Welcome

2013-06-16  'Marinkovich Family'  001Welcome to Ain’t No Roller Coaster (ANRC); a blog about our family’s journey with prematurity and special needs.  I focus my writing on Celebrating each milestone, Healing each layer of hurt and Connecting with those on a similar journey.  

Much of ANRC revolves around Owen, who was born in April 2011 at 24 weeks 5 days gestation.  Owen had a complicated course that included 2/3 of his first year in the hospital.  He has come far and continues to work to overcome global delays, feeding issues (80-100% g-tube fed), multiple food allergiesPVL and severe chronic lung disease.  Supporting cast includes, 5-year old Kellen, who was a 34 week preemie; my husband, Kyle; and me, the mom who recently returned to work after two years home with Owen.  

I write to share my truth because I have a feeling that I’m not alone.  My symbol is the zebra whose black and white color signifies the duality of life; sometimes the most difficult challenges come with the greatest joys.  I love hearing your stories too, so please, feel free to share.

Tatum

Recent Posts

In Summary

The journey isn’t over, it’s not any more or less of a roller coaster and unless weekly belly X-rays, g-tubes, visits to the neurologists (and 7-8 other specialists), and mild Cerebral Palsy labels are “normal”, we are still far from typical.

However, this is our life.  it is our normal.  It’s our version of life and I won’t just say I accept it.  I embrace this life.  It’s mine.  It’s ours.  it’s been excruciating and it’s been amazing.

On the journey, so far, I’ve been in denial, I’ve held onto guilt, I’ve been really pissed off, I’ve accepted, I’ve realized I’m blessed and I’ve forgiven others…and, most importantly, I’m forgiving myself.  There has been no miracle cure.  There has only been dedication to getting through the worst of it.  I’ve had an amazing teacher in a little boy who was born too small.  One who has not let prematurity define him…and so why, should I let it define me?

Instead, today, I need to start living.  I need to start moving forward and giving an example to my boys that sometimes we get derailed, sometimes we take steps backward,  but in the big picture, dear Kellen and Owen, please know, we never stop moving forward.

This isn’t an end of the journey, this isn’t the end of our life with prematurity, but it is the end of a chapter. The next chapter may be private, it may be in public of another space, I’m not 100% sure.  I just know that ANRC has met all it’s goals.

It’s one of the few blogs that made it okay to say “this sucks”.  It was honest, it connected…and without meaning to, I’ve been told, it inspired.  I can’t tell you how humbling it was to know that this space has inspired others and in turn I/we have been inspired too.

I won’t say goodbye, the site, the ANRC Facebook page and my email will all stay active.  ANRC will continue to exist as a journal capturing my truths as one mom dealing with prematurity and special needs.

I was recently asked, “Tatum, don’t you wish you would have known three years ago how well Owen would be doing today?”  I replied…”I’m not sure that three years ago my definition of doing well would have been MRIs, braces, feeding tubes, blended diets, chronic constipation, breathing treatments and “only” having 8 specialists because I refuse to go see the others…because that’d just be too many doctors.  However, that doesn’t mean that TODAY that I don’t understand and appreciate how amazingly well Owen is doing.  Three years ago this would have been daunting at best, today it’s just our really blessed life”

In truth, prematurity is a journey.  It doesn’t end at 2 or 3 or any other magical age and it is nothing like a roller coaster….but it is a beautiful journey and I’m honored to have been one of the people who, for a time, has helped share that beauty.

ANRC OT

Thank you for reading, thank you for connecting and, thank you for allowing me to understand the strength in vulnerability.  Without you, I’m not sure I’d so fully realize, that it really does turn out okay.
Xoxo,
Tatum

 

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