My Personal Polar Vortex

Since Owen was born, I’ve been really deliberate with my mental health.  I started writing in my journal first.  I also used CaringBridge to process the immersion into the medical life.  Since I was very young, writing was how I processed.  (I’ve burned all my college journals – I’d die if they were found).  However, with this stuff over time a personal journal wasn’t enough.  I needed to say it out loud. I needed to be heard.  My life was a combination of hospital stays or isolation at home.  Sometimes the hospital was actually better- at least I had someone to talk to.  This blog became my way of having a conversation that my life was impeding from happening.

Knowing that I needed more, in winter two I created the cold and flu season bucket list. And I went to a therapist.  I didn’t want the emotions to catch up to me.  I kept a deliberate focus staying healthy.

I’d never personally struggled with mental health issues, but I knew too well the implications of prematurity.  I’m not just a preemie mom, I was also raised by a preemie mom.  As soon as Owen was born, I suddenly understood both of my parents better.  After Owen was born, my mom admitted to me that decades after my brother was born she was diagnosed with PTSD due to her own course as a preemie mom.  I wanted to make sure that nothing like it happened to me – my diligence to my mental health was my approach to avoiding any breakdowns.

Last summer, I was something close to on top of the world.  Owen was doing amazing things; starting to talk, nearly walking, finally his stomach was doing better – still major constipation issues – but he wasn’t retching and he was tolerating his feeds and growing and the biggest deal of them all…he came off oxygen.   Kellen was doing better with his emotions and I felt closer to Kyle.  I found a job that seemed perfect and somehow got a great nanny hired in less than a week.

With all those wonderful things happening, I let down my guard.  I wrote less – I was busy living, I didn’t need to write.  I didn’t prepare for a third winter of isolation.  Why should I?  I got to leave during the day.  Well except, when I was at home, we were still in isolation.  Owen didn’t have any hospital stays (knock on wood) but we had several colds, one mild case of pneumonia and three rounds of steroid bursts and many days of nebs.  We didn’t take Owen out for any non therapy outing except Kellens birthday party.  And still he got sick several times.  I thought our days of isolation would have been over this year.  They weren’t.

As the temperature dropped below zero and stayed there for 50+ days…so did my mood.  I’ve never been depressed before for more than a day or two.  I kind of just kept hoping it would lift and that’d be it.  It took me a while to even pinpoint that depression is what I was feeling.  I expected that depression was about sadness.  Where I’d cry a lot.  I don’t want to minimize the forms of depression that does include crying a lot, but there were moments that I wished I felt enough to cry.

I wasn’t sad.  I was apathetic – completely withdrawn and cranky.  If you asked me to identify an emotion, I couldn’t.  I just didn’t care.  About anything.  Yes, I was still a mom.  In the bare minimum sort of way.  Yes, I still did my job.  In the bare minimum sort if way.  Yes, I was still a wife.  In a way that vacillated between  cranky, apathetic and apologetic for making him carry so much of the burden.

The weirdest part for me, It was almost out of body.  I could see what was happening to me – enough to make those apologies to Kyle – but I was too apathetic to care or attempt to make a change.  I couldn’t write because I had no idea how I felt.  Plus it just took too much effort and I had no desire to be honest with you all – or myself.  That’s my promise…perfect or not, this place is for honesty.

As our temperatures finally came above zero, I’ve started to feel again.  I’m far from in a perfect place, but I’ve started to be deliberate about my mental health again.  I’m no longer trying to avoid depression.  I’m trying to overcome it.

I’ve gone back to the therapist.  Wow, that was ugly.  Not in a bad way.  I feel lighter after going, but I think every feeling I didn’t feel during the Polar Vortex all came out of me.  What really came out was that I’ve been feeling trapped.  It’s an honor to be a mother, but it’s exhausting in the best of circumstances.  Being a mother to two boys who need me in both of their special ways is fatiguing and overwhelming and I reached a point when I couldn’t see a light at the end of the “I need a break” tunnel.”

I know how blessed my life is.  I do.  I also know that sometimes blessings are exhausting.  I reached my breaking point of heavy lifting.  I need to hit the reset button so I can come back and enjoy my blessings.

I don’t feel perfect, but at least I’m feeling something again.  A vacation is in the works.  More writing is in the works.  More therapy sessions are in the works.  I look forward to Spring.

If you’re going through depression…you’re not alone.

Forgiveness & The Road to Acceptance

I’m sure it’s not a perfect analogy, but I’ve often compared the preemie experience to grief.  I didn’t lose a child, instead, I lost the typical course for my child…the course that I had every reason to believe should have been our course.  Similar to someone who has faced loss, I feel like I continue to go through the stages of grief; Denial, Anger, Bargaining, Depression & Acceptance.

As I look through my earliest CaringBridge entries, I see denial pretty clearly.  Owen had such a lovely honeymoon period, I couldn’t imagine anything worse than going home a couple of weeks before his due date.  Even after the worst of it, I still was pretty sure he’d go home in August…even if on the 31st.  Through the NICU I also did plenty of bargaining…let’s be honest, I still do it today.  The fear of the jinx, is really just a form of bargaining.  I won’t celebrate the success too much in exchange for nothing else bad happening is my logic.  Anger, is an emotion that I’d like to pretend escaped me.  Yeah, right.  One look at any of the top read posts on this site will show you plenty of anger.  The truth is, those posts showed nothing compared to the reality.  I struggled with some of the ugliest temper tantrums that you can imagine.  Anger isn’t the word for it.  Rage is.  Sometimes at strangers.  Sometimes at home.  I’ve also struggled with depression.  I’ve so far escaped a clinical diagnosis of either PPD or PTSD, but there were definitely moments, hours and days when I struggled to do anything but feel sorry for myself.

I can’t say that I really felt any of these emotions were stages for me.  I’d say it’s more like they ebb and flow.  This weekend, I had so much to do, I had kids and a husband to love and enjoy.  Life is far from perfect, but let’s be honest, we are in such a better place than we were a year or two ago.  Even still, the fact is, this weekend I was depressed.  I read 4 full novels on my iPhone.  I didn’t want to partake in my life, so I did the bare minimum and basically lived in a make-believe world of books for the entire weekend.

I dropped Kyle off for work this morning and he asked if I was okay.  I admitted that I was sad and I didn’t have a real reason.  As I drove on to my job, I started to think about the weekend and trying to make sense of why.  I came to the conclusion that not writing much lately was effecting me.  Things like the Polar Vortex weren’t in my favor either.  I also came to the conclusion that these stages of grief aren’t really stages at all.  They don’t go in order and you don’t finish one and start another.  Instead it’s a bit of a mixed up mess of good minutes and bad minutes, great days and really shitty ones too.  Slowly…ever so slowly, the good minuets do now outnumber the bad.  I believe that part of the final stage of grief, acceptance, is admitting that the bad days don’t just miraculously end.

In truth, I’ve been working on acceptance for a while.  When Owen was about 18 months and finally had a six month stretch without being admitted to the hospital I finally started explore acceptance.  I do feel like I’m getting closer.  I finally accept that it’s okay that Owen has challenges.  I realized I needed to accept that his struggles are okay in order to truly accept Owen.

In all honesty, I think I thought with accepting Owen, I had finally cleared the acceptance hurdle…but there was something still nagging.

Last month I read the book, David and Goliath by Malcolm Gladwell.  I picked up the book because I’ve always liked the way the author challenges conventional thinking about cause and effect.  I was especially interested in the book because I now work for a start-up company, I wanted to think about how the small David companies can compete with the Goliath companies that I used to work for.  As a special needs mom, I also wanted to read examples of disadvantages – like learning disabilities – being turned into advantages.  I did get insights on all that I had hoped.  I also figured out what was nagging at me about acceptance.

In his book, Malcolm Gladwell explores a mother, Wilma Derksen, who lost a teen daughter to a brutal rape/murder.  The focus on the chapter about the Derksen family was about forgiveness.  She talked about how it was easier to forgive in the abstract.  For the years that they did not know who to blame, forgiveness still took work, but through her personal beliefs, she felt she was there.  And then many years later, the murderer was discovered.  When suddenly she wasn’t forgiving the “idea of someone”, but had to forgive a real person for doing horrific things to her daughter it became much harder.  “I fought against it.  I was reluctant.  I’m not a saint…it’s the last thing you want to do,” Gladwell quotes Derkson.  “It would have been easier in the beginning [to not forgive], but then I think it would have gotten harder.  I think I would have lost [my husband].  I would have lost my other children.”  And as Gladwell points out, she also would have lost her sanity.

Wilma Derksen’s story really demonstrated for me the importance of forgiveness.  I realized, I had accepted where we are and forgiven the idea of what prematurity means for Owen, but I haven’t really forgiven the events of a complicated preemie course.  But I wasn’t really sure where to apply her story to mine.  There is no murderer in our story.  There was just a little baby who was born all too soon.  What’s to forgive?  Who is to forgive?

I was sitting on an airplane looking over the clouds as I read this forgiveness chapter of the book.  Staring out at pink clouds beneath me, I realized it is me who I blame.  Yes, I’m not a murder and I’m not comparing myself in any way, but the reason Owen was born too soon is because of me…my body…more specifically, my cervix.  The reason he had such a complicated course was me…my fucking breast milk poisoned my son.

I know, I know, I try not to throw the f-bomb around on this blog, but it’s the only word I have for how royally pissed off I am.  And the fact that I can’t come up with a better word tells me one thing…I’ve yet to forgive the person I blame.

I do accept Owen, but I don’t accept how it happened and I have yet to accept my part in what happened.  If Wilma Derksen can forgive a man who intentionally hog-tied, raped and left her teenage daughter to ultimately die, then surely I can forgive me for unintentionally having a faulty body.  Right?

I’m not 100% sure what to say to myself that will make the blame go away, but I guess I’m just going to start with this,

Dear Tatum, I forgive you.

 

 

Dealing with NICU Parent Survivor’s Guilt

I’ve struggled with the decision on writing about NICU survivors guilt because it always felt a little disrespectful to those that did lose a child in the NICU.  There is part of me that says, the loss of the child is the only emotion that deserves to be addressed.  But the feelings are there and I guess I need to say it out loud (in the written form) because I’ve never said it.  I have heard it once out loud, and it was really helpful to hear.  Now it’s my turn to say it, because maybe someone else needs to hear it.

The thing about the NICU that is most cruel is that there is no predicting who will go home and who will not.  The fact is the great majority do go home.  Still, way too many do not.

The only time I’ve ever had someone put the complexity of emotions that I felt around the loss of a NICU baby was the hospital chaplain when he stopped to see how Owen and I were doing the day after one of Owen’s roommates passed.  I brought up the baby’s loss and we both stared at the newly empty bed as he said, “it’s such a complex thing to deal with, being sad for their loss, for your loss…and especially one you got to know so well.  And then there is the reminder that it could have been you and the fear that it still could be you.  There is the guilt for thinking what you have going on is hard. You still have your baby.  And then there is guilt because you’re not really sure why it happened to them and not to you”

I wanted to be able to vehemently disagree.  Of course, I don’t feel all of that!  Guilt?  No, I can’t feel guilt that my son is alive.

In truth, I didn’t speak.  I didn’t have to because he said exactly what I was actively feeling and also the subconscious thoughts that I wished like hell I wasn’t thinking.  The only emotion that he missed saying was the relief that I had in someone saying so clearly what I was thinking…to kind of make it okay that I might feel guilty for their loss.

If you are reading this and you have lost a child and you’re thinking, “this is all very sick.”  I want you to know I feel that way too.   I’ve written about it a lot in my personal journal because, I wanted to understand it so I could move away from the icky feelings of guilt about this guilt.

The more I process it, I’ve come to the conclusion that guilt is the wrong word.  As I peel back the layers of feelings, what I’m starting to conclude is what I really feel is great confusion.  I think about looking around that NICU nursery and thinking, “How is it all decided?”  Who goes home and who doesn’t?  The randomness of one day a baby seems to be making great strides and the next day, they are gone.  That it seems your son is sicker, but somehow he’s still here and the other babies are not.

Why???

How is it decided??

Why do babies, children, loved children have to die?

I’m not really looking to turn this into a theological discussion.  My beliefs and your beliefs, whatever they may be, are valid and we all find our ways to cope with these questions.  But the fact is, for the most part, it seems it doesn’t matter what people’s beliefs, these questions seem to come out at some point.

I guess overtime the guilt has diminished.  I’m still confused – but at least I’m doing a better job of identifying the emotion as confusion and not guilt. For me, with time, “it’s just the way it is” is my way of beginning to hmmm…it’s not really accept….but acknowledge the reality of it maybe.  It has occurred and it is just the way it is and nothing will change it.  It still crops up but now it’s less in the form of beating myself up that my son is here and their son is not.  Now it’s more times when I stop and realize that I’m sad that there are babies missing from the picture.

We had a play date last week with NICU friends.  In a picture, we got three amazing boys who combined spent more than 22 months in the hospital and 6 years on oxygen/vent.  It was a joy to see how they are all thriving in their own ways.  As I looked I couldn’t help but also know that one of those boys had a twin sister that passed before birth and the other had two brothers who lived one and two days.  And then there was the other little boy who was in the hospital with these three and he passed away at 7.5 months.  Our picture of three…it should have been seven.

I missed them in the picture.  Those four…and many others…  I’m not sure why the three survivors are the three that survived.   It’s not really something I’m currently able to come to terms with, but I will remember each that didn’t survive and I will never stop celebrating those that did.

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.

Changing Times

One of the things that really surprised me (and those that know me well) about this time since Owen was born was how little I missed work.  My career has always been a huge part of my identity and my passion.

Many assumed I’d be at home pulling my hair out and longing for days in the office…my hair is still in tact and while there were days in the throes of cold and flu season that I would have liked to be anywhere other than our home, I wasn’t overwhelmed with a need to work.

When I started the blog, some, including myself, thought that one day I’d turn it into a money-making venture or maybe work towards writing a book or some sort of business.  I didn’t.  ANRC has maintained a hobby for me.  It has grown to a decent sized blog, but that’s been because readers share it with others, not because I’ve been focused on growing it.  I’ve had offers to advertise or to test products and I’ve chosen to not do it because I’ve wanted this space to be organic and about my truth without worrying about writing a post that’s going to go viral.

Between ANRC and the extent of Owen’s and Kellen’s needs, neither my heart nor my brain missed work.   That is…until recently.  Over the last couple of months, as I’ve blogged about suddenly starting to be able to breathe again  and learning to find our new normal, I was noticing that something was missing too.  I’d be in stores and notice the new products on the shelf.  I was starting to be captivated again by what was brilliant, or not so brilliant (in my opinion) in the market place.  My brain was shifting from constantly on alert for the next trip to the hospital to constantly on the alert of how people shop.  I was starting to think like a marketer again.

Kyle and I started talking about what the timing would look like for me to go back to work and we agreed, it’d make sense for me to start considering part-time work over the next 12 months.  After the Fourth of July, I freshened up my resume and dabbled on the internet job searches.  I wasn’t ready to put the word out to anyone to start networking yet, but I was seriously processing a change.

And then, one night I was laying in bed taking one last look at my email.  I had a LinkedIn invitation to connect, so I popped on the LinkedIn app.  A job on the app caught my attention.  I read it about 5 times.  It was looking for someone with exactly my background and it was in the green/eco space (a personal passion) and a start-up (I dream of being an entrepreneur).  However, it was a full-time position and start ups…they can be a lot of work.  I pushed back the urge to jump out of bed to run downstairs to apply.

I waited two days (and can I tell you I had the craziest dreams for those two days).  I have been reading Lean In by Sheryl Sandburg (a great book for all women and men), she talks a lot in her book about how sometimes you have to take the right opportunity, even if the timing might not feel right.  She basically says, don’t assume the timing is wrong until you have asked the question.  So…I applied.  I interviewed.  I received an offer.  I accepted an offer.  I hired a nanny.  Yesterday, I started training the nanny.  Did I mention that was all in the last two weeks?  I officially start working on August 5.

In truth, I’m still as surprised as everyone I tell (not so surprised that I haven’t been to the mall to freshen up my work wardrobe, of course).  The response, however, has been great.  Once the initial, “I didn’t know you were looking for a job” surprise wears off, everyone says the same thing.  “This is your time”.

I’m really proud of what I’ve done for my family these last 2.25 years.    I did things, that I never imagined I had in me to do.  And now that Owen’s health has reached a place where a qualified nanny makes sense, it is my time focus on all the things I’ve always imagined I would do.

I can be changed by what happened to me, but I refuse to be reduced by it.

I’m firmly of the belief that the best way to teach your kids to reach for the stars, is to be an example of what it looks like to reach for the stars.  For some people, the ability to stay home with their family is reaching for their stars.  And those are awesome stars to reach.  However, they aren’t my stars.  I deserve to find my stars and now is my time.

Once they are done congratulating me, the next question out of everyone’s mouth is, “what about ANRC?”  I’ll talk more about it in an upcoming post, but the short answer is, ANRC will continue to be my hobby.  I may be posting closer to 1-2 times a week instead of 3-5 times, but I’m not done.  This community is too important to me.  Each reader is important to me.  Advocating for preemies and their families is important to me.  Our journey with prematurity continues and so will this blog.

Oh, and the product I’m going to be working on … it answers a need for so many preemie families.  I can’t wait to tell you all about it when I’m able.

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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The Pain of Setbacks

If you’ve read ANRC for more than a few weeks, you’ve probably figured out that I have become very superstitious through this journey.  So many times it felt like every time we started to get excited and started to feel hope, we’d be hit with another setback.

I’ll never forget driving home from the NICU with tears of joy streaming down my face.  It was late August and the first time that the word “home” was mentioned.  We knew he’d still need g-tube surgery, but Owen’s breathing was looking good, he was up to full feeds and it seemed things were finally turning around.

I was home less than an hour when the Resident called to tell me that Owen’s CMV count was elevated again and that there was evidence that it was in his kidney’s and causing his high blood pressure that we were struggling to get under control.  The recommendation was to put Owen back on the Chemo-grade drug, Ganciclovir via an IV.  There is an oral version of the medicine, but the IV version is more potent and because this is the virus that caused Owen’s intestines to perforate and kicked off the downward spiral in the first place,  it was felt we should be aggressive.  We knew he’d have to be on the drug for at least two weeks.  He also would not be a g-tube surgery candidate while on it. The next morning Owen went to imaging for a PICC line placement (his veins were too small to place a line in the NICU).  He fought really hard and came out white.  He was inconsolable for the next several days.  He stopped breathing two days in a row.  Setback.  Part of the work up from the breathing episodes resulted in chest and stomach x-rays.  The radiologist noticed multiple fractures.  Many ribs, both femurs, both humerus, both tibia and one fibula.  Heart breaking setback.  Just a few days before, we had set up a care conference to discuss the go-home plan.  Instead the care conference became a meeting when the Neonatologist told us that things weren’t adding up with Owen and that they feared their may be a contributing genetic disorder.  The type of genetic disorders that kids often don’t see early childhood.  A slew of testing was kicked off.  More Setbacks.  The next week, Owen was done with his CMV treatment and his counts were looking great.  I pushed for when he’d get his g-tube and the since decided Nissen.  Surgery was brought in for consult and the surgeon didn’t want to operate on Owen.  He felt his lungs were too sick to handle such a big operation.  He wanted to wait at least another month.  Another setback.

I was heartbroken.  It felt like the word had spiraled out of control.  Things had been looking so good.  Only two weeks earlier we had talked about home and now they were telling us Owen may not be home until Christmas.  When you’re expecting good and get bad…when you finally have found the courage to have hope… those are the worst kind of hurts.  I’ve yet to find the words to describe the pain of those setbacks.  We’ve all felt them, it’s exactly why the NICU is often described as a roller coaster.  Setbacks are part of the preemie journey.  A part of the journey for which there are no words.

Yesterday I received an email from Ian, from England, who wanted to introduce me to his amazing son, Hugh.  Hugh was recently released from the hospital after a year, a week and a day.  Ian made a beautiful video of Hugh’s journey.  In the most simple way, and with very few words, Ian captured the essence of what it’s like to feel setback after setback.  He also captured the tenacity of our babies.  Hugh is a perfect example of finding our hope in the strength of our kids.  Please take a few minutes to check out the video about Ian, Louise, Ted and Hugh and their one-of-a-kind micro preemie story.

Thank you to the Hunter family for sharing your amazing story.  I wish you a many nights hospital free.

“Be Happy He’s Alive”

Why do people think this is an appropriate thing to say to a preemie parent…or any parent?

“Be happy he’s alive”

Why?!  Why?!

It’s NEVER, EVER, EVER…Okay.

It’s like dumping a huge tar and feathers bucket of guilt over someone

Do you know what preemie parents (and all parents) have too much of?  Guilt.

For some, it’s all-consuming, for others it’s quietly nagging at the back of their mind and jumps up on occasion.  For me, I’d say it’s mostly at the back of the mind but there are certain triggers.  Like when I get frustrated with Kellen for talking too much and just wish he’d be quiet…”for, like, 30 seconds…can I please get 30 seconds of silence”.  And then the little guilt devil in me pops up and says, “you should be happy he’s able to talk.  He has words and he has a voice that fully projects (albeit, sometimes too loudly).  Don’t you wish Owen could do those things too?”  Guilt.  My other guilt Achilles heel is breast-feeding.  I see someone posting about the benefits…most likely they are being informants and not intending to judge…and I feel judged.  I tried so hard with both of my boys to very little success and then with Owen my breast milk nearly killed him.  He acquired CMV from me…from the minuscule amounts of breast milk that I was able to give him.  CMV caused his intestines to perforate and is likely what caused his PVL.  Yea, that’s a tough one.  I feel guilty that I couldn’t give it and I feel guilty that I gave it.  If that’s not enough, I also feel guilty that I’m letting myself feel guilty.

Rational?  Nope.  All consuming?  No, I don’t think about it most days.  Hurts like hell?  Yes.

Those two guilt-triggers, make me get down for a few minutes and usually result in a bit of a self reprimand or a quiet pity party.  However, when some says,

Be happy he’s alive

I come out swinging.

Here’s why.  There is not a day in my life..actually, there are very few minutes in my life that go by without my being thankful that both of my sons are alive and doing well.  They both had scary births (Kellen, Owen).  The only way I got through Owen’s first year of life is because I reminded myself that I was lucky to spend 2/3 of the year in the hospital and that I was lucky to be so damned tired and that I was lucky that Owen had a future for me to worry about.  Many times, every single day, I thought “why is this so hard?” and then I’d remember all the babies and moms I knew who didn’t get the same opportunity as Owen and I and I’d stamp the fact that my life had its own challenges into the back of my brain to fester.

So, yes, remembering that I should be happy that Owen was alive was what got me through that first year…however, it wasn’t healthy.  Every time I said it to myself, I was beating myself up.  It wasn’t me taking a moment to appreciate what I had.  I was taking a moment to punish myself for admitting that my circumstances were hard.  It was a self-lecture that I didn’t have a right to complain.

I don’t deserve to be punished for my children living.  That punishment should not come from me and it definitely should not come from anyone else.

I do deserve to celebrate their life.  It is my responsibility to appreciate what I have and what my children have.  I understand I can create my own happiness and sometimes the best way to create my own happiness is taking a moment to acknowledge that not every emotion I feel is happiness.  Sometimes I might even need a wake up call that I’ve been too negative.  If you need to give that wake up call, feel free to point out that I’ve seemed down lately.  Maybe ask what you can do to help, but do not admonish me by reminding me how close I was to losing my son(s).  I promise you, that is a fact that I can never forget.

I Never Planned to Be a Stay At Home Mom

If you would have asked me all the possibilities of my future… I wouldn’t, in a million guesses, have guessed a stint as a stay-at-home mom would be part of it.

First, before the haters come after me, I must qualify that I have never seen anything wrong with being a stay at home mom.  My mom stayed home with us and I loved that as a kid.  She was a great role model and I’m proud of her and the way she raised us and cared for our home.  I have all the respect in the world for both choice and circumstance stay at home moms.  It just was never the path I imagined for myself…kind of like I never imagined myself as an astronaut.

Maybe it’s because I was the only girl in the family, or maybe it’s just innate, but I’ve always seen myself in leadership, or what was more traditionally considered masculine, roles.  In Kindergarten, I remember taking a field trip to the hospital.  At the beginning of the tour, each child was able to choose a doctor’s hat or a nurse’s hat for the tour.  With only one exception, every girl chose nurse and every boy chose doctor. I was the exception.  I was the sole female doctor and until my teacher, Mrs. B, pulled me aside to commend me on being brave enough to make my own choice, I didn’t even think anything of it.  I wanted to be the doctor, so that’s what I chose (I’m both proud as hell and often exasperated that Kellen inherited this same independent-minded spirit).

When I was six, our family took a trip to New York City.  I fell in love and knew I was going there.  The image I had in my head was of me in my business suit walking down the sidewalks of busy Manhatten with a briefcase in hand and going to my important office job in one of the towering buildings.  I never really had a princess stage.  No fluff, just streamlined silhoettes…like business suits.  It was the early 80’s so I’m sure the suit in my head had some fabulous shoulder pads.

Or maybe it was the 90’s version…

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I mean seriously, even in the 90’s who had their grad pictures taken in a business suit?  It’s probably the last time I enjoyed wearing a business suit!

In part, I wonder if I never imagined myself as a home-maker (or nurse or admin or insert any other stereotypical feminine role here) because I knew I’d stink at it.  When I think of the skills and traits that I imagined were important for a stay at home mom, I don’t excel at any of them.

  • Nuturing and snuggly:  I have a bad habit of laughing when people fall and hurt themselves.
  • Enjoys spending time with kids:  Truth?  Not really.  At least not 24/7.  Kids crack me up and are a lot of fun, but my patience with repeating myself is kind of extremely low.
  • A green thumb:  I can barely keep a plastic plant alive
  • Enjoys arts and crafts:  I like sewing, but not as an art-form, if that makes sense.  I like the idea of art, but my brain isn’t creative in the artistic way.
  • Home decorator:  I think it took 5 years before I got all the pictures on the walls in our house.
  • Cooking:  Hate it and stink at it.  Kyle still does most of it in our house.  When I do it, we sometimes are pretty hungry at the end of the meal.
  • Clean:  I grew up in a house of neat freaks.  I was the outlier.  I do not like dirt.  But I’m lazy about picking up… To this day, I don’t make my bed and clothes are often strewn on the floor of the bedroom.  That is, until I get mad about something or I’m avoiding something, and then I go into a cleaning frenzy and nobody is welcome to talk to me until you can eat off the floors, counters, sinks and toilets.

Truth be told, since I quit working and focused pretended to focus my energy on the home, it’s gone into a shambles.  I look around it feels like a tornado (particularly two strawberry blonde F8s) have come through and the city decided it wasn’t an area worth revitalizing.  (Seriously, why clean when you get one room done and it’s dirty again before you finish the next.  I know futile efforts when I see them…that is, unless I’m in the frenzied “zone”).

It’s Kyle who takes the brunt of my SAHM mom inadequacies.  He knew when he married me that I’d never make a good housewife.  If that’s what he wanted, he would have stayed far, far away from me.  I think he actually pities me a little.  It’s like taking a hibiscus and expecting it to thrive in the desert (or any plant and expect it to make it a week under my care).  Thankfully, he loves me and he probably has to remind himself daily that it’s temporary.

We are also pretty honest with ourselves that, even though I am at home, the house falls pretty far down on my list of priorities.  My job is to manage Owen’s health and development and, without trying to brag, I’m really good at it.

  • A strength of mine is talking to experts about really complicated systems and then simplifying them for everyone else to understand.  I don’t get overwhelmed by the realities of the below picture and I intuitively understand how each area affects the others.  I have zero interest or skill in biology.  This is just the way my brain works.  In the past, I’ve used the skill to understand food manufacturing systems, apparel construction and multi-million dollar marketing campaigns.  Today, I use it to understand a 23 pound little boy, who by even doctor’s standards, is pretty complex.20130619-152032.jpg
  • I’m also really good at setting goals and helping the team develop strategies to achieve them.  In my opinion, Owen’s doctors and therapist are consultants.  I’m the decision maker and it’s my job to accept or reject their recommendations.  That probably sounds cocky, but I call that advocating and trusting that I know Owen best.  They are subject matter experts, I’m the big picture, Owen, expert.
  • I’m also good at communicating and understand what pieces of information are important to which care provider  (we are down to 7 specialist, 8 therapist, a pediatrician, a respiratory therapist and lots of nurses).  I keep everyone in the loop and let them know specifically where I’m looking for help.  I make the most of each visit; I feel lucky to have really good providers on Owen’s team, but I also realize that it’s my job to help them do their job well.

I know, without a doubt, that I deserve an F grade in my home-making skills, and some days…especially over the last month, I beat myself up for it.  And by beat myself up, I don’t mean I take action…I get so overwhelmed by how bad I am at it that I curl up in bed and get lost in a crappy romance novel instead of dealing with the reality in front of me.  Many days, I feel like I’m out of my element and am completely scattered brained.

And then I take Owen to an appointment and my head clears and I recognize me again.  It’s in those moments, that I realize that I’m Owen’s mom for a reason and that just behind God and Owen’s natural drive, I know that I’ve played an important part of how well he’s doing today.

I take pride in knowing that I helped make this transformation possible:

transformation

Maybe in many ways I suck at being a stay at home mom…but, in this case, I know I am the best woman for the job.  I think the six-year-old me who dreamed of business suits and important business jobs in her future would be proud of where she is today…no business suit (or shoulder pads) required.

 

Special Needs and Chlorophyll Have A Lot in Common

With a title like that, you must be thinking I’m sleep deprived and in some sort of depressive state since the sun doesn’t seem to shine anymore in Minnesota (and you might be right). You may also be thinking that mine isn’t the leading science mind and wondering what I could possibly know about chlorophyll (and you might be right).

Fortunately, Kristi over at Finding Ninee has a place called Our Land. It’s a land where empathy and wonder prevail. In a place like Our Land, me talking plant biology and special needs parenting all in one post suddenly makes sense…please read Why Special Needs is Like Chlorophyll and let Kristi know I sent you.

If you’re not already following Kristi, it’s a great time to start. She’s a blogger extraordinaire that I’m happy to call my friend.

Speaking of special needs parenting, I found this gem on Instagram on SpecialSiblings thread. Pretty awesome, isn’t it?

 

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