Time

Time is a funny thing.

That first year after Owen was born..that time was dog years and then some.  I’m not sure time could have moved any slower.  Each minute felt like a century.

People would often say, “this will get better” and it did nothing for my perspective.  The next ten minutes ahead of me seemed so far away that I really couldn’t see a glimmer of light at the end of that tunnel of time.  It’s not that I didn’t believe it would one day get better.  It’s that time was moving so slow that those days to better were too far away to start thinking about.

The smaller and sicker your child is at birth, the higher the risks for long-term delays and disabilities.  We knew Owen was very high risk in terms of long-term issues.  In the early days of ANRC, I shared a post, Preemie Parent Curse:  The Known Unknowns.  I went over so many questions we had about Owen’s future; would he walk, would he talk, would he eat, and on and on.   The answer to those questions seemed so far away.

I hated the wait.  I wanted predictions.  What was Owen’s future going to be?

And then something funny happened with time.  It went from a snails pace to warp speed.  Thirteen months have gone by since I wrote that post.  I’m not really sure where the time went.  I look at Owen’s pictures at that time last year…just learning to support his own head.

Owen showed off his feet

And now look how far he has come.

See all of the kids lined up around the stadium?  The line goes up inside the stadium and all the way back around to the far right of the photo.

Rounding the bases as the lead runner for the Kid’s Running of the Field at the Minnesota Twin’s stadium

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There is still a lot I don’t know about Owen’s future.  I still fear that other kids might not accept him because he isn’t doing everything they are.  It, of course, would be easier to prepare if we had a crystal ball.  But do you know what?  Whatever my worst fears were a year ago, Owen has already surpassed them.

I received an email from a mom who recently received a PVL diagnosis, she wanted to find some hope.  I replied that nothing I said would probably be the right words for hope, but if she really wanted to find it, she should look at her daughters.  The fighting that they have done in their short life to date…these babies never lose that fight and drive.

The unknowns are still there and they are concerning, but concern is different than worry.

I know that Owen is determined to be his best.  It used to be his best was making it through the day with the help of a lot of medical intervention.  Today his best is asking for his “nau-kie” (pacifier) and “nana” (blanket) after a busy day climbing on the toddler gym.  Tomorrow his best will be something else.

Sometime in the last year, my focus has shifted to what Owen can do instead of what he maybe won’t do.  I know that soon enough, maybe even too soon, I will have all the answers.  He’s growing up on me so quickly (starting school on Monday EEEEKKKKK).

Most importantly, whatever his future holds, I know he’s equipped to handle it.  Yes, Owen will probably have some differences from his peers…but you know what, I’ve finally realized…that’s okay.

In some ways, it has taken an eternity to get to today, in other ways I can’t believe he’s already almost 26 months old.  Time may be the most subjective measurement of all.  It feels different for each second, minute, day and year.

I am not “over it“, but I’m also not wishing time away anymore.

That’s worth something, right?

 

School – Not Just For Him

I’m a little shocked, but I think it’s actually going to happen.  Owen is going to start school two mornings a week starting the week of June 10.  He will be placed in a typical needs classroom (at the same school that Kellen attends) and have a respite (sometimes called para) teacher specifically dedicated to his needs.

This is a trial.  Owen has to prove that he can be part of the germ factory without needing prednisone or hospitalization.  I’m really anxious.  But I also can’t wait.  He loves going to the school and playing on the playground.  Yesterday he visited Kellen for Kellen’s year-end program in the classroom and checked out the big playground.  Owen will spend his time on the “Little playground” where the equipment is geared towards toddlers, but that didn’t stop him from exploring.

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I’ve been really excited about Owen going to school since applying in January.  I think it’ll be great for him to interact with his peers and to be part of group activities.  I expect it’ll help his development all around.

I knew the program was called Respite.  But, do you know what I never considered?  This program is great for Owen…but really it’s for me.  The county has reviewed our case and deemed that I deserve a break on occasion.  After two years of mostly me being Owen’s care taker, the county is going to help pay for most of the costs for Owen to go to school because they think mom needs it…that’s what respite means.

I do know what the word means, and don’t mean to suggest you don’t either.  It’s just that it hit me like a ton of bricks.  I’m going to have 6 hours a week to take care of me.  I can shower and shave my legs without worrying about Owen have a panic attack (he has a sensory issue with the shower).  Workout.  Run the errands without towing a kid or two along.  OMG!  I can clean the way I like to clean where I make a huge mess and then put it all back together again and I don’t have to worry about stopping for a feeding or accident protection.  For 3 hours twice a week, I won’t have to be feeling guilty about what therapy I should be working on with Owen.  I might even be able to reply to emails and voice mails (no guarantees, it’s only six hours a week:-)).

To be honest, these last two years, I’ve just been going through the motions without thinking much about what I need.  The blog was my main outlet.  There was nothing altruistic about me not thinking about me.  That’s just what happens in life sometimes, you get so focused on what has to be done that you miss that there might be help if you just stop for a minute to find out.

Are you wondering about programs in your area?  Every state is different on what/if is offered for respite care.  Pediatricians, Social Workers, Early Intervention and Schools that offer care for special needs children are all good places to start.  If I learned anything it’s to not assume you won’t qualify.  It’s worth asking.  For us, it was Owen’s level of need and our lack of family in our surrounding area that was most considered.  Also, the fact that we still pay for Kellen to go to school and that I’ve been unexpectedly out of work for two years contributed for the decision to give us a sliding fee rate.

Speaking of respite…Kyle is off work this week, so I’m heading to the coffee shop to visit a friend.  Happy Friday, everyone!

The Best Lessons

It’s not every day that I get to look at the day and think I just created a memory and gave an important lesson…for Kellen AND me.  Yesterday the stars aligned perfectly for that type of day.

Kellen, Owen and I were sitting on the screen porch watching the rain outside.  Owen was in my lap and I put him down and said, “Owen, it’s Kellen’s turn for snuggles with Mommy.”  Kellen climbed in my lap with a kiss on my cheek and we had this conversation.

Kellen:  The rain makes me sad

Me:  Why does the rain make you sad?

Kellen:  Everything is dark and it’s too wet to play outside.

Me:  Well, what about if we put on rain boots and rain coats and go play in the rain?  Would you like to see if can make the rain fun?

Kellen:  Really?!

 

Do you know what we discovered?  The rain can be a lot of fun, if you let it be.

Jumpmowervroom

bliss And beautiful too.

flower peace KellenThe day aligned perfectly because Kyle was home from work and could watch Owen.  By the end of the summer, maybe he’ll be walking and able to enjoy some splashing in the rain on his own.  Playing through the rain is a life lesson I definitely want him to know.

These pictures remind me of one of my favorite quotes that is so relevant when you’re in the throes of whatever life is handing out.

Life isn’t about waiting for the storm to pass…It’s about learning to dance in the rain.

-Vivian Greene

Vivian was a smart woman, but she must not have had little boys…here’s my little boy version of her quote.

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How Was It?

I feel like I dumped a couple of heavy posts and then disappeared last week.  We went out of internet and cell phone range for a long weekend at the in-law’s cabin.  Having received so many comments and private messages while I was away, the trip didn’t feel like the best ANRC steward approach, but it was a good healing approach.  There is something really cathartic about sharing difficult emotions and then being forced to move on for a few days.

I can say that the day of the anniversary was not nearly as difficult as the anticipation of it (a trend I am starting to notice).  We stayed busy with the drive up to the cabin and spending time with Sandy and Rusty.  That night, Owen woke up and wouldn’t settle.  I ended up holding him in my arms in bed and he slept on my chest while I read.  He stayed in bed with me until Kyle came to bed a couple of hours later.  I took a picture (blinded by the flash, not fake sleeping) because it’s the first time I’ve ever fallen asleep with Owen in my arms.20130529-102554.jpg

The wee hours between May 24 and May 25 seemed somewhat fitting for us to be snuggling.  Two years ago I would have given anything to know that Owen’s future could be this bright.20130529-102617.jpg20130529-102717.jpg

On the way home from the cabin, Owen had a date at the aquarium with his NICU girlfriend.  Two years ago, they were two of the sickest kids in the NICU.  This year they watched in wonder at fish and turtles.  I forgot to look at the animals much, I was busy being amazed at how far these two have come.20130529-102632.jpg

Throughout the weekend, there were a few times that the clouds would be just right and I’d get enough coverage to download email or FB comments on my phone.  Thank you to everyone who shared their stories with me.  I’m not sure that I’ve ever had a post get more private messages than Coming to Terms with “Almost”.  Many of the stories were from other families who experienced surgical NEC.  As is the case with this disease that takes the lives of about 50% of those who get it, some of the children made it and many others did not.  Just as so many of you said to me, thank you for sharing, it means so much to meet others who have been through similar experiences.  I am honored to know your child’s story.

If you want to share your story, feel free to leave a comment or send me a private message.

Coming to terms with “Almost”

I have to admit, the date has kind of crept up on me. May 24 (tomorrow) is the hardest of the anniversaries for me.  It’s the anniversary of Owen’s sickest day.

I guess, in some ways it’s good that I haven’t been focused on the date.  It probably means the wounds have started healing.  At the same time, I still wonder if I’ve really come to terms with that day.  Or, even if I should try to come to terms with it.  At the end of the day, we all know that Owen lived.  Honestly, sometimes even I (the trumpeter of not being “over it“) tell myself I should just move on and not worry about that day anymore.  Just leave it in the past.

I think I struggle with leaving it in the past, because in truth I wasn’t there when it was happening.  I was physically there and I hazily remember everything, but it was an out of body moment starting with the 8:00 AM phone call from the neonatologist.

The call woke me up and I wasn’t really understanding the magnitude of the situation.  Owen had been put on the oscillating vent the afternoon before, so I knew that he was sick, but when your child is already on life support to begin with, it’s not always crystal clear the difference between “sick” and “high concern for his chances of survival”.  Finally the doctor said, “he’s on 100% O2 and we’re having a hard time keeping is saturations in the 80’s”.   Oh!  It started to click. I then said, Kyle’s just in the shower and was on his way to the hospital.  She replied, “I think that would be best.”

That sentence did it… it officially clicked.  With the proverbial click, the rest of the experience became out-of-body.

There are moments that I remember like I’m still in them.

Kyle intercepting me at the NICU door and explaining that Owen would be needing emergency surgery.  They feared NEC.

Walking into the nursery and seeing the cover of the isollette off and the fellow and neonatologist setting up a bit of a home base at his bedside.  Owen’s color, everywhere, was black and he was so puffed up that he looked chubbier than a full term baby.  The vent was puffing so many breaths into him each minute that it looked like he was laying on some sort of shaking table.

The social worker, Rachael, finding Kyle and me in the family room and saying, “Dr. Ramel came to find me because she is very concerned for Owen.  Is there anyone I can call for you?  Is there anything I can do?”  She could see in my face that I was trying to speak, but couldn’t.  Simultaneously, she spoke and I sobbed the same word…”pray.”

Shortly after she left us, Chuck, the chaplain found Kyle and I in the family room.  We were each on our cell phones with family.  I saw him look at us being busy on the phone and backing out of the room.  I sighed a breath of relief because talking to the chaplain would have made it much too real.

Walking through the NICU hallway with tear streaks down my face and seeing the looks of pity on the staffs’ faces.

Getting the debrief from the surgeon and hearing him say, “this has to resolve itself tonight” in reference to Owen’s bleeding.  The neonatologist immediately following up with asking us if we can stay the night.

Getting our room and taking a break from the bedside to lay in the fetal position and plea out loud with God to “not let him die”.

At 3:00 in the morning, the fellow, who was staying bedside, told me she felt Owen was stabilizing and that I should get some sleep.  I was in the room for 15 minutes when there was a knock on the door.  Owen was back up to 100% O2 and they were afraid they may need to open him back up.  I understood that Owen wasn’t going to be able to tolerate another surgery that night and hoped it wasn’t the case.  What I didn’t understand until Kyle and I walked down the hall was that the entire operating team and all of their equipment was lined up in the hallway ready to go.  That hallway had been people free 15 minutes prior.  We rounded the corner into the nursery and the surgeon and the neonatologist turned to us with what Kyle describes as, “what the fuck just happened” looks on their faces.

Fortunately, it was a false alarm.  Owen’s catheter got plugged and so his bladder became full of urine, further distending his already severely distended insides.  His lungs had no room to open.  The catheter was pulled and pee went everywhere.  Owen still needed 100% oxygen for another 24 hours after, but they did not have to do the surgery.  Thank God.

I know it sounds like that is a lot of the day to remember, but I just told you every moment of a 48 hour period that I remember and even though, the memory is out of body…like I’m looking at myself experiencing the day.  I know the rest happened, and I know I was there, but I don’t feel like I was actively a part of it.

I assumes it’s my brain’s way of protecting me – making those days a haze.  There wasn’t ever a moment when he coded or when the doctors asked if we wanted to stop treatment.  We fortunately did  not get to that point, but when his surgeon last saw Owen he said, “that day traumatized me”  He’s not the type of guy to say that unless he meant it.

It traumatized me too.  I mean really, how do you come to terms with the fact that nightmare really happened?

I hear it takes time.

I’m still waiting.

Happy AND Healthy?

I went to a Parent Advisory Board at Amplatz last night.  It’s the first time that I ever pulled into the parking garage and had a hitch in my breath.  The hitch that said, “I hate this garage”.

Nothing personal about Amplatz Parking Garage.  It’s actually a brand new facility that opened a couple of weeks after Owen as born.  What I really hate is what the garage represents.  Those times when Owen was admitted when we’d wearily pull into that garage night after night after night.  230 nights worth.

That feeling of dread was palpable, but at the same time, it felt really far away.  It then occurred to me, he’s done it.  It’s been a year.  Technically, he spent a night in the hospital in October, but it was less than 24 hours so is only considered “observation” not an admittance (that’s what the Ped says, so I’m sticking with it).

I never thought it possible.  After spending 230 days of his first 53 weeks in the hospital, can it be that he has gone an entire year?

I often see or hear people say, “My son was born at X weeks and only Y pounds, but today he is a happy and healthy Z year-old”. I’ve never been able to say that.  It’s pretty hard to call a child who is oxygen dependent “healthy”.

But you know?  He’s almost there.

In his last hospital stay, Owen missed a clinic appointment with surgery for his g-tube change, so his surgeon came to the PICU to do the change and train me how to do it.  He asked “why is he here”?  I explained that it was MORE respiratory issues and the surgeon looked so confident when he said, “This will get better.”  He knew me well enough to know my look said I didn’t believe him and he looked me in the eye with the arrogance of a surgeon and said, “it will”.

And you know?  It has.  Owen has not been on oral steroids since Christmas.  Not one dose of prednisone in 2013.  Not one.  Amazing.  I actually don’t even have any in the house right now; the bottle we kept on hand has expired.

Of course, because of my battle with the jinx, this disussion has me a little on edge, but it’s important to celebrate.  Owen deserves to be celebrated for how far he has come.

Owen does still have health concerns and sees lots of specialists, but the first year of his life the focus was on keeping him alive.  The second year we got to focus less on health and more on development and look how far he’s come.

He loves saying words!

He’s walking with a walker that he just got on Tuesday (video from day 1)!

It’s kind of hard to believe that this guy

Owen, 2 Weeks old, eyes finally open

Is now this guy

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I’m still not sure I’d say Owen is Happy AND Healthy, but he’s definitely happy and getting closer and closer to healthy.

Oh, and here’s Owen’s message to the fellow two-year-olds that see him at school and say, “Look at the baby”…

nobaby

In My Defense: Harlequin Novels Count As Literature (For Now)

That’s right, I have a new guilty pleasure and I’m not going to feel (all that) guilty about it.  Okay, I’m feeling a little guilty, or at least embarrassed  because I sure as hell won’t be adding these books to my Goodreads account…but it’s true…I’m reading the free and often cheesy Harliquin and Harliquin-like romance novels from the App Store and I’m kind of liking them.  I’ve not just read one trash book.  Several.  Sometimes several in a week.

I do feel the need to apologize to my High School AP Lit and English teacher, Mrs. Risch.  She did teach me better than this.  Before Mrs. Risch, Danielle Steele was my author of choice.  (Fortunately my parents didn’t read books because I can promise you if they knew what I was reading, there is no way they would have let me read Danielle Steele at twelve-years-old.)    I loved her period pieces even into college I read them.  However, Mrs. Risch didn’t let me graduate high school without knowing the value of real period pieces like Chaucer, F. Scott Fitzgerald, John Steinbeck, Sinclair Lewis and, of course, Jane Austin.

My Mother in law, Sandy, has also been a great source of book recommendations.  She’s an avid reader and any of the books on my Goodread account are probably recommendations from her.  Jodie Piccoult, Wally Lamb and Alice Seibold are examples of more modern authors I’ve enjoyed.  Besides Novels, I’ve also been a big fan of those trendy thought-provoking business-minded reads.  Malcolm Gladwell – type books.

So, anyway, I’m not going to say that I was ever uber-sophisticated with my reading.  Kyle loves to read Thomas Pynchone and Ayn Rand and I’m not nearly smart or patient enough to get through one of their books.  If I had to some up my book choices, I’d say, I have always liked really well written but simple-to-read books with relatable, strong characters overcoming thought-provoking plots.

And now, I’m reading Harliquin romances.

In case you’ve never read one, they typically are not well written, especially not the free app store version with all the typos.  The characters are not very often that interesting and even if they are, because the books are normally about 250 pages, there is no time to develop them.  Also, there is nothing relatable for me about two people meeting, despising each other and then falling prey to mutual attraction that magically turns into love, marriage and happily pregnant in a two to 30 day period.  I mean seriously, even the 50 Shades trilogy had the decency to discuss [in painful detail] every sexual encounter over a full year period.

So why do I keep reading them?

They give me a mindless escape for those hours between when I want to go to bed and when I can actually go to bed.  I always know there is going to be a happy ending.  The people will be beautiful, rich and successful and they will take each other to the greatest heights ever with their biggest obstacle being proving their love to one another.

It kind of makes me want to puke just writing it…it is trash.  However, yesterday’s trash is sometimes today’s escape.

I like escaping every once in a while.

The books I read in the past challenged my thinking or gave me intense experiences or harrowing stories of people overcoming difficult circumstances.   Excuse me for swearing twice in one post but, why?  Why in the hell would I want to read about that kind of stuff right now?  I have zero need for made-up adrenalin in my life.  Intense is a little too close to home.  No need to seek intensity when you’re still picking up the pieces of your own intense and very real life.

Don’t get me wrong, I’m not suggesting I don’t have a wonderful life.  I do.  I have a really blessed and great life.  It is also exhausting and intense.  And some nights, as I listen to the snores of the three loves of my life echoing off the walls upstairs, I like to moonlight in a fantasy world of a Harliquin romance.

I can’t say I’m proud of my most recent book choices, nor will I recommend many of them, but I do accept that, for now, I’m okay not getting a lot of mental stimulation from what I read.

PS, if you want to watch a movie with me, please note, my movie choices are looking a lot like my book choices these days.  Light, funny and over quickly is about all I have patience for in my entertainment.

Endless love
Millzero Photography / Travel Photos / CC BY-SA
 

My Get Through The NICU Anthem

When Owen was in the NICU, U2 came to town.  They played a small venue for their standards.  The U of MN, Football Stadium, TCF field…there is not a bad seat in the venue.  I’m a big fan of U2.  My friend Janet, not as much, but she loves me and so we got last minute tickets.  Just after the concert started, the rain started falling.  It was a heavy whipping rain and we could see lightning in the distance, but it never got close enough that they had to shut down the show.

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There was something magical about the night for me.  Owen had already been in the NICU for three months and there was no near-term discussions of going home.  I really needed that night to dance in the rain with one of my closest friends.

I love most of their music, but, there was one particular song that struck a cord and from that moment it became my anthem.

Amy Winehouse had just died and so Bono and The Edge sang a soulful accoustic version of Stuck in a Moment dedicated to her.  The song had been written by the duo in memory of Michael Hutchins.  They say it is a love song, but a bit of any angry love song as Bono describes in this Late Night with David Lettermen Clip.  It was written with drug abuse in mind, but really, it’s for anyone who is stuck.  Anyone who is stuck in a place and not making the choice to keep moving forward.  I didn’t have a drug problem, but I was stuck by the weight of the burden I was carrying.

To me, Stuck in a Moment is about hope and a friend letting you know they believe in you.  I had, and still have, friends and strangers letting me know that they believed in me, but it wasn’t until hearing it in a song, that I really heard the words.

On the rough days in the NICU, I often had this song on repeat in my ear buds.

I never thought you were a fool
But darling, look at you. Ooh.
You gotta stand up straight, carry your own weight
‘Cause tears are going nowhere baby

You’ve got to get yourself together

 

You’ve got stuck in a moment
And now you can’t get out of it
Don’t say that later will be better
Now you’re stuck in a moment
And you can’t get out of it

I’ll admit, yesterday was one of those days for me.  I was feeling sorry for myself with the snow coming down as some sort of April fools joke on May Day.  It was one of those days where I seriously felt like I needed to give up the idea that I could do this stay at home mom thing and go back to work.  My day started with a whiny 4 year old, Kyle and I were snipping at each other and even Owen was crabby.  We went to the GI doctor (I’ll update on Tuesday) and I wasn’t prepared the way I like to be.  I got what I wanted, but it was harder than it needed to be.  I wanted some comfort food so I attempted to make Beef Stroganoff, It wasn’t as good as my mom’s and I was disappointed.  I let Kellen pick out a small cake for dinner, because I wanted some cheer.  The cake was good.  Really…the day wasn’t that bad.  But I was stuck in a moment.  Kyle went to bed with the boys and it took everything I had to not sit down and cry.  Instead I went to Target until they closed and then came home and put this song on repeat.

You’ve got to get yourself together
You’ve got stuck in a moment
And you can’t get out of it
Don’t say that later will be better
Now you’re stuck in a moment
And you can’t get out of it

And if the night runs over
And if the day won’t last
And if your way should falter
Along this stony pass

It’s just a moment
This time will pass

And it did.

This morning we woke up to upper 30’s and no snow.  50 miles away, they have 15 inches.  It stinks to be them, but since we were expecting a blizzard.  Upper 30’s in early May felt like a gift.  Kellen was happy as could be.  Owen’s been making me laugh all morning.  I took a shower.  I shaved my legs!!!  And then he he fell asleep in my arms.

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Yesterday, I was stuck in a moment.  Today it has passed.

What songs helped you get through the NICU and the time after?

So Many Emotions

I have to admit.  I’ve had a really hard time focusing lately.  I thought I could blame Kyle’s staycation and his messing with my rhythm, but the truth is, my house is just as messy, or messier, than what it was when he was here.  I’m still struggling to reply to emails and be a gracious person and I’m constantly forgetting things like putting Owen’s eye patch on…or  bigger things…like feeding him.  (Okay, before you go calling CPS.  He is getting fed.  But not always on schedule.  I’ve been needing to do some catch up overnight lately.)

I thought it was “just a funk” with Those Anniversaries…and it probably is to some degree.  There is also the weather.  We got another 6 inches of snow yesterday.  Yes,  April 18 Blizzard.  Even Pollyanna might start cursing the clouds at this ridiculousness…and we all know I’ve never been accused of being Pollyanna.  (Maybe more like Pollyanna’s brutally honest and often sassy big sister…did she have one of those?)

After a lot of personal reflection and writing and talking to whomever will listen…I think I’m starting to figure out what my deal is.  My issue is my thoughts and emotions are as scattered as the clothes strewn throughout my couch.  The problem is trying to figure out how to get the combination of celebrating and healing right.

I know a lot of people are thinking, “well, Tatum, there is not ‘right’ to healing or celebrating”.  And I agree with that statement.  However, it sure seems that people, including  myself, have a lot of tips on what I’m doing wrong in the process.  You know…

You can’t worry too much about the future, it will all work out, no matter what it is.

And then there is:

You have to go ahead and let yourself feel what you’re feeling.  If you push the feelings away, they are only going to hurt more.

And, I’ve also heard:

The past is the past.  You need to let yourself move on.

The advice, I am also guilty of giving is:

Just try to be present in what you’re feeling in each moment.

 

The problem is not being present in the moment.  It’s with WHICH feeling in each moment am I supposed to be present?  Because each and every moment, I fully and justifiably feel each of these emotions.

  • I’m amazed and astounded at how far my children, and our whole family, has come.
  • I’m jealous of those who have no idea what this path is like.
  • I’m joyful for Owen’s beautiful smile and Kellen’s contagious laugh.
  • I’m grateful for and deeply in love with my husband and really miss spending more time focused on us.
  • I’m conflicted in finding the balance for myself and the boys/man of our house.
  • I’m concerned with the increasing signs of anxiety that Kellen has been showing and unsure of how to best help a child as young as he.
  • I’m nervous about sending Owen to school but am also committed to giving him the most well-rounded experience that we can.
  • I’m full of guilt for the times I’ve lost patience and yelled or slammed the soap dispenser on the counter or stomped my feet like a two year old in front of my kids.
  • I’m excited watching Owen use more words and Kellen mastering writing his own name.
  • I’m proud of the life we’ve been able to give our kids.
  • I’m so sad  for the babies who aren’t here.
  • I am grieving the perfect pregnancy that I didn’t get.
  • I am horrified by and numb to what we all experienced in the NICU.
  • I’m angry and I mean, royally PISSED OFF that these things happen to innocent babies…to anyone…to my kids…to me.
  • I’m ashamed that I’m so angry and lost as to what to do with it.
  • I am humbled by and deeply thankful for the overwhelming support from my friends, family, acquaintances.  And this online preemie community?  It’s surpassed anything I’ve ever imagined.  I have so much gratitude.

Then there are all the other feelings that I don’t even know how to put words to yet.  Some are good and some are bad.

And in it’s entirety, it is beautiful.  I know this; this life of mine is – and these lives of all of ours are – beautiful.  But some days…sometimes some weeks, it’s all really overwhelming and confusing and looks more like the scattered laundry accumulating on my couch than the mesmerizing pattern of a zebra’s stripe.

Those Anniversaries, that’s what they do, they amplify everything, make each emotion so big, that I can’t always pick out which one is my focus for each moment.  I truly believe, each emotion I feel is worth acknowledging and valid.  I deserve to give each feeling the time it deserves, but I also have to give myself the power to step back and see the the beauty of the bigger picture.

And when I do that, do you know what the essence of the big picture is?

It’s love.

I’ll try to show you what I mean…

I’ve been waiting to show you all this gift until I could get a real photographer to capture it , but sometimes, timing is more important than the perfect shot.  Owen was given this amazing costume by an ANRC reader.  She’s on my ever growing list of moms I want to visit one day…a stranger who I love…who, based on nothing but words on a blog and shared experiences, loves our family.

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Another preemie mom I plan to meet some day (I know a mutual friend will get her to Minneapolis soon), she created another image of love.  I think hers is pretty right too.

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I will never be the person who says that these things happen for a reason or that it was for the best.  I would definitely give my son a different experience if I could.  However, I will say that many of the emotions that I feel are because I love so deeply.  The hurt, anger and the pain are because I care and had hopes and dreams for another road.  My son didn’t get what I hoped for him and I didn’t get the memories just as I envisioned them but I did get love in many, many beautiful ways.

Thank you preemie moms.  Thank you friends and and family.  Thank you for helping me see the big picture when I sometimes get too overwhelmed with the pieces.

Owen’s birthday is going to be better because of all of you.

Those Anniversaries

Tonight is the night.  It’s the two-year anniversary of when our journey began…or at least, when we knew it had begun.  It’s the day that I timidly made the call at 10:00 PM on a Saturday night to the on-call OBGYN because I just felt something wasn’t right.

I had spent all evening laying on the couch scouring the internet for pre-term labor symptoms.  They are kind of vague, but I supposed that I could check three of the five.

My dad was visiting.  I wasn’t being very welcoming.  But, he’s my dad and he knew something was wrong.  He was sitting at the end of the couch that I was laying on.  My feet over his lap.  I think he had been watching me for a while.  Finally, he put his hand on my foot and asked if everything was alright.  I saw the concern in his eyes.  (He’s a preemie dad, mind you.)  I knew that he felt it too.

I went upstairs, Kyle came up minutes later.  I needed someone to tell me I was crazy and that there wasn’t anything wrong.  He didn’t.  He told me to call the doctor.

I explained everything to the doctor expecting (or at least hoping) he’d be the one to tell me I was overreacting?  He didn’t.  He took it much more seriously than I ever imagined.  I was told to go to the hospital immediately.

Once at the hospital, things very quickly spiraled out of control. We all know the rest of the story, but it’s the anniversaries that are the struggle.

Overnight tonight (April 16/17) is the anniversary of my being admitted to the hospital on strict bed rest.

Sunday is the anniversary of Owen’s birth.

May 24th is the day that I’ve yet been able to write about in detail.  Kyle and I talk about it… in bits and pieces.  Last year, I could only share a picture.

June 13th…well actually, it was the next morning on the 14th, was the first time that my knees buckled and I slid down the kitchen cupboards in a sob as I learned of the surprise passing of Owen’s first best buddy.

July 11th, Owen was in the OR for six hours.  They weren’t sure he could tolerate such a long surgery, but his liver was getting very sick from being exclusively fed TPN since birth. His intestines had to be re-attached in 4 places.  Clearly, I must have, but I don’t remember breathing that entire six hours.  I was so proud of Owen that day.  Once again, he did when a lot of people wondered if he could.

July 31st, after 100 days in the NICU, Owen was finally moved to the feeder grower team.  He didn’t stay with the team for long

September 1st, broken bones.  Lots of broken bones.

September 25th, Nissen and g-tube.  The surgeon kept telling us it would be hard on Owen.  I didn’t listen.  It was incredibly hard on Owen.  It was the first time I really questioned if I was pushing Owen too hard.

October 19th.  Home

October 25th/26.  Readmitted.  Owen’s temporary g-tube stitch came lose.  He had a 10 minute operation to change him to the Mic-Key, but had to spend a night – back in his same spot in the NICU – for observation.  Surgery #7 was finally an easy one for Owen.  I slept in the recliner next to his bed that night and was woken at 6AM to the call that my grandmother passed away that morning.

These are the moments that haunt me.  The anniversaries that stretch out before me for the next seven months.  I hear it gets easier each year, but I don’t know.  Last year was hard in a different way.  Last year I was defeated because we were still in the throes of it all.  Owen celebrated his first birthday in the PICU on bi-pap with a rate (“rate” means he was being given breaths by the machine).  Really feeling the emotions of what that anniversary meant was a luxury I didn’t have time to entertain.  I was still, for a full year, in zombie mode.  Marching through what needed to be done.  Pushing the pain away, hiding it somewhere deep down.  But pain doesn’t work like that, does it.  It can’t be hidden forever.  It will always find you and for me, here it is…in the form of those anniversaries.