Finding Happiness When you Don’t Have Health

I recently had a conversation where someone said, “you can’t have happiness without health”.  I, quite unsuccessfully, tried to counter the argument.  Deep down I didn’t agree with the age-old adage, but I couldn’t quite articulate it.  Somehow my attempted arguments spiraled into, “when you’re in the thick of a medical crisis you just try to get through the day” and “many times family members end up with Post Traumatic Stress Disorder (PTSD) or other mental health issues.”  (No wonder I was never invited to join the debate team).  When I realized my arguments sounded more in support than opposition to the notion, I stopped talking.

Of course, my brain didn’t stop trying to solve the quandary and my fingers have been itchy ever since…always my sign that I need to write.  So here’s my attempt to let my fingers try to articulate what my mouth couldn’t get quite even kind of sorta right.

I can’t look at the last 2.25 years of my life and think of them as unhappy.  High stress?  Yes.  But, not “unhappy”.  I got my first iPhone in February 2011… just two months before Owen was born.  I am constantly in a fight with the amount of cloud space I have and which pictures I’m willing to delete.  I have 2000 pictures on my phone, entirely capturing our life since Owen was born.  As I scroll through the memories that are becoming more and more distant, I feel many, many emotions.  Stressed, overwhelmed, awed, sad, angry…but also, a lot of joy.

We did not have health.  Even still, I remember smiling and laughing.  At the very least, I was not the picture of “unhappy”.  There was always a reason to smile.  Sometimes it was the same things that make any parent smile; coming home and finding Kellen curled up on my pillow.  Some days we had to make our own happiness; celebrating a day that Owen didn’t need a blood transfusion…or simply, made it through the night.

Many days the happiness was found through love.  I look back at the time in the hospital and think about Mumford and Son’s blaring in my ear buds as I “hugged” Owen with one hand on his head and the other on his feet.  I sat and stared at my alien-esque baby for hours upon hours.  And then, as he got healthier, we would spend hours curled up together in a chair.  Among the beeping machines, constant commotion and coming and goings of doctors and nurses with really big words and terrifying diagnoses, I found peace in my love for Owen.

Some days, I had to suck it up and accept happiness in a much more cynical way.  For example, one night I was visiting Owen after a particularly hard day.  We had visited the hospital in the morning for rounds – I didn’t like what I heard – and then I went to work until I came back to the hospital after eating dinner at home with Kyle and Kellen. I didn’t cry that often in the NICU, but Owen was clearly in pain, his neighbor had recently passed away and I was reaching a breaking point after two months and no end in sight.  I started crying and his night nurse, Julie, asked if she could get me anything.

I’m not sure how the conversation so quickly turned but I told her that after leaving rounds that morning, I got into an altercation with another driver.  Tears still streaming down my face, we were both doubled over laughing as I told her about being at a red light and a bike rider was on my right, blocking my ability to turn right on the red.  The truck behind me couldn’t see the cyclist and so he started honking his horn and giving me the “go! go!” looks through the window.  I sent him a one-finger gesture through the window and waited for the green light as my anger escalated with each of his continued honks .  Finally the light turned green and the bike rider cleared the intersection, I yanked right and  pulled over and then rolled down my window and started SCREAMING at the driver.  I’m not really sure what I said, but it was mostly laced with F-bombs and sounded something like this “do you [f-bomb] want me to [f-bomb] kill the [f-bomb] bike rider, you [f-bomb] piece of [ f-bomb] [uhm…poopy]?”

While most neighborhoods in Minneapolis are safe enough to drive through, the hospital is in a neighborhood that boarders areas that I wouldn’t recommend altercations with strangers.  So here I am, crazy mom in her family-mobile screaming at some strange man in a big truck and he pulls over next to me.  I should have been scared, but I was too raged to have fear, I was ready to get out of my car and punch him and then, to my surprise, he genuinely apologized through his open window.  I was dumb-founded.  He drove on and I rolled up my window and drove off as I attempted to pull myself together before getting to work.

It took all day to process what a [f-bomb] idiot I had been.  But do you know why it made me laugh so hard I could barely stand?  It felt really damn good to blow off that steam.  It felt so good for 30 seconds to not be rational.  To not do the right thing and just say “[f-bomb] YOU!” with both middle fingers blazing.  Clearly, I wasn’t just saying it to the man to who honked his way into my path of wrath.  That was a great big set of middle fingers to the entire world.  And that night, as I watched my son struggle to heal, that explosive moment from earlier in the day was where I found my happiness.

I was pushed to the max, I was tired and overwhelmed and stressed and yes, sad.  My son…he was sick…really, really sick… and hurting… and I couldn’t take it away…I’m his mom and I couldn’t make it better.  And still, I found moments of laughter and, in an odd way, happiness.  Or at the very least, it wasn’t “unhappiness”.

I guess, I just don’t look at life as happy or not happy.  To me, happiness, or any emotion, is a moment.  It’s fleeting and it needs to be captured and cherished when you’re in that moment.  There are moments of peace, strife, anger, love, sadness, joy and on and on.  And all of those moments together make up life.  Maybe it looks like a kaliedascope…or maybe it’s a one-of-a-kind zebra stripe…describe it however you want, but there is no way, I can look back at these times and agree that you can’t have happiness without health.

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Yes, even then…ESPECIALLY then….there was happiness.

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All Rights Reserved, AintNoRollerCoaster.com

Working Out of Home Mom Reality Check

I am having some self dialogue on if I post this.  I fear it’s going to come out as a complaining about working.  So, let me just say this…”I am not complaining about working.”

At the same time, some of the rose color that built on my working-away-from-home-mom-glasses faded to a lighter shade of pink today.

There are the every day realities of working in an office.  High heels for example.  After two years of wearing Tom’s, flip flops and Ugg slippers, these last 10 days I’ve come to realize that high heels are the modern-day version of foot binding.  Seriously.  Why do we do this to ourselves?  I work in an office with 5 guys.  Do they really care what shoes I’m wearing?  Nope.  Even still, I look in the mirror and wear the heels because it looks cuter with my outfit.  Again, did I mention that I work with 5 guys?  I’m married.  They each have significant others.  I have no one to impress…and I still give myself blistered pinky toes.

The other every day working struggle for me is the alarm clock.  6:00 AM and I are not on speaking terms.  I’m not even really sure why I set my alarm for 6:00 AM, because in truth, I’m never out of bed before 6:45.  The problem is if I set my alarm for 6:45, I wouldn’t get out of bed until 7:30.  I have this disease, I’m pretty sure it’s medically documented and it’s called, “Tatum in the Morning”.  When I was a kid, I remember getting (a small amount of) water dumped on me because I wouldn’t get out of bed.  I didn’t care.  I curled up with a wet head and fell back to sleep.   I despise morning.  I may have to invest in insurance on my phone, just in case I accidentally throw it against the wall when it starts beeping at 6:00 AM.  Better yet, could one of you smart people develop a patch that has a timed release of caffeine into my blood stream 30 minute before I need to get up?

Today, was not just the every day whine fest type of days.  There was nothing horrific, but it was a great reminder of the type of trade offs that parents have to make.

The pros for working:  I’m a happier person when I work.  I also add more to our family when I work.  I’ve made it pretty clear in the past, I’m not exactly domesticated.  When I work, we can pay someone to do some of those domestic things.  Our life is so much more organized (our nanny is amazing) and house is cleaner (our nanny is amazing) and there is no laundry on the couch (our nanny is amazing) even the inside of the refrigerator got cleaned when Owen was at school (did I mention that our nanny is amazing).  Remember when I said I didn’t have time to do anything during nap time?  She totally blew that theory up.  She gets so much done during nap time and the kids get to the park every day and go on field trips and get dropped off and picked up from school on time.  Everything that I completely sucked at as a stay at home mom, she is great at.  I get paid to do what I’m good at, she gets paid to do what she’s good at.  Neither of us are working crazy hours, so we both get time with our own families and the satisfaction of a job well done.  Perfection right?

Which takes me to today…

Con’s of working:  Owen had his GI check-in today.  It was at 9:30 so I worked from 7:30-9:10 and then met the nanny and Owen at the clinic.  The doctor decided he wanted us to see the dietitian again, so that made the appt go long.  I had an 11:00 meeting at work.  We didn’t leave the clinic until 11:00.  I sent a quick email…”be there in 10/15 minutes.”  I zip through downtown Minneapolis and near my office to realize that there is a Twin’s game about to start.  My office is right by the Twin’s stadium.  Parking did not exist – let alone costed a fortune.  After 10 minutes of driving around I found a spot that was 1/2 mile from my office.  Did I mention I was wearing heels and have blistered pinky toes?  I arrived at the office a half hour late with a mild limp, sweat pouring off my face and my cell phone ringing.  It was the nanny.  Kellen had a pretty big fall at school.  He was running and had a toy in his hand so he broke the fall with his face meeting the concrete.  He was asking to go home, so the nanny wanted to make sure I was okay with her picking him up.  We agreed, I said “check his pupils” and we hung up.  She soon called me back.  His pupils seemed to be slightly over-reactive, he was extra low-key and acted like he had the chills.  She didn’t “think” he was concussed, but we agreed that a doctor should make the call.  She took him.  My mom-guilt was kicking me in the gut saying I should be the one to take him, but in reality – she was with him and 5 minutes from the doctors office and I was 20 minutes from home.  If he did have an issue and needed to be taken to the hospital, I was closer to the hospital and could meet them there.  It didn’t make sense for me to be the one.  (Mom-guilt isn’t logical…she’s a complete bitch).  So there I am, trying to have a meeting with a marketing contractor that I just met 5 sweaty minutes ago and all I can wonder is if my kid is alright.  The nanny soon called me back to let me know the doctor cleared him.  He was going home to nap.  I wanted Kellen to have a parent at home, so I got in touch with Kyle to see if he’d be able to go home early…the marketing contractor (whose time we’re paying for) is still sitting in the room.  Thank God, she’s a mom.  I finished meeting with the contractor and then got pulled into another meeting with some of the team.  It’s 2:30 and my stomach growling (not exaggerating) can be heard throughout the entire office because I hadn’t eaten since my granola bar on the drive in to the office.  Mercifully, I finally got some food and shortly after the day came to an end and I rushed the 1/2 mile back to my car thinking…so, today I sucked at my work and I sucked as a mom.

And that my friends, is the reality of a working mom.

Epilogue:

Kellen and I had some major cuddes when I got home and then we took a walk and spent some time with the boys at the park.  So, the day ended really quite well.  Kellen is fine.  His face took a beating.

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But really, he is fine.  He ran 70% of our 2 mile walk and still had energy to play at the park and try to negotiate bed time.  He did get a special treat and is getting our bed, instead of his own, all sweaty-kid smelling.  It’ll be a perfume only a mom can enjoy as I fall asleep tonight.  Because, regardless of what Mom Guilt thinks she knows, I am a good mom.

 

A Thank You to Our NICU Doctors

The Micro Preemie world was on fire last week.  I’m kind of glad that it happened on my first week back to work and that Kyle was traveling and that we had the 36 hours of the peak of the firestorm without power…I was crazy busy and barely opened my personal computer to see what was going on in the preemie world.  In truth, I’m glad.

In case you’ve missed the hubbub, there was an article in the New York Times entitled End of Life, at Birth . The article talks about the ethical decisions around medical intervention of babies born before 28 weeks.  I know that many people believe that I’m just a pessimist when I bring up these facts…but the article talks about the 30.000 children, like Owen, born before 28 weeks each year in the US of whom most will go on to have serious social, cognitive or physical problems.

Many preemie bloggers eloquently addressed this article.  My opinions are covered by their pieces, so I will share Jessi’s, Tricia’s, Heather’s, (as just a few) instead of add my own.  However, as I read this article and a similar one in 2012, I could only think one thing.

I am so thankful we live where we live.  I am so thankful to the doctors at Amplatz Children’s Hospital for never trying to play God and for handling the precarious decisions of extraordinary measures…or not…with grace and dignity for the individual families.

Since I was 24 weeks 0 days when I was admitted to the hospital and Owen wasn’t born until 24 weeks 5 days, Owen met what was considered viable at our hospital.  Whether or not to intervene was not discussed at Owen’s birth.  While I am pretty sure I know what we would have done, I’m glad we were never asked.  By not asking, it felt like the doctors were on our team.  It told me, that they believed that Owen had every right to be given the chance of a future.  No one attempted to play God.

We were lucky.  Had Owen been born 6 days earlier, we would have had to have had that conversation.  I have friends who had children at Amplatz in the 23rd week.  These babies were not assumed viable.  The parents had to choose whether to resuscitate and to what means to intervene.  I’ve been told by a couple of 23 weeker families that they were given statistics, and offered support from the social workers, but the doctor’s made no recommendations.  When these families made decisions, the doctors supported their decisions.  No one attempted to play God.

Another place that I often hear other preemie families talk of their doctors trying to play God is in predicting outcomes of the babies.  I can’t speak for every family at Amplatz, but I can say, I’ve never heard an Amplatz family say the doctors attempted to predict their child’s future.

In our case, when we were given Owen’s PVL and then Bilateral PVL with cysts diagnosis, we pushed hard to try to understand what it would mean for Owen.  The unknowns were terrifying and it didn’t feel like enough information at the time, but in hindsight, I am so, so glad that they only said, “this puts Owen at a significantly increased chance of Cerebral Palsy and global development issues, with the greatest risk to mobility”.  We then asked specific to the amount of damage that he had and the answer was only, “We’ve seen kids with similar ultrasounds have significant life long issues and we’ve seen kids with similar ultrasounds only have greater delays.  We can only wait and see”  They made no bones that PVL would impact Owen’s course (as it has), but they never gave us a prediction of who Owen would or could be.  No one attempted to play God.

When families like ours have spent large portions of years, or longer, with doctors, inevitably, we can find things that weren’t done to our liking.  However, I wanted to take this opportunity to say “Thank you” to our doctors at University of Minnesota’s Amplatz Children’s Hospital for never attempting to play God.

When I read the NYT article, there were plenty of ways that I could relate and plenty of emotions that were stirred.  I will not lie.  I’ve watched my child fight for his life and clearly be in pain and I have wondered if he’d ever forgive me for allowing this torture to go on.  However, when I look at that article and the Neonatologist questioning if parents are given adequate information and support in deciding how to care for their children, I can say, I really felt our hospital did an excellent job of communicating to us and supporting us.

I feel very lucky to live where we live and I am sorry that not everyone gets the same quality and supportive care.

Thank you, doctors, for giving this, a chance to happen.

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From “the look” to an introduction: How Special Needs Families meet

Owen and I have been crashing a swim class.  Well, okay, we were invited to crash it, but it still feels a little  shifty because I haven’t paid any money to torture my son while signing songs in the water.

Let me back up and explain a little about how it came to be.  We finally got Kellen signed up for his first swim lessons.  On the first day the head of the program stopped over to introduce herself and noticed Owen sitting on my lap.  She mentioned there was still one spot open in the Aquatots class going on at the other end of the pool at the same time as Kellen’s Frog class.  If I wanted to bring suits for Owen and I, we could join in the next class.

I’ve been wanting to get Owen into the water.  At the same time, I was leery.  He had some pretty big fears the last time we tried to get him in water and I didn’t want to be the parent with the kid everyone was staring at while their kid was having a fit.  All those babies and young toddlers at the end of the pool seemed to love the water.  I knew Owen wouldn’t have the same initial reaction.

As if to prove my point, a father and his two children soon walked in and headed towards the Frogs side of the pool.  Right away I noticed the sweet looking little girl with her miraflex glasses and slightly turned gate.  I also noticed the look of apprehension as the father said to the two teenaged instructors, “my wife already talked to you about our situation, right?”

The girl’s anxiety was palpable.  For someone who hasn’t seen a child have a sensory reaction, or at least understood it for that, it probably looks like a child being really unruly or just unreasonable. She clung to her dad and screamed as she sat on the ledge and her toes first touched the water.  I tried not to stare…my stare wasn’t because I couldn’t understand what was happening.  My stare was because I knew exactly what was happening.  I stared because I wanted to encourage her and because I wanted to encourage the father who was remaining calm but was obviously aware of the scene his daughter’s anxiety was causing.

The girl never did get in the water that day.  I never got close enough to really say anything.  I’m still pretty new to this special need parenting thing, but I felt like it’d be okay to say something like, “I don’t know your daughter’s diagnosis, but I recognize some of the manifestations…I understand.  She did really great today.”

Two days later, it was my turn.  It was Owen’s first time going in the water.  I was encouraged to see that the little girl was much calmer and joined Kellen in the water.  Her parents clearly worked with her to see such a drastic change.  I knew I just had to do the same with Owen.

I’m happy to report, he didn’t scream the whole time.  He mostly whimpered with a few loud screams and cries and a couple hesitant smiles when I’d lift him in the air and splash him back into the water.  Over the next several classes, I noticed the parents (who take turns bringing their kids) of the little girl, and had the little brother in the same class as Owen were giving us the look.  They always had an encouraging smile for Owen…the one that says, “I understand”.

Last night, the Aquatots class was not well attended and it was only me, the dad of the girl, and one other father in the class.  He asked me how old Owen was and smiled and said his son was also two.  A few minutes later, he heard Owen say a word or two and he asked, in a kind way, if he’s starting to talk.  I know I’ve posted in the past that I don’t feel like I shouldn’t HAVE to explain Owen’s delays…but in this case, I WANTED to explain.  I knew he’d understand.  I let him know Owen was born very early and that he has some developmental delays.  He did understand.  He confirmed my suspicion that his daughter has Cerebral Palsy.  He asked if Owen had mobility issues too?  I responded, “He doesn’t have a CP diagnosis, but he has some similarities to those with CP and he uses a walker and AFOs”  The dad laughed as he said, “I understood every one of those acronyms you just used.”

Aquatots is a 30 minute class and Frogs is a 40 minute class.  As we got out of the pool with the little ones to wait for the bigger kids, the dad said to me, “I’m glad we got the chance to talk.  It’s not too often I get to meet other families with children with special needs.  It’s always nice to meet people who understand.”  We spent the next 10 minutes talking about our kids, the stupid things people say to us and the lack of understanding of feeding disorders.  His daughter does eat, but due to muscle control issues she can gag or retch easily.

Over the last several weeks, our families have been giving each other the “I understand” looks, but we hadn’t talked.  We only have one more week of swim classes.  I feel like I missed out by not being bolder sooner.  The path from exchanging glances to meeting and starting up a conversation with other special needs families isn’t well-defined for me, but I’ve found it’s always worth while when it does happen.  I’m grateful for the families ahead of us who are helping me learn about the importance of our community

The Number Two

After TWO years and TWO weeks, today was my first day as a worker bee.  It’s been a while since my morning wake up wasn’t by one of TWO cute red heads.  I’ll admit, I had to set TWO alarms to get out of bed this morning.  Overall, the day went really well.  No separation tears by anyone.  Fortunately the boys had several short days with me and the nanny together to get them ready.

I hope that the smooth start is a sign of things to come.  Of course, there will be a bump or TWO along the way, but in my gut, the timing feels right.  Speaking of timing…I often say, there is nothing magically about a preemie turning TWO.  And there isn’t.

Tomorrow, August 6, is the TWO year anniversary of Owen’s due date.  Had things worked out perfectly, last weekend we would have celebrated his turning TWO.  He would have been running and jumping, eating cake and laughing and talking in short sentences. We didn’t and he isn’t.  I don’t say that to lament what Owen isn’t doing.  I say it, because clearly…whether you count by the actual or corrected date…nothing magically happened at TWO to turn Owen into a typical TWO year old.

However, for me… this one preemie mom, there was something magical about TWO corrected.  It took TWO years + 112 days (including bed rest) but for the first time in all those days, my day to day life did not revolve around the fact that Owen was a micro preemie.  Today, I was just some marketer with a specific passion for the brand I’m helping build who happens to the mom to TWO amazing boys.

Whirlwind

I needed to sit and type a post just to catch my breath.  I realize I’ve not been very prolific with the post quantity lately.  Life’s been pretty crazy getting ready to go back to work.  We were so lucky to find a great nanny quickly and easily.  Even still, there is a lot of work getting your life packaged in such a way that someone else can take over big chunks of it.

On top of all of the work it’s taken to get myself set up to work and her set up to work, Kyle had a really heavy stretch of traveling so I was single parenting much of it.  Quick FB updates on my personal page have been about all I’ve been able to do lately – so here’s a quick snippet of what it’s looked like.

There’s been a bit of a poop theme.

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The boys both started swim lessons and Kellen has finished floor hockey and ice skating.  We had one week of over lap, so on Tuesday they had swim lessons and then we raced to floor hockey.  On Thursday it was ice skating first…the swim suits didn’t get dry from washing before we had to leave the house.

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Owen has decide only one blanket matters.  The blanket’s name is Monkey.  After a few thwarted attempts at washing Monkey, I went on a search for a Monkey II.  One of Owen’s NICU nurses and a fellow preemie dad on Instagram found it on Ebay.

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Unfortunately, Owen knows Monkey a little too well.

20130801-130539.jpgI’ve got some new artwork that I Love, LOVE, LOVE for the blog.  Check out the artist, Jason, a high school classmate of mine, on Facebook.

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Life imitated art, Owen had his first trip to the Mall of America for rides.  He’s a dare-devil and thought the faster rides were better than the slower ones.  I know you’re not surprised.

20130801-130611.jpgThe weather has been perfect lately, so we’ve had quite a bit of time at the park.

20130801-130520.jpgWe even got a play date with NICU friend, Isaiah, at the new Amplatz Chidren’s Hospital Playground.  Owen had just finished his hearing test.  The doctor was thrilled that he’s still showing no signs of hearing loss.  Typically, she starts to see issues by now, if it’s going to happen.  (fingers crossed…Owen says, “take that, CMV”).

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In total, I think you could say I’m pretty tired.

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But really, we’re totally keeping it together…

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Defining Owen

I always seem to pick the slowest line at the store.  Yesterday wasn’t any different.  It wasn’t until I had everything out of the basket and on the conveyor belt that I realized the cashier was in training.  Not only was he painstakingly slow, he also didn’t respond to my repeated requests to please scan the boys’ baseball set and bumpy ball so they would stop asking for them.  Isn’t it in Cashiering 101 to appease all small children first?

The cashier who was doing the training sensed our impatience enough to try to keep us entertained.  We often hear the same things about our boys.  “Look at their beautiful red hair” and then “Oh, those curls!”  Owen knows this is for him and then he gives a cheesy little smile that says, “yes, I know I’m cute”.

I knew what was coming next.  “How old is he?”   But this time was different, before I could say anything, she and Owen spoke in unison.  Hers a question?  “Two?” and his a proud statement, “Two”.

I didn’t know which direction to target my beams of joy.  Towards Owen for engaging in the conversation without my coercion?  Towards this stranger who thought he looked two?  Or back to Owen for actually looking like a two-year-old?  Or, wait, should it be to the woman because she didn’t follow the question with a look that asked, “so…what’s wrong with him?”

It’s funny how such an innocuous question like, “how old is he,” can feel like a loaded inquisition.  I’ve posted in the past how I had stopped correcting Owen’s age long before doctors did. But, I will admit, I still often felt the need to explain.   I guess I never questioned that need, until in this instance, when I didn’t have to.

After confirming Owen was two, she turned to Kellen and asked if he was 5 or 6.  He beamed too.  She said she was surprised he’s only four because Kellen is much taller than her four-year-old.  You know, I didn’t feel the need to say, “he’s tall because I’m 5’10” and his dad is tall, too.”  I felt no need to explain something that is meant to be a positive.  I mean seriously, think about it, when your kid is said to be smart or attractive, do you ever feel like you need to explain it?  (It should be obvious it’s because they have stunning geniuses for parents).

Why do we (I) feel that we have to explain why our kids are less than average in something?  Owen actually is pretty big for a former micro preemie (~34″ and 24 lbs at 27 months), but his abilities are not that of the average two-year-old.  Yes, there are several reasons why Owen is where he is.  But (and it’s a big but), I feel like every time I explain that he’s amazing “all things considering”, I’m reminding him (and Kellen) that he’s different…in a less than way.

The truth is, there probably won’t be a day in his life that Owen won’t think about the fact that he was a micro preemie.  Even IF he gets lucky and is one of the few micro preemies that doesn’t have life-long disabilities, every time he looks in the mirror he’ll see scars covering his abdomen, on his back, on his neck and his arms and wrists.    Every time he goes to the beach or gets intimate with a girl (or boy), he’s going to be asked to explain.

Being a former micro preemie is a part of his story and I want Owen to be proud of how far he has come.  However, being a former micro preemie does not define Owen…and I never want it to be his excuse for giving up on his dreams.  Owen has the rest of his life to define who he is.  It’s my job to make sure that he understands his possibilities…not in spite of his disabilities…but regardless of them.

Thank you, Target Cashier Trainer-lady.  I needed that reminder.

 

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A Little Refresh

It’s been a year since I’ve updated the look of the blog.  There are still some changes coming, but today I’ve added some recent pictures. The boys have changed so much in the last year.  Instead of a baby and a toddler, I have a toddler and a little boy.

I looked through the pictures that Tonja from Pichette Photography took for our family last month and got the warm fuzzies.  We look so relaxed!  Life is completely different today than it was a year ago.  I’m still a mom to two boys with unique needs, but today my fear is what dangerous stunt Owen will try from one minute of the next…that’s a far cry from the constant fear being when we’d end up in the PICU next.  That’s not to say that our life is typical today, but we have started to find our groove of what our new normal looks like and the worries for Owen are getting less and less severe.  It’s progress and it deserves to be celebrated.  Thank you, Tonja for helping capture it. (Now, if I could get Tyra Banks to come teach me how to have a genuine smile with my mouth closed, we’d be all good.  Sorry Kellen and Owen, it looks like you inherited the mouth-wide-open smile too.)
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As I post these happier times, I won’t apologize for where we are, but I do want to leave a message for those families who are still waiting get to this point.  I hope you get here soon.  I won’t tell you, “it get’s better”.  Not because I don’t believe it won’t get better, but because, I want you to know that I am not going to minimize how you’re feeling today.  We are on this journey together.  Some further ahead, some further behind and through each other we can always remember the lesson of the zebra whose black and white color reminds us that with life’s greatest challenges we also find our greatest joys.  (Many thanks to the amazing reader who sent this costume to Owen.  She knows who she is and she and her two boys have a special place in my heart.  I know it, we will have a cross-country play-date one day.)

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Dear Pre-Mom Me

For someone who isn’t even sure she wants kids, you sure have a lot of parenting opinions.

Probably your biggest opinion is on McDonald’s.  YOUR kids are never going to eat at McDonald’s.

I have news for you.   Kellen eats McDonald’s one to two times a month. (Don’t worry you almost never order anything for yourself…unless it’s Holiday Mint McFlurry season and then you go…every.  single.  day).

Not only does Kellen eat and enjoy McDonald’s.  Today, I was only slightly embarrassed to arrive at his school at lunch time and hand the box with the golden arches over to the teacher.  I can hear your gasp from 5 years away…believe me, you will do this!  Need some proof?

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I’m pretty sure he thought he was the coolest kid in class when the teacher gave him his lunch today.  Cool mom points!!

Here’s another thing, remember your opinions on TV?  Hate to break it to you, but Kellen is a fan.  He watches about an hour a day.  He calls it “TD”.  You use it to bribe him regularly (oh, yes, you do sink to bribing.  It’s quite effective.  You’ll see).  Today, he woke up, got himself dressed, brushed his teeth and came in proud as could be.  He got himself ready for school without any nagging so he was able to watch “TD” until it was time to leave.  It was the best morning all week!  (You become quite the nag; it’s not very becoming).

“TD” really isn’t so bad.  They learn things.  Curious George  is the favorite as of late.  Without the man in the yellow hat and that naughty little monkey, Kellen may not know how to do this.

Oh, he was so proud.  He actually asked me to record it.

I’m sure there are many other things I do today, that would appall you, but I’ve forgotten you ever thought they were bad.  Here’s my opinion on your opinions; shut up and come talk to in 3-5 years.

PS:  Hold on tight.  You do have kids and you are glad you do.  Things are going to get rough.  Really rough.  You’ll surprise yourself with how well you handle it.  Not to be patronizing, but I’m pretty proud of you.

 

Is this what “normal” feels like?

Sitting on the golf cart watching Kyle take his drive while I took a drink of my Leinies Honey Weiss, I had a vaguely familiar sense wash over me.  Almost a little de ja vu…like, I’ve been here before.

Of course, I have been to this small 9-hole golf course before.  It’s just a couple miles away from Kyle’s family’s cabin in Northern, WI.  We’ve often golfed there together;  taking time away from the family for just us.  In a way, these golf outings have all the elements of the foundation of our relationship; competing with each other, cheering for one another, swearing a lot and drinking beer (we met in grad school).  Regardless of the score (with which neither of us is ever pleased), I always look forward to our time on the golf course.

This weekend was the first time that we golfed together in 3 years.    The moment of de je vu that I felt while swiggng my beer wasn’t just because we were on a golf course we’ve visited before.  It was the way I felt. It was the way I was able to take a full breath and for a moment, say hello to (who Kristi calls) one of my former mes.

Or maybe, it wasn’t a former me, maybe it’s the present me.  The me, who hasn’t forgotten any of what we’ve been through, but who, like her son, is starting to breathe.  Real breaths.  Not short, sharp, constantly in fear breaths.  Deep, hearty, smiling breaths.

Yes, our weekend was filled with not-typical parenting things like nebs, a (non critical) allergic reaction to a kiss from peanut lips,  tube feedings, braces, eye patch battles (but not glasses battles, Owen popped out and hid a lens before we left so he could take a long weekend off…little stinker).

However, we also were able to enjoy the precious time with family. Really enjoy.  Fully present.  It was almost….I can’t believe I’m using the word…normal.  No, not our old normal life.  We will never be the same.  But…finally…it feels like we have reached moments of a new normal that aren’t so damn hard.

That’s what that de je vu moment was … a moment of not so damn hard.

This is what it looked like.

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