Closer to Love

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While getting ready this morning the song “Closer to Love” by Mat Kearney came on.  It was the first time I had heard it.  While I didn’t catch every word, the lyrics I needed to hear came through.  “I guess we’re all just one phone call from our knees…crying in her room , praying Lord, come through…You pull me closer to love, closer to love.” I can’t begin to assume what the song writer meant by each word – but that is what I love about music.  Great songs can take on different meanings for each listener.  They can provide words to feelings too hard to speak aloud.  This song did this for me.  Hence a new blog post, my first in years.

It is undeniable that I have been through a lot in the past six years.  I watched my mom go through sickness, die, planned her funeral, and still grieve her loss.  Then I watched my twins struggle to survive for months, learned a whole new world of medical terms in order to parent them and adjusted to a world with kids who need more.   I took deep breaths for a couple of years before I stood with my dad as he battled and lost to cancer, and again, planned another funeral.

Now I learn how to survive, to carry on, to grieve, to examine life as I never have before in my new world of “normal”.    All of this has irrevocably changed who I am.  Some changes have been or the good, others have not – I am working on those.  I have always been a reflective person and I find myself, in my quiet moments, while they may be few and far between, reflecting on my life as it has turned out so far.   These moments sometimes lead to me asking “why?” or “how?”  – I sit stuck in wonder of how my life ended up the way that it did.  I never saw any of this coming.

This line of thinking never helps.

It is what it is.  I can’t change it.  I can only learn, adapt and move on.  Hopefully for the better.

Today, this song, “Closer to Love” brought on a revelation for me.  The message was so intense that I found myself sitting in my driveway writing on every scrap of paper I could find before heading off to run errands.  Many blog posts have popped into my head since losing my dad.  I haven’t written any of them down.  I don’t think I was ready to, to really examine my thoughts seemed scary to me.  I couldn’t be sure where it would lead me and I wasn’t brave enough to pick up my pen and find out.  Today, this post idea, these words gave me a sense of hope.  Dare I say, of joy? An emotion I can admit I have been avoiding over the past year.  Joy, as the opposite of sadness  is just as difficult to experience for a person going through grief.  When you feel joy, you can’t help feel the juxtaposition of the sadness you normally carry with you each day.   This idea of being closer to love became so clear to me, and became a positive twist on the obviously negative moments of my past six years.

This morning I came to realize that each struggle, each death, each trying time has led me closer to love.  Not the “I love you because…” kind of love, but the love that one feels with every inch of their being, down to the core of a person.  Gut-wrenching love that can make a person feel connections with people that wasn’t possible before the true meaning of love was truly understood.

I knew I saw the world differently after my mom died.  I knew I became infinitely more empathetic to the people around me after the boys were born.  Since my dad died I find myself more forgiving, more considerate and more loving.  This morning I realized these changes are because I now know, and have learned to recognize in my life, true love.

Before these turn of events you may have heard me say, “I love you because you make me laugh.”, “I love you because you…(fill in the countless things here)”  I know we have all said it, been to weddings where brides and grooms profess their love for each other in terms of the “becauses”.  These reasons are sweet, they are nice compliments to give a person, but they can’t be the basis for true love.   With real love there is no room for because – in real love – you just love.

Telling someone “I love you because you make me laugh.” will make them feel good that you appreciate their sense of humor but what happens on the days, or months when they don’t make you laugh?  Does your love diminish?  Professing to your partner that you “love them because you know they will always be there for you.” is a comforting thought.  But what happens when you don’t see eye to eye during a difficult time and your partner isn’t standing in your corner defending you?  Does your love weaken?  These prerequisites on your love are only natural, but fragile in their existence and all too reliant on all things remaining the same as it was on that first day you fell in love.  An acquaintance of mine is completing research for her doctorate on effects of trauma on a marriage.  She shared with me that statistics show an alarmingly high rate of divorce among parents who find themselves dealing with medically fragile children in the Neonatal or Pediatric Intensive Care Unit.  Is that because they shared the “I love you because…” kind of love?  A love based on what a person does for you?  For how they make you feel, who you are when you are with them?  In times of trauma partners do very little for each other and  instead focus their efforts and attention on just getting through the day.  Each one struggling just to keep themselves from falling apart, with little energy left to check on their partner.  The “becauses” come less frequently and a couple prerequisites for love are pushed to the side. Well, at least that is how I see it.  I am not a doctor, a psychologist or an expert on love.  I could be totally wrong – I can’t presume to know why marriages fall apart.

Perhaps we should say “I love it when you make me laugh.” or “I love it when you make me feel safe and supported.”  This way your love for a person isn’t tied to their actions.  You love their actions in addition to the deep down love you feel for your partner.  You can love an action, you can love getting flowers, love getting love notes…just as long as these aren’t a stipulation for the love that you give a person.  Because, I can tell you from too many periods of trials in my life, that getting flowers, love notes and being the center of someone else’s world gets put on hold when you face a time of life and death.

True love accepts.  My parents were flawed.  I still loved them.  I still love them.  I love them regardless of their flaws, and I don’t need to ignore their imperfections in order to keep my love alive for them.  And since they are now gone, all of my “becasuses” have to be thrown away.

As my mom lay in the ICU, already passed on, I held her hand and kissed her forehead.  In those moments I have never felt such intense love.  In those moments I had to stop loving her because I knew I could always count on her to be there for me.  I couldn’t love her because she would always support me, or always be there to help me raise my kids, or give advice or listen when I needed to vent.  In those moments, all of those things my mom had previously done for me ceased to be a possibility for the future.  As I sat by her bedside and rubbed her hand, I sat there and cried and just loved my mom.  Gut-wrenching, down to my core kind or love.  That moment brought me closer to love.

During my dad’s final weeks things were awful for him and for us.  And that is about as much detail as I can bear to explain.  It was just awful.  In spite of it all, in the midst of it all I loved my dad more fiercely than I had ever done before.  His time of doing things for me were over, and still I loved him.  In those weeks I felt more surrounded by love, as my closest family members sat beside him and poured their love for him out for him to hear.  Witnessing this kind of love changes a person, and now I can say that those weeks absolutely brought me closer to love.

In the same way as losing my parents helped show me the true meaning of love gaining my boys, with their rocky beginnings, also brought me closer to love.   The first few weeks after Griffin and Carter were born and they struggled to survive in the NICU my husband and I sat at their bedsides.  I examined their translucent skin, the wires and millions of dollars of machinery attached to them to keep them alive, we couldn’t be sure if they would make it through the day.   I hadn’t even held them, I’d only touched them briefly with the slightest of pressure a handful of times.  And still I sat there, day in and day out thinking about how much love I felt for these tiny little boys.  There was no room for prerequisites, there was only room for true love.

This revelation on love has also taught me a valuable lesson on how I view my own self worth.  Like most people I know I want people to like me, and some to love me.  Throughout my whole life I have gone to great lengths to ensure that I would be worthy of a person’s love and approval.  Sometimes, my desire to be loved would lead me to bend and break myself down in order to prove just how worthy I was of their love.  All these changes to my own sense of self just to show how lovable I was.  However, just as walking through the life that I have over the past six years has brought me closer to the true meaning of love I feel for others it has also taught me to recognize the true love I share with others.  Love without prerequisites, love given to me, not because I: make them them laugh, boost their self esteem, buy great gifts, have the right look…the list of prerequisites go on.  But the kind of love given to me just because I AM.

Recognizing this love around me brings me joy.  It also gives me permission to let go of those in my life who loved me with a love full of prerequisites.  I lost family this year, and not because of death.  But because I now understand love and this understanding gave me the strength I needed to let go of relationships based on me bending and ignoring my own self to prove my worth to them.  I now know I don’t need to do that.  I am worth love.  SO I can walk away.  It still saddens me to lose even more family when I feel like I have already lost so many.  However, I now know I deserve to be with those who know me and love me in spite of; not because of.

And so here I sit in what I believe is a pivotal time in my life.   This day has given me a gift of a small sense of understanding during a time when I find myself questioning.

If nothing else, I can say that these years have brought me closer to love.  And for that, I am grateful.

Listen to “Closer to Love” here.

 

 

 

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Oh, Oprah, I Miss You So!

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It wasn’t until I was driving in my dad’s car a few weeks ago that I realized how much I could have used a little Oprah in my life these past few years.  Dad came to babysit while I went to an unemployment meeting and I happily took his car (equipped with satellite radio) my messy mini van and I needed some time apart!  And oh I how loved the satellite radio.  Poor Griffin, who was tagging along for the meeting (I was hoping an antsy baby would speed up the process at the unemployment office ;)) had to endure me belting out one broadway song after another on the way there!

However, after a painful meeting hearing that “there isn’t much they can do from me” from a young 20 something woman, I was in no mood for show tunes on the way home.  In a horrible, disheartened and over all angry mood I searched the radio for something that fit the bitterness that had taken over my mind.  And then I heard it, the calm, logical, caring voice of Oprah as she led her life class on forgiveness.  That voice of reason and compassion was exactly what I needed to get me out of my angry funk as I drove home.

I always liked Oprah when she was on the air.  I admired her spirit and integrity as she approached guests and offered support.  Call me crazy but when I heard her talking on the radio, sitting there in my place of self-pity, it was like hearing an old friend.  In this life class she was using clips from old shows and stories from guests to examine the difficult task of forgiveness.  I listened because it was her, and since true forgiveness is hard I was interested to hear what she had to say.  But I wasn’t listening because in that moment in the car I thought my issue was a lack of forgiveness.  It is funny how advice and guidance find you when you need it.

Oprah’s first guest was a woman who was married for several years to man who turned out to be gay.  When he came out to her, she exploded, he in turn sued for alimony and most of her riches.  She of course, stayed angry.  They both came on the Oprah show, she still harboring lots of anger.  Oprah explains that during the show she kept thinking that she was in over her head.  That this anger that was festering in this woman seemed to be untouchable.  Years later the guest came back on the show – with her ex husband, to discuss her journey to forgiveness.  She explained that it came to her after she realized that all the anger she was directing at her ex husnabd did nothing to hinder his life, only her own.

Next, Oprah talked to an expert of some kind on forgiveness, maybe an author, a psychiatrists?  I don’t remember the particulars as I was driving, and busy self-reflecting as I listened.   She talked about how it was in that interview that she changed her entire view on what forgiveness means in a tangible sense.  Her guest explained to her that “forgiveness is letting go of the hope that the past could be any different from what it is.”  And in her “Oprah way”, she repeated the statement over and over again, changing a word or two each time to help us understand.

“Forgiveness is letting go of the chance that the past will change.”

“Forgiveness is accepting the fact that the past cannot be anything other than what it was.”

“Forgiveness is understanding that the past will not change.”

As she spoke, I got to thinking.  Why am I mad?  What about this unemployment meeting got me so fired up?  Here it is, I was mad that I had to go there at all.  I was mad that this young woman didn’t know what to say, or how to help me change careers.  But I was really mad that I lost my job.  Losing my job is in the past.  It cannot change.  Until I can forgive my district, the decision makers that decided to shrink staff to save money , I was still going to be angry.  My anger wasn’t going to change what happened months ago.  And so, as I drove I forgave them.  Not because they asked for forgiveness, and like Oprah’s first guest – not because my anger was bringing my district down – but because it was bringing me down.  I didn’t forgive them for their peace of mind – but for mine.  What is done is done, there are no “take backs”, I must forgive.

Hearing Oprah repeat this statement, now another mantra for me, led me to think about all the other things that I have gone through in the past few years.  Have I forgiven myself for choices I had made, things I did or didn’t do?  Have I forgiven people close to me for saying things that may have hurt, doing things that I disagreed with? While it is unfair to blame her, in the early stages of my grief I was mad at my mom for dyeing.  Have I forgiven her for leaving me?

I think when life gets hard it is easy to be angry.  I think it is easy to play the blame game, to look for scapegoats.  Sometimes others are to blame.  Sometimes things happen that deserve anger.  I think it is fair to say that I have gone through some of those things.  But anger is cantankerous, left alone it could fester.  You have to address its cause.

What a freeing feeling it was to drive along, listening to the ebb and flow of Oprah’s easy conversations on forgiveness and examine what it was in my life that needed my forgiving.   I felt a release, as corny as it may sound, of a weight that I had been carrying around since the bubble that protected my world a few years ago started getting holes.  I was holding on to those hard times not always as badges of honor for a battle hard-won but sometimes as excuses to play the victim for all the unfair things that I have had to endure.  As I thought of each one I heard Oprah repeat, “Forgiveness is letting go of the hope that the past can be any different from what it is.”  And as I heard her say those words in my head, I let go.

So thank you Oprah!  I needed to hear this.  I needed to be reminded that my anger does nothing except hinder me, I needed to be told to let go. 

Minivan Mondays

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I fought getting a minivan.  I just didn’t see myself as one of those moms.  I think it was the immediate “middle-aged mom” image, picturing myself behind the wheel of the ultimate exhibit of a practical car that made me cringe a bit.  But the truth is I am approaching middle-aged (although I am often surprised by this when I look in the mirror and realize I am no longer 24.  I think in my head I will forever be stuck at age 24. ) I have FOUR kids (two of whom are twin infant boys!) and TWO dogs, gymnastics, baseball and soccer practices to take my daughter to, countless playgrounds, zoo visits, and other daytime adventures to go on, not to mention all the groceries!  And the reality is, when I really think about it so many of my “mom friends” drive mini vans – and I’d like to think I have cool friends, so what image was I conjuring up?  The women on the commercials driving their kids to soccer always look so put together, I love Claire on Modern Family and she drives a minivan, my own mom drove a minivan – and the only reason I think she bought one was to fit her golf clubs and friends for wine tours!  I have come to the conclusion that my aversion to minivans is not one based in reality.  So, I let it go.  I even went with my husband’s first choice of a minivan – the one with the amazing interior but not so trendy exterior – because as he said, “It’s a minivan Alison, we’ll never be able to achieve trendy!”

And now my minivan, with its automatic doors,  stow ‘n’ go cargo space, seats for girls – way in the back, heated seats, and even the DVD player, has become my haven.  After a long day on the go between doctors appointments and swings and slides I find myself lingering in the driveway when we arrive home reveling in the quiet of three sleeping kids.  I’ve been known to stay there for up to an hour, reclining my seat, putting my feet on the dashboard  – soaking up the warm sun and falling asleep – right there in my driveway.  It is just so peaceful (and comfortable) and I know once I start the process of unloading the crying will start, I will have to make bottles and change diapers, get snacks, let the dogs out…in the minivan I can just sit – and relax!  Naptime in the minivan has become a staple in our house (or should I say our driveway) as we sleep and wait for Kennedy to get off the bus.  The kids are sleeping anyway from the drive home so why not take advantage of the temporary quiet?!

And then there are Mondays – Kennedy’s gymnastic days.  With four kids and being a full-time stay at home mom my moments alone are few and very far between.  So on Mondays I drive Kennedy to gymnastics.  A drive I love in itself as we discuss the day, the clouds, or any other topic that pops in our heads.  Our 10 minutes in the minivan have become quite special for Kennedy and I, since we rarely spend time together just the two of us.  But once Kennedy runs onto the mat for warm ups I am out.  Out to the minivan that is! I always start my hour of solitude with a quick trip to Tim Hortons.  From there I may do a quick errand but most days I just go back to the gymnastics club, turn off the car, the radio, put away my cell phone and soak up the silence of the moment.  One week I ran to Subway to get dinner for the family and I ate mine right there in the minivan – knowing that if I waited to eat it when I got home I would eat it holding a child, or not eat it for hours – until everyone else had gotten their fill, their milk, their much needed napkins…man that sub was one of the best I have ever had.  I didn’t even care that other parents walking into the building might look at me and wonder what I was doing.  I just ate in peace.  Two weeks ago – on a particularly warm Monday I took a nap.  I love how the sun warms up a car and the breeze from open windows flows through providing a nice balance to the temperature.  It was so easy to fall asleep, and exactly what I needed.  It was exactly what two other moms and a dad needed too apparently because when my alarm went off and I pulled my seat up I saw them waking from their naps too! One mom actually had her head resting on the open window frame.  I let out a laugh – what a great picture that would have made.  A parking lot littered with minivans – filled with sleeping parents on a Monday evening.  This past Monday I took thank you cards, stationary and my journal.  I wrote hand written notes and enjoyed the quiet to gather my thoughts.  Tim, knowing I had a long stressful day full of appointments offered to come with me to gymnastics to help me get some errands done to lessen my to do list.  I turned down the offer.  I didn’t care about the errands, or the to do list.  When he called to present the idea on his way home from work I already had my bag packed for my writing – Tim Horton’s gift card and all!

And for all those quiet moments in my minivan there are one hundred loud ones in my house that I adore!  If I didn’t have the moments of crying and dirty diapers I wouldn’t have the moments of laughter and little hands covered in finger paints!  There was a time, a post from months ago, when I celebrated poop – and I still do ( I know its weird!) – I see the diapers as a sign of healthy babies!  I love that my house is a constant state of action with a little bit of chaos mixed in.  But those moments in my “mom-mobile”,  my Mondays of solitude sitting in my practical minivan keep me sane, giving me the space I need to recognize the joy that I find inside my crazy house.  So to all those moms out there fighting the minivan and the stereotype that goes along with driving such an uncool looking vehicle – let go of your inhibitions.  Relish your role as the woman who keeps it all together and embrace what could be yours.  Buy the minivan, celebrate the seats far in the back, the storage space, and the automatic doors!  Trust me – you will come to covet that van as if it were your own little sanctuary of sanity!

My view in my minivan!

Blame it on my glasses!

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Blame it on the rose-colored glasses I worked so hard to find over the past five months but life at home with two babies is not all that bad, in fact I love it!  The first time I held both of the boys at the same time in the NICU I remember breaking out in a sweat.  It was in that moment that the reality set in that we would have two babies at home some day.  And frankly, the thought of that made me a tad bit nervous.  One day as I rocked them, one of the doctors came in to chat and asked if I was okay, she said I seemed quieter than normal, more stressed.  I explained that since the boys were close to coming home my mind was overwhelmed with the planning and stress of what was to come.  I’m not too far removed from baby life, Addie is only two and a half, I remember the crying, sleepless nights, constant worry…I remembered what is in store for us – times two!  I couldn’t help but be overwhelmed with all that was to come with having Griffin and Carter home. 

And it turns out, I worried for nothing!  Sure, we change about 20 diapers a day, make 20 bottles, I sit down to breastfeed what seems like every hour, untwist Carter’s oxygen tubing more times than we can count, wash binkies, blankets, bibs and baby clothes non stop but we have yet to be overwhelmed.  Tim and I have created a routine for ourselves and the boys, the girls and the dogs all seem to be settling into it nicely.  Griffin cries a lot due to the pain caused by his severe reflux, Carter is more laid back but is constantly moving, thus constantly kicking his blankets off or losing his binkie.  This has become the background music of our home, these sounds and the loud rumble of the oxygen concentrator and beeping monitors!   

My brother and his wife had a baby last week.  I was overjoyed to hear of his birth, and more than excited to hear every detail I could soak up about him.  My love for my new nephew and pride for my brother was instantaneous.  And it wasn’t until I felt that instant joy at hearing the news of Corbin’s arrival did I realize how much I longed for that feeling.  I have four wonderful kids, I wouldn’t trade them or their journey’s into our family for anything but I was jipped from feeling the instant joy when three of my four children were born.  Having a preemie baby changes that phone call.  When Kennedy was born we called everyone to announce her arrival with happy tears in our eyes and a huge amount of pride.  When Addie, Griffin and Carter were born we made the same phone calls but with concern in our voice and a worried voice on the other end of the line.   Just a realization I had, but not a complaint.  IT is my firm belief that everything happens the way that it should.  And in no way does my experience with my preemie kids take away from my joy for those with full term healthy babies.  I hope nobody confuses my reflections for whining, or a cry for advice.  It is simply a reflection.

There hasn’t been a week since Carter came home four weeks ago where we didn’t have at least one specialist appointment to attend for one, or both, of the boys.  The medical binder I carry wherever I go with all of their information is growing bigger by the day.  Knowing all of their past issues, present concerns, medications and needs gets a bit exhausting.  Tomorrow we go back to the hospital to have blood drawn, Wednesday to the lung center to see if Carter can handle being on O2 only at night, Friday the eye center where they are closely watching Carter’s slow healing eyes.  Next week the pediatrician, eye center again and cardiologist, I believe, and the week after that the hearing clinic.  It is tiring, and makes me long for the days when the boys’ lives aren’t filled with doctors appointments. 

But then I spend the afternoon snuggling with both of them on my chest and Addie curled up next to me and I forget the appointments and special needs and simply enjoy being a mom.   Because the reality is that I would go to a different doctor everyday if it meant that I could be Griffin and Carter’s mom.  They are wonderful.  Carter is laid back – he is a content baby, happy to just to be in the mix of the family action.  Like so many months ago when Carter needed extra sedation to stay still he continues to be a mover.  Constantly picking his head up, kicking and waving his arms.  I love to watch him move, the way he examines his hands and eagerly sucks his fingers.  Griffin is a snuggler, he loves to be held and shimmies himself into you for his long naps.  He has the best looks and when he is wide away looks at me in a way that puts a huge grin on my face.  His face is just perfect!  The girls are so in love with both of them.  Addie is always asking to hold “her baby”, and she is amazing at throwing away diapers!  Kennedy of course is over the moon about being a big sister.  She is ever vigilant about Carter’s nasal cannula placement and hand sanitizer.  One of my favorite things to do is watch her snuggle with her brothers.  She is so gentle and loving. 

So I will continue to wear my rose-colored glasses because, while sometimes it is hard, right now…I love my life!

There is a reason for everything!

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Tomorrow will be one month for the boys!  It is strange, but it feels like it hasn’t been that long.  I say its strange because when Addison’s stay was only one month-long and I remember thinking it felt like a lifetime.  I am sure there are a few reasons for this, the most obvious being that I know that my boys clearly aren’t close to ready to coming home.  I just hope they are home around my due date – January 20th!  We know we are in this round of the NICU for the long haul. 

My sense of urgency isn’t the only difference with our NICU stay this time around.  When Addison was born at 32 weeks and required a 30 day NICU stay I was terrified.  Nearly paralyzed with fear.  Every hiccup, change in stats, behavior, etc. was cause for alarm.  Not to mention I was completely overwhelmed by the entire experience – I didn’t talk to many people, waited for the doctors to approach me, took direction and updates at face value as I quietly meandered through the process.  I didn’t feel bold or confident in the whole atmosphere – it was too scary.  Not this time!  The NICU isn’t nearly as scary as I thought it was two years ago.  Which is funny, because the boys have a much scarier ride than Addison did.  I know all of the boys’ day doctors and nurses by name, I see them in the main lobby and we talk.  If I have a question, I walk out to their desk and ask it.  While we love most of the nurses, some of them rub us the wrong way and when we feel the need, we voice our opinion. 

Most impressively, I am not afraid.  Don’t let me mislead you, there are things that I am very afraid of.  Illnesses, issues, complications… However, I have a handle on the day-to-day.  I know each one matters and to celebrate just that.  With Addison I think one of the reasons I was so afraid is that everyday I was desperately trying to get to the “normal” part of having a newborn.  So each day that kept me from that was filled with fear that those normal days would never come.  With the boys, I feel abundantly patient and feel no need to rush their delevelopment and milestones, I am content to be happy with each and every small success.  Take today for example, I celebrated being able to put lotion on Carter.  Giving him a little massage made my day.  I celebrated knowing what to do as I watched Griffin’s heart rate drop, and I celebrated being able to help him pull out of it.  On Saturday, I celebrated holding Griffin in my two hands inches above his bed so his nurse could change his bedding.  There are just so many things to celebrate.  Even on days like today, when Griffin is having a hard time keeping his heart rate up, his food in his belly and had to go back on the ventilator to support his immature lungs.  Because I know tomorrow things will be different.  So I take things day by day, it is what it is and it is clearly NOT in my control but in God’s hands (thankfully – for I know I am not equipped!)

Looking back at the blog I kept for Addison, there are very few entries during her time in the NICU.  That is because I was so overwhelmed by what was happening I couldn’t even find the words.  I never did my own research online of any of her conditions, afraid of what I might find.  This time around I have taken ownership of our situation.  I participate in a web community of parents of preemies.  I read discussions, post my questions and encourage other parents going through similar things.  It gives me strength and hope for our boys.  And of course, I blog about nearly everything.  This blog has been one of my biggest sources of therapy. 

In 2009 when we went through our first bout with the NICU we had faith that things happen for a reason.  But now, in 2011 that reason is glaringly obvious.  Without the relatively easy and short stay with one little girl in the NICU two years ago, I know we wouldn’t be half as prepared, secure, comfortable, knowledgeable..for our long and precarious stay with our two tiny boys now.

Angry/Scared/Joyful/Sad/Happy…

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Lately, when asked how I’m doing I am never quite sure which emotion to pick.  At any given moment I feel about 10 different emotions .  I know I have posted about this before, and I am sure it is becoming redundant – but man this is a lot to handle and it is testing every bit of strength that our family has.   And then perspective rolls in and I am once again in awe of what some families endure with such grace that it makes our struggle seem small. 

For this post I decided not to pick an emotion.  And since I am not standing face to face with someone waiting for a response but instead sitting comfortably on my couch with all the time in the world my answer to the question everyone asks is this…

So how am I feeling?

I am ANGRY because both of my boys have some pretty serious infections that they contracted from simply being in the hospital.  They have gone through a series of antibiotics and yet still, they test positive for staph epidermidis, pseudomonas and stenotrophomonas.  So now they each will have a spinal tap to rule out meningitis. 

That of course brings me to SCARED.  

I am JOYFUL because Griffin has pooped on his own many times since yesterday (he used to only poop when they gave him medicine).  I am also joyful today because Griffin is no longer on a ventilator so I got to change his diaper!!  This is the most interaction I have had with either boy since they were born.  I nearly teared up as I prepared to change him then laughed to myself as I realized that in a few months I will look back on this moment and think I was crazy for being so excited, as I change my 40th diaper for the day! 

I am SAD sometimes as I pack up the maternity clothes I will never wear, the nesting that I will never feel, the pregnancy that I never got to see till the “normal” end.  I have talked with other moms of preemies and it is such a funny thing how you mourn the shortened pregnancy.  I’ve caught myself a few times thinking about events I thought I would be attending as a quite round pregnant woman, and it makes me sad.  Which is ironic because when I was pregnant and thought of that same event and me being whale-like I dreaded it! 

I am HAPPY each time I walk into the boys’ room and see their little faces!  And I am just as HAPPY when I come home from the hospital to my busy house and my even busier two girls at home.  I am not sure I have hugged or kissed Kennedy and Addison as much in their lives as I have in the last three weeks.  They bring me happiness everyday!

I am OVERWHELMED sometimes as I drive home from the hospital alone.  Thinking about the daily report from the doctors, the changes the boys have made, and then all of the things I should be getting done at home.  Finding motivation for “real life” needs like dishes and dusting is quite difficult when you have kids in the hospital.  If I catch myself thinking in the long-term I have to stop myself immediately, the long-term is overwhelming – the short-term I can totally do.

I am RELIEVED each night as I lay down to fall asleep and think about my little fighters making it through another day.  I find myself taking a long slow breath and thanking God for giving us this day with our boys.  Knowing that each and every day is truly a gift that will hopefully bring us to a lifetime of days.

I am TIRED.  I think I could sleep for days and still be tired.  

I am HOPEFUL, in fact I am filled with hope.  I have so much hope that it overflows at times.  I have hope that in a year from now this time will only be a memory.  I have hope that my boys will have a full and happy life and will only be stronger for the way they started off in the world.  I have hope that our family will come out on top after all of this, that our finances, our needs, or emotional state will remain intact as we go through this difficult time.

And perhaps most of all I am GRATEFUL.  I can’t say enough how grateful I am for the friends and family that surround us.  We have been inundated with offers to help, food, support, prayers, kind words and love.  Each sentiment we receive strengthens us and reminds us once again how blessed we are to have all of you in our lives.  And we are so absolutely grateful for the nurses and doctors at Children’s Hospital.  It makes all the difference to be confident that everyone dealing with our boys are chasing the same goal.  What they do on a daily basis with our kids is amazing and we are so grateful for their talents and expertise. 

Ahhh…that feels better.  I am so glad I took the time to get that out!

What day is it?

Standard

Today in a casual conversation with the bank teller I told him it was Friday.  He looked at me for a moment and said, “Is it?  I think its Thursday.”  It took me a moment to agree with him.  He continued to work as I stood there, kind of in a daze.  It seemed so strange to me to be standing at the bank, not sure what day it was.  I remember this feeling from when Addison was in the NICU.  I remember walking through Walmart with my MP3 player on looking around me thinking how foriegn the world around me seemed.  Life with a child in the NICU, or hospital at all I assume, is like living in an alternate universe.  The world that was so normal before suddenly is strange, and the world of the hospital, you knew nothing about before your child needed medical care seems perfectly natural. 

Luckily, the other part of the equation I remember from Addison is how quickly you transition back into the world of bank tellers and checkout lines when your child comes home.  You adjust quickly because now you have a newborn at home who needs to also assimilate into the “normal” world.  The NICU experience has changed you forever but the details fade in a way. 

Other than not knowing the day of the week we are slowly adjusting to life with children in the hospital.  My aunt has been staying with us (since I can’t drive yet and still need lots of rest to recover from the surgery) and we have developed a nice routine of time at home, running errands and visiting the boys.  Our nanny still comes to take care of Addie while I am with the boys and Tim stops at the hospital on the way home from school.  The evenings we try to keep normal for the girls.  It isn’t so hard, juggling our time, and we all seem to adjusting – for the most part. 

The boys continue hold their own.  Carter still has more respiratory issues than Griffin but we are told their issues are nothing outside of the norm for babies their size.  We were approached about enrolling them in a study to give them more  of a lung stimulating drug (surfractant) than a normal preemie would get and we can only hope that   A. both boys are getting the drug and not the placebo and B. that it works in opening their airways and getting them off the ventilators sooner.  Griffin has steadily increased on his feeds and is up to a whopping 3ccs as of this afternoon.  Carter is getting 2ccs of my milk and I am feeling fulfilled that I am able to help their development in some way. 

As always, only time will tell how they do and each day provides new conditions to understand.  We truly believe that our boys are strong and are tiny little fighters.  We also believe that your prayers and support is a great asset to them and our entire famiy as we navigate our way through the next few months.  So keep them coming!