A close friend this week was concerned when my daily updates did not occur first thing in the morning, as is the norm. I believe the exact quote was “I was upset when you didn’t answer your cell and none of the Buddhist crap was posted.” Hmmmm.
It’s funny to me how often people comment on my social media posts being too positive. Too positive, too Pollyanna, too saccharine perhaps. While many say they enjoy the inspiration, there is a definitive desire for the snarkier side of my humor. In discussing this yesterday I considered a hash tag of #justsayin as a collection of my bitchier commentary on life as I know it. Is there really a call for me to add this darker turn? This side of me is reserved for those I know very well, and whom I trust to see the balance – for those who know my story and have the context
As my #justsayin experiment commenced throughout my day yesterday I came to a very important conclusion. To quote Aaron Sorkin, “you can’t handle the truth.” My black-hearted truth of all I am, have been through and how I feel is beyond the scope of public consumption. I remain very positive in my social media for some pretty clear professional and personal reasons, most importantly that the positive view is my truest voice. My positivity is also a testament to my truest belief that everyday is a choice, how we act and react is within our control. If I can let my past experiences remain in the past and not dictate to my present and future, not be my identity, then I can be a person who has unlimited potential.
My public persona will remain decidedly a positive one – for those looking for the darker, bitchier, more humorous and perhaps funnier side you will have to make the time to spend in person – #justsayin.
The moment you stop waiting for others to treat you in the same way you treat them.
When you realize that when it comes down to it some people will always choose to do what is best (most convenient, most fun) for them.
When you experience that the people who have the most will most often do unimaginable things in the name of money and status.
When you expect support and encouragement and find yourself alone.
When someone you thought would always have your back moves on to a trophy wife, trophy friend or trophy life.
That is the moment of change, of choice, of deciding. Sometimes you choose to get back in line and ask for more.
Sometimes you choose change, you choose to stare down fear and move forward listening to your own voice. No longer waiting for approval, directed by the opinion of others, you see a path you didn’t realize was there. You experience catharsis.
When you are brave in the face of fear, when you realize that keeping your own counsel isn’t loneliness but wisdom, when you accept the challenge to live the best version of the life you alone were meant to live, you will know success.
Full disclosure – there is no book, class, movie or study that will prepare you for parenting. There are suggestions, ideas, outlines and blogs – ultimately this is a hands on job. Each and every child is born with their own unique personalities, needs & wants, and that is why every experience of parenting is a new frontier.
The best advice we received from our Lamaze instructor was applicable as each visit to the hospital began – take a good look around before you leave because life as you know it will never be the same. As a planner extraordinaire, each of my three children have taught me that there is no planning that will ever make parenting a follow the dots proposition. In fact my experience as a parent with each one of them was in essence them laughing in my face and challenging me to up my game. I assure you my husband felt the same way.
What I have found is that there are some concrete ideas that form the foundation for a family, once in place being consistent allows the room for all the creativity to flourish. Once your family has structure in place, you are all more confident in pushing boundaries a bit without fear. The most important part of parenting, starting out, is that you realize it is a lifetime commitment. If you don’t understand this before starting out you are like the bride who is all about the wedding, and didn’t give much thought to the marriage. Parenting is not for wimps, it is hard, it will kick your ass in ways you cannot imagine. It also has the miraculous ability to make every second of even the depths worth it when you get it right.
I think the reason I am ready to share this parenting book now is that I have three children I can now consider “fully baked”. They are all ready to head out on their own, and we are ready to let them do so. Along the way we have been told how “lucky” we were to have such “easy” kids. The Family Program will share just how much hard work, dedication, heartache and consistency went into making it look that easy. Most importantly, I am happy to share when I got it wrong. I think the unkindest thing you can do to a parent is to make them feel that everyone has it figured out except them. We are so tied into making sure that by all appearances we have it under control that we are afraid to admit that at times we have absolutely no idea what we are doing!
I want this book to serve as the kitchen table, the front stoop, the place where sharing happens and advice is given as it would be between family and friends. I want this book/blog/page to be a place to learn, to feel good about yourself and to raise kids who will grow up to make the world we live in a better place.
When I am teaching The Family Program, I am often asked what is the best age to start teaching about acceptance, at what grade should you introduce the concept of others in the world that are different from us. In actuality we all begin learning these values as soon as we start understanding communication, as we are taken out into the world, as we are introduced to the world around us.
The amount of information babies take in in their first year is astounding: the basics of who to trust, understanding what you need and how to get it, learning what makes you happy. The drive for information as children become verbal is like a thirst that cannot be quenched. We all start out like this – how we choose to continue, at what level we strive to learn more is directly affected by the response to our needs at this developmental time in our lives. A child that is listened to, has their questions answered and is engaged in activities at home and out in the world around them will thrive.
If you are wondering when to “start to teach” understanding about those different from ourselves, you have already missed many valuable opportunities. There may also be an underlying construct that “different” applies only to traits such as race, creed or sexual orientation. Children learn compassion and empathy when they understand that we are all different in many ways aside from the obvious – we have different feelings, gifts, talents and personalities. Learning to respect these differences in our homes sets the tone for a person who goes out into the world with an accepting attitude for all.
I remember clearly when our oldest daughter first asked about why people have different skin color. We were not in the city, or on vacation or watching something on tv – we were coloring together with the amazing box of Crayola 64s (with the sharpener built in!). Drawing a picture of our family – Mom, Dad & Jackie. She was about two and a half and wanted to know why she and Mommy were “peach” and Daddy was “sepia”. My first reaction was confusion, then laughter. How perceptive that she knew that to make our family picture look like real life she needed to change crayons. I remember sharing that the world is full of so many amazing colors that sixty four was just the beginning. That people, animals, flowers, the sky, water and so on and so on came in so many different colors that no one could name them all.
That lesson that the world contained more possible colors than even the Crayola 64 was huge for a little girl, and one we talk about to this day. It’s family lore! On vacation I have been known to go from “peach” to “carnation” with too much sun, “apricot” with the right amount of sunscreen. Dad is “sepia” and can tan to “brown”. Was that the moment she became aware that there was so much more to discover, who knows? I do know that a child growing up seeing the world as a wonderful canvas of color, rich with opportunity, is a good thing for all of us.
We were stuck in a holding pattern until my insurance company approved the iron iv infusion. At least a week of phone calls and tenacity on my part finally got the approval. It was so very frustrating as it seemed as if I they weren’t understanding just how important the treatment was to me. My first iron infusion therapy appointment on November 28, 2012 was nerve wracking for me, as it is administered in the same infusion suite where chemo is delivered it was a quick reminder just how fortunate I was to be here with a plan. The infusion has to be done where they are prepared for any allergic reactions and can act quickly to address adverse side effects, the surroundings remind you that this is not something to be taken lightly. I was searching within and without to find a way to calm myself, to focus, to visualize healing taken place – and then it happened. As the nurse approached me with the rather large syringe containing black liquid (my iron) I immediately saw her coming at me with Adamantium- I knew as soon as I started getting that force into my system I would be strong again and be ready to take on the world! Okay, so there was a slight moment of panic when I proved to be a bit allergic to Adamantium and started itching all over my body. I did get to see just how quickly the doctors, nurses and aides could get a crash cart over and start injecting benadryl into my IV. Once that passed I went back to my visualization, made even stronger by a dose of benadryl.
In case you are not familiar with Adamantium, in the Marvel Comics universe it is an indestructible metal alloy best known for being the substance bonded to Wolverine’s skeleton and bone claws. I saw the iron flowing into my body, bonding to my blood cells and bringing me strength. I saw myself running again, being active, being strong. Those images helped me hold on and get through the process. I left feeling pretty lousy, beat up and achy, happy to be able to make it home before I started vomiting. We had to call the doctor so he could prescribe anti nausea meds, with that I was finally able to sleep a bit. The next day I felt horrible, but kept revisiting my visualization and using the power of positive thinking sure that each day I would feel better. I knew I had one more treatment to get through and I had to believe that this would be the answer for me. Any other outcome was unacceptable.
Those unfamiliar with the importance and healing power of visualization in healing, and with that visualization having a personal power for the patient, tried to tell me that what I really should be thinking about was Iron Man – as the infusion was in fact iron. For me there is only one superhero who could save me – for me that syringe was Adamantium. I had my second of two infusions on December 6, 2012. I always find myself more apprehensive when I know what pain awaits me, when I have a clear idea of just how uncomfortable the getting to the other side of this thing would be. One benefit was that after my last experience I first received benadryl through the iv prior to the infusion – no itching, no creepy crawlies! Also, although I was exhausted and a bit nauseous afterward I did not throw up and was able to sleep it off most of the afternoon.
The next step was the waiting, and as Tom Petty sings, it truly is the hardest part. I would now wait six months and have my blood work repeated to see if this was my cure, my own personal Adamantium. If the levels made it up into normal range, I would then have the test repeated in another six months to check levels again. How often I need to have the iv iron infusion therapy will be totally dependent on how my body absorbs, stores and utilizes the iron injected into my body. Potentially the treatments could only be once a year – I won’t know until time passes. What I do know is that this will be a forever thing, considering all of the horrible things I narrowly avoided, this was totally acceptable.
In the mean time I had a very important goal that my recovery process was based on. Whenever I felt weak, I kept reminding myself that by December 10th my strength would return enough for me to make a very important date. Tenacious, determined, focused and unrelenting are qualities I have relied on to get me through even the most difficult of times. When I set my mind to accomplish something very little gets in the way of me and my goal. Even more so when I had a date to thank the person who in a unique way was part of my healing.
Update: On May 10, 2013 I had blood work done that showed all of my results falling into the normal range. I pride myself on never being defined as “normal”, but in this case it was wonderful news. As long as I remain symptom free, my next blood work will be in November of 2013 – hopefully I won’t need my next infusion of my super hero cure for quite awhile!
When you enter an emergency room you know how serious you are by how quickly you are taken care of, apparently I was in a pretty serious place. I was immediately given a baby aspirin – I will never forget the look of disbelief when I told her why I had refused one. Heart attack beats irritation to the stomach lining hands down – I now carry a bottle of baby aspirin everywhere I go! A further look of disbelief occurred when I was asked approximately what time the pain started and I answered 1:43 PM. As my receipt for the candles was marked 1:45 I thought that was as accurate as you could get. They were somewhat in awe of my lack of accepting the reality of what was happening here. They also were not impressed when I told them the only thing I had taken was a TUMS. I think the one thing they were impressed by was my seemingly delusional behavior, if you know me well you know the worse things are, the calmer I seem. I was as cool as a cucumber, except for the moments when my chest felt like it was getting stepped on by a giant and alternately when my head felt as if it were being squeezed in a vise. As the ER team did an amazing job of mobilizing, I looked at Anthony and the moment I saw his face it hit me just how bad this might be. All of the things I had been in denial about hit me with brute force, after all I had done to get to where I was in life how could it all be taken away??
A doctor returned with news, bizarre news. So far my cardiogram looked okay, but I would wear a telemetry monitor and have blood enzymes drawn throughout the night to see if that showed a cardiac incident. The bigger issue; however, was that I was severely anemic, so anemic that I needed an immediate transfusion. In my continuing effort to act as if this wasn’t really a big deal I very helpfully told them I knew my blood type was A+, they assured me that they would handle the typing & matching in the lab. My body was not producing enough red blood cells, and the ones it was producing were small (microcytic anemia). This severe lack of iron rich blood limited the oxygen traveling around in my body which in turn limited the oxygen sent to my heart. Prime reason for a heart attack – lack of oxygen sent to the heart. So apparently I had a seemingly non heart attack heart attack – all the symptoms and pain caused by an undiagnosed case of severe iron deficiency anemia. As the doctors explained what steps would be followed to figure out how this happened and how to prevent it from happening again this is what it sounded like to me: “blah blah blah bone marrow biopsy blah blah bone marrow biopsy”. Could I have cancer? Believe me at that moment I was having no problem facing the reality of the situation, and it wasn’t good. The following morning I passed a stress test with flying colors, but there was still no explanation for the anemia. The doctor did add that I was also low on B12, so while we were figuring out exactly what was going on I also was told to add 3000 mcg of B12 sublingually (love that word). After a lengthy chat with a doctor filled with lots of what ifs I was discharged that evening with quite a date card full of upcoming appointments – and a lot of trepidation.
The following weeks consisted of me laying down and going to medical appointments. In hindsight I had every one of the symptoms of severe iron deficiency anemia – most notably an unbelievable urge to chew ice – constantly, by the tray, by the glass, at all times. We knew it seemed weird, but didn’t think it signaled something that could be potentially life threatening. I am one oscopy shy of having had every oscopy one could have (never fear, the final one is happening soon). No bleeding, no explanation for the severe iron deficiency – and no feeling any better. As a final act of avoidance – primarily of the bone marrow biopsy – I asked to see the hematologist first. At this appointment he explained to me that for various reasons a person’s body can stop absorbing iron and that is what he thought was happening to me. Despite a very healthy diet high in protein (60 grams plus per day) and iron supplements (60 mg per day) my body was not taking the iron in. My body had stopped absorbing iron, and when this happens the only way you can get iron is via iron infusion therapy. After having the iron infusion therapy, you then regularly check your blood to make sure you are not running on low. Ideally this is done every six months to a year depending on how your body stores the iron it receives, and from here on in this is how your body will receive iron. Well at least now we had a plan.
According to the World Health Organization, iron deficiency anemia is one of the most common nutrient deficiencies in the world. It can be caused by a low dietary intake of iron, poor iron absorption, or excessive blood loss. Signs of anemia include: constantly feeling weak and tired; short attention span; irritability; decreased performance at work or school; delayed cognitive development in infants and young children; decreased immune function leading to increased illness; swollen and red tongue (glossitis), and difficulty maintaining body temperature. Several groups are at an increased risk for iron deficiency including children and adolescents, pregnant women, women of child-bearing age, athletes, and older adults. Iron: An Essential Nutrient by J. Anderson and C. Fitzgerald1 (6/2010), Colorado State University
Part III – The Adamantium Cure or how I found a way to think positively about someone coming at me with a large syringe filled with dark liquid.
If you asked me on October 11, 2012 how I felt, I would have probably told you I was at the top of my game. Family was great, new job was opening all of the creative doors it had promised, I was working out regularly and I was happy. Perhaps I was more tired than usual, had a little insomnia, complained of a sore mouth/tongue at times, popped a bit more Extra Strength Tylenol these days, and my forgetfulness was becoming a running joke – but other than that, fantastic! Good friends were appearing in concert nearby and it was a great opportunity for a little road trip with my dear friend and travel buddy Joan – an overnight of good food and drink, music, and hotel sleep.
It was a much needed getaway – dinner was lovely, The Midtown Men were amazing, and a long night’s sleep seemed to be exactly what I needed. We started out the next day in high spirits for a little time in NYC before heading home and that is where my excitement unfolded. I was standing in a place of complete happiness when it began – in Tribeca, holding a Laughing Man latte, picking up Sandalwood Vanille Acquiesse candles at Stella. For me this is a personal trifecta! It started as a weird pain in right in the center of my chest at the base of my breast bone, a feeling that everything was tightening and wouldn’t release. If you’ve ever had spasm or cramping in your leg or toe – it was like that. It wasn’t heartburn, it wasn’t in my stomach, it was something I had never felt before. I kept telling myself just to breathe through it and it would pass. Focus on the candles, focus on the candles……
Next, when the spasm would begin it started to travel up my neck into my lower jaw. A very distinct and specific path that was so excruciating it hurt my bottom molars. That’s when I heard the voice that I knew to take seriously – it was Oprah. Specifically Oprah discussing the very unique symptoms women have when experiencing a heart attack. I just kept hearing her repeat “radiating to the jaw”, and thinking this is not happening to me. If you ever have heard stories of people in the throes of a medical emergency doing ridiculous things you probably, like me, thought “what an idiot, who could possibly be that stupid?” – I was and I know now why it is done. Denial. Denial that this could possibly be happening to you, denial that it could possibly be that serious, denial that you may die. Stupid is one of my least favorite words (along with hate and boring), but in this case the only words that could possibly describe my actions are utter stupidity.
I continued buying my candles, the more normal I acted the more normal things will be. I mentioned in passing to Joan, who is in the medical field, that I had a weird pain. I refused aspirin because, due to a previous surgery, cannot take NSAIDS – but did accept a TUMS. Joan suggested going to an ER – I insisted it would pass, dropped her at her train, and drove home via the West Side Highway to The Saw Mill to The Taconic. Called my doctor somewhere around Pleasantville to ask if I should check this out, was told to go to the ER. Drove home and mentioned calmly to my husband that I wasn’t feeling great and was going to the hospital – taking myself. He looked at me incredulously and drove me to the hospital. I believe the whole way I was explaining to him how this really wouldn’t be a big deal.
That last paragraph is humiliating to write, and embarrassment is the reason I haven’t written about this until now. In hindsight I cannot believe I did all of those things that were so irresponsible, and unsafe for me and for others. Denial can make an educated, common sense laden, pro active person a lunatic. The only thing I can say in hindsight is that I was so afraid I was dying I just wanted to make it not be happening.
Part II: When you enter an emergency room you know how serious you are by how quickly you are taken care of, apparently I was in a pretty serious place.
I am a big fan of Adam Grant, especially his recent book Give and Take. This morning Adam’s blog asks who is smarter – the selfish or the generous?
Interesting read. I find that many people that take a win at all costs, let’s turn every interaction into a contest of one upping stance never can get out of that loop. It is always the next deal, the next situation to take advantage of, the number of toys they have in relation to their closest competitor (sibling, family, friends, person at the gas station). These are also the folks that tend to judge kindness as naivety , generosity as stupidity and the choice of peace over fighting as weakness.
The sad outcome I have observed is that that lifestyle leads to stress, unhappiness, bad health, selfishness, and broken relationships. Just as there is always a next deal, there is always another person – friend, colleague, partner, spouse – if the current model doesn’t support your idea of self.
The most successful people I know in all aspects of their life learned early, and practice often, the concept of selfless giving. Whether to family, friends, colleagues, or strangers – giving of time, energy and talent is a foundation of their lives. The giving does not have judgement of status, payback or publicity – they give whenever they can because it is the right thing to do. They will give the hand up, the atta boy/girl, the introduction, the opportunity because it feels good, because they can.
These success stories do include people who have achieved great success materially, who have made true change in their field, and who are considered incredibly smart (if not brilliant on a good day).
The selfish or the generous – perhaps both do arrive at the same finish line in the big picture. Maybe, if you judge by those with the most toys, you might be more inclined to see the person who follows the “me first” motto as a clear winner. However, I believe the quality of a generous life versus a selfish life is richer. I wholeheartedly believe in Karma, and I know that the intangible rewards of a life of kindness, compassion and service directly lead to a life of abundance, freedom and creativity.
Today my son made a decision as to which college he would attend. In keeping with a pact I made a long time ago the choice was his, and truly whatever choice he made would have been fully supported. In fact, a few weeks ago I made sure he knew that even if he decided not to go to college that would be fine too. He went into this decision knowing that the outcome had zero impact on how much he was loved and respected.
I made that pact thirteen years ago sitting in his hospital room. After contracting E. coli 0157:H7, Thomas developed HUS (hemolytic uremic syndrome). I won’t go into specifics, but if you care to look up the details it wouldn’t begin to give you an idea of the horror of watching a four year old succumb to it. The HUS led to renal failure and his first surgery to start peritoneal dialysis. The prognosis was not good, in fact after his second surgery to insert a port – on Palm Sunday – he bled out.
He left us that day for a bit, and as it was happening I found what I needed inside me to say goodbye to my son. I told him the gift that he was to us in the short time we were together, the special love and joy he brought to all who knew him, and the ability way beyond his years to truly care about others. I told God that I accepted the plan for Thomas’ life, but that with all my heart and soul I vowed to support whatever path his life would take if God would see fit to give him more time. When you are in this position your faith isn’t challenged, it’s crystal clear. You know what you believe and with Whom you are dealing with. It’s time to put your words into action – this is one negotiation you can’t go back on.
I believe I passed out and awoke expecting to have my worst nightmare confirmed. I was told that Anthony was with Thomas in the Pediatric ICU – Thomas had suffered congestive heart failure as a result of the HUS, surgery & bleeding. Despite this, it seems that my negotiation skills were up to the task. There definitely was a plan for Thomas’ life that required a bit more time here. Each day the parallel of Holy Week was not lost on us. That dark, rainy Good Friday was bleak indeed and yet infused with a hope previously unknown to us. Like any good epic hero story worth its salt, this one has a biblical happy ending – Thomas waking up on Easter Sunday morning when the Easter Bunny came in to deliver Beany Babies. We had a few more weeks in the hospital, and a long time of visiting doctors ahead of us, but the pact was sealed.
After 25 days in the hospital on May 2, a day we still celebrate, Thomas came home. Ever since that day we have kept the deal. It was much easier when he was little, when his kind deeds and good choices were local. As he got older and asked to travel to Costa Rica to spend time in La Carpio the immediate reaction was fear. After a deep breath, we supported his trip – you know with that whole pact thing we couldn’t really say no.
Today – exactly thirteen years later – Thomas has made a decision to continue his journey at Fordham University. In my heart and soul I still keep that vow to support whatever path his life takes, every step of the way. With much love, joy, and pride I have a front row seat to watch the life of this handsome, bright and kind young man unfold. Best deal I ever made!
As human beings, it is in our make up to want to love and be loved. We seek to belong to a family, to create a family. We work to become a part of the community we live in, to participate, celebrate, and work together to make a better environment for all.
As human beings we deserve to be able to do this freely, without fear, without discrimination. The test is not how others judge the outcome of our best efforts. For every family that succeeds spectacularly, and for every family whose best efforts may fail, there are many families living happy lives, doing their best and creating memories.
The fears that allow one human being to feel they should dictate to another who they should love have been part of every society throughout time. While the fears span a wide range of categories – including race, religion, nationality, and gender – they all are based on one word: different. Even within more narrow parameters where most of the big “issues” are seemingly okay, there are still family members and friends withholding support for personal reasons. If we seek to regulate marriage based on tacit approval of everyone in the couple’s lives no one would ever get married.
I am proud to be a straight ally. People in my life whom I love very much do not have the same rights that I have, that is unacceptable to me. Our children were raised to treat each and every person with kindness and compassion, they were encouraged to give service to others. They were not given messages, overtly or covertly, that some groups are less than, and therefore open targets for prejudice, ridicule or scorn. I am incredibly proud that they have grown into people who see this debate as a no brainer, who actively work to break down these barriers and who are wise enough not to confuse spirituality and faith with rules made by a group of human beings to lessen or exert control upon another group of human beings. People on both sides of the debate point to faith issues, and in some instances tend to paint with a broad stroke. The Jesus I know was pure love and acceptance. In many instances Jesus aligned himself with those who were considered outside acceptable society. He most likely would not be popular, considered highly electable or welcomed into many of the homes of those supporting prejudice in His name. Again, this is the Jesus that I know.
Today is an opportunity for us to move forward as a country whose freedoms and rights are extended to all. Just as decisions that have previously been made regarding civil rights and equality issues were volatile and fought against in their time, this decision is highly contentious right now. I am hopeful that today is one of significant change, and one that we will be able to look back on as a high point in American history.