My Voice

Over the years I have learned I am not a verbal processor.  I don't share my feelings often or easily.   It feels scary, and I don't like scary.   It feels disorganized, and I find comfort in organization.  It feels vulnerable and I have more scars than I wanted.   So over the past few years I have found my voice in writing.   In writing I process.  In writing I feel.  In writing I organize.  It brings me comfort, understanding, and peace.  So here, on National Prematurity Day, just over one year later, I write:

I write about the guilt. It is still heavy, and I still feel like I failed you.
I write about the grieving.  I get stronger, but it doesn't go away.  
I write about what I was so thankful for.  Not everyone has friends, at least friends like we had.  
I write about what I remember and what I wish I could forget.
I write to say I'm sorry.  I don't know what I could have changed, but like any mother, if I knew what I could have done differently I would have.
I write because it still hurts.  It hurt to see you struggle to breath, to choke over and over again learning how to eat before you were ready, to see you turn blue because you forgot to breath.
I write because I feel responsible.  For every specialist, test, or even weight check that brought tears and fear ... I feel responsible.
I write because I'm jealous ... jealous of people with normal birth experiences.
I write to remember the precious moments I had with just you.  The moments I closed my eyes, felt you skin to skin, and imagined you were safe inside my body.
I write so others will give me grace when I'm a little crazy and over protective: Welcome to our home, go wash your hands.
I write so other moms know they aren't alone.  The NICU is the busiest, most lonely and isolated place I have been.
I write so others will be aware.  Aware of the roller coaster that is the NICU.

But most of all, I write that I would do it all again.   I would do it all again to fight for every extra day, or even hour inside of me.   I write to say I love you.

(a video a friend so kindly made us with some of our pictures the first few months - thank you Rachel ... I watch it over and over again!)

Dear Little Four ...

Your name means 'my heart', but I had no idea how fitting that name would be when we picked it for you just 2 months before you were born.   It amazes me that just one year ago I was just reaching my 25 week of pregnancy and feeling an unusual sense of relief; now the doctors had a shot at saving your life if (but in my heart I knew it was really when) you came early.

These past few weeks (that are leading up to your first birthday) have been filled with more nostalgia and bitter sweet emotion than I am used to.     Some days I am overwhelmed with memories of the anxiety, contraction after contraction, pain filled last 14 few weeks of your pregnancy.   I think that deep down I knew, since that first check up where they couldn't find your heartbeat, that something ... something was different.   I should have prepared myself to let go of my expectations of a 'normal' delivery; but with my last baby, I so desperately wanted one drama free, trauma free, normal baby experience.    I wanted a fear free labor and delivery, and to go home with my plump sweet little boy in my arms.

I did not want to discuss your potential life threatening complications and chances of survival with all the specialists in between my contractions while waiting for your daddy to get to Boston.    I did not want to weigh the pros and cons of letting labor continue while the chances of life threatening infections for myself increased with every contraction that passed.   I did not want to remind the doctors I had three more children at home that I needed to live for, because as those words came out of my mouth I was sick with guilt.   My body was failing us both.    I needed you inside of me, and you needed to be there.  But even with the best, and most miserable drugs available, my body would not cooperate.    I wanted to give you what I gave your siblings: the best possible start to life.

I wanted to hold you after you were born.   I wanted to smell your newborn scent and hear your newborn sounds, but you can't do that in the NICU plastic box.   I wanted to figure out who you looked like; were you more me or your daddy?   I wanted to show you off to our friends and family, but you can't do that hooked up to all your leads, tubes, breathing devices and IVs.   I wanted to bring you home with me when I left the hospital.  I wanted to wake up every couple of hours to a hungry crying baby in the middle of the night.   I wanted to get nothing done during the days because newborns take a lot of time, but you wouldn't have lived if I took you out of your plastic womb.

Instead, I was wheeled up to the NICU floor hours after you were pulled out of me.   I waited days to hold you.   It was days before I could even really tell what your face looked like with all the tubes.  I had a crash course in brain bleeds, oxygen levels, CPAP, feeding tubes, residuals, bradycardia, and the metric system by your team of doctors.    I sat and cried with the nurses and your daddy.    As a woman and mother, I felt like a failure.   You weren't supposed to start like this.   My heart hurt for you, and I was fragile.   One small move and I thought everything would fall down around me.

It has been almost a year now.   We have had more hospital stays, doctor visits, tests, quarantines, and specialists than I was prepared for.   Even though I feel a huge sense of relief at almost making it through your first year of life, I still don't feel like I can exhale.   I still feel traumatized, scared and guilty.    I still vividly remember the sounds, smell and feel of the NICU.   The awful beeping and alarms.   The long walk down the hallway to the elevator.   And the 'T' in the hallway as you walked off the elevator.   Your daddy and I went right, towards the locked down, monitored, parent eating and waiting lounge of the NICU; while other parents and friends got to turn left ... to the normal maternity wing.

I may still be grieving the circumstances of your birth, but you are my hero, little four.   My strong, little rockstar, and I pray we get to celebrate many many more birthdays with you.

Thirteen Years.

Some things are not easy to write.   Not because I can't figure out eloquent language, or appropriate expressions, but because there aren't any.   There are no words when tragic events happen.  There are no words to describe devastating loss.   There are no words for heartbreak.

It was deja vu this morning.  As I walked into church I was hit with the same wall of emotions I experienced thirteen years ago, but this time, I was thirteen years ahead in my journey of grief these people were just beginning.   Our community tragically lost a young man this week.   His family was not there, but many of his friends were, and I recognized all too well what was going on inside.   The emptiness from crying for so long and so hard.   The pain from losing someone so tragically.   The confusion, the doubt, and the determination not to doubt.

I wanted so badly to have some wisdom to share, something helpful to relieve some of their pain ... something ... something to help share the burden.  But that is the problem with grief.   It does not divide, it is dense, and it lingers ... year after year.   Even though it is shared among so many, it is as though you alone are bearing the weight of it.  Even though it is invisible, it is impossible to see through to the other side.   Even though it comes all at once, in a moment, it never leaves the same way.   

There is an admirable inner struggle that goes on.   The struggle to continue in one's faith and trust in God's comfort, but at the same time, be so confused that God allowed something so devastating to happen.    I looked into people's eyes this morning hoping I had something to offer, but after thirteen years I am still stuck in the midst of it.   After thirteen years, I am still asking the same question of why.  After thirteen years, I am still hurting and missing my friends.  After thirteen years, I am still grasping on to God's comfort and goodness while desperately trying to make sense of it all. 

I miss you friend.

Invisible Disabilities

Sometimes I do not know how to begin: how to begin a new post, or conversation with a new person, or just begin.   I have come across times in my life where I am completely stopped, but life moves on, and I am faced with the task of trying to begin again.  Picking up the pieces inside me, or around me, and beginning anew.  For months now I have struggled, do I share what has stopped me?  Do I let people see the ugly, the imperfect, and the weaknesses I struggle with?  Do I leave myself open and vulnerable?

At the end of the day I have always answered no.   No, people might think I want attention.  No, people might think this is a badge I wear proudly.  No, people won't understand.   No, I don't want people to think less of me or see me differently.  No, I don't want anything to change.   But in saying no, this weight I am carrying has become heavier and heavier.   I am very good at hiding things, very good at side stepping, and very good at appearing like I have it all together.   But now, against my own good reasoning, I think I need to share how I don't.

PTSD.  It is my invisible disability.   

I guess I should begin by explaining it some.  Posttraumatic Stress Disorder is a severe form of an anxiety disorder that develops after a life threatening physical or emotional trauma; and for me, that was giving birth to Little One, and then triggered again by similar complications after Little Three's birth.

As you have probably noticed I have not mentioned or talked much about his birth.   Even now, I am not ready to share the details of that experience, except to say that I came very very close to dying just a week after my little one was born.  Avoidance, that is one of the symptoms.   I have many blog entries I have started, but have never been able to finished because it is too difficult.   Because I avoid anything that triggers the panic attacks, blackouts, flashbacks, and nightmares.   It might be almost 6 years ago, but they have not gone away, only lessoned.   The symptoms have succeeded in building up walls between myself and those around me, not because I don't desire closeness and relationships, but because I live with a daily fear and expectation that someone I love dearly (my husband or one of my little ones) will be taken from me.   It is the constant state of flight or fight that I am working against.   The constant state of panic I am trying to relax out of.   The constant fear of vulnerability that I am working to overcome.  It is like sitting on the beach watching the ocean.  Sometimes the waves are small and far off in the distance, but then the tide comes in and over takes you.   There are moments I forget what is going on in my brain, and I think it has passed.  But sometimes, sometimes my reality is altered and I am stuck in a small hospital room 6 years ago and the waves of anxiety and panic are all coming in and crashing around me.

This past year I have felt completely stopped, but I have watched as life continued on around me, and as I have found myself countless times before, I am trying to figure out a way to begin ... again.

1 to 3

It's funny.  When Husband and I look back at parenting one little one verses three we giggle.   Man were we type A! (I should add a disclaimer here ... When Little One was born I was a full time grad student and Husband was a full time grad student AND had a full time job! Schedules = survival.) So to our families, thanks for cutting us a little slack for those few years.

Everything seemed like such a big deal.    The time poured into finding the perfect stroller or carseat because it makes SO much difference if the stroller reclines with a zipper verses a strap.   Do we get the orthodontist approved pacifiers?  Do we dare give our little one a nuk before 8 weeks old ... gasp!(we did ... and he survived:)  Our little one's entire success in life depended on those big decisions and their schedule ... or so it felt like.



Well, I wouldn't go so far as to say we are seasoned parents, after all, Little One is only 5, but we've learned a few things over the years.   We've changed somethings, we've relaxed, we've taken a deep breath, all while the crazy factor has increased exponentially.   Newborn bath time, that once sweet and peaceful time cooing over Little One, has now been reduced to a quick squirt of dish soap on the head, rinse, and dried with a paper towel (don't judge!) for Little Three.    Nuks that fall on the floor are no longer cleaned and given back to said little one ... they are just given back.   They are not always put together in cute nice clothes (although I like to make people think so).  You will probably find food stuck to their bottoms right after a meal because that is where they hide it.  The importance of the question 'so how long has the bottle been out?' is directly proportional to how long (and loudly) Little Three has been crying.  Things change; our priorities, our abilities, our desires.





Some where between three little ones, two masters degrees, four moves, and two job changes in the last five years we've found schedules aren't the end all, invaluable to the sanity of day to day life, yes, but not the end all ... in fact, sometimes the best memories have come when we ignore them.   When we put our kids to bed somewhere else so we could hang out with friends, skipped the afternoon nap, or went outside instead of going to bed in the summer.   Messes, mistakes, and chaos are going to be made.   But in the middle of all the poop, spit up, and dirt (and there is quite a lot of all those) ... the little ones are thriving.   Not because we had the latest and greatest car seat, stroller, or bottle, but because we've let go and let life happen to them.   Yes, sometimes they get sick, they don't always have the best, most efficient (insert baby thing/gear here), and yes, they have been disappointed ... but when we've chilled, so to speak, our little ones have thrived.   They have learned to adapt.  They have adjusted.   They have grown.  And perhaps, so have we ... although we are still pretty type A most of the time and I'm ok with that.