Prelude.
Imagine you are driving peacefully along, and the car in front of you loses control, skids wildly, hits the rail and flips over. Without thinking, you jerk your steering wheel to avoid the crash, and then swiftly, automatically, pull your car to the side of the road, dial for help and hear yourself talking in a calm voice that is not your own. Only after you have hung up do your hands start shaking and your chest heaving and your eyes tearing and your mind spinning oh my god oh my god OH MY GOD OH MY GOD.
After Ames’ death and Simone’s early birth, I lived for a long time in Crisis Mode! As odd as it may seem, considering my long-standing anxiety issues, Crisis Mode! agrees with me. I was scared, certainly, but there were things that needed to be done, and panicking wasn’t going to solve anything. Panicking never solves anything, but the only time I seem able to remember this is when I am in Crisis Mode!
Now, with Simone off oxygen, her monitor, and most of her medications, our days have settled into near-idyllic normalcy, and I am finding myself surprised by occasional blebs of unpleasantness. The other day in my car, I put on a CD I listened to quite a bit while Simone was in the NICU—mind you, this was during the happiest part, when she was in a crib and her homecoming was clearly on the horizon—and first I felt a churning in my stomach, and then I remembered listening to said CD in the hospital parking garage, and finally, to my utter shock, I began to cry.
Sometimes you can only deal with the emotional aspects of a crisis once it is safely over. I had seldom felt anything but matter-of-fact about Simone’s need for oxygen until the pulmonologist’s nurse told me to discontinue it, at which time I surprised myself with sobs—of relief and gratitude, of belated fear and sadness.
Stumbling around in the dark, it was easy to focus only on what was in front of me, but now that it’s lighter I see the cluttered corners, the closets stuffed to bursting, the discreet piles of dirt under the rug. This is all a very long-winded way of saying that there are things I need to get out, unpleasant, unamusing things, and I’m going to be doing this over the next week, so you might want to forgo reading Flotsam in favor of that Google image search for “baby goat” I’m always recommending. I feel in need of AN ENEMA OF THE SOUL—not the most poetic metaphor, certainly, but a serviceable one nonetheless, as it handily conveys the messiness involved.
I see no point in doing this unless I am scrupulously honest—who ever heard of HALF an enema?—and I should warn you that it will not be pretty. Perhaps especially for those who have lost babies, these entries may be difficult to read. But while my situation was unusual, it was almost certainly not unique, and if someone similarly afflicted is Googling “delayed grief,” “twin died not sad enough,” or “infection stillbirth,” I hope they will find me here and feel my virtual arm around them.
Part One tomorrow.
65 Comments
Thanking you for sharing your grief. I’m sure so many of us have incompletely-grieved losses…I have no doubt that your sharing of yours will help all of us.
Looking forward to reading your stories. I find strength in your writing. Oh, and the baby goat search? TOO CUTE.
Courage. You haz it.
Oh darling. Grieve all over us. Honestly, you’ve been so courageous and strong through this whole thing that it’s very easy to forget, even as a reader, everything you’ve been through.
I know how you feel about Crisis Mode! and the inevitable breakdown afterwards. I feel like everything I do lately is in Crisis Mode.
I think the whole purge will be a good thing, and it just might be good for some of us too. Personally, I am looking forward to reading it.
Oh, and I googled “baby goat.” Unfortunately for me, the third picture in was a pic of baby goat LEG MEAT. Ew.
I just realized today (today! your post is timely) when writing to a friend, that the shock of giving birth prematurely in January is just now getting to me. We were very lucky, and while I feel the obligation to say something like “not that I am comparing my pain to yours! oh god, i could never! i am shameful for even bringing this up!” I am also commenting to say, I hear you. And am there. And have such tremendous respect for your ability to write so eloquently about it.
i, for one, am thinking that you are courageous and humble and kind of awesome for being willing to share the unpleasant bits with your readers. it is a risk to expose yourself in that way and to count on your readers to understand, or at least approach it with a desire to understand, and you are valiant for taking it. i hope we don’t let you down.
You went through a lot. A friend lived through an emergency birth with hemorrhaging and 8 weeks of NICU. She was so traumatized she had to see a trauma specialist when she got pregnant again. Who knew such doctors existed? You might need to see one too. While my own kid was in the NICU for only 4 days, we were not told anything. My son was just taken away from me and stuck with all sorts of needles and IV and I was left bleeding and in pain in a room with another patient. My husband was told to leave. For 6 months after the birth, I could not talk about the NICU or sing the songs we had sung there to our baby without bawling. Again, I recommend you get help (I did not and I should have). Take good care of yourself.
I cry more now, 12 months after NICU, than I ever did during Crisis Mode. I think the mind can take steps to protect and anaesthetise itself during times of high-stress. Now: I just dissolve in the middle of whatever I’m doing, because the image of my precious boy struggling to survive has suddenly walloped me upside the head. His NICU photos are blown up and pinned to the wall, because if I don’t see them for a while and then glimpse one, I crumple. I prod myself daily with the images, to harden and inure myself to them. I have the fabulous happy ending now, and I need my counsellor more than ever. I could, fairly, be termed an Anxious Mother.
And I had a baby who was only dangerously poorly for.. what… 2 days? Before upgrading to CPAP, stable blood pressure and an altogether less serious state of affairs. Whereas: poor, poor battered Alexa. You had it desperately, horribly rough. And for such a long, long time. We caught echoes of it here. I used to come downstairs sometimes to see if there was better news of Simone after my son’s nightfeeds. And I have no words to tell you how sorry I was about Ames.
I found it helpful to retrospectively blog about some of the memories that were troubling me. I do hope you find the same.
I will read whatever you need to write.
and hugs right back atcha.
I’ve been reading since Clover and Flicka posted about the loss of your son and I have read anxiously since Simone’s birth and cheering along with every milestone with you as she has blossomed under your care.
I think this is my first time commenting and I have often wondered when/if/where you would start discussing how you could have possible managed the grief and anxiety of the past several months without losing your mind. I guess this is a long way of saying, I’m glad that you are going to get it out. And you are in no short supply of supporters. Write on.
I’m generally quiet, yet admiringly appreciative here. But I just had to say, I understand Crisis Mode and its aftermath. Let it out, sista. And sob your heart out at any song you need to. It hurts but at least it feels like something.
Wishing you strength.
There was an article in the WSJ about PTSD after a traumatic birth. Day reposted it here:
http://abeautifulday.blogs.com/a_beautiful_day/2008/08/postpartum-ptsd.html
I mention this because it may be useful in terms of healing to view what you’re dealing with through this lens. I hope writing about it here, helps, and I hope you get professional help, too, if you think you need it.
I’ll be here, listening, if that helps.
If you can’t let it out here, by God, where can you? Emotions aren’t ugly. They just are. Share yours.
My cousin lost a twin and endured weeks and weeks of NICU, and one of my best friends lost two babies (one stillbirth at 7 months along, and one preterm labor at 22 weeks)… she sometimes needs to talk about it, and I always feel like i need to listen, if nothing else it makes me appreciate my situation, when I start to get down because my Babies reflux seems out of control, her hemangioma is growing, she has thrush or an eye infection I realize how LUCKY I am to be dealing with these kinds of “problems”…. and being a mother even when things go perfectly is hard enough. And you certainly were not given an easy road.
We will be here for you as you go down this dark path. I don’t have much to offer from inside the computer except my support and compassion. You have been through so much.
And I agree with HFF, I found it tremendously therapeutic to retrospectively blog about very dark times in my life.
It comes in waves, it really does. Anniversaries are hard… birthdays are hard… milestones are hard. There’s Before and there’s After and there’s a big, stark line between the two.
Even years from now, it will hit you when you least expect it. There was a point last December (almost 3 years post-NICU-discharge) when we were at WalMart and I was walking out of the store not paying attention to where I was going and I looked up from cramming objects back in my purse and there, right in front of me, was an empty isolette. I very nearly puked right there in the store. And yet, when they had an isolette out at March for Babies in April, I was totally fine.
Hmmm… prelude? Like a Surgeon General warning, right? Bring it on if this is what you need! Bless you for having the emotional energy for it! I’m 10 days from what would have been the birth of my first grandchild and 17 days from the 20th anniversary of a SIDS death that is part of my history. It feels like you may hit some familiar territory along the way. You are a brave soul.
My adrenaline rush is finally starting to wan also. I have found that I am much more emotional about everything now. I had to take my son to get a blood draw (he spent 100 days in the NICU, so this should have been a minor blip) and nearly cried while they did it. Not just a few tears, we’re talking break down mode.
I think I get what you’re saying. I am glad you are finally able to get some of this out.
every now and then mac (who also loves your blog) or i will comment on this — we’ve been wondering when, and what more, we’ll hear about ames. and it’s not just the odd sort of voyeurism it might sound like. we feel so much for you, and have grown so attached to your family (god i hope i’m not freaking you out), and want to be “there” (where-ever “there” is [although thank goodness it's not oakland]) for you as you start to work it out.
it’s a long rough journey. but you have friends who will be with you along the way.
that’s how it works, mama. you’ll find you remember things youv’e forgotten as well. it’ll clear eventually. personally, as far as Flotsam goes… i’m reading in good times AND bad!
I’m actually really relieved that you’ve decided to do this. And I’ll read every word.
It’s wonderful that you have the strength to share your emotions here with us in cyberland. Verbalising these things helps to clear the mind so you can concentrate on the healing of the wounds both mental and physical left behind. Only the other day I was thinking about Ames and how you were dealing with his loss and if you had yet found out why he died in utero. I lost a pregnancy at 9 weeks on the day one of my nephews was born. Even now, almost 26 years later, I cannot truly ‘celebrate’ his birthday. My sister seemed to think that her son’s birth should have tempered my loss especially as it was by no means the first – or last as it turned out! I hasten to add she wasn’t an unkind person but she just couldn’t understand my grief for the loss at such an early stage. How to deal with a loss as late and unexpected as Ames’ was whilst still carrying a live baby I do not know. Add to this the trauma of Simone’s early days and, well, words fail me.
I will read of your feelings with no small measure of empathy and probably a large box of tissues!
Hugs
with as much joy as we welcomed simone, we offer quiet and warmth for your grief and sadness. this is life, and this is community.
I never dealt with anxiety issues, describing myself all my life as laid-back, easy-going, roll-with-the-punches. I had never experienced a panic attack. And then I had an emergency c-section, a baby in the NICU, etc. She’s been perfectly fine ever since, and that was 2.5 years ago. But I have had anxiety ever since she was born. Um, I certainly know what panic attacks are now, and NO THANK YOU. I’m hoping to get over it at some point, just not sure how. So if it helps you to write it down and get it out, DO IT, and I’ll still be here reading.
Alexa, let it out. It’s worse to keep it in. I speak from experience.
whew, THANK GOD. So, you have become a household name, and my partner and my mom hear “Alexa said…” and “Simone’s doing…” all the time; meanwhile, you don’t know me. (but that’s beside the point isn’t it.) Anyway, you’ve been my cosmic internet buddy, with a strikingly parallel path with mine and my son Asher’s. Until I read your exercise posts. I said I was happy for you, but really I logged off and cried for an hour. (It took my partner a good ten minutes to get me to utter “Alexa is EXERCISING EVERY DAY!” sob sob. then more about “I’ve lost my special friend who makes the shitty stuff we’re going through funny and sad and somehow more livable. She is grand and I am fucked.”) Not jealousy so much as abandonment, in that cosmic internet way. I guess the WHAM of “What Happened” hit me just a few weeks before it hit you. And then I was left to wonder why this was all happening now, when things are finally good after being so terrifying. And did you know that all therapists go on vacation in August? So, purge away, I’ll purge with you, we need it bad. xo Susanna
Hit us.
I’ll be reading.
Oh sweetie I hope you can get it all out and you can feel better. Sometimes we just do what we need to do to get through then after we need to give ourselves the time to heal. Thinking of you
Scary to say, but over 2 years later (Hallie, our surviving 23 weeker, is now 26 months old) and much proverbial water under the bridge, I’m still in grief-and-crisis-mode. And trying to control things. The sad reality is that sometimes this controlling of stuff actually does reap us some benefits, so it gets reinforced. And with dear-partner-of-mine pregnant again, the crisis mode model of operations is back in full gear. Trying to keep things in perspective is hard sometimes. So, yeah, your post really hit home for me and I’ll be sure to catch the follow-up.
My husband and I moved right after my son was discharged from the hospital and many months later I unpacked the mobile we’d hung over his bed. I turned it on and almost had a panic attack–all those emotions came rushing back. It still hangs, but I never, ever turn it on.
I know a wonderful blog that discusses infant loss and mentions others in a similar situation. The address is http://chocolachille.wordpress.com Although her situation is not the same, Nelba’s writing is amazing.
Like the others, I commend your bravery, and will follow you. Wishing you the best.
I avoided writing about anxiety or its sources because that meant I had to face them. Rather than referring to them obliquely and moving on, I was forced to get them all out and deal with it which is so stressful to me in itself.
Anyway, you know that we’re all here to spew advice and give virtual hugs.
Much love (which makes me feel like a rapper – awesome.)
I haven’t posted before, but I want to say that even when assisted conception, pregnancy and birth go WELL, there is, in my opinion, an ordinary trauma about having a new (first?) baby which means that nine months on I’m still churning and tearful at unexpected reminders of those first few weeks and months (Christmas carols, aaagggghhh). I sincerely mean it when I say I have NO IDEA how I would have coped – and be coping – with the heart-breaking and emotion mangling series of experiences you have had to face. Thank you for sharing your world with us so intelligently, thoughtfully and honestly; I’m here with you.
Oh Alexa, yes. Yes to everything you are saying about delayed grief, Crisis Mode!….all of it. I still have those moments concerning Sarge’s illness and it’s been years since he’s had a bad episode or hospitalization. Let it out, hon. We’re here. We’ll google those baby goats another time.
Alexa, do what you need to do. That is why we are here. If it is time for you to purge the darkness from your soul, then please do. We are here.
I hoped you had some emotional outlet somewhere because you weren’t sharing it here (yet!). There are so many people who care about you on the Internets and IRL, so even though this will be hard, I know you will come through. We are here for you.
I am under a week away from the 5 year anniversary of the death of my son. Having never really dealt with things I find myself an HOT mess this week. I am on edge all the time the last few days, its affecting me alot more than I thought it ever would.
My point is….get it all out in the open now, allow us to be your support. Find out if you have a local empty arms support group, I am going to start going.
We are all here for you, this is a terrifc source for you and inspiring to all of us!
Your posts are beautiful.
I know I’m not the only reader (lurker) that grieved with you, and for you, and your family. Get it out. I’ll be reading.
I started to wonder if you were superhuman or perhaps were so truly focused on the full half of the glass that you weren’t thinking about the empty half. As a glass-half-empty type, I had put you on sort of a pedestal…not fair to you. It had to happen sooner or later…we are here for you.
Let us throw our virtual arms around you, too. Crisis Mode is a lovely place to be, and to be out of, because you know you Handled It Well and Everything Is Fine. I didn’t realize that my month of NICU Crisis Mode segued into six months of PPD. A year after my son’s birth, aspects of the NICU experience would come to me in flashes, and I would get upset, or nervous, or cry. Even with my beautiful boy in front of me, perfectly healthy, who didn’t have anything wrong with him in the NICU besides no suck reflex. As a result of all this, I didn’t truly bond with him until he was 17 months old (that’s what it felt like to me.)
Which is to say, if I had the easy road, I know yours is so much harder, especially being sad to lose Ames and grateful to have Simone. We’re here for you, just to listen and to nod.
here to receive everything you need to get out…
Is it weird to say that I’m looking forward to this? Not in a morbid way but in an I’m intrigued to see how you find the words to describe what you’ve been going through, kind of way. How about I shut my mouth and await your writing? That sounds like a plan.
We are here, listening.
You gotta get it out. I’m glad you’re going to do this and help yourself. I think after any NICU experience, every parent needs to do something like this – and you had a LOT of added stuff to process. I hope this helps you immensely.
I feel the tears coming already and yet I know this will be a good thing for you and for us who read your story. It is your story after all. It is yours to tell, the way you need to tell it. Hugs to you and your family.
I’ve been so amazed that you could keep so positive while it was all happening, and I’m sure that was a blessing to you. But I think you’re wise to let it come out now–otherwise it might squeeze out from some inappropriate corner.
oh thank you, thank you thank you… I am mother to twins of TTTS with 2 months bedrest, 55 and 56 days of nicu/iscu, heart defect scare and 6 month developmental delay at checkup- after thinking we couldn’t get pregnant. It is 14 months post birth I’m on anti-anxiety and anti-depressants, but I still feel horrible. I started shaking reading this post because music, food, even some blankets trigger a breakdown. I’ve felt like imust be such a weak person or an ungrateful mom…. As my husband said to me two nights ago “you should try being happy sometime”. Thanks bud, never thought of trying that. I think I’ll dream about bunnies and sunshine tonight instead! My point is, thank you- I didn’t understand how I could have ptsd stuff, but you could do so well especially after losing sweet Ames. Go ahead- we’re all here to catch you…
much love to all four of you.
I haven’t lost a baby and can only imagine that horrible pain, but am hear to listen and grieve with you.
I do however know quitely certainly that the NICU scars a mother in a way most people even the fathers will never understand. It’s been 16 months since we finally walked out of the NICU with our babies and they are doing perfectly, yet I’m still caught off guard every so often by the pain that’s just hanging out waiting to bite. Just last week I too was driving in the car and burst into tears. 99% of the time things are wonderful and I realize we’re ok, but that 1% brings back NICU emotions at full force and at times I am totally unsuspecting. I often wonder if I will ever drive by Children’s Hospital without having to hold back tears.
Take your time and do what is best for you. We are hear to listen and support you in whatever ways we can.
Simone’s lack of sleep is thinning my patience.
It must be very difficult to have such a lovely distraction while you are attempting to pour out your heart to all of us who have already Googled “baby goat” what seems like a hundred times today.
Will Scott be home soon so we can read for a while and let our fingers rest?
I can’t wait to read chapter 1 (and 2,3,4,5, etc.)
I think even for us non-writers, writing about a traumatic experience is almost a necessary thing. Thank you for your wilingness to share it with us. We lost our sweet twin boy Owen in 2004 at 2 days and I STILL have not finished my writing and processing of the experience. My sweet girls (his twin and now a younger sister) have kept us pleasantly distracted, but every so often I am shocked at how little I have truly processed what happened to all of us.
You are amazingly strong and I hope people can benefit from your candor.
And I hope you feel our arms wrapped around you.
I’ll be back tomorrow.
I am holding your hand and crying alongside you.
I was wondering when this was coming. I’m almost relieved that it has.
I had the scariest experience of my life during the last 9 weeks of my pregnancy. I still — 16 months later — haven’t been able to write about it. But I’m hoping to one day as I know it will be quite cathartic. You are an amazing writer and I feel honored, here in the blogosphere, that you are willing to share your story. I hope I’ll find the strength to do the same one of these days.
No matter what, we’ll be here. Reading, laughing, crying and holding your hand. If you feel a little squeeze, that’s me.
I know what you mean about Crisis Mode! and everything crashing down after the Big Stuff is over.
I’ll be right here, waiting for every.last.word.
Eight years ago our last daughter was stillborn. We found out that she had died after my water broke (I was 40 weeks, 6 days) and no heartbeat was found. At the hospital ultrasound we confirmed that Kelli had indeed died. We had planned a homebirth and desperately wanted to continue with that plan. So, we went home and I was in crisis mode. I was ready to do what I had to do. I didn’t fall apart until later on after Kelli was born. So, I sooo know what you are talking about.
Talking is one of the best ways of dealing with trauma, I’m glad that you are doing so now. Hugs
I am sitting here in my office with tears in my eyes. My son was born over a year ago after losing one twin at 22 weeks and going into labor afterwards. My son hung on inside for 11 more weeks and was born at nearly 33 weeks. We were very lucky. His birth was hard, his twin was born in the morning, he was born in the evening. It was sad and your post made me realize that I too am experiencing some delayed grief. Thank you.
My son is five months old, but was born two months early after a month of (mostly hospitalized) bed rest. I completely understand what you are talking about. While I am so grateful to have a healthy baby boy, I find the strangest things hit me like emotional bricks. I haven’t processed all my anger and grief because I’ve been too busy feeling like I should ONLY feel grateful.
Thank you for sharing.
You are unbelievably courageous to get this all out. Thank you for sharing!
Sorry to be so late in the reading here, we’ve been homeless and without internet for two weeks….
But I remember how well I did in the NICU. How relaxed and amazingly well I did as we dealt with the innumerable ups and downs.
I crashed hard when he came home. A few months later when I when I went back to work to the hospital that he was born in and needed to walk up the stairs toward the NICU.
I still can’t walk up those stairs. It’s like my personal juju is stuck there.
Get it out. Lots of people need to know that there is someone else going through the same thing.