Monday, July 15, 2013

Happiness is NOT being able to find a Hallmark card to fit the occasion!

I recently found myself walking along rows upon rows of greeting cards at the local Hallmark store. The hunt for the perfect card was on, as I was in desperate need of a card that was the right combination of sentimental, sincere and heartfelt, without bordering on being too mushy and sensitive. 

Where in Hallmark do they carry the “thank you for saving our son’s life - repeatedly, we are sorry to see you go, you will be missed, best of luck with your new endeavor, you will always be in our prayers”? It seems like the color coded captions along with card shelves neglected to highlight the exact category that I so desperately needed. All of a sudden it dawned on me - we are incredibly blessed to have this relationship in our lives that cannot be clearly defined by a Hallmark card. It’s truly a blessing NOT to fit into a color coded caption. It is an attestation to the uniqueness of this relationship and a testament to the fact that this IS a one of a kind bond between doctor and patient family. 

One of Jordan’s specialists is moving out of state. This is not just ANY physician, this is the very medical professional to whom we attribute having Jordan with us today. He specializes in Jordan’s main medical condition and he has been our alpha-doctor, our medical quarterback and our family’s referee for almost five years now. He was one of the attending physicians when Jordan was at his worst. His perseverance, knowledge, expertise and ability to call in the right specialists at the right time made such an impact on Jordan’s outcome - five years ago and every day thereafter. This man was our family’s beacon of light when we were in the darkest valley of our lives. 

He spent countless hours sitting by Jordan’s bedside with me. He would brainstorm out loud - obviously mostly to himself, but allowing me an incredible insight to the diagnostic process of a medically challenging case such as Jordan’s. He had theories that ended up just being theories, but he also had ideas and suspicions that were proven to be correct and rather “spot on”. 

He has continued through the years to be our go-to medical guru for all things Jordan, even for issues that are not directly related to his expertise and specialty. Our pediatrician has gladly taken a step back and let this doctor dictate when, who, what and where with regard to medical tests, specialists and medications. 

Our quarterback has always been available to us - day or night. I remember Jordan’s first fever after our last hospital discharge. I was flying down I-95, rushing home to be by Jordan’s side, when I called our doctor on his cell phone. He answered immediately and his orders were “give Jordan lots of love and pour yourself a glass of wine. This is the first virus since his initial illness. Expect that it will be worse on you than on Jordan”. He texted us back at 10:00pm the evening Paul and I both gave Jordan his nighttime medication. We double dosed the little guy, in spite of his objections that “dada already gave me this medicine”. The doctor’s recommendation was to skip the morning dose and “not have dad do mom’s job again”. So with a light mood, deep knowledge, professionalism and an incredible amount of concern for the patient, he has pulled us through the toughest of times and brought us safely to shore on the other side. 

How do you properly thank a man like that?! His tireless dedication to his patient families is not just “in a day’s work”, it is truly unique and a blessing to those lucky (or unlucky, depending on which way you look at it) enough to cross paths with him during their time of need. Words escape me when I try to think of ways to express our heartfelt gratitude. No gesture is big enough to symbolize our appreciation for all his hard work.

It is with a heavy heart that we have an appointment with him for the last time this week. But it is my sincere wish when he sees Jordan thriving as he is, that he will be inspired to continue serving families affected like we were. I hope he will realize that he changed our lives - for the better - for ever... what more is there to say?! 

Times like these make you realize and appreciate that real life miracle workers and heroes do not fit in a Hallmark sentiment. Their work cannot be celebrated with a canned speech, nor can their resolve to seek perfection be recognized with an assembly line created greeting card. However, honoring Jordan and respecting his life’s journey is simply stated the only way to celebrate this doctor’s hard work - each and every day. 

Thursday, April 18, 2013

Happiness is in Eye of the Beholder

 We all have our own currency of happiness. What makes me happy, may not make you happy, and it may very well not make someone else happy – unless they keep an open mind.   

We count our pennies, dimes and quarters of happiness until we have whole dollars – big chunks of unadulterated pure bliss. Some of my friends appreciate material goods, collect them and gather enough to reach a euphoric state of elation after a successful shopping trip. Others revel in success, good old fashion elbow grease until the mission has been accomplished. They proudly display their fancy corporate title, name drop when telling stories of their latest travels and three course business dinner meetings. But those are not my measures of happiness.

So what is my happiness currency? Well, a recent trip to Starbucks made me think about it a little deeper. I was waiting in line when I overheard two friends talking. They were discussing a mutual friend who had just had her second child. The child was apparently born with several medical issues and would require special attention for the rest of her life. They expressed sympathy for the new mother and even went as far as to say: “I feel so bad. She wanted a baby so badly and then THIS happens to her.” I had to exhibit great restraint in order not to jump into the conversation. But I felt that eavesdropping was a grave offense all in its own, so there was no need to draw any unnecessary attention to myself. But I left there wondering if that is how people truly feel about families with “special” children.

Do people pity those of us who are on a medical journey with our kids? Do they think our lives are less happy because of our kids? Wow – that thought baffled me, sent an electric shock through my body. Never once have I ever thought that our lives were less happy because we travel a road filled with doctor appointments, worries, hand sanitizer, precautions, medications, concerns and uncertainty. It never dawned on me that others view us as a bunch of sad saps because of our child’s health.

We are blessed to have met countless of fellow “medical parents”, families who also have children with chronic medical conditions of varying degrees of severity and rarity. One common message from each and every one of those families has always been that their lives are not any less happy because of their special child. In contrast, they have happiness BECAUSE of their child.

Is life more hectic with a medical child? The answer is “of course”. Do medical concerns drain you emotionally, financially and eventually put a strain on every relationship in your life? You bet they do. BUT, having a child who requires extra attention makes you appreciate life and teaches you to see things in a whole new way.

Life and happiness are no longer measured in big currency. You cannot wait to collect enough happiness coins to make a whole dollar before you crack a smile or celebrate a mile stone. Our children teach us that every happiness coin, every penny is a cause for celebration. While others wait to praise the Lord until they earn a promotion or can afford a new car, we celebrate each day as if it was an annual event. Every ounce gained, every quarter of an inch grown is documented. Every smile, swim in the pool, bike ride or completed Lego project are greeted with a “high five” and an “atta boy!” We “medical parents” know how to party and live life.

At the risk of using corporate speak, we dial life down to a granular level. We do not live in a macro world, our lives are not viewed from the top down. Our vantage point is from the bottom up. We enjoy the world on a micro-level, taking pleasure from every little tiny morsel of happiness we can scoop into our hands and hold close to our hearts. We are the most thankful, thoughtful and caring people, because we know first hand how frail life can be.

So when you find yourself talking to your friends about someone with a special child. Please tell the world that they were blessed to become that child’s parent. Medical parents do not want pity we may need a hug once in a while, but not pity. So when you are ready to live life to its fullest, make friends with someone who has a special child, because our children ARE our happiness. 

Thursday, October 25, 2012

Happiness is Enjoying a Flat Tire

I am proud, NO - that is not a strong enough word - I am ELATED over the effectiveness of my “Happiness is” project. I was recently rushing around running errands after a hectic Monday at the office. My husband was traveling on business, so I had to hurry home, throw on my Super-mama cape, wrangle all three kids into bed after feeding them a somewhat healthy meal, giving them their baths and preparing their backpacks for the next day.  I quickly stopped off at Toys R Us to arm myself with some small toys for the kids, aka bribery for good behavior.

As I pulled into the parking lot of the 8th Wonder of the World I noticed that my “check tire pressure" light was on. A quick lap around the car revealed a good size nail in the wall of my rear tire. The air leaving my tire was whistling Dixie at me, in a mocking kind of way. “Super-mama powers ACTIVATE”. This is one of those situations where you can choose to crumble to the ground, kick, scream, cry, call your husband who is miles away and proceed to waste precious time and energy on feeling sorry for yourself, because no one else is. Or you pull yourself together, call roadside assistance, arrange for the nanny to work a little late, and THEN you call your husband informing him of the situation. I chose the latter.

I had a few flashes of self-pity as I sat down to wait for help to arrive. At that moment I started talking to myself. That is right I was the crazed woman in the back of the parking lot carrying on a conversation with myself. I said “think of a “Happiness is…” quote RIGHT NOW. Find one thing to be thankful for in this particular situation”. I decided that I was lucky not to have my kids with me. They would not have been happy having to wait an hour for the truck to arrive, and they would more than likely have talked me into going back inside Toys R Us. Turning the situation into a “Happiness is” observation felt like an instantaneous emotional facelift. 

I started posting “Happiness is” themed status updates on Facebook a few years ago. The idea started one night as I was walking up and down the bedroom floor rocking our middle son to sleep because of his teething pain. I could have chosen to be irritated over the lack of sleep and having to deal with a cranky baby. Instead I realized that this baby was thankfully healthy and not crying because he was in any life-threatening pain. His discomfort allowed us quiet one on one cuddle time that we otherwise would not have had. So I thought to myself “Happiness is teething at 3:00am”. Since then I have made it a point to try to turn everyday situations into moments of happiness celebrations. It is not that our lives are void of any disappointments, unhappiness, tears or frowns. However, it is because of and in spite of life’s ups and downs that we celebrate every small moment of happiness. I call it my “happiness therapy” and it works!

Instead of whining about a flat tire, I spent an hour cleaning out my wallet, my purse, making lists of things I wanted or needed to do. When I finally got home, an hour and a half late the kids were thrilled to see me, and they LOVED their “breakfast for dinner” as my last minute almost-healthy-meal solution. Oh, and they got their toys – the bribery worked and they were in bed half an hour earlier than normal. Ahhhhhh - Happiness! 

Monday, October 15, 2012

Happiness is a Word that Starts With "T"

As a family of five with three boys ages six, four and one you have to check your modesty at the door. Every day we are introduced to a new list of “potty words” that should be added to the latest edition of Webster’s Dictionary.

Our oldest boy must have realized that it is breast cancer awareness month when he agonized over what to bring for show and tell on Monday. The letter of the week was “T” and he wanted to take something cool, at least in the eyes of his kindergarten peers. We went through the obvious choices of Triceratops, T-Rex and Tiger. We even branched into the more non-conventional ideas of Toilet paper, Trash bag and Toothbrush, but none of these suggestions were met with the enthusiasm with which they were presented. 

All of a sudden, Jacob’s face lit up like the sky on a moon lit night. With enough emotion and drama to almost earn him an Oscar or at least a Tony, he said “I have a word on my brain, and it will not go away. I cannot stop thinking about it. I think it starts with “T”.” Both my husband were relieved to think that this never-ending parade of items starting with “T” could finally come to an end. Jacob gathered all his courage and proudly exclaimed “Titty!”!

Silence fell upon the room. As on queue, without a word spoken between us, both my husband and I had blank expressions, suppressing any hint of amusement. We ever so calmly said “that is not even a word, honey. Let us think of something else.” Jacob eventually settled on bringing a white tiger and a Transformer car to school.

As his mother, I certainly hope the word that would not leave his brain has been suppressed for at least another 10 – 15 years. 

Monday, May 30, 2011

Happiness is...

Looking forward to something so much that time stands still. We are currently counting the days until our next ultrasound – 14 left to be exact. This ultrasound will tell us the gender of the baby, which is secondary to some of the other big questions we will have answered. We will learn if the baby’s anatomy (inside and out) is appropriate for the gestational age. In other words – does the heart have all the chambers and plumbing necessary to function properly and are all the other organs in working order and in their right location! 

I have been playing tug of war with the hands of time since the appointment was scheduled. I am simultaneously excited and anxious. Worried yet cautiously optimistic. I want to hear the results NOW, however I hesitate to be overly elated in advance. This is the Ying and the Yang of this pregnancy for me. I no longer take a healthy baby for granted. Regardless of all the prayers I have said, all the right things I have done, all the soft cheeses I have turned down, extra naps I have taken, I realize that the health of our baby is not fully determined by my actions. It is a mind-numbingly helpless feeling.  I know that I have to continue to take good care of myself and my unborn child to give him/ her the best start in life. At the same time a lot of uncertainties are left up to genetics, chance, good luck, bad luck, dumb luck and God’s will. Whichever way you look at it – Que sera, sera! (What will be, will be)! 

When faced with a challenge as a little girl my mom would always make me take a step back from the situation by asking me “What’s the worst that can happen?”  I have recently asked myself that very question while I lie awake in the middle of the night due to pregnancy-induced insomnia (aka excessive worrying).  My answer to this very question is incredibly comforting, and the only thing keeping me sane as I wait for the next two weeks to pass.

What is the worst that can happen? Worst-case scenario is that God grants us a child who will rely on us for its comfort, health, happiness and wellbeing. But wait, that is every child!!! Every little miracle born NEEDS its parents (biological, adoptive, plural, singular, two moms, two dads, two sets of moms and dads, grandparents) regardless of the family situation every child needs someone to love and nurture him/ her. Some children may just need a little more attention in one way or another! We CAN do that! We HAVE done that! We ARE doing that! All of a sudden worst-case scenario does not seem so overwhelming! Regardless of the results we get in 14 short days, in less than 336 hours, we WILL love our child and he/ she WILL complete our family – just like each of our two boys do every single day!  

(I believe a few minutes have passed since I started writing this... a few minutes closer... and I continue to happily wait!)

Thursday, May 26, 2011

Why We HEART Happiness! Jordan's Story

2008 was a tumultuous year for many. The stock market and real estate markets tumbled. Aggregating all the financial losses sustained worldwide would never come close to the great loss our family suffered. We lost my granddad and dad unexpectedly within 6 weeks of each other. However, we saw light at the end of the tunnel – baby Jordan was due in late November 2008. His arrival would mark the turning of the bad luck tide for our family. Everyone put a lot of hope in his birth. We needed the breath of fresh air that only a new baby can provide. 

Jordan Douglas was born on November 24th at a healthy 9 lbs 7 oz. He was beautiful, calm, sweet, and ate like a champ. We were discharged on Thanksgiving morning, which was just another sign that our bundle of joy was the complete package of hope and new beginnings. On day two of our happy homecoming Jordan felt a little too warm for comfort. Our baby had a fever, a low-grade one, but a fever nonetheless. I quickly learned that infants with fevers earn a direct trip to the Pediatric ER.  One lumbar puncture later we were faced with the first doctor/ parent meeting of many to come. Jordan apparently had viral meningitis and was immediately admitted to the Pediatric ICU (“PICU”). He was at St. Mary’s PICU for eight long days with mama at his bedside, while dada was at home taking care of big brother Jacob. After yet another lumbar puncture the doctors deemed that his infection was under control and was no longer a threat to his life, so a second hospital discharge was in our future.

We were thrilled to once again have our little family reunited. Life moved in slow-motion as we adjusted to being a four member family. But even this quiet bliss would come to a halt two days later, when Jordan stopped feeding at 9:00pm and refused to eat for the rest of the night. The morning of December 5th Jordan went back to the Pediatrician’s office so he could listen to his lungs. Jordan had started breathing slightly labored over the past day, and in my hormonal postnatal fog I thought that he might have caught an upper-respiratory bug at the hospital. The Pediatrician took one glance at him, had the nurse call 911 and grabbed a tank of oxygen in his storage room. We were rushed by ambulance back to St. Mary’s Medical Center where they put him on a respirator. An x-ray revealed that his heart was enlarged, which was more critical and complex than they felt comfortable treating there. We were airlifted to Jackson Memorial Hospital at the University of Miami later that evening. I flew with Jordan in the helicopter, while Paul raced down I-95 with my suitcase packed for an undetermined amount of time.

A crystal ball at that crucial time would have told us that we would spend the next six weeks in the PICU. I moved into the Ronald McDonald house on campus, but sat bedside by Jordan all day and most nights. Paul and Jacob held down the home front and came down to visit us every chance they got. Jordan was on the roller coaster ride of his life, some days he was cruising along only to be caught off guard by a huge dip in the track. There were days and nights when the nurses and doctors cautiously celebrated his small victories, but reminded us that our little boy was very sick. Jordan’s chart grew thicker each day and included big words like Viral Myocarditis, Dilated Cardiomyopathy, Pulmonary Hypertension, Pulmonary Hemorrhage, Endocarditis, Primary Immune Deficiency, and Yeast Sepsis. He was intubated for four weeks, two of those weeks spent in a medically induced coma on paralytic medications, had a biopsy taken of his heart, was the topic of conversation at the weekly PICU conferences, but for each passing day he was loved more and never left alone in the hospital. Prayers from around the globe spanning across every religion were sent to Jordan. Congregations in churches and temples gathered and prayed for him, friends and family mentioned his name in their prayers at night – and throughout the day for added effect. I specifically recall at least five occasions where I begged Jordan to hang in there, promising him that life would be beautiful and special if he could only pull through that night. He proved to be a fighter and in the end a winner. 

Jordan had his third and final hospital homecoming a few days before his two-month birthday.  He was discharged on a medication schedule that gave me a pharmaceutical crash course. Jordan required four hours of anti-fungal infusions daily for six weeks, weekly antibody infusions for six months and daily medications seven times around the clock. His social calendar included ten different specialists, most of them located at the University of Miami. Jordan and I spent countless hours in doctors’ offices, which we turned into play and special mama and Jordan time.

We all learned that “knowledge is power”; we followed instructions, prescriptions and recommendations. We learned medical terms and conditions and we made life-long friends throughout the heart community. We embraced our life and adjusted to "the new normal". Days turned into weeks, weeks turned into months, and now we find ourselves over two years out from Jordan’s diagnosis. Jordan is a thriving, fun-loving and charming toddler. He has no mental or physical deficits and he adores his brother, mama and dada. The world did NOT come to a screeching halt the day Jordan got sick, life did not become less enjoyable after his diagnosis, on the contrary we are now a stronger family than before. Our two boys are learning to live life to its fullest, and we are all finding HAPPINESS in even the smallest and simplest things! WE HEART HAPPINESS!