gift of life. Along with those days have been moments of laughter, fun, sadness and tears. In other words: I have been living!

I haven't written my thoughts down here in a while. It isn't as if I haven't had those thoughts and feelings. Living life just took over. As my mother used to tell me when I donated so much free time to different CF fundraisers: You have the disease, you don't need to do all that running around for it! In her infinite wisdom she was right. In those first few years post transplant, I felt the need to go around and tell my story in hopes of bringing awareness about organ donation. Lets face it, I had young twins at the time and I was a stay at home mom so those talks were also a bit of getting out and having some 'Mommy time'.

The last few years have brought about more normalizing life events. I got a job, my twins grew into some independence and I found my way back to my passion for theatre directing some shows at my childrens' school. My time became limited in what I could do for Gift of Life and my speaking engagements. Don't get me wrong, I never miss an opportunity to spread the word about organ donation but I the fact that I was living a healthy spoke volumes more to the true testament of how organ donation saved my life.

I thought about that night/day I received my transplant and what would I tell myself about life post transplant. I would say that no matter what the ride is full of ups and downs. I would say how little things in the beginning will mean the world to you: reading books to your children, carrying them up to bed, taking them on playdates, trips to store and to the shore. Bumps in the road can threaten to take away your stamina and confidence. You will encounter challenges in your health but that will mean you are alive to face them. You will laugh with your family and friends and even strangers and not once will you feel need to cough or lose your breath. You will ride roller coasters with your son at Disney and go camping with your daughter. You will turn 40 and along with that age will come a wisdom that can only grow. People will call you an inspiration but that title will never feel right. You will learn that being called a survivor, a fighter, and a warrior are titles you like better. Most of all, you will find that there are never the right words to say or thank the family who gave you this chance at life again. And that will be ok. You will live your life and always be grateful for the gift of life.

You will paddle on the river alongside this clown.

Blown Away

2017-10-02T18:03:00.002-07:00

"Yours is the loudest breath I hear." And with that I was reduced to tears. Neither event was a negative one. It was in fact the most life affirming statement I heard in a while.

Let me explain. I was in yoga class, and it was the last set of our postures called Kapalbhati, or blowing in firm pose. My best explanation of it is to continuously exhale like you are blowing out candles on a birthday cake. You are effectively pushing out every ounce of carbon dioxide and replacing it with life giving oxygen. Now for me, an experienced breather of every kind, I particularly like this one. Not just for the fact it means class is almost over, but it reminds me of a time when I couldn't expel or inhale my breath beyond a second. As I gaze into the mirror I visualize the time when my body couldn't rid itself of carbon dioxide and a tank of oxygen had to provide me with any air I could manage to intake. After almost 3 years of Bikram Yoga, the breathing exercises at the beginning of class and the end are truly the ones that amaze me in almost every class. I look at my lungs expanding and deflating just how they are meant to do. It blows me away every time....pun totally intended!

Recently, school began and with it I was back at work in an environment I enjoy very much, but demanded more time and energy then ever before. I neglected my yoga practice after a very productive summer of it. This past Saturday I went to my regular practice, and I had quite a few aha moments that related to some difficult situations I was personally facing. I had a few out of body experiences during my practice where I felt I could connect so deeply my mind with my body it was crazy! I love that moment where you just get it. And, I felt like I was understanding my body on such a deeper level; it had everything to do with the balance between what you think and what you become.

Every yoga practice is different because we are so different one day to the next. Our aging body, the weather or just how we slept can be the difference between reaching your toes and barely bending over. In today's class I caught glimpse of my latest post lung transplant scars from skin cancer. These newest ones are on my back and they are very large. It was no fun getting them, and it is no fun looking at yet more scars on my body. It takes a while to wrap you head around your body having scars, and to realize its a price I pay to be alive, sometimes doesn't ease the pain. In my practice though, I was hit with the thought of "Bring them on, is that all you got?" It was a reversal of the almost victim mentality I was feeling over this latest skin insult. I saw myself as Tony Montana in "Scarface" when at movie's end he is taking bullet upon bullet and not falling dead*. It may be a insane reference to an evener insaner movie, but you all know what I mean? I felt on top of the world and no one was going to take me down. Not even a few ~~lost count at 50~~ scars.

Now, I am kicking butt and taking names as they say and the class is in our last posture (as explained above, the breathing one) and the teacher says to me"yours is the loudest breath I hear" in a totally positive, happy way. Luckily, we lay down right after for Savasana or corpse pose, because those tears were running down my sweaty, hot cheeks. In that moment, all those breaths meant something. They meant the world to me, because I remember what its like to not have them. I not only have them, I embraced them and others did too!

One, if not the most common question I get about transplant life is : "Do you know your donor or their family." My answer for 11 years has been "no, but, I don't need to know them physically, I know them spiritually." Some people don't understand but I do and that's what matters. I felt my donor's spirit in that class today. He or she was giving me the breath, just as they had given me the lungs to use that breath. If it takes more scars to continue feeling their spirit within me, guiding me then, BRING THEM ON!

*the movie Scarface and it's many references to drug use does in no way relate to me or my belief system. However, who doesn't love that scene where Tony is King of the World, more or less.

patience

2017-06-06T19:03:00.003-07:00

Patience. As Guns and Roses sings "all we need is a little patience." Yes, I really just quoted G&R, but even a heavy metal rock band needs a little sprinkle of that every once in a while. It is for me, one of those life long-going to the grave-still learning to have some- qualities I strive for daily. I guess it comes with the territory of being a type A sort. Even now, writing this blog. I know what I want to say, but I am getting impatient with the process.

It was in my yoga class the other day where the word was brought to my attention. This wonderful yoga instructor was helping us meditate while in our 26 postures. That is one of the more difficult things, trying to still the mind while the body is going through extreme exertion in agonizing heat. She brought the 5 words that we needed to help us along the way. I could remember all but 1 of them. So, for next 20 minutes left of class, I meditated on those words: self control, determination, discipline, and faith. However, another nugget of my brain was struggling to recall that 5th word. It really bothered me that I couldn't remember it, when I usually have a pretty photogenic memory.

After class, I thanked my yoga teacher for such a wonderful class, and asked her what that 5th virtue was. Patience she said, the word was patience. It was a lightening bolt in my mind, recalling the word and connecting the dots of why I mentally blocked it. It is an issue with me, patience and my lack of it, so often. It really annoys me that I struggle with this trait. What I struggle with though is lack of patience with myself. I think I should have all the patience in the world ,and when I don't ,I get even more impatient with myself! It is a vicious circle. However, the hot room in yoga is the perfect place to practice that word and all it's connotations. I often find myself recognizing the virtues and qualities of faith, empowerment, strength, control, and determination, but patience is a hard one to incorporate into my meditation and daily life.

Slow down, Two words I heard in so many areas of my life. My father screamed those words when I was learning to drive (and still 30 years later). My acting coaches had to remind me time and time again that taking my time within a scene or a monologue was more beneficial then rushing it. My mothering skills sometimes lack the patience to stop and actually teach my children how or why something is the way it is and not get so frustrated that they just can't read my mind! Ever ask a 13 year old boy to load the dishwasher?!? AGGGGHHHH my nerves!

There was one period in my life where I did have the best use of patience, probably, ever in my life. That was when I was sick. I had to slow down and be patient or else my chest would tighten and it would be even harder to breathe. I had to relearn how to walk and talk and eat while fighting for each sip of air I could grasp. The waves of nausea from all that coughing and swallowing of infected mucus were enough to make me want to jump out of my skin. But, the more I became impatient, the worse my condition would get and a vicious cycle usually of coughing would continue.

Perhaps the most patience was most useful was when I waited on the list for a pair of lungs. I truly believe God helped me face that wait with faith more then anything. He also calmed my stress and fear of it all. Anxiety could cause the most destructive thought patterns and it could have ultimately destroyed me. Yet, how could I not be anxious between suffocating from lack of air and then the thoughts of a major surgery where they would crack my sternum open and remove my heart and lungs. Likewise, the last thing I ever wanted to do was think of someone dying so I could live. I had to make very distinct distinctions in my mind: Someone would die. Someone would have made the decision (or their family did) to be an organ donor. I was the person who was first on the list, sick to the point of dying and in need of new lungs and the best match for that person. That took incredible mental tenacity to just get that to sink in my brain. The patience part was learning it was all in God's time. I had to trust the medical process and more importantly trust the spiritual process that it would happen as it was meant to happen. I envisioned the transplant coordinator asking the family for permission to donate, and in that process, divine intervention would make it a reality for me. The courage and love that family had to agree to this donation process was beyond my comprehension. The patience that coordinator had to have, to allow the time needed out of respect for the loved one (donor), but in a timely fashion for it to work out for the recipient (me).

It seems to me, I was transplanted and I jumped off that table and rushed back into a life waiting for me to live. Yet, I know I took something away from my experience that maybe I don't use on a daily basis but took with me from my time spent as a sick person. The empathy you develop after such experiences with hospitals, medical personal, the transplant process is a unique one. I didn't just learn to sympathize with sick people. I learned how much it truly sucked to not have any control over your body and its worsening state. I learned my own type of patience. I did have it and use it when it was most useful. I may still rush to yoga class and curse the whole way because of the traffic or moronic drivers. Yet, when I get to yoga class, I can incorporate whatever patience I have left that day into my determination and faith that I am empowering myself every time I take those deep breaths and watch my lungs work with me instead of against me.

PFTS post tx take so much less patience

Exit laughing

2017-04-07T17:01:00.003-07:00

What would say if I told you I was not afraid of dying? Some of you may think I am nuts. Those of you who truly know me, know that I AM a little loco. But honestly, death is a scary taboo topic of conversation. I get it, I really do. I grew up with older then usual parents, and had an ungodly fear of my Mom being dead every morning I woke up. Self reflection has taught me that deep seated terror was actually somehow transferred from her fearing MY DEATH. I get it. She had suffered great losses early on in life. Her mom and dad both passed when she was young and she was married and a mother herself losing her first born son before she turned 20. I have no idea how she had the courage to even live another day after the deaths of children, let alone raise her last one with same deadly disease the others had.

Yet, for all those losses, she still managed to have a sense of humor about death. Somehow, that humor made death a lot less scary for me. She used to joke with my brother in law that he had to bury her with a cold six pack of Bud, you know, "I'm gonna get thirsty!". Once, in her new home she was hanging these painted murals of my deceased brother and sister. She went to hang my graduation picture next to theirs and I yelled out "No, don't put me on the death wall!" Her greatest joke and in a way last gift was a day or two before she passed. She died on October 30, so this was already that spooky Halloween season. My sister Patti and I ran to get lunch, and upon returning to my Mom's ICU room, she was asleep. Now, we at this point knew death was probably imminent so to walk into her room, and she was as still as could be, eyes closed , we were understandably, a little scared. We walked up to either side of her bed, and whispered to each other "is she breathing?" when lo and behold she pops open her eyes, and says "BOO" scaring the crap out of us!

Like most sad things in life, you think you are never going to smile or even laugh at the moment or situation you are experiencing. It is the part where people say, after you lose a loved one "it will be OK". The death of a loved one is never OK, but time does heal a little of the pain, and you can laugh at those moments while still having the dearest respect in every way possible. Since death is a part of life and life is, to me, laughter through the tears, you can see how it can't be that scary. Faith in the wonderful afterlife with God, and all my past loved ones solidifies my belief in eternal happiness. Of course, I fear the grief of my loved ones more then anything, and don't worry, I still have a lot of life to live. But it reassures me to know, one day, in the midst of their sorrow, they will laugh at a lot of things we shared together.

Number one rule of show business:
Always leave them laughing😆

Life

2017-02-21T18:46:00.005-08:00

Life. A subject often spoken about, both the beginning and the end of it, but seldom is it understood. That tricky middle of it is what can lead to much confusion and despair. No doubt untimely, tragic deaths are just as much unbelievable let along sensible. Yet, the eerie truth remains death is dead. Period. End of subject. Not much use trying to argue with a dead person, for you won't get anywhere, except maybe kicked out of a cemetery.

Life. That era of time I have embarked on known as MIDDLE AGE. I don't care how you slice it: 40 is the new 30 or life begins after 50, as far as demographics show us, middle age is right between birth and what is believed to be the average death age. I think a lot about death, and not just because I am in the middle age bracket, or because I am a double lung recipient living on what some believe is borrowed time. I have a lost a lot of people I loved very deeply and miss so bad it hurts. For a woman my age, I have known a lot of younger people who have died. Cystic Fibrosis claimed so many of them especially the young ones....Sarah, Elizabeth, Larry, Beth, Cecilia, Johnnie, Shana, Missy, Dottie....some I can't remember a name but will never forget their face. They were CF warriors who never made it to middle age like I have been lucky to see...40, 41, 42.... Tragic drunk driving lead to another set of young friends and a a few more passed from a horrific flagpole accident at my grade school when I was in 7th grade....Lori, Hope, Maureen, Eileen. Yes, death is something I have become familiar with at too young an age.

Life. Life comes with its own punctuation mark. Yes, sometimes a question mark or exclamation point are more then appropriate. Most days are a simple period. However, I see life as a series of semi colons. A semi colon means there is more to add after one sentence, another thought or occurrence. How many times in our own lives has it seemed the end, either literally or figuratively, yet life moves us along to another leg of our journey. A next card to be played or another lemon to be made sweeter with some sugar. My own life has seen its share of semi colons. I have learned along they way that no one event, good or bad, defines me, but merely moves me onto the next chapter in my own book of life.

Life. The very touch of it in our skin. The feelings that never leave up even after our loved ones have. Life can make you or break you some say. With what can we even begin to compare life and all its exhilaration? Many a poet have tried. A roller coaster, full of high climbs and steep drops, scaring the crap out of us one minute but leaving us breathless and full of laughs? I guess it depends on how you look at it. I choose the life that I have, even in spite of the downward drops in faith and confidence. Without those lows, how would I ever enjoy the top of the hill where I can find laughs, courage and a hope so strong that it takes my breath away?

Hershey Park August 2005

A breathless Mommy; Mommy's breathtaking babies.

snapshots

2017-01-08T18:48:00.003-08:00

I have a love/hate relationship with pictures. And it is just not because they chronicle every new line on my face. I love looking at them and remembering such happy times and people. I hate looking at them and remembering times ago with people who are no longer here. I don't really hate them, it is more of a melancholy ache I feel as I look over them. Especially the photos of my babies

I had this idea to make a college or a timeline of their pictures for their 13th birthday. I started the project so many times and had to stop because I would get so overwhelmed with joy, love, happiness and nostalgia for the baby, toddler, preschool and early school year memories. I felt just like my mom who often found it difficult to sort through boxes of old photos without shedding a tear or two.

I finally finished my timeline photos and hung the pictures on a string across our porch. I had chose 3 pictures of each year from birth up to present day. One picture of each of them alone (twins need to have their individuality) and of course one of them together. A lot of the early year photos proved they really did like each other. They were hugging, snuggling, and basically having a ball with their best twin for life.

After I hung the pictures, I stood back and looked at the many pictures documenting their lives. And something occurred to me. There were many more pictures of my twins healthy, walking, eating and just being Paul and Sarah and only a couple with the early preemie years of oxygen tubing and feeding tubes. Those stressful, scary months of all of us being so sick were just a blip in the grand scheme of things. I didn't realize it till I looked at it all together. Like so many times when people tell you it will all be ok and this will be all a distant memory. It was, for all the good and a few bad reasons it was in the past and more times then not we were just living our lives unbeknownst to many people of our harrowing ordeal 13 years ago.

I think their birthday will remind me of so many things. Of course, I will remember the agony of labor (not really labor in traditional sense but it was definitely work!) But like all mothers that is a memory that in retrospect seems very distant and is overshadowed by the complete joy and love of belonging to the mommy club that day. I think I enjoy and get more excited for their birthday then I do my own! But I will never forget the biggest lesson my twins taught me right from the start. That the sun always shines brightest after a storm. That the opposite of fear is courage and that strength comes form so many factors but you can not be strong all alone. You need God, family, friends and in my case a great medical team.

Oh yes, that the good times are always meant to be had, especially after the sad times.

Happy Birthday Teenagers! *

*god help me now😫🙏🏻

Art imitating life.

2016-10-21T20:26:00.003-07:00

I don't know about you, but I have often seen a play or musical and thought YES! THIS is why I love the theatre and what it brings to not only my life, but to all of humanity. This summer, that musical was Hamilton. Now, I did not have the fortune of seeing the play on Broadway (if you have connection please help a sista out...) but I downloaded the soundtrack and read the (600 page) book. I developed an obsession with Lin the creator and star of the show, and in good sensibility so did my children. Trust me, nothing is more frustrating than trying to explain the concept of a musical and the story line of a certain historical era while navigating the drive down the Jersey shore. However, my endeavors payed off big time because now my children want to know more and more about the life and times of Alexander Hamilton, as well as the musical in his name.

While watching a documentary tonight on Hamiliton and its creator, I thought back to why I was drawn to the theatre arts in first place. Believe it or not, as a child I was sort of shy. My CF doctor wanted me to be the CF poser child, however I remember distinctly saying NO!! (Now a days try and stop me from hogging the spotlight)

I think a large part of my increased interest in plays was initial feedback I received from my first ever scene study performance as a Freshman in college. I played a role that was such a character and so hysterical, that it had the other students laughing while hooting and hollering. That immediate feedback was all I needed and I was hooked. Was I the class clown or joker prior to this? No, not at all. But, to be noticed was an instant addiction in some ways and I craved more of it. More then that, I found a way to figure out what life was, who people were and what my life meant along the way.

My junior year of college, I had the chance to star in a play with a role so eerily similar to my own life. I played Shelby the lead female in the play Steel Magnolias. Yes, the Julia Roberts role from the movie. Even at the age of 20, I was aware of constantly being discouraged from becoming pregnant with such a life threatening disease such as CF. From about age 15 on, at every CF appointment my CF (male) doctor would send a nurse (female) into my room to remind me how dangerous it would be for me to become pregnant having such a disease as CF . Little did they know having Dot and Tony as my parents scared me enough to not come home as a teenage/unwed pregnant girl; CF or not.

In Fall of 1990, I did audition for the play Steel Magnolias knowing I was most likely going to be precast as a funny character role. But I had my head and heart set on the lead female part of Shelby because I knew I could nail it. The whole wanting to carry a baby while dealing with a serious illness (in Shelby's case it was type 1 diabetes) The audition sides were for Shelby telling her (way over protective) mom that she is pregnant and facing it with so much optimism in face of Mother's distress and worry. NO. I did not nail that audition. Not gonna brag, but I hit it out of park. I could emotionally connect to Shelby and her wants and desires in face of so much medical crap.

It was such an exciting role to seize, my parents surprised me by not only coming down to see it at my college in Miami, Fl., but by bringing my 2 older sisters with them. It was a definite highlight of my college acting career. Who would have thought it would ominously predict a much more dangerous real life pregnancy of my own some 12 years later. Talk about life imitating art. Geez, a little too much if you ask me!

Why and how is all this connected? Well, I had just told the entire pregnancy/birth story to my close friend and co worker. And the craziest thing to me was at end of story she remarked on how strong I was and asked if I felt pride for going through all that? Honestly, I had never thought about the word proud when reliving those days. I carried shame. Shame because my babies were so near death so many times how could I not feel responsible? Shame, because some part of me knew what a risk it was to my health and possibly theirs. Shame, because as their mother I could not save them from the scary needle sticks and other horrible things no baby let alone a 2 pound baby should endure. Shame, because so many medical professionals out right said something to me to make me feel that shame for having my babies as a "woman with CF should not have babies." Yes, a neonatal doctor did say that to me.

I went home though and thought about it. Her words. My feelings. My reality vs. how it would be portrayed on stage if say a musical happened to be portrayed on my life. And, honest to God, I did start to feel pride. Not only in the strength I somehow did have to keep going until those babies were at point where legally in the state of Pa, doctors HAD to save them. If it were written for dramatic purposes on stage or as we call it "creative license" writers would have a dramatic moment where I bust into song saying LIFE'!!!! I CHOOSE LIFE for my babies. But the reality was, I did not actually scream those words, but rather just kept going. I know in my heart I could not have doctors partially deliver my babies and then kill them. Which is what happens in late term terminations of babies.

Where is all this going? I'm not here to debate abortion in an already muddy election year. I know what I believe and no one can change my belief system. I also know the horrible way they would have killed my babies in the name of maternal health. In the play Steel Magnolias, my character, Shelby, does ultimately die a few years after the birth of her child from complications of a kidney transplantation and again my life was fore shadowing in how I needed a double lung transplant a few years after birth of Paul and Sarah. Yet, I make sure to never say it was because of them I needed transplant. Maybe things were hastened along a little but in my heart I knew I would possibly need one some day. What better way to say yes to the gift of life by giving my children that gift, and myself receiving that gift for the second time in my life from an amazing donor family.

Art can help us process real life scenarios. Even those moments what have not even occurred yet. That is why I love the arts so much and want it to be in all children's lives.

publicity shot from Steel Magnolias Novemberr 1990

good egg

2016-09-03T05:04:00.000-07:00

Here it was, September 2, 2016. The Saturday of Labor Day weekend, the official or is it unofficial end of summer. For all intents and purposes the end of summer is September 22, the same day of the fall equinox. My family went down the shore for one last hurrah, and I stayed home to tie up loose ends before embarking on a new school year, and the start of the same job but a little more responsibilities. Our 15 year anniversary was the day before. and we pretty much spent it arguing and I was wondering why labor day seemed like a good weekend for a wedding when it now signified the end of everything. I had dealt with each of the twins' tears and sadness over the end of summer, and the beginning of the dreaded school year in only a way this mom could. I tried to hear and validate their feelings, but then told them all the positives of a new year and more or less to "pull up up your boot straps and adjust, school is coming and their ain't nothing you can do do about it!"

Harsh as it sounds, that is pretty much what my own mother would have told me (without the validating, much less listening to the feelings part of it.) I started out my day really missing her, and maybe this is the root of where this story begins. 13 years later and some days it feels like I have to fight really hard to remember her face, her voice, her touch. Marital problems were her specialty with my other 2 sisters. I heard her say to them more then once "stop being such a bitch." Needless to say her son-in- laws always knew that at least their wife's mother took their side, even if she did call them clowns.

I went to my Bikram yoga, and feeling particular vulnerable, I tried to focus my mind elsewhere. Yet, it kept swirling with all that was wrong at this point. I hadn't taken the kids to at least 3 planned day trips. I was very short tempered the day I was watching 5 additional kids of my own and nothing was clean or organized in my house EVER. My dog still was eating cat food, chicken feed, chicken s%$#, cat poop and basically anything that wasn't DOG FOOD! I still had boxes and boxes of unorganized pictures, art work and so forth from the twins that I started to sort through with zest back in June but, now clogged my bedroom leaving me to trip over it every night at my 2 am pee break. Speaking of 2 am, I kept waking up and just feeling like I was missing something? I would dream of forgetting to write a term paper (hello? college was like 20 years ago?!?!) I was going on stage without pants or knowing my lines. In general, my mind was just a mess. Yet, my yoga practice felt awesome. The more my mind fought me the more my body didn't and went with the flow. Maybe, I would look OK in those pictures from my weeks ago yoga photo shoot (another 2 am worry).

I left yoga feeling a little better but, still I just had a heavy heart and could not shake it. I went to Target with a wad of cash, a sure fire way to cure any girl's broken heart. The funny thing was after of a summer of feeling so tied down with my kids and their endless needs, questions and, just in general, demands of me, I really missed them. I missed the laughs we shared over silly things like a fart machine. Or they would have loved helping me pick out new sheets. Crazy, I know, but the mundane aspects of life were made so much better by those 2 knuckleheads. I made the connection, that while I missed my Mommy so much, I was so blessed and lucky to be a Mommy and get that relationship just from the other side. My mood started to brighten and, especially when the barrister at Starbucks sheepishly made me a Pumpkin Spice Latte (even though they are not supposed to let anyone know they have them yet). #psl

I went home with a spring to my step. I was greeted by 4 clucking chickens, 2 meowing cats and 1 darned crazy but cute beagle. They all needed me and needed what I could give them right in that moment...love, food or water. Just the basics, but it was nice to know I was needed (see me in about 3 weeks into the new school year and I doubt I will be saying that). I went out to the chicken coop and did something normally the kids or Drew do every day. I peeked in the coop and laying there in the hay was brand new shiny still warm fresh egg. One of my girls laid me an egg. I cried with delight as if it was the first egg I ever saw. I cried because it signified all the is good in life starts with life.

And life goes on; no matter what.

what came first chicken or the egg?

Rejection and Roller Coasters

2016-08-31T14:51:00.000-07:00

End of summer countdown and we are per usual squeezing as much as possible into our remaining days. Yesterday, we went to Dorney Park and met our Northern New Jersey cousins for some fun and thrills. All and all it was a great day especially for my son, since he fit the age requirement for all the big rides so he could go high, fast and upside down all he wanted. That was definitely a milestone for him. I remember going to Florida on a vacation with his cousins and Paul could not go on the water slide at the hotel. And his cousins all were tall enough I mean seriously the slide was like 2 feet and Paul measured less then a hair under the height restriction but this life guard was adamant. Needless to say, we never ~~are allowed back at the resort~~ went back to that particular resort. I had to deal with a hysterical 5 year old who could not understand the rejection and I as his mother and still rather new at this game internalized his rejection into my own psyche. I was thinking about that as I watched him go on each and every terrifying coaster with not a drop of fear in his eyes, while I stood back watching with a mix of panic and pride: "OMG! My sweet angel he is going to fall out or his brain will be made of mush after that drop!!!!" OR "Yes, that is my brave big boy not scared of anything, bring it on so he can conquer the world!!!"

I feel like I say No a lot to my children because I basically don't want spoiled brats. Yet I don't look at this as bad rejection. It can also be a helpful character building tool. Nothing has annoyed me more then seeing another parent not say NO to a child. How is that child going to deal with rejection as they grow up and Mommy can't solve your problems. That being said, I do have my Mrs. Goldberg moments. The one rejection I fear my children facing with each passing puberty day is the let down from someone they like of the opposite sex. I fear my pride getting squished more then theirs! Picture this mother calling or rather texting some worthless piece of metal mouth bad hair crater face lowest of low in life teenager..."Hello, person who will never be good enough for my child anyway, this is the CREATOR of the 2 most delicious people who could ever walk this earth: Paul/Sarah....How can you not simply just want to kiss their baby soft cheeks and smell their baby fine hair while they sleep in your arms.....???"

Yep. Rejection is a tough one.

I have had my share of rejection and also had the most unpleasant job of rejecting someone.. Choosing a career as a working actress rejection is almost part of job requirement. The greatest thing is that after 40 you really don't care. You don't like me? Fine. I would much rather hang with people where I can be myself anyway. I like to know the rejection right up front. Like a mutual bad blind date. Split bill, shake hands and don't prolong the agony any longer. It is sort of like the crucial hours, days and weeks after my transplant the fear of rejection was high because it could mean bad things ahead. But, I figured if it happens now, at least I know what I am dealing with. Luckily, it never happened. Same with friends, Why does it seem like the crowd you initially befriend in school or social gatherings is never the one that last the longest. At least for me. You would think hey we are hitting it off over here laughing it up exchanging phone numbers making plans, and never a break in the silence we just have so much in common and just get each other?!! Yet, for me it the friendships that can have big gaps of silence because you are comfortable enough with each other to just be in each others company. In the quiet silence you hear each other's souls.

I think in most romantic relationships, one of the biggest stresses is who is going to say I Love You first. In an ideal world a giant whisper would come down from God and say into your ear "She's ready. Tell her." But often we don't because we fear being rejected especially if not said back. I try and say I love you to all my friends, guys and all because what if we never see each other. Or isn't just a nice thing to hear from a friend? We do love them or else they would not be our friend. Yet, people do not say it because they may be looked at weird and get rejected.

It has been tough summer in some ways for me. I have had my share of rejection, especially from a certain pre adolescent son who lives in my house. It seems I do nothing right or when I do it is forgotten in minutes. That is tough as a mom. I know it is part of his development, the little boy growing into a young man. Boy or man I have had some hardship time communicationed with the men in my life. Mostly because I think they are afraid of being rejected as well.

I just hope this little boy eventually stops rejecting this mother who would do anything for him, especially drive him to Dorney Park in 90 degree heat.

unexpected perks

2016-08-22T07:59:00.000-07:00

So many things to write about but never the time nor energy sometimes. I want to start off by saying what an amazing summer with my kids. I told myself this would be the summer of chill, and for most part we did just that. I sometimes have the urgency to do everything and be everywhere, and it is part my nature (helloooo did anyone meet my 89 year old Dad on hospice who is like the energizer bunny??!) and part the culture in which we live. I hope people don't make too much out of it like, "Oh, she thinks she is going to die young so she wants to take it all in." Anyone who truly knows me will attest to the fact that I love my naps. In fact, I have no idea how I will nap in the middle of my after school job, it gets rather loud in that room, you know with all those kids I am watching.

This morning I was shooting an ad for the University of Penn Lung center and later will do the interview segment. It could not have come at a better time. End of summer boredom and fighting has taking quite a toll on me with my tweens. I was recommended for this job by my awesome lung transplant doctor who knew how passionate I was about organ donation and also the hospital and care team who provided such stellar care to me and my babies during our illnesses. It might have also been my acting background that provided him with the thought that I was perfect person for the job. Or maybe no one else he asked was available; I'm going with first option.

When I say this opportunity came at the perfect time the reason is first and most obvious it is summer, so I had no job to report to, and like I said I have been spending so many ~~loud,obnoxious,argumentative~~ beautiful sun soaking days with my children that this Momma could use a break. It started off with the fact that I could stay the night at the room they provided for my whole day comfort. This said room was above a beautiful Italian restaurant called Panorama. Can you say room service ??? (2 glasses of wine and a bath robe) I've been a bit jelly of the moms who have to travel for work. It all sounds so glamorous and exciting. Dinner without excessive talk or gross body sounds? CHECK. Two glasses of red wine in fancy wine glass and not some plastic piece of garbage so it doesn't break near pool and cut toes? CHECK. TV all to myself with out interruption 20 times about everything under the sun except actually falling asleep? CHECK. I could go on but let me get to the really good stuff. I arrive to a box full of nice soft yoga clothes that someone picked out as potential wardrobe for me to wear (did I say it was ad featuring my yoga practice and how my new lungs support my breathing and all around health??) I tell you I could get used to someone shopping for me. The colors were perfect and the fit was spot on. And best thing I didn't have to leave my room. Whatever did not work, was picked back up and returned for me!!!! Talk about door to door service. Next, I ordered the room service and the wine and it was delicious...no washing endless amounts of dishes just plop the tray outside my room and BAM! it was discreetly whisked away!!! Magic, I tell you magic. Now, call time came early 6:30am like many work days, but imagine taking a shower and then a make up artist comes to beautify you?! Cinderella had the right idea let me tell you! Grab coffee to go and we are off to do the 'work' of the photo shoot. I was a little nervous, for here I am on my yoga mat, facing the Delaware River with a lot of people and equipment set up like I was some Christy Brinkley....let me tell you models do have it hard, especially the flash of bulbs in your face, the constant personal service....bit of sweat on brow...POOF the markup artist appears and gently attends to every bead of sweat before it thinks of running down my face. Thirsty? on cue a bottle of water will appear with a straw and someone holding the straw up to your parched lips so your work load is not any worse then it already is. The best was being referred to me as "talent". The only time I referred to as "talent" around my house was in "you should clean the feces off wall your toddler son just smashed, you are talented at that sort of stuff."

You know, I studied theatre, did lots of live shows and basically perform on a daily basis in any situation. And let me tell you, the butterflies were definitely there, yet as soon as I began the postures I practice with of course a little here or there adjusting or can you hold your leg like this for about an hour, my fear flew away. It wasn't all that theatre training (yes it was Mom and Dad say after lots of money and time devoted to my craft) but it was the merging of several different passions of mine. Performing--yoga--breathing--and doing what I can to send into the universe a love message to my donor, my donor family and all my friends with CF who didn't get this chance I have of breathing easy.

Every time I lifted my arms and reached for that beautiful blue sky, I could feel the presence of peace. The peace I deserve after a lifetime of illness. The peace my donor family deserves for their lifetime heroic act of giving. The peace that I am still and one with the universe; the universe that holds the secrets to so much of life. To embrace that secret is to know what it truly feels like to be alive. The peace and complete agreement with my heart and soul that I deserve this. I deserve to be happy and healthy.

Now, after a long day of work, I go home to my little world of chaos and joy, because I deserve them too.

Namaste'

Best DMV ever!

2016-06-30T18:49:00.000-07:00

Yep. I turned 45, five days ago. Along with that came the renewal of my driver's licence photo. If you notice today is the 30th of June so I have procrastinated this as much as possible. Anyway, I woke up, got shower, and proceeded to blow dry my hair really nice, and carefully apply the GOOD moisturizer (at 45 you will know what I mean ;). And of course used all that knowledge from Stage Makeup class 1991~ side note: Professor Dave Trimble thank you for pointing out every flaw us young thespians had on our faces. I still wonder if my eyebrows are really that crooked. I digress, I carefully apply my make up and all of this is for that stupid picture we have to live with for another
five freaking years. I remember that first time licence picture new driver, 17 and , so happy I had summer birthday because I had the greatest suntan in my picture.

Back to the story, I dread our Frazier DMV because it is super crowded every time. While at my HUP board meeting last night, I happen to mention this to a man who is from my area. He tells me to to go to the DMV in Concordville. He claims it is never crowded. It's not that much farther really, so with a little wariness I set out this morning to go to that one. What to my wondering eyes but it is not crowded! In fact, I go right up and I am served by promptly by the DMV employee. I notice all the Gift of Life brochures etc., and always feel a great pride in that. Then this lovely lady says to turn to computer and answer a series of questions. You know: are you registered to vote? would you like to change your political party?~~yeah can I change it to the federation of morons and jerks since they seem to be running for next election??~~

Then the best question ever...ARE YOU AN ORGAN DONOR? And with pride, I check yes and sort of under my breath say, of course I am an organ donor, I am an organ recipient! Well what do you know, the DMV lady says: "excuse me did you just say you received organs?" Me being me, goes off on my tangent 10 years, blah, double lung, blah, grateful blah blah blah. Yet, it wasn't really blah blah blah becasue this woman was so interested in it all, and wanted to confirm that she was helping people when they asked her questions about the process. She was so well meaning, and wanted to help but there were a few things she had incorrect or maybe used wrong language. Bottom line she was not only helping promote organ donation at one of the places where is most certainly comes up. She was not a donor family member or a recipient. She just happened to work at a place where that question is asked and becomes a topic of conversation some times. She was salt of the earth folk, who understood the fact that lives were saved by this simple act of saying yes. When I told her less then 1% of population die in way that makes them eligible to be an organ donor, her mind was blown. Literally her eyes lit up to hear how this rare miracle truly comes to fruition and she could now relay that to the people who were on the fence about becoming one. She even said I am going to tell people about you, and how organ donation does work!!

Skeptics out there will ,call this a random coincidence or what not. Yet, on my drive there, for some reason I was beating myself up about for talking about my health too much. I know, I know whole other blog with THAT one.... But, when the opportunity arose to talk about it, I jumped at it and never thought twice! Those are the things that happen where I really believe the saying "There are no coincidences just connections." The believer in me also thinks it is the guiding hand of God giving me another opportunity to drop that pebble in the water and hopefully the effects go on and on and on.

Next time you go to DMV and obsess over that picture, and the wait etc etc. Share my story or some other organ donation story. After all, every day is the perfect day to save somebody's life.

surrendering

2016-06-23T18:59:00.000-07:00

People I have known in and around the CF community have all at one time or another said something that I myself truly believe (most days). A lot of us feel that having CF has been a blessing in some ways. WHAT??!! Yeah I know it sounds absurd to me just writing it but bear with me for a second. I have never known life without CF, therefore it is my reality. I lived with it from my earliest memories. I always took pills, visited a doctor every 3 months and a cold was usually a week or more home from school with lots of worry from my Mom. The closest I have come to not knowing a life with CF is post transplant for sure. Most noticeably I didn't have a cough or trouble breathing anymore. The oxygen went away as did the feeding tubes and port. I still have CF however, as evidenced by my need for pancreatic enzymes and frequent sinus issues. I added a few things courtesy of my transplant, among them recurring skin cancer issues, and diabetes.

BUT even with all that....I think I have more blessings because of knowing a life with CF and surrounded by others who have or care for us with it or simply cross our path.

Let me give you an example.

When I was an in patient at 22 weeks pregnancy and told by maternal fetal medicine doctors to terminate my pregnancy, that goes down as one of the most horrific days of my life. Yet, I understand why doctors said what they said, and without that day, I would never have met Reverend Dennis.

That day I was called over to main hospital by the head of maternal fetal medicine 'to discuss my case.' My husband was at work and my oldest sister lived closest to Penn so she came over with me. We sat in the tiny room, and I had her next to me, my CF doctor in a chair and Dr Perry facing me and my oxygen tank. He went on to explain what his opinion from a medical standpoint was about going forth with this highly at risk filled pregnancy, the most certain fate of me dying, the babies at best being born severally premature and a list of every possible and most likely condition they would be afflicted with and made handicapped forever.

After much crying and the doctor leaving me with a time period to make my decision before the week of viability in PA (24 weeks), yet, still maintaining in this case they could do a late term abortion because of my health, although not what they recommended. I went back to my hospital room, crying, praying, calling everybody I knew, and then called the hospital chaplin office. I said to the operator I am Catholic but I don't care what faith the person is, I just need to pray with somebody.
A little while later, a Roman Catholic priest appeared from St James the local Catholic church near Penn. I cried to him and spoke of what had occurred. He was an older priest, maybe 60 ish. He looked uncomfortable and basically told me to pray say some Hail Mary s and trust in God.
AND THAT WAS THAT. MY 12+ YEARS OF CATHOLIC SCHOOL, CATHOLIC TEACHINGS AND THAT WAS ALL HE COULD GIVE ME, FEAR. HIS FEAR. I never felt more lost and alone after that.

I don't know how long after that, but a gentleman of African American decent, about late 50s came and knocked on my door. He told me his name was Reverend Dennis and somehow he heard of my troubles. I don't even think he had sat down when I began telling him the whole story and so much of what I told him was grief about losing my Mom just 3 or 4 weeks earlier, and I need her right now!

He did what I needed. He listened. He empathized. He validated my fears and worries. He offered unconditional love and support, never once did he judge or tell me he had all the answers. He only told me God was with me. We prayed unlike any prayer I had every prayed. It was real. It was talking to God. It was surrendering to God my fears, my worries, my doubts. It was loving God and having a relationship with Him. Rev. Dennis left soon after with promises of returning. And he did. Many times over he came to my room, met Drew, met my sisters and my Dad. He gave to each of them who were filled with their own fears what he gave to me. Moments of peace, joy and surrender. We were a family still grieving my mom and here we were faced with another potential loss. At a time, where every nurse, doctor, social worker and what have you offered opinions, and judgments, Rev. Dennis offered a haven of prayer and compassion.

He stayed with us throughout the babies birth, visiting them on the night they were born and of course praying over them. He visited me, especially when I was in coma and things looked grim. In fact, one day my sister was visibly upset in hall outside my ICU room and he came up to her. Well you have to know my sister, she is about as real as you can get! She raged at him, that what kind of God would do this. And how she hated God! She told me he never flinched. He just said that's ok Patti, you hate on him, be angry, get mad! BUT you are still in a relationship with Him and that is what it takes sometimes.

Many months after my recovery, that first Easter the twins were still in NICU. Dennis and his wife, Kay invited us to his church up in Mount Airy. Patti, myself, and 2 of her kids went. It was probably one of the most happy if not happiest church gatherings I had ever seen. We, and I will admit, we were probably 4 of maybe 9 white folks in church. We had never felt so welcomed! Rev Dennis got on the pulpit and told the story of me, the twins and how we met him. Before i knew what was happened he called me up aisle to come get laid hands on by all mothers in that gathering. I walked up, and before I knew it I was surrounded. Hands were all over me and the room was filled with so much love and prayer. I surrendered to it all. I accepted their love, and prayers. A year later the following Easter I brought my babies back to celebrate the miracle of their health. We were not only welcomed once again we were remembered and felt such joy and love from people we barely knew.

We still keep in touch with Dennis and his family. Drew told him that night babies were born, you don't know my wife. She is Italian, you are in now, you are family and you can never get rid of her !

Drew was right. If I let you in, you are not getting out of my heart. I take relationships and loyalty seriously. If I had a 'normal' pregnancy and 'normal' health I would never had met Rev. Dennis and formed such a unique bond with him and his church family. As much as CF has interfered with my health and certain plans, it could never take away those bonds.

Kay and Dennis at twin's first birthday. Of course, he did their first 'birthday blessing.'

endurance

2016-06-16T10:59:00.000-07:00

A long time ago, when I first met my soon to be in laws, I remember my future mother in law saying all she wanted to see is her children happy. As noble of a cause that is, it stuck with me when I had my own children. Of course, I love hearing their laughter and those first smiles and coos. I remember them both propped up on couch and I would sing and dance the wiggles songs for them and they laughed and laughed. I was on oxygen and not at my best, but I kept pushing myself becasue their laughter at me was the best thing I ever heard....and I came from a theatre background where I could play comedy pretty well (Comedy=tragedy + time). But these babies looked at me like I was their rock star, and they waited for me to do my thing and they laughed and laughed some more. So, anyway of course I love seeing my children happy, even if its more of a challenge at age 12.

Over the years, I have realized there were so many more attributes I wanted to endow my children with, So much that life was going to throw at them and not always make them happy.

Endurance is described as an ability to withstand pain or hardships. I know my babies don't remember much from the NICU but they have this trait down pat. I realize they had no other choice, but they were poked and probed (with so much TLC but still a needle and a breathing tube are not fun to see any 2 pound baby have to endure. Yet, they did and emerged completely in tack and irony upon irony they still made big fuss over smallest boo-boo as most children do anyway.

I wanted them to develop confidence. I know I'm their Momma and they are the most squishy pieces of delicious chicken nuggets I have ever snuggled with, but then again I am their ~~Mrs Goldberg~~, aka Mommy. I see how they went from being toddlers who are full of wonder and where every day is a new adventure, to the reality of elementary school, and the countless essays and projects will they ever ever end?? I watched how in Kindergarten everyone was a friend and you weren't judged based on your 'popularity' but on are you free to play with me and make magic? I see now they can get rattled by the demands of growing up. Their confidence, that at one time seemed so hard wired is just the tiniest bit up heaved at the slightest betrayal of a life long friend. They are learning how you can be so sure of a friends feelings and trust one day and they next that friend has moved on to another friend, that feels like the ultimate betrayal. Yet, it is up to me to not yell at that once beloved friend but help my children navigate the nuiances of people and build their own confidence of who they are and what they ultimately believe about them self and the courage to look ahead for what life still holds in store for them.

This time of year, you read and hear so many graduation speeches and advice to the graduates as they go on to tackle to 'real world' (editor note: If that entails is going to college for 4 years, THAT is NOTHING like real world) . But in those speeches people throw around big words like: moral compass, conviction, wisdom and hope among others. I myself gave a graduation speech at my high school alma mater last year. It was a pretty tough responsibility. What do I say, how do I leave them full of hope and shooting for the stars?!?!

Here is a portion of what I said:

Even though I have never met my donor family, they have taught me and my family what true courage is:

to do the right and human thing at all times and what the word hero truly means. In that one small act of saying yes in a time of personal loss and tragedy, to donate their loved one’s organs they gave life meaning and the human spirit resilience. I carry with me their loved one’s legacy and do my best to honor that gift of life I received for a second time. Through grief and loss, the gift of life is sweeter and very much appreciated. Do your best to honor and respect you, for you are the gift of life to and from your parents. When I say the words 'unconditional love' that comes from your parents truly and from the Lord Our God who forgives you and will always be in your corner.

If that is what I leave with my children, then I think happiness is theirs for the taking.

VMA speech (2015) only I would try to seem hip to the fads of selfies and do it wrong!

perspective

2016-06-03T16:12:00.001-07:00

It came and it went. My milestone of 10 years post transplant happened and I was wished many years of continued good health. I have to admit, for a few days I was getting packages and flowers delivered to my door. I got to feel like the movie star I wanted to be once upon a time, I guess. While all of it was so thoughtful and generous, and it was given in the best intentions, I have to admit I felt rather uncomfortable at times. Never far from my mind is the fact that day, 10 years ago became the worst day of another families' lives. And while I generally feel certain they wish me nothing but continued health and success, I do feel pangs of guilt at times. The guilt comes from my general humanity. I am not an inspiring person all the time and I am in no way a saint. I am a human being, a *wife, a mother, a sister, a friend and I am sure all the people in my life from those categories can cite at least one or 300 times I disappointed them in some way. We all do, it is what makes us human. No amount of life saving changes the fact that we all mess up and are constantly striving to do better. Now if I can help someone change their mind about organ donation in a positive way, then I just did a good thing. If I use my experiences to help another potential recipient through their journey, then I helped a fellow person. Using my time and talent to give back to others was instilled in me from a very young age. It is no different then what I want my children to learn. Helping others in whatever way gives you peace and a sense of usefulness, is what we all should strive to do often.

I must say having CF for my whole life has not been the worst thing ever. In fact, it has provided me with a lot of insight into people and how they handle sickness, fear, and even death. For example, I consider myself very blessed with many friends from different areas of my life. Some from where I grew up in the city, some from high school, college, theatre , my children's school etc. etc. The true friends, the close ones all have one thing in common. They never treated me any different because I had CF. T hey knew all about it for certain. They respected me and how I handled it. But they never made me feel different or insecure with it. In fact, as with my family, if you could joke around about my CF then you were an even better friend! "Ain't nobody got time for a pity party here!"

I recently had some Mohs surgery to remove cancer on my lip. This is becoming more and more routine, ~~a parting gift for having a successful lung transplant.~~ So, it was to say the least very upsetting to me the whole night before and day of it because you just don't know what will happen. Then, of course, in the chair waiting, you hear doctors discuss the whole lip coming off, or avoiding the tiny muscles that would effect her eating or the dreaded using skin flap to reconstruct but it would be colored white not pink like a lip. Now, for many years and even over the last week I was called brave, and courageous. Well, I will admit, in that moment tears just started down my cheeks and would not stop. This is my face we are talking about. Not the underside of a shoulder! My lips. I actually like my lips! I did not feel very brave at all. I wanted to jump the hell out of that chair go get my car and drive and drive and drive till I don't know where. WTF! Take back the flowers I want my lip! The doctors and nurses caught on to my growing anxiety and very carefully calmed me down and left me some time to calm down. Which I did. I mean what was I going to do? Let it grow and get worse and then really have no face? This was something we caught soon, and yes it was fast but I was at the best hospital with a doctor I trusted. I had to do what I had to do. They came back in, we put on some good U2 for background music and they did their job. They had to go in and get a second layer of skin but for most part they said it was not as large as what they though and my lip should heal without any issue.

Today, a day later, I have been drinking milkshakes and water ice as my nutrition for now and pain killers are my friend. But I am glad it is over. I start to over think sometimes: what if something else comes again or worst. They did tell me when I received the transplant it was trading one set of issues for potentially more. Yet, the issues are not killing me just giving me a run for my money. That is probably why I feel I don't deserve any labels or accolades. I just wanna live my life, raise my children, work play etc.. Just like everybody else. And when a hurdle comes up, I pray I am able to walk through it again to get to other side. An inspiration? Nah. I just call it doing what needs to be done.

therapy cat at work: Roxi

a love story.

2016-05-23T10:24:00.000-07:00

Not to be cliche but they say you always hurt the ones you love. In a lot of my writings I have mentioned my husband, Drew, but never devoted a whole entry to him. Why is that I ask myself. I think the answer lies in the type of guy Drew is for one. We were both in Theatre when we met but I was the on stage limelight type of gal and he was the quiet, reliable, trustworthy behind the scenes calling the shots Stage Manager. In fact, engraved on my wedding ring is the word STAR and on his is this word MOON. You know moon quiet reserved, but steady and always there when you look up, might even say brooding and dark at times....; star=me always saying "Hey I am over here LOOK LOOK I can twinkle, I can shine bright!!! (~~Attention whore)~~ Can you see me ??There was also some astrology stuff we shared over his big telescope and showing me all sorts of constellations and planets and ....well lets keep this PG.....

Drew came along in my life, when I quiet honestly was pretty beaten on the whole notion of love and anything lasting forever. My choice in boyfriends, or clowns as my moms called them (one of the nicer terms) was not always the best to put it mildly. Narcissistic, addictive, selfish may be a few of the milder terms to describe them. I was beginning to get the name Julia Roberts around the Theatre for my love life was definitely becoming more thrilling to watch then the actual shows we were producing. That is what happens when stalking and cops are involved I guess....kidding!

So, Drew I will skip all the boring fall in love get proposed to under the stars, fairy tale wedding and even more magical Honeymoons to Europe and Caribbean. What I what to tell you all, is how much Drew saved my life 10 years ago when I got my double lung transplant. When I became pregnant with our twins, Drew was the one who worried about my health. This was a critical juncture in our marriage because not only were we embarking on 1 baby but 2 and a very sick mommy. He fretted and was concerned, where I was all like YEAH!!! Buy one kid, get one free!! His more involved concern over me was not only needed, but very significant as it was the time period where my Mom died and she always worried more about my health then I did.

I'm gonna be honest. When those doctors said you need to abort those babies to save Kathi's life, Drew was torn. Really torn. He said point blank to me: I want you. I want you to live..Now don't get all pro lifer on me, you have to remember he was the father and as much as he loved that belly and what it was holding, it was not real to him. I was the one who could feel them kick and hiccup. However, when I went forward with pregnancy he could not have been more on my side. The anxiety level I had was increasing every minute I struggled for breath and I made him and my Dad sleep in my hospital room every night to help me with my fears. He made super duper all kinds of fat and caloric milkshakes to help me gain the weight. He studiously listened to my CF doctor and every bit of information Dr H gave him, Drew wrote down in a journal. He came to my hospital room every night to bring my favorites: Newspaper, ice tea and maybe a Mallo Cup or 2. He was there when they gave me the epidural, where normally father goes out of room I begged for him to stay I was so afraid. He even tried making me laugh during the high stakes delivery by making bikini wax jokes as they shaved me....don't ask. Let's just say room full of mostly women gave him dirtiest look ever. HA!

I look at the pictures of him as a new father. Beside those tiny babies. He was the first to see them of course. He looks so proud. So young. So full of optimism. He had to be the parent to sign the papers authorizing them to operate on Paul's heart, a dangerous procure for any newborn but one who weighed 2 pounds it was downright terrifying. He still to this day can not talk about that talk he had with Dr Mike. Or about the time where all 3 of his family members were on life support. He was the quiet efficient task masker making sure all was being done to save his families' lives, yet he never asked for praise or honor. He did what a real man does and cared for and supported his family. He closed down an ICU looking for my silkie...my pink blanket (since childhood) that I slept with and help onto...my security blanket., While changing my sheets, the nurses must have put it in the laundry bins and when he noticed he fought for them, to find it. IN AN ICU ...WHERE THEY ARE SAVING LIVES HE FOUGHT FOR THAT STUPID PINK BLANKET. Because he loved me and knew when I woke up from my coma I would look for it I would want it, I would need it.

The night I received that call of news lungs waiting for me, we were excited. This was game time. All the training and planning was about to happen. The efficient stage manager in him, made all the calls, went right to task mastering. I struggled to get a shower. He stopped me for one second. He grabbed my hands and he said "We should take a moment and pray. Pray for that family." And we did. And that right there sums up my husband.

Daddy and Paulie doing Kangaroo Care in NICU
May 9, 2004

Apples and Keys

2016-05-17T18:43:00.002-07:00

A funny thing happened today when I walked into an Apple Store.... Well, not funny but I did manage to get a free iPhone in place of my ~~overused~~ defective old phone. Same model etc, but still Apple rocks and their shiny happy pink, gold and white store rocks and although I felt a bit intimated walking in; the 'genius' who helped me rocks as well. Shout out to SIMON!!

So, anyway I have to wait a bit for my new iPhone to sync after the back up I did last night of my old iPhone information, Look at me all talking tech and sync and smart phones. Sorry any bit of tech savvy I can muster up and I gotta show it off. Anyway, the kind genius, um I mean Apple employee directs me to sit on these giant cushy round chairs and to play with the latest iPad (shameless plug::
I want one please). I am there totally immersed in some app and a lady sits next to me at the table. I briefly come out of my tech coma and notice her but ever so quickly before engaging with all things shiny and pink and gold and white in my hands.

After a few minutes, she speaks to me to ask about a key I am wearing on a chain around my neck. Before I can answer she clarifies that she is drawn to it because the people she spends a lot of time with wear keys around their necks for safety or some thing like that. I show her the key and the inscribed word on it which is BREATHE and I tell her it is called a giving key, and you are supposed to wear it and embrace that word whatever it may mean to you, and pass it on to someone who is in need of that quality. I add that my very best friends gave the key necklace to me because at the end of this month I was about to celebrate 10 years living as a double lung recipient. I know what's coming next from her, the look of oh my God what the h*#@ did she just say??? Double Lung what??? And then the eyes dart to where my lungs are as if they have a big red bow on them or something.

Something else happened....I mean yes she still gave look of shock , but something very unique and special came through our conversation. The irony was not lost on me that here we were in the middle of Apple America the place where we go to get our shiny silver, pink, gold and white gadgets that help keep us from talking, looking or touching another human being. Nearly everyone in the store was either looking at their phones or tablets or waiting to get one fixed or upgraded. while engaging with other technology. Yet, this lady took the chance to ask me a question, not knowing there was this story behind it. I wondered to myself how many other stories are lost because our own heads are 'in the i cloud'.

She proceeds to tell me that the people she hangs around with a lot are because she is a nurse at a state hospital. A mental hospital. And these people carry a key to a place/locker/closet that contains sometimes all they have left in the world. Or at least the very most important things they want to keep safe from harm. Their treasures. We both started to cry as we made the connection that my key was laying over my lungs, safeguarding them, my most treasured gift of life.My treasured lungs. It felt like some cheesy conversation right out of a novel, but it was honestly pretty cool. To prove it was real and cheesy her teenage daughter who sat on other side rolled her eyes a few thousand times at her mom. That made me laugh too because how many times did my Mom have these complete conversations with a stranger in a store while I stood there sullenly rolling my teenage eyes. Yes, Mom I got your message too, you are here as well.

Janice, the lady did have a name, asked if I work at Gift of Life. I tell her all about our volunteer efforts at promoting awareness and education about organ donation. She goes on to tell me about her friend was waiting for a liver transplant but it was a dry run because the liver was too big for him. Talk about a connection not just a coincidence. She was so happy to have nosed around about that key for here it led her to a moment with a stranger that we interpreted as God's plan of giving her a sign of peace and hope for her friend and to pass it along to him.

Technology has been a blessing no doubt and it factored in my human connection today, if only because I was in a tech based store. I just don't think no matter how much technology takes over our world it can ever compare to looking into Janis' eyes and forging a human connection over the gift of life.

Apples peaches pumpkin pie, you were young and so was I...

Fall 2006: a few months post transplant

2016-04-28T19:27:00.001-07:00

countdown

2016-04-25T18:54:00.001-07:00

So much has been on my mind to write about, yet there just doesn't seem to be the time to sit down and just do it. I guess the most anticipated date is closer then ever and my initial countdown from #100daystill10years is now #34daystill10years. I don't even know what I will do on the actual date of my transplant that warrants a countdown. To me, it is certainly not a Countdown to a Rockin' New Year's Eve. Nor is a start of a new journey, like a wedding or baby's birth. However, it does mean something, just truly what that thing is I am not entirely sure. It has meant bits and pieces of things that are slowly painting me a picture, but of what that represents, I can not put into words.

Often times, I posted the countdown with a word that came to me during Bikram yoga class. Yoga seems to be one of the only places where, for 90 minutes, I can silence all the do lists in my life and just BE. Some of the words or phases, flesh out the journey I am on, not just to May 29, 2016, but the journey of my life. Clarity, strength, grit, fortitude, wisdom, contentment, joy...just some of many more that are still untapped.

When I think back to those first months and years after my transplant, I remember a woman who was so joyful to embrace life in its entirety. I picture little ole me, running around almost like I was kept in an underground bunker, fascinated by how it felt to fully breathe, and be healthy. That wonder when at every doctors appointment my PFTs went up and up and up after years of watching a steady, then a steep decline of lung function. I remember saying over and over "everybody should be able to breathe this way." It hurt to see people who could not.

Just like most things, I got back into my life. The business of living especially with my children who were 2 at the time was very, well busy. There were milestones to meet, and schools to attend and along the way I tried to tell my story, so others could have their chance to breathe and live. I will not sugar coat it all, for with great powerful lungs comes some tough breaks. Skin cancer, diabetes, and always tests tests tests. Looking, searching, waiting, the doctors are because they know the longer out the more can go wrong. My lung transplant doctor said the other day, 10 years is not enough. And no it is not. I have the business of attending to this life I have been so blessed to have been given once by my parents and twice by complete strangers who are my family of the heart.

I am humbled when I read the list of things I wanted to accomplish post transplant.

read a bedtime story to my babies cover to cover with out even a throat clearing
not worry about finding a handicapped space to park at the store
eat and fully enjoy a meal again
talk without stopping to catch my breath.
shower without a chair
sleep a full night without a feeding tube
sleep a full night without coughing myself awake
not have people look at me wearing Oxygen, with 'pity looks' or 'death stares' (totally for real, go put on oxygen tubing on and you will see!)

But I am really astonished that I completed that list and went on to other things I never thought possible:

paddle in 2 dragon boat races on the river winning a medal in one!
not only complete 1 class of Bikram Yoga but go on a regular basis and watch muscles I never knew I had emerge!
take our children to Disney 2 times!
co-author a children's book "Mommy Can Play Again" for children whose parent is facing a life saving transplant of any kind.
appear on TV and radio promoting organ donation

So many things I am happy to say I have done. In all honesty though, the thing I am most proud of (besides my children) is when someone says to me: I became an organ donor because of you.

Words can not express how that makes my heart feel. It is a small piece of the puzzle where I once wished for everyone to be able to breathe normal.

It is making the whole picture come alive.

Dragon Boat Race Lifesavers win silver: October 2014

Power of Love

2016-03-05T11:01:00.002-08:00

You ever hear a song and remember where you were when you first heard it? I think it is a pretty common theme among many people. That is why it can be so stressful picking out the first dance as a married couple wedding song. For the record, my husband did not exactly love our song but most of 'our songs' were kind of hard to do a slow dance.

So, I am driving home from yoga this morning and I hear "The Power of Love" from Celine Dion. Now, that was not our wedding song but it was a very popular one for folks getting married slightly before us. My throwback moment for that particular song will always be linked to the time I was in a coma.

Huh? In coma and you remember a song?

But I kid you not.

See, someone had suggested to my husband he get a portable CD player with headphones (ipods were not as popular yet) and play music for me, because studies suggested people in comas still heard everything around them. So, he did just that. I guess looking over my supply of CDs he thought better of any AC/DC or or Beastie Boys ditties. He opted for a more easy listening music, hence Celine Dion. In retrospect she was perfect choice, as she had a niece die of CF and was a very big supporter of the Cystic Fibrosis Foundation in Canada where she grew up.

He played the CD over and over. I am not sure how many times but I was in coma for 2 weeks, so one can only estimate. However, I can tell you this. When they brought me out of the coma, all I heard going through my head was the song, "The Power of Love". Blaring. In. My. Head. It was like a movie soundtrack playing over and over with no end. I had no idea that this song was played on headphones, on my ears and no one probably adjusted the volume and I was in no condition to do it. To add even more chaos to my world, I was trached. So I could not speak about what was happening and what I could not stop playing in my head. I mean I tried to communicate in many ways, but no one had a clue. They thought I was asking about anything but some song and why the hell was in in my head?!?!?!?

Finally, someone was able to understand my question and when they told me, it made sense. Luckily it did stop after a while but it is a pretty cool moment to associate with a song. Especially on that was very pretty and had great meaning considering love did help me to getting better.

Not even 6 months later, at my nephew's wedding, My father and I danced to that song. I was still recovering and it was my first and hopefully last slow dance with an Oxygen tank. We danced, and my Dad sang it to me. It was one of those moments that was pretty powerful. Maybe they can use that song in the movie soundtrack of my life someday.

After all, it is a love story.

First dance as newlyweds: A whole New World, from movie Aladdin.

September 1, 2001

humility

2016-02-13T14:23:00.002-08:00

I was recently referred by a very good friend to speak at a retreat for mothers. Now, the last retreat I went to, I think I was a senior in high school. I remember lots of crying was involved but as it was a retreat for teenage girls, the crying does not surprise me one bit.

So I barely pay attention to things until they are right up on me. I thought it would be my normal type of talk where I show up, speak and leave. I did not realize I was invited to the whole day. I was not happy. Now, please put this into perspective. I work all week with children. I come home to my own children. My work feels like putting out multiple fires all day long. With no hose. Or worse yet, a tiny dropper and cup of water. And the weather in this region is at all time high of 10 degrees. I like my Saturday sleep. In the dead of winter. Under the toasty covers. Just sayin.

So me, being me, I bitched and moaned when going to bed. I bitched and moaned when getting out of bed. I bitched and moaned over my 2nd cup of coffee. All to no avail. I made a commitment and I was going to keep it. Did I mention praise the Lord I was scheduled to be afternoon speaker. At least that gave me time to think about what I would say.

Now, I know I am not always right about things, but boy was I very wrong in thinking I would not get anything out of today. Within the first 15 minutes tears of cleansing renewal were running down my face. I needed to tend to my mind and my heart, and I could feel it happening here. I have always believed women need other women and never could that be truer then mothers needing other mothers. Just to have someone who knows what it feels like to have your heart walking around on the outside. The vulnerability of loving someone so much that at times it feels as if your heart can burst into pieces. How can you even explain that but to another mother.

Mothers are held in pretty high esteem I think. But, they are also first in line of defense when something goes wrong. The first fight after my Mom died between me and my sisters and my dad heard about it. He was at a loss. Mom always dealt with our issues, he just got to see the good side of us. It is in front of Mom where you can always show your true self. Your authentic self. And yet, never lose her love. Her love will remain strong and unwavering even as she is slapping you upside your head with good reason.

The theme of the retreat was humility. I don't often use that word, but there is a word I use that means the same thing: Humble. I think of that word when I think of how I feel as the recipient of my lungs. In fact, I tell my story from the heart but certain things I always try and include every time. One of them is how it feels to know another family could find something (love, courage, humility) in their heart and soul to donate their loved ones organs after death. That reality humbles me to the core. Especially after I found out how rarely the opportunity for organ donation comes along (Of the 2.2 million people who die each year, only approximately 2 percent of them are able to be an organ donor) then go figure in blood type, size, compatibility and every other circumstance that can stop if from being a success story, and yet here I am almost 10 years later and pretty healthy for most part.

Yep. Humbles me right down to my knees. Lately, it brings me so back down to earth that I openly clarify at least once or twice per speech, I am a human and by no means perfect at all!

SO WHY DO I DO IT? Why do I time and time again submit myself openly and tell this story? I question myself often about that. Especially on freezing cold mornings like today.

And then these two things happened:

1. a woman in audience thanked me for my speech and told everyone she was a donor mom. Her son of 24 died and they donated his organs

. She was beyond grateful to hear of my story and how my life was saved through organ donation.

2. Another woman reached out after and thanked me saying she was squeamish about organ donation but after hearing my talk she has changed her mind. She said now knowing someone who could live a healthy life as a result of organ donation made her change her mind and that it was the right thing to do.

One pebble you drop into pond and you never know the rippling effect it can have.

On yourself and others.

#lattesforlife

Happy Birthday Babies

2016-01-06T17:40:00.000-08:00

I am not gonna lie. Some days I'm still in disbelief that I had twins. The fact that they are turning 12 tomorrow? Forgetaboutit!!!! I joke sometimes that having toddler twins was much easier then having tween twins. Did I say joke? I think it may be true story.

As any other parent will attest to, the days are long and the years are short. I was just taking down Christmas Tree Ornaments, and I mark them with whose it is as well as the year. When I see the year 2007, it honest to God feels like it was just last week. The occasions we celebrated and the moments I tried to capture can never take the place of living it. I have piles and piles of pictures, the scrapbook material to put the pictures in and countless handmade crafts and drawings to put in some sort of order and give to them ~~by they time they get married~~ hopefully when life settles down a bit....lol.

If I were to describe my life as Paul and Sarah's Mommy, it would undoubtedly be proud. My Mom used to sign our cards, especially the special occasions ones as "Proud to be Your Mom". I have found myself doing that as well. How could I not be? These two lightweights fighters came into my world barely weighing less then 2 pounds with the intensity and drama that I could never match in my acting days. The first time I saw them, as tiny as tiny could be and still have every finger every toe and every organ and brain....just super super tiny, I almost fainted. The immense guilt I felt as first was indescribable. My brain was not able to process the premature birth and my heart could not handle the feeling of helplessness. In the end my body took the beating from all that and CF and landed me in a coma for almost 3 weeks fighting to live, to breath. However, when I came through all that and saw my babies again, my pride was as intense as my will to get them better and onto a normal life.

When I present my story in support of the Gift of Life, the hush always falls over the crowd when I say that my babies were born weighing 1 lb and 12 oz and 1 lb 9 oz and almost 12 and 11 inches long. 26 outta 40 weeks. That is no joke. There were babies with more time spent in the womb that did not survive. There were doctors who almost promised me a lifetime of disability for my both babies.

We are a regular family now for the most part. That is just a nice to thing to be. My children go to school, have homework and tests, and worry about things most kids their age worry about. I try and put that all in prospective, but like I said, I am a regular old mom. I embarrass them by dancing in supermarket or singing in car. I'm inappropriate at times, all the while telling them to hold their ears and do not do as I do or say as I say. I hurt when I see my children hurt, especially at the hands of another child...or worst, each other. And my pride in their accomplishments is such that I want to shout it form housetops but Beverly Goldberg I am not (at least yet ;)

So, Paul and Sarah. You may read this blog someday. I pray you see me for what I am. I am a woman who always wanted to be a Mommy. I had dreams and hopes and fears and worries just as you do now. But if you could see yourselves through my eyes, as I see you, you would see two normal well adjusted kids. You would hear the sweetest voices ever that you both worked so hard to find. You would watch and be amazed every time I saw you run, or dance or hop and walk. You would enjoy making you two some of your yummiest food, happy that you are developing a taste for foods that are healthy and nurturing for your body. You would laugh at the crazy antics you 2 still manage to get into, most of them involving our pets or animals of some sort. You would listen to two kids who are navigating a tough road but who use their brains and their hearts to make well balanced choices. And most of all, you would smile though tears as you watch your 2 beautiful babies develop a relationship with their God and honor and respect him and all Children of God.

There is nothing more to say but go get em kids. You got this and you the 2 toughest kids I know. You proved that before you ever left the hospital.

Happy Birthday.

Proud to be your,
Mommy

diaper of a preemie 26 weeks.
and it was too big for them.

Taking Care

2015-12-08T14:00:00.001-08:00

I am a caretaker. Besides my part time job as a professional patient, I take care of people. My children are a given that I am their caretaker. But I mean when someone, especially in my family has a medical crisis, I take over. I recognize this, and have to stop and remember that often times I volunteered ~~and by volunteer no one else did~~ for the job. When my Mom started a slow decline with age and health, I put aside quite a few of my dreams to be her caretaker. Little known fact, that at age 25 I was accepted to study at the Academy Musical and Dramatic Academy in New York City. It was an intense audition process, and an achievement to be accepted. I'm not going to totally blame my family situation, for there was a big part of me that was afraid. I think I was afraid to stand up to my Dad and go take that chance. I have no real regrets for I do believe my choices led me to today, in a pretty happy spot. I do have those moments though of wondering what would have happened if I went there....cue Tony Acceptance Speech....

My Dad has been having some health concerns over the last 8-9 months. Maybe because I do speak the medical lingo and maybe a bit because i do play the role of hero in my family, I am know his primary caretaker. I'm not going to sit here and pretend it is not without its challenges. I am a mother of 2, I work and have numerous other responsibilities the least of which is my health. Nor will I pretend I am the happiest camper getting up on days off and driving down the city with 2 bored but really patient kids for more hospital tests and visits in addition to my own. I have had some sadness, anger and downright frustration at the predicament of it all. Partially, because it reminds me so much of over 11 years ago, when I would go down to a city hospital every day to basically watch my Mother die, all the while trying to maintain a healthy high risk pregnancy. You think you make peace with the past, but there is always something that can remind you.

It's not all bad. Spending time with my Dad is something I cherish especially as the aging process competes with time. The look of pride on my Dad's face when I use my connections at HUP to get him in with one of the top lung doctors is priceless. I do feel like in some small way maybe I am paying him back for all he has done for me. The lunches we share are interesting and I smile not out of delight but to stop my scowl from forming when he tries to balance a full tray of food and get into the wheelchair. Or just dealing with the people who butt in front of us while waiting for the elevator because he is using a wheelchair. Or the look of annoyance from other patients as I try to maneuver his wheelchair into way too small waiting rooms. I smile through the tears because what else can you do. I try and remember an adage we use on the Patient Family Council on which I serve as board member.

BE KIND FOR EVERYONE IS FIGHTING SOME SORT OF BATTLE.

Never are truer words spoken then in a hospital.

underdog

2015-10-31T09:47:00.001-07:00

Living in the generation of facebook-isms is not easy. You know, facebook where you wake up every morning and someone has inevitably posted something like "today is the day to go out a make a difference.." Oh ok, I can barely pour the cream in my coffee and suck it down before forming a coherent though but let me start a soup kitchen out of my garage...sure thing. Per the sarcastic ass I can be I follow the Unlawful One site where they pretty much post what I'm thinking but polite company prohibits me from speaking out especially the one "Yep, checked pulse, still crazy!" Although everyday closer to menopause is not stopping that filter as often as it should!

Anyway, I have been trying to focus on one word throughout my yoga practice recently. It helps bring my mind back if starts to wonder and helps me reflect on the meaning of the word and how it pertains to my life. Yesterday, that word that popped in my head and I used was gratitude. Not the hokey word like Oprah used way to often. (of course she can practice gratitude while counting her million dollar bills....) It was just simply the word gratitude and I started 90 minutes of yoga fire not knowing why that word or where it was going to take me.

This is where it took me. It made aware of how grateful I really am for my body. My body of 44 years that has not had the easiest genetic qualities bestowed upon it, but it is my physical being nonetheless. I could not control what happened when in formed in my mother's body. That fate was sealed. I can not control the symptoms and disease process it goes through on a daily basis. But I can be grateful that it is mine. Wha wha whattt you say? Grateful for CF? How could you be grateful for that?

Here is the thing though. If I never had CF I would not know the sweet taste of success when I complete a 90 minute Bikram class and feel more energized then when I woke up. Without the daily fluctuations of my blood sugars and mucus issues I may not be so in tune with my body that I can actually feel and meditate on those areas of my body that do cause me stress and pain. I can control it and I can heal it. Like it or not this is the body I have been given. Yet, my body is not the whole of me. My brain, my soul and all those thousands of other qualities, they take me beyond a crappy genetic disease. They coordinate to make a unique person. We all have that capacity to overcome adversity.

There is one adage I read on facebook, and I actually do really like this one. It said:

LIFE IS 10% WHAT HAPPENS TO US AND 90% HOW WE HANDLE IT.

That is something everyone needs tattooed on the inside of their arms. My math may be fuzzy but I am pretty sure 90% >10%. We can not pick out of life the shiny happy things and omit any of the sadness or tragedy. It is not how it works. But that 90% leaves us so much room to explore and find the tools to help us when we have to travel down those roads. Do we use humor? (check) Do we use prayer? (check check) Do we search out others ?(check check check).

I have said it before and I will say it again and again. Resilience . It is the tool we all need to get back up and get in the ring. This ultimate Philly girl believes in the Rocky story. The underdog can win.

Doing the Rocky pose on the Art Museum Steps September 1, 2001

A Beer and a Laugh

2015-10-20T14:34:00.000-07:00

Today I had yet another look into my body. Or rather doctors had a peek, I was in a nice sleep. It always frightens me a bit how I can be all awake one minute and out cold the next, waking up with no recollection whatsoever of what happened. I guess it is better then the alternative of waking in middle of procedure....

While I was waiting to be brought back I could overhear the man next door talking with his wife. It seems as if he may have a liver tumor and they were doing more exploration to see what it was all about. He was telling his wife how he didn't tell his daughter nor his friend what was exactly going on just yet. It reminded me of my own mother when she was first diagnosed with breast cancer. I would not utter the word cancer to anyone. It was like if I said it, then it was real. Not saying it however, did not stop what was to be and actually I am proud that my Mom beat Breast Cancer (it was not what took her life in the end although the treatment for it did wreck havoc on her already frail body). I think back a lot of how my Mom was about certain things. I like to say it was the Irish in her...."keep your worries to yourself and keep moving along...". I'll never forget the day we buried her the number of people who came up to us truly saddened that Mom had lost 3 babies (their names were on the gravestone). Maybe they knew and forgot because Mom was not one to go around crying her losses and hardships to everyone. She would rather have a beer and a laugh. (again the Irish in her....lol).

Likewise, when I was waiting on the transplant list I did not advertise it to a lot of people. This was for several reasons. One, I had 2 babies I was so busy taking care of, I did not have time nor energy to deal with the hundreds of well meaning but endless questions and speculations. Second reason, I was still a tad annoyed by some distant relatives after all that happened with the premature birth of my babies. We sent out birth announcements like you would do with any joyous occasion. Their names and birth weights and all pertinent information was noted of course. I received 1 card from one relative and it was more or less a sympathy card. Don't get me wrong I had plenty of joy from many others, in fact more happy than not. But that one card irked me so much. My babies were alive and kicking! Just by the sheer fact that we sent announcements out should have been a clue that it was an occasion to be celebrated not mourned. I know, I know...let it go....let it go...and I have, mostly, maybe, but it was something that pained me. I wasn't looking for a gift, just tidings of joy and so forth. Well, like they say consider the source. So, with my upcoming transplant I chose to keep it among close relatives and friends, and everyone else could find out when it happened. Boy, I would have payed good money to see some of those reactions.....she had what?!?!?!

Last, and this is the most important reason and why I totally understood why that man held back information till it was necessary. Sometimes, you just need to process. It is stressful to be told a difficult medical diagnosis. Sometimes, it takes everything you have left just to breathe and move forward. Sometimes, it just plain sucks and you want to be alone in your thoughts and prayers. Sometimes, you go to the shower and cry collapsing against the wall so no one can hear the pain you are feeling. Because eventually you will come out into the world and walk among people who will look at you a little differently. For the time being you want to still be you. Not the sick you. Not the you with a diagnosis. Not the you with more appointments and tests and medicines. Just you.

Somewhere as a child my mother had cut out a saying she found in a CF brochure. It said:

"I am Kathy Person not Kathy Cystic."

Pretty much says it all.