Are We Lucky?

I’m not ready…and probably will never be ready to say, “it happened for a reason”.  To see your child in pain, fighting for their life.  I can’t think of many outcomes that makes me think my child…any child…should have to go through that existence as atonement (as some suggest) or as part of the process to get a good result.  I can’t say I’m a religious person, but I do believe in a higher power and in my personal belief, that higher power isn’t master planning terrible events to teach people a lesson.

My theory is we are an imperfect species and sometimes things, for a lack of a better term, malfunction.  In my pregnancies, my body malfunctioned.  Especially for Owen, the results of that malfunction was pretty horrific.  The physical pain and suffering that he had to go through – it was intense.  I can’t identify any “reason” that makes it okay.

But I do believe that I have a choice on how I respond.

Let’s be honest, a response is a moment in time.  Some days I respond really quite well.  Other days aren’t quite so exemplary.  In truth, there are days that getting out of bed seems like a super human feat.  On those days, my focus is what we all lost.  What we’ve been through, how our life has changed forever and that Owen never got a choice in any of this.

On my best days, I sit and wonder about the same events that can get me struggling to get out of bed, but instead of being overwhelmed with how hard it was, I am awed by how lucky we have been.

  • My symptoms of preterm labor were really mild.  In truth I called the on-call OB-GYN on a Saturday night at 10:00 because I had a gut feeling and the tiniest sliver of pink in my discharge.  The fact that we and the OB took my symptoms seriously meant that I received the steroid shots to help Owen’s lung development and when he came very quickly with no warning, we were in a hospital equipped to give him his best chances.  Lucky.
  • I went into the hospital at 24 weeks exactly.  Our hospital assumed Owen was viable.  Thankful.
  • The statistics we were given were grim.  For a white male at 24 weeks who was typical sized and received the steroid shots via mom,  he was given a 40% chance of survival and a 20% chance of having no long term issues.  Owen is a survivor. Blessed.  Owen has global delays, but he’s only 2.5 and he’s surpassed so many expectations.  Hopeful.
  • Complication on top of set back on top of “never seen that before”.  Owen pulled through it all.   Miracle.
  • Bilateral PVL with Cysts diagnosis.  The doctors didn’t give statistics but I scoured medical research papers and found them.  They weren’t pretty.  Nearly all had CP diagnoses and about half weren’t able to walk at three.  Owen’s tone continues to look good (CP not an expected label) and he’s taking a few steps here and there.  Odds-Defied.
  •   Minimal vocal sounds at 1-year old.  Turning into a little jabber jaws at 2.5.  Amazing.
  • 230 days in the hospital in his first 53 weeks of life.  Days in the hospital ever since?  Zero.  Mind-blowing.  (knock on wood)
  • Tears of fear and frustration for months.  Tears I’m wiping away as I write this post.  Joy.

This smile while dressed in scrubs in homage to NICU nurses on Neonatal Nurses Day on Sunday.  Serendipity.

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I don’t expect my response to be perfect to all of this.  I accept bad days.  Not bad days that Owen and Kellen need to see…but bad days that I need to give myself.  After all, I am human – an imperfect species – and I do malfunction sometimes.  I am also lucky and blessed and thankful and incredibly grateful for all the “what ifs” that have turned out in our favor.

I won’t accept that it happened for a reason.  I’d rather it not have happened at all, but it did and in many, many ways we were so very lucky.

The Love of a NICU Nurse

On Tuesday I had the opportunity to sit on a panel of former NICU parents talking to NICU nurses.  The panel was part of a training session put on by the March of Dimes Parent Support team. The nurses listened to the panel a lot like they do their jobs; with all their heart.  When we parents cried, they cried.  When we parents reported on our children’s latest achievements, the nurses beamed with pride.  They remembered our children, not just as names, but intimate details about each.

Saying neonatal nurses are special, seems like a huge understatement.  I can’t pretend to understand what is going on inside their heads, but watching them through both of my boys’ NICU stays, I think the best way to describe them is a band warrioresses (and warriors) of love who protect and pray for their babies.

I’ll never forget the cardio-thoracic surgeon, who had the intimidating peacock of only a surgeon walking into the room.  He addressed me appropriately, but didn’t consult the nurse before examining Owen.  This particular surgeon was built like a power forward and this particular nurse was maybe 5 feet tall.  Upon his opening Owen’s isolette doors, she clipped across the room faster than  you could believe, asked him to remove his watch before putting his hand in the isolette and demanded his credentials.  He mocked her with that surgeon’s arrogance.  She smiled back with her mouth, but her eyes were serious as she put her hand kindly, and with warning, on his arm said, “we are very protective of our babies”.

Not only are they tough, but after spending time getting to know the nurses, I’ve found most are also quietly spiritual.  I imagine, seeing miracles and loss every day at work puts life into a special kind of perspective.  They use their breaks to go to the chapel to pray for their charge and in times of loss, they openly cry with their families.  It seems, with each passing baby, their heart breaks a little with the family.  They understand that they are one of the few people who truly got to know each baby – that forever, the nurse is connected to the family as someone who also cared for their child.

NICU nurses have special ways of showing their love.  Some go into the linens room and horde the best blankets for their baby.  They take great pride in offering the family a small sense of normalcy with something as simple as a nicely put together bed.  They make notes for the family from the baby and have pet names, like “buddy” or “sweetheart” or “superman”.

They also have a sixth sense, many times they don’t even need to look at a parent or hear a word out of their mouth – they often seem to know what a parent is thinking of and exactly what they need to hear in each moment.  A NICU nurse knows that she is in charge of the physical care of the child and also the mental health of the family.

With a calm soothing voice and gentle hands, a NICU nurse guides a timid parent’s hands showing how to hug a baby who isn’t strong enough to be held.  A firm hand on the baby’s head and one on the feet…it’s the silent NICU prayer that the nurses often lead.

The NICU nurse knows she is just behind the parents in knowing the baby best.  She will stand up to doctors and push to make sure the baby gets the very best care – with special attention to the comfort of the child…and parents.

The expertise of a NICU nurse cannot be forgotten.  The attention to detail that is needed to care for babies who weigh so little.  A millimeter can be a life or death mistake.  Imagine, trying to place an IV in a vein that isn’t much bigger than standard sewing thread or helping place a vent in the airway of such a small size.  Their job requires precision and exactness that many of us could never imagine.

A NICU nurse also has a life of her own.  I am sure they each have their own struggles and joys.  Maybe they have a sick parent or child. Maybe their relationship is in trouble.  Maybe they are planning a wedding or desperately trying to get pregnant.  Each day when these women (and men) enter the unit, they leave whatever is going on in their lives behind and wholly give their hearts and expertise to be warrioresses (and warriors) of love fighting along with our children…leading the battle to keep babies alive.NICU Nurse


Best Ted Talk’s For Special Needs Parents

I have a self-imposed rule about my posts.  If most readers can’t get through it in 5 minutes or less, then I didn’t get to my point quickly enough.  For this post, however, to get the full post, it’ll take much longer.  You might need to come back and take a look at these 3 videos one at a time , when you have more time – they are each about 20 minutes – but if you haven’t seen them, please consider finding the time.

For each of these Ted Taks, I felt like someone was talking directly to me.  Telling me my story and also reminding me of Owen’s possibility.  These weren’t written for special needs parents, per se, but they definitely hit on so much of what we go through. It’s really refreshing to be understood and maybe even validated.  So even if you don’t have the time today, bookmark these three videos and some day when you need a hug, watch one of these inspirational videos.

Andrew Solomon – Love, No Matter What

Andrew Solomon’s research is about parenting in extraordinary circumstances.  He eloquonetly captures mothers and fathers discussing the joy and the personal fulfillment they get from being a parent to a child with special needs juxtaposed by the wish that their children didn’t have to suffer.  I never imagined I could relate to Dylan Kliebold’s (one of the Columbine High School shooters) mom, but I do.  You might too.

Brene Brown – The Power of Vulnerbillity

“I know that vulnerability is the core of shame and fear and our struggle with worthiness, but I also believe it is the birthplace of joy and creativity and belonging and love.”  These words touched me to the core.  For me, vulnerability was first truly tapped in the NICU…and then in this last year and half, through this blog.  Me, a person who has been described as aloof my entire life sharing my deepest hurts and fears for the world to see.  I’m not yet where Dr Brown suggest we go, but like all special needs families, I’m exploring vulnerability in a way I’ve never before been open to feeling.

Nick Vujicic – Overcoming Hoplessness

Nick was born without any limbs.  The first time he started thinking about taking his life he was 8 years old.  He was bullied and felt like he was a burden to his family.  Today (at the time of taping) he’s 29 years old, an internationally known author, motivational speaker, husband and father.  He says, he never got his miracle, however, “when it seems you don’t get a miracle, sometimes your miracle is being someone else’s miracle”.

Alicia Arenas – Recognizing Glass Children

I’m adding this one on at a later post date because I’ve just discovered it.  Alicia Arenas shares her story as the sibling of two special needs siblings.  Her talk, I admit, is my biggest fear in all of this.  Owen, he has a huge cheer leading section and resources thrown at him…but Kellen, he’s expected by many “to just get over it”.  I never want Kellen to feel like a glass child.

In My Defense: Why it May Seem I’m too Harsh

I hear it quite a bit.  Normally people are very nice about it.  “You know, most of the people really are well meaning,” they say.  Or more often than not, it’s a comment on this site or somewhere in social media guiding me to be more patient with those who are trying to support me with the words that just stung so badly.

Let’s be honest, this blog is full of posts … especially the most popular posts… filled with “Please don’t say this about my child / my experience” type posts.  The top five shared posts on this blog all fit in that category: “Don’t tell me to get over it“, “Don’t tell me most of these kids catch up“, “Just wash your hands and don’t argue with me about it“, “Never, ever tell me it’s good for my child to get sick” and “Even if you are a preemie parent, don’t assume we hurt exactly the same“.

Some days I look at that list of most popular posts, and even I think, “Tatum, you are a complete rag.  Lighten up.  Don’t be so sensitive.”  And then I’ll go back and read those posts and I think…harsh or not, it’s really how I feel.  The fact that they are very well read posts, tells me it’s also how many others feel.   So, I wondered…why?  Why am I, and seemingly many other preemie parents, so sensitive.

I can’t answer for the universe of preemie parents…but after some reflection, I can answer for myself.  Each and every single one of them comes back to one thing…

I desperately want people to ACCEPT Owen…me…our family and this situation.

I want people to accept that our situation is different.  I want people to accept that we make the decisions/requests that we do, not because I’m psycho-mom, but because our situation IS different.

The reason that acceptance is so important to me – the reason that I struggle to let it go and the reason that I sometimes get a really feisty about it is that I want people to…and I really fear they won’t…accept Owen, not just today, but also for whomever he becomes.

Every time someone tells me that it’s okay for my child to get sick, or that I’m too over zealous on hand washing and vaccinations, or that their situation is exactly like ours, or that I just need to move on because these kids all grow out of their issues…those comments tell me that people don’t accept where we are today.  And if they don’t accept where we are with a cute, smiley little toddler (who looks “normal” but still has significant needs)…If they can’t accept this boy, then what about the future young man?  When he’s a pimply faced teenager, or maybe a somewhat awkward adult, or he can’t run as fast as the other kids or eat what the other kids are eating … will he be accepted then?

When it matters to him.  When Owen’s happiness can be impacted by other’s thoughts about him…then will they accept him?  Because clearly, his situation…the realities of it…they aren’t accepted today.

I accept that Owen will very likely have life-long differences.  I don’t write those words because I have given up hope – we absolutely will continue to push Owen to be the best Owen he can be and the fact is, I think that Owen is, and will be, amazing.  I write those words because I ACCEPT it.  Because I ACCEPT Owen…with whatever his difference(s) turn out to be…he will be okay.  Maybe not everyone’s definition of okay, but my definition of okay and hopefully, his definition of okay.  I don’t just love him…I accept him.  I want other’s to accept him too.

My biggest hope and dream for both of my sons is that we are able to give each the resources and support to find their own version of amazing and for whatever that version is, he feels accepted.  That’s what every parent wants, right?  Our kids to be accepted – and ultimately, to accept themselves?

So yes, I know, I can be a rag who is sometimes a little harsh towards people who probably didn’t mean harm with their words or actions.  I promise, I will continue to attempt to accept that sometimes, a lack of understanding isn’t a lack of caring.  At the same time, I ask that when you hear that mama bear in me roar that you realize behind it is simply a mom who desperately wants her family…especially her children…to be accepted.

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Photo shared with permission. All rights reserved, Pichette Photography, LLC.

World Travelers

I’m still fearing the wrath of the proverbial dropping of the other shoe – but I did it.  I took what in my mind is the biggest risk imaginable.

That’s right.  Owen went on a plane – two actually, a round trip.  (Albeit very well sanitized sections of the planes…thanks to one over zealous mother with the sanitizing spray.  No names mentioned, of course…just some crazy blogger who might be known as the hand washing nazi…no wait…nazi sounds negative…princess…Hand Washing Princess…I kind of like that)

I was solo-parenting for these flights with the two boys.  The flight there was hectic, but exceeded my expectations.  The flight home…well, the only surprise was which child was the cause of my desperate need for a mommy time out tonight.

Don’t let the sweet innocent picture fool you.  This picture represents the last five minutes of the flight.  The other 55 minutes?  Owen was N-A-U-G-H-T-Y!.

This was my first time witnessing a completely wound up Owen for an extended period of time.  He yelled at me, he gave me dirty looks, he arched his back, kick, screamed…you know, typical two-year old on a flight stuff.  I have to admit the entire time he was being incredibly naughty, it took all I had to stifle my laughter.  He has the cognition to be crafty and so emphatically sure of what he wants, the voice to be heard by every.  other.  person on the plane, the fine motor skills to hit the flight attendant button, the gross motor skills to climb everywhere, kick the seat ahead of him and simultaneously hold my hand away from the window while pulling down the window shade with a BANG (repeatedly.  repeatedly.  yes, a few more repeats) and the interest and ability to take several sips of my coke.

Ohh…and he was healthy enough to be on a plane. (Do NOT drop other shoe, please!  I’m begging you. I’m pretty sure we had about 50 other shoes drop in the first year alone…we’re really good on shoes dropping).

What had us on the flight?  A trip to Grandma and Grandpas!  We had a good time.

Our Pretty, Pretty Princess who lives with Grandma and Grandpa due to Owen’s allergies.

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Kellen liked this plane because it looks a little like Dusty from the Planes movie.

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And now, I’m really tired and must go to bed in my own bed with no kids sleeping in the room and Kyle doing all the bedtime rituals.

I can’t wait to go to work tomorrow…the office is the perfect vacation from a vacation.

A Good Ole Fashion Mom Brag

I just tucked the boys into bed and can hear them jabbering through the monitor.  Kellen says a word, Owen repeats it.  It all makes me realize that I haven’t been that mom that brags about her kids on the blog lately.  Celebrating is one of the pillars of this blog…so, let me celebrate (PS – feel free to celebrate your own brag-worthy moments in the comments).

Words, Words, Words Galore!

I realize it’s pushing my mom-bragging limits a little by putting up a 1 min 25 sec conversation where I only get one word responses…but go with it here.  Owen was essentially mute…note even an audible cry…for the first year of his life.  I hear all these words and my heart sings.

He has somewhere between 30-40 words that he uses on his own and he repeats nearly everything else that we say.  Owen was born into a family of talkers and he’s not one to be left out. His favorite words?  “Daddy”, “Puppy”, “Doggy”, “Monkey”, “Nookie” and “Lilly”.  Yes, Lilly is a little girl in his school.  His first girlfriend that’s not a nurse!  Awww!

Owen’s not the only one suddenly mastering words.  Kellen has really taken off with writing and reading readiness.  He writes all of our names and any word that you spell for him.  He also has started sounding out what letter words start with and he and he’s at the beginning stages of working on reading simple words.  It’s such a joy to see that he likes learning.  He’s already excited to start kindergarten next year and the fact that he’s getting the basics of reading now makes me feel much better about the idea that we are leaning towards sending him to a Chinese Immersion program for elementary school.

Soooo Close

Honestly, it has felt like Owen has been “almost” walking forever but each week he gets a little bit closer.  In typical Owen fashion, he’s not learning in the linear process.  He skips steps and goes back and learns the “easier” things later.  For example, he can run with his walker, but he’s not yet walking on his own.  He has started to take 3-4 unassisted, but not very stable, steps a few times a day and on Friday he stood for about 8-10 seconds on his own.    His therapists aren’t really sure what to expect with him – they said he’ll either take off running (and skip walking), or be one of the kids who takes steps here and there for a longer time, in which case he’ll be more reliant on his walker for the near term.  I think they kind of suspect the running scenario, but we’ve all learned long ago that it’s not worth predicting what Owen’s going to do because it’s never what you think.  He will walk when he’s ready…probably in efforts to get to a “puppy”.  (I don’t have the heart to tell him he’s allergic – he loves puppies so).

The Big Bad Wolf

Kellen was the wolf in his class’ Three Little Pigs Parade.  I hope you’re secure in your brick house when this scary wolf comes knockin’!

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Splash!

Summer swimming lessons are complete.  Kellen graduated from Frogs and moves on to be an Octopus this fall.  He is loving the water and learned to duck his whole head in the water on command and can float and scoop swim with assistance. Owen is going to take Aquatots again so he can keep work on getting his face in the water to blow bubbles.  However, he made a ton of progress and really enjoyed his time in the water by the end of the 8 sessions.

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Overcoming Fears

Being at school has really helped Owen with his auditory sensory sensitivities.  I’ve not spent a lot of time on his sensory sensitivities, but over the winter and spring we had several issues where Owen would have such an emotional response to sensory triggers that he would give himself an asthma attack (I didn’t know this before, but pulmonary has said that emotions are one of the biggest asthma triggers). OT has been working with Owen on his sensory triggers and I also believe school has helped expose him to many new sights and sounds.  I am happy to report that I can now take a shower without causing my son to have an asthma attack and look at this progress…feet in the grass!  He even took a few hand-held steps in the grass after this picture was taken.

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Me too, Me too!

We saw GI last week.  The doctor has another “maybe it’s this?” big-named, word to consider for Owen.  I’m not going into what it is…wanna know why?  I didn’t even Google it.  Yep, that’s right.  I am not obsessing over it.  Time will tell.  I’m making progress too, plus, I’d rather spend my spare time doing this.

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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