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.