Ben’s Story

The following is an excerpt from my journal.  4 years ago.  I’m in a much better place today obviously, but for those who asked… here is what i’m willing to share – at least for today. 🙂


So this has been one of the toughest pregnancies I ever thought i’d deal with.  I’m depressed – more than depressed if I’m honest.  I never thought i’d want to be validated just for being pregnant.  There are pregnant ladies all over my work – and the other women in the building are always cooing over how big they’ve grown or how they glow – no one says a damn word to me.  They don’t even know what’s going on with me.  I talk to the belly all the time – and play games poking back when i get kicked – but no one in the family (hubby included) does anything like that.  I can’t do a baby shower until after I know whether my little ben will make it or not, i can’t do a nursery for the same reason.  I understand those reasonings, but I’m pregnant – when can i find a little time to have some JOY in that other than what I’m doing for myself?  I understand the hubby – he’s afraid to get more attached – afraid that it will only make it harder.  But it’s NOT fair!  What if Ben makes it – and is fine – or has to fight but ends up making it?  What then?  Yea I know – party down big time as a celebration for the little guy – but doesn’t he deserve some celebration anyway?  There is life in the tummy and no one seems to care.  I just don’t know how anyone does it.  How do you get through this without falling apart before hand?  So much mystery surrounds the outcome of these types of pregnancies – how do you make it without becoming a completely depressed basket case?

10/21 – He’s HERE!!!!



Well so far I’ve been “kicked out” of the NICU a couple of times – the nurses all joke that they see me in there far too much and that I need more rest.   My hospital has parent suites for NICU parents – like a hotel room – you can stay overnight 2 nights a week free of charge.  I’m here tonight as his surgery is in the morning and I wanted as much mommy and ben time as I could get.  Been here all day, will be here all day tomorrow too.  I’m absolutely exhausted mind you – but I figure I can rest after his surgery.

I’m absolutely terrified of this surgery for him tomorrow – I guess the neurosurgeon who’s doing it is one of the best here in Seattle – so that’s at least comforting.



update on Ben:

ben made it through his surgery and is just amazing the doctors left and right.  they have the shunt on the lowest setting for now, that evening they took him off the ventilator (they put him on it for the surgery) and proved the docs wrong by sucking on his pacifier for a full hour.  The next morning they put him in a normal crib as he’s holding his temp.  he’s been trying the bottle since then, getting a little but on a feeding tube still to ensure he’s getting enough.

He’s more alert and isn’t having any issues other than the feeding tube.  The docs are saying he may even get to come home by the first or second week of nov.  i’m so amazed.  They’re calling him the miracle baby lol.

Me however, they re-admitted me.  I pushed it too hard i guess, my incision came open.  Been here since tuesday for the re-admit and won’t go home till sunday or so by the sounds of it.  I pushed it too hard.  Tried to be too strong for his sake.  God I hate hospitals lol.



My baby – after fighting through 2 surgeries, spending 24 days in the NICU and getting to come home for 9 glorious days – was taken back to the PICU and spent another 8 days fighting for his life.  Yesterday, he joined the angels.  I’m so incredibly sad.  On one hand I got to spend 5 weeks with him, I got to look at his beautiful face and tell him exactly how much I loved him.  I even got to dance with him in my living room to my favorite song, so I’m grateful I got that, but on the other hand I’m absolutely beyond devastated.  I woke up this morning and looked in his crib.  I can’t believe he’s gone.  I’ve been carrying his blankie around with me like Linus on Charlie Brown.  I’m so grateful I still have 5 weeks left of maternity leave.  Not quite sure how you breathe after something like this.  It just feels so final.  He took his final breaths in my arms and went so peacefully – but I just want to scream and yell “WHY?!?!”  I just want my baby back, in my arms at home where he belongs!!! I can’t quite wrap my head around the fact that he’s never coming back.  This is my first experience with death and it’s not fair that the first time I get to experience something like this is with my own child.  Children aren’t supposed to go first!



So it’s been a couple of months since I’ve written anything here.  And today – I feel like there’s an extra pile of straw on this camel’s back and I’m going to break.  I miss my son.  I think I thought grief would be like anything.  When you get sick or you get injured, you slowly get better.  Every day you get better and better.  Grief doesn’t seem to be like that.  It seems it’s a bit more like a roller coaster.  You have good days and bad, good weeks and bad.  Everyone around me is pregnant.  And while I’m incredibly happy for them.  I’m also incredibly angry and hurt by it.  My best friend has a teenager who’s pregnant and due any day.  She’s spent the last 9 months going back and forth about whether or not she wanted to drop this baby off at the local fire station, or adopt it out or keep it.  I sucked it up and threw her a baby shower.  It set me back $600 and a hell of a lot of heart ache.  No one threw me a baby shower with ben – so I think part of it was me making up for that.  But the baby is due any day and all I can think of is “why?!”  Why does she get to have a healthy baby?  Why does she get to keep him?  Ever since Ben died, everything in my life is changing.  My husband decided he wanted to go back to school.  He wants to become a respiratory therapist and help save lives.  And while I’m incredibly proud of him for what he’s doing – our marriage is falling apart.  He’s an alcoholic.  He’s getting help – sorta.  But he won’t stop lying to me.  After Ben died – he had a bit of a mental breakdown.  Said a lot of hurtful things.  Blamed me and my genes for Ben.  Said that he regretted having our son.  Said that I should have caught the doctor’s mistakes, that my not catching them equates me to be a murderer.  That I’m so damn smart about all things – and yet I fucked this up.  Things he can’t take back.  And while I’m working on learning to forgive – I don’t think I’ve ever felt so alone.  A month ago, I had to go to the hospital.  My pituitary gland has shut down and all the systems it controls aren’t working right.  So I’m fighting, and I get an hour, sometimes 2 of sleep every night.  They’re doing tests and unfortunately those tests take time to get the results back.  The doc told me not only am I going through all of that, but he feels I’m experiencing acute grief.  He warned me that I need to avoid stress at all costs right now, because stress will make my symptoms even worse.  I know part of it is because I haven’t really had the chance TO grieve.  I’m the only one with a job in our family.  It’s a good job – but highly stressful.  Combine that with a husband who can’t seem to be good and honest for more than 2 weeks at a time and I’d say my own personal stress level is sky high.  He’s drinking behind my back again.  Lying to me about it, hiding it.  Driving under the influence.  I need to somehow get out of this.  I know it to be true.  There are times when all I want to do is crawl into my closet and hide from all the world.  My “so called” friends have all decided to be mad at me just because I’m not being very social.  But when i get home, I just want to take a nap.  This whole not sleeping thing is really quite tough to battle and I’m doing my best.  I had one “friend” tell me I was self-absorbed all because I didn’t email her the same day she emailed me.  I’m not self absorbed, I’m lost.  I’m devastated.  I don’t know how what to do to move forward.  I’ve never felt so lost.  So alone.  On a positive note, I’m doing better at work than I ever have, and I never knew I was this strong before – but that doesn’t make it any easier.  I wish my body would function normally.  The doc said part of it is because of what I went through in the pregnancy.  I don’t know what i want as far as responses… I guess I just like knowing that I’m sending this out into the void.  It’s only been 4 months since I lost Ben and I know it’s gotta be perfectly normal to experience a lot of what I’m going through – but damn.  I miss him.  I miss him so much it hurts.  I still sleep with his blanket every night.  It no longer smells like him.



What’s interesting to me – is how far I’ve come.  I’ve gotten a lot healthier.  I’ve finally realized my own worth.  Or am at least on the path to realizing it fully.  I live each day for the moment.  Funny, the pain fades a lot over time.  4 years.  I don’t hurt like I did.  Sometimes, but not very often.  I still don’t feel that i’ve grieved.  I have done all I could to put on my war paint and masks and go to work and be the responsible adult.  Support the household.  At least I’m not dealing with cruelness or addiction anymore.  I don’t have to worry about someone putting a hole in my wall from their anger.  There’s peace and happiness, forward motion in my life again.

6 thoughts on “Ben’s Story

  1. You aren’t the only one. 🙂 Life is good, or at least, it’s getting there. They say the path to self discovery is painful, they certainly weren’t kidding. And if I ever find out who “they” is… I’ll give them a piece of my mind. hehe.

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