Tag Archive: NICU


Suffering…

Suffering.  We tend to think about what defines it, what causes one to suffer.  Yes, one could be addicted to searing lungs and numbing pain or the fascination of having tormented one’s mind or the insane game of testing one’s ability to survive extreme conditions.  My interest in suffering is not how I suffer, or what causes me to suffer, but instead it’s the small gleams of wisdom derived from suffering.  Over the past couple of years, I’ve constantly been hearing the phrase “the fundamentals are good”, and although it’s become a laughable and overused phrase, it does have some real meaning. 

Everyone will experience some degree of suffering because suffering is a fundamental order to moving forward (code word for getting old).  Suffering is not pleasant, but it’s a worthy act and without it, I know I’d become stagnant, indifferent, I’d almost venture to say….frozen.  In my mind, peace can only come through understanding who you are and what you want.  You don’t get to that point by not discovering.  I’d imagine the opposite of suffering is being comfortable and the opposite of going forward would be backwards, and if you don’t refuse the status quo, then you accept it.  This is why cycling is such an amazing act of living.  You must go forward, you must deal with the seat, you can’t escape the elements (okay, you can, but you get the point). 

 After being in the NICU for a couple of months, I began to take notice of how the place operated like an orchestra, and eventually concluded that the place was a grand opera.  The machines beep in a rhythm, people move with a sense of character, there’s drama, comedy, and the occasional flub.  There is no one who is without a role.  Sounds like being out on a group ride…and although suffering in the NICU is quite different from suffering on a bike, the opportunity is the same.  It’s the opportunity to learn something about yourself.  I think one disconnect non-cyclist have about cyclist is that we randomly select some stretch of road to become a nuisance to cars and trucks. 

 The reality is that every cyclist is out there searching…searching for clarity, looking for humility, praying for calmness.  Becoming fit is a byproduct of searching, but the bottom line is that we are choosing to suffer.  The NICU was a strange, weird place, not too dissimilar from the lifestyle of an avid, rabid, cyclist.  We suffer, we search, we discover, we learn.  Sounds too simple to be effective, but for me, simple is a good, great thing.

Life in the NICU taught me…

Strength is not defined by physical prowess, mental focus, or a 10-star college education.  Strength, by all accounts, is a combination of patience and stubbornness.  This perfect intersection is called perseverance and every child born early becomes a student and eventually a lecturer.  Life in the NICU is a place full of distractions…from the incubators, to the constant beeps, quietness in the mix of chaos and for the most part each day ends with life and/or death.

 The babies are so small and the hopes so grand I’m surprised that there isn’t a higher level of insanity among the adults.  Life in the NICU also taught me a new lesson about being ready, how to prepare, and how to use a few items for a multitude of needs.  After a few weeks, anything I needed, I carried in my backpack and even today I load my backpack as if I won’t be coming home for a few days…strange yes, but, the fact of the matter is that “you never know”.  It’s the same as having non-perishable goods in the house in the event of a loss of electricity, flood, or need to get the hell out (a jump bag)!

 Back to perseverance.  I don’t know if you’ve ever been in a situation in which each and every breath was important.  Each one becoming more important than the next.  Have you ever talked to someone, but watched their chest or throat instead of their eyes or lips.  Weird, I know…but this is life in the NICU.  The nurses always told us that babies are far more resilient than what we give them credit for.  But this does not take away your wish to take away his or her pain.  I constantly prayed to take Shiloh’s hell…I didn’t feel it was fair for someone so young, so small, to go through so much.  My thoughts are no different today than in 2007, and although I do understand that if Shiloh was here and I was gone, there would still be pain, HOWEVER, I’ve had a very good run as a citizen of the earth, but the NICU taught me that death has no conscious and EVERY life will expire.  Life in the NICU taught me to be prepared but not be scared.    

 I’m uncertain if brave is the correct word to use for the NICU babies, perhaps a combination of motivational phrases would be more appropriate.  What I do know is that those babies are special and the NICU reiterated to me that every person is “special” because of the uniqueness of his or her spirit, and your spirit is your greatest attribute.  

 I’m happy the NICU is not a place all babies will visit, and I’m hopeful that those parents will take the time to understand and appreciate how each and every breath is precious.

March for Babies

I had a great time with many great cyclists at the Bicycle Café last night and as I drove home, I started thinking about this years March for Babies (which is a major event for March of Dimes).  I don’t know how many times I’ve mentioned that this year would mark Shiloh turning 5, but last night my thoughts centered on my very first March for Babies.  It was a very exciting time.  Shiloh was doing well…eating more and pooping more, so things were good.  The staff at the hospital went out of their way to promote March for Babies, but they did it in a fun and inclusive type of way.

 I can imagine that several of the nurses had gone through years of promoting and participating in the event.  I always think about the parents and how tough it is on them as they spend day and night in the NICU.  But the nurses who show up, day after day…they are special.  I know they love babies or they wouldn’t be there, but I know the experiences weigh on them, but they keep coming back.  I’ve come to the conclusion, right or wrong…that March of Babies is a time to celebrate the survivors.  There’s nothing wrong with that, but it’s the central reason I don’t want to participate this year.

 I don’t know why I’m fixated with Shiloh turning 5.  Maybe it’s because it’s the age he’d be going off to school or it could be he’d be playing flag football.  I’d undoubtedly be ruining his hairline because I’d be a horrible barber.  Whatever “it” is…”it” is deeply embedded in my thinking.  I was amped that first year walking around White Rock.  I couldn’t wait to get back to the hospital to Shi, but I really couldn’t wait until the following year to push my baby boy as we celebrated life away from the NICU.  Since then, I’ve participated in the walk, but try to stay as quiet and reflective as possible.

 There’s a lot of joy, deservedly so, and I definitely don’t want to be a kill joy.  I guess it’s been my way of making sure I confront the pain.  I am truly happy for the families who were able to bring their babies home….I only wish they could understand that as they live with joy, some live with pain.  I’m not complaining and I’ll be at March for Babies this year, it’s important to stand tall and move forward because your strength may be the example for someone who is on that edge.

 I can relate to the NICU nurses from the standpoint you gotta keep showing up.  You gotta believe it’s important, and strangely enough not doing it leaves a void that could never be replaced.  If you’re not doing anything on April 21, 2012, think about the babies who didn’t make it out of the NICU!  

 Fort Worth Walk
31 miles away
April 21, 2012

Farrington Field: 1501 North University Dr. Ft. Worth, TX  76107 

Walk Distance: 3.5miles
Registration Time: 8:30 AM
Start Time: 9:00 AM
Chapter: Texas
Phone:  (817) 451-9174

It’s better to travel than to arrive

I’ve been trying to figure out how to share my memories of Shiloh without dragging the energy down lower than a snails crawl.  On the one hand, we shared some incredible moments, but the flipside of each, is a painful moment.

Of course no one wants to read a sad story, but the reality of life is very real.   It’s definitely a balancing act, and some have asked “why care”.  But I think that’s the beauty of spending time with Shi, he makes you want to be better, do more, give more.  And I think you learn from hardship, you grow from your pain.

I remember people telling me that Shi passing was for “the greater good”.  I’m not convinced theres any possible benefit to loosing a child.  Yes, death is a part of life, but I’m not buying that there’s some grand plan!  Now, I will say pain will teach you something about yourself, but the lesson only has meaning based on the value assigned to it.  I’m convinced that every experience has a teachable moment and the value is based on individual interpretation.  Death is inevitable, but it seems as thougb we live as if it’s not.

Loosing Shiloh was a tragic experience, but it taught me a very simple lesson.  It is better to travel than to arrive!  So for me, remembering the pain is as important as remembering the smiles.

Good Morning

I came across the following poem and it immediately took me back to the weekend we thought Shiloh was on his way home.

Good Morning,

I’m so happy you dropped by, your mere presence is the answer to any question beginning with why.  Your eyes opening is similar to the sun kissing the sky,

and who doesn’t enjoy the quietness of the day breaking away from the night.  Yes, there is fright, but living with hope is so much easier than constantly engaging in mental fights. 

 I can’t wait until you see the miracles residing outside, in time we will bid this place a gracious goodbye.  Until that time, we will continue to laugh and delight in the little things that last.    A minute, an hour, a feeding, a bath; changing a diaper and tending to a rash.  Although we are together, there are times we seem worlds apart.  You in your small space and me on the side, but through everything I stand with more and more pride.

 It’s so easy to understand why we love like this, the unmistakable feeling is because you exist.  Comfort comes from enduring pain, because even the most beautiful sky will some day encounter rain.  But every dark sky will give way to a ray of sunshine and the new day will romance our dreams again. 

 I say that it is the morning, but the reality is that each moment with you is my morning. The morning is so pure and filled with possibilities.  The freshness of opportunity brings us one step closer to laying you in your crib.  There is nothing more beautiful than watching the love of your life awaken n your arms, his soul has been meditating, coming into his own.  It’s truly a beautiful world today.

cyclotherapy

People have asked why I chose to ride my bike as a way to honor Shiloh.  I start my explanation with a story someone shared with me when I first started riding 3 years ago.  I won’t bore you with the details, but the moral of the story is there are 2 types of cyclists, those riding away from something, and those riding toward something, and from time to time, those cyclists are the same person. 

For me, cycling has become a great way to get away.  It keeps me grounded and allows me to focus on what’s important.  There are days when being on my bike mirrors days when I was in the NICU.  You can’t loose your focus, you can’t let the pain stop you, find support by talking to those around you.  The bottom line, cycling is a training ground for living life.  Why am I writing about this?  I came across a great article written by Marv Zauderer that talks about strengthening your mental skills.  While we would all like to believe that “life is what you make it”, the reality is that “life is how you manage it”. 

Goal setting, positive self-talk, managing emotions, concentration, and communication are skills we use on a daily basis for a number of things, including taking care of a child in the Neonatal Intensive Care Unit.  They are also the skills you need to be successful when cycling, running, or eating healthy.  Every athlete I’ve ever talked to says the same thing…being successful is more mental than physical.  Motivation means everything.  My reality is that, I’m riding away from and toward something.  Same ride, same effort, same cyclotherapy.

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