Saturday, November 30, 2013
Maybe it's the holidays. Or the six month anniversary. Maybe it's the crowds. Or the pregnancy hormones. Maybe it's the phase of the moon. Who the hell knows.
I just know that I'm spending more time crying or feeling like crying than I feel like laughing right now.
And it pisses me off.
Seriously, I thought I was done with this. More good days than bad. Able to remember without flinching. And yeah, yeah, yeah, I've read all the literature, been to the support groups - I know that grief knows no timeline. That it might spring up when you least expected it. I know, but knowing is different than feeling, than experiencing it. Knowing the reason why only does so much when I wake up weeping for no reason, when I want to go hide in my bed to curl up and cry.
It's also making me feel horribly guilty, because I feel like it's such an injustice to the spawn to come. I don't want to be sad with a baby on the way. I want to be excited. I want to be planning. I want to be thinking of lists of names and folding baby blankets and reading books about new babies with my boo.
Lou has been wonderful. Supportive and loving. Planning outings to baby stores and for maternity clothes to help generate excitement for the new baby.
I hate, hate, hate that I'm sad again. I'm ready for this phase to pass.
Thursday, November 28, 2013
Holidays are even worse than I imagined.
Family, Facebook, the news - everyone's gushing about the holiday, giving thanks for family and a "good year. " All I want to do is scream "It's been the worst fucking year of my life."
How can everyone be so happy, so normal? Today doesn't feel like a day for moving on. It feels like a day when the world is oblivious to pain, to my pain. I want the control to make the whole universe stop and take a moment to think how this day might be different if we hadn't gone through the nightmare of the lasts six months. To mourn with me. To not act like this was a year like any other.
It used to be that society dictated a year or more for mourning. Wearing black. No celebrations or social events. Quiet time spent with immediate family.
Maybe there's something to that. Maybe there's wisdom in avoiding the "firsts" after a child's death. Maybe there is recognition that celebration seems abnormal, seems callous, feels like sandpaper on an open wound, in the wake of heartbreak.
How do I balance my need to cry and hide and mourn with my desire to share holiday joy with Shea? How do I smile and light candles, as if this was a normal holiday? How do I pretend it doesn't all feel too loud and too bright and completely wrong?
How can I make the thankfulness I feel for Lou and Shea and the spawn overcome the bitterness I feel for hating the holidays?
This is the first time I have ever wished I was spending the holiday season alone.
Wednesday, November 27, 2013
And then I completely lost it.
I never wanted to wear them again. I thought I was done. And it's so soon. There are still so many memories wrapped up in those clothes. I feel like I just put them away yesterday, in the frenzy of housekeeping following Harper's death.
I need them. I hate them.
I had a brief moment in which I seriously considered scrapping them all and starting fresh. But it seemed like a stupid impulse, so I resisted.
But I stopped putting them away, because I just couldn't handle it anymore. Maybe I can finish the job after Thanksgiving. Maybe buying a few new pieces of clothing will help make this pregnancy seem new, not lost in past clothes. I don't know.
As I wept over the clothes, Lou and Shea came to hug me.
"Why is Mommy crying?"
"Mommy is sad about Harper bean" Lou told him.
"I'm sorry," Shea told me. "I'm sorry your Harper baby is all gone."
I told him thank you. Five minutes later he was chattering, full of happy plans for the "new baby that is in your tummy."
If only it was that easy for me.
Sunday, November 24, 2013
I was thinking about how this was the week we were going to share our good news with everyone. I was thinking about the upcoming doctor's appointment, and how nervous I was about not hearing a heartbeat or finding something horribly wrong. I was thinking of the meltdown the night before, where I sobbed and sobbed at the thought of the upcoming holidays and all the lost dreams and new dreams blending together in sadness. I was wondering how I could get through the day with so little sleep after so much crying with a self-imposed prohibition on caffeine. I was thinking about how I hesitated when a work acquaintance asked me how many kids I had, stumbling over my response. I was thinking about whether I could find anything to wear that wasn't maternity clothes, that still looked professional enough for an evening work commitment. I was thinking about how I wouldn't see Shea that evening to tuck him into bed. I was hoping he liked the homemade chili I'd sent in for him for lunch.
Do you know I wasn't thinking about?
It was Harper's 7 month birthday. And I forgot.
How do I feel about that?
I honestly don't know. Maybe I subconsciously remembered, thus explaining the timing of the nighttime meltdown. But, in truth, I think I just forgot.
I never thought that would happen. Ever.
Part of me feels horribly guilty. It's too soon. I'm not ready to forget. As dreadful as each milestone is, it's also evidence that she existed. That I had a tiny baby, and I held her in my arms as she lived and as she died. She will always be my Harper bean, and I don't want to let her go.
Part of me also feels relief. Like maybe this is healthy. Like maybe I'm focusing on the future for a change. A future with Lou, and Shea, and his upcoming little brother. Like maybe remembering Harper would have been 7 months isn't quite as critical as remembering I'm coming up on 20 weeks pregnant, and I need to schedule an ultrasound.
A couple of people have asked me whether it bothers me that the spawn's due date (May 7) is so close to when Harper died (May 5). It doesn't, not at this very moment anyways. It'll probably begin to get to me as we get closer. The 5th of every month is much more painful than the 18th, and I can't imagine that any anniversary of her death will be forgotten any time soon.
The fact that her death is so much easier to remember than her birth makes me very sad. But I suppose trauma and pain have a way of deeply branding memories in a way nothing else does.
For the moment, as I sort out in my own mind how I feel about my first moment of forgetfulness, I guess I'll err on the side of hopefulness, and think about this being healthy, a new focus on a happy future with my growing family. Harper isn't forgotten, but she's also not here, and I have one and a half living children who need their mommy present everyday. Not every day minus two days per month. Maybe it's just time to cut that down to one day.
Although I still feel incredibly sorry that I forgot.
Happy belated birthday, Harper bean. I never forget that I loved you.
Friday, November 22, 2013
Dear Harper bean,
This is a secret post. Just between you and me. I have some news, and I wanted to tell you before anyone else, even your daddy.
I'm pregnant, little bean.
It's barely sinking in. I have been occupying myself making a cute video to break the news to your father, so as not to think about what this all might mean. The testing. The fear. The waiting. The hope.
A May rainbow.
I hope it's a little girl. A sister for you, bean.
I hope that the day I hit the publish button on this post - 10 to 12 weeks from now - it will be a happy ending on a long, sad road, and not the forging of a new path of sorrow.
Stay tuned, Harper. I love you.
September 3rd, 2013
I have had to reschedule my doctor's appointment three times, because I can't seem to use my calendar correctly. Already the nervousness and panic is beginning. I am not letting myself feel excitement yet. Or joy. I have begun to think a lot about what it would be like if we get bad news, bad test results. It is keeping me up at night, haunting me during the day. So many good news stories on the genetic carriers board, but my eyes seem drawn only to the bad ones.
Lou and I have been talking about what to call this new little one. Shea is boo, Harper was bean.
Sept. 8, 2013
Nearly 6 weeks pregnant, and the paranoia has officially set in. Everything is in two week increments. Two weeks until the doctor's appointment. Two weeks after that for the CVS. Two weeks more waiting for results.
Then the potentially horrible prospect of termination.
I am having nightmares about it all. My last CVS experience was not good. Atypically horrifically painful. And I keep reliving that pain, magnifying it, in every dream. I dream of not seeing a heartbeat. I dream of having to say goodbye again.
I keep telling myself I'll feel better after the first time I see that heart beating. Not being able to tell anyone is so much more very isolating than usual. I just want this little one to be OK.
Sept. 17, 2013
Guess what, bean?!? Today I saw the heartbeat for the first time. A tiny little flutter, barely visible, but clearly there. I was reminded how much I like seeing my high-risk OB, he's relaxed and reassuring, not phased by dates being off or taking a couple minutes to find that little heart.
CVS is scheduled. On our wedding anniversary. Again. Hoping that this time it's a good omen.
Trying not to get too attached to this little rainbow before we know more.
But I would really like a little Schmoo...
Sept. 18, 2013
Morning sickness and exhaustion. I'd forgotten how during my last pregnancy I was so relieved I would never have to go through this again. Famous last words. Wish I could be reassured that these were signs of a healthy pregnancy, but since it didn't work out so well last time, it does nothing to mitigate my anxiety. Wishing badly I could fast forward a few weeks and get the results.
Sept. 20, 2013
The only thing more paranoid than a pregnant woman is a pregnant woman who is still reeling from a loss. Every cramp, every twinge makes me panic a little. I worry because I'm tired and nauseous (like I was with Harper), I worry when I'm not tired and nauseous, because maybe something's gone wrong with the baby. I try not to think about it too much, but find I can't think of anything else. I tell myself not to get too attached to the baby, because it might not be a keeper, but I long for the hidden glow of falling in love with a blip on the US, like I did in my previous pregnancies. I worry all the time about jinxing it, not wanting to tell anyone, not changing my signature on discussion boards, not sharing the secret with the SLOS family, as so many others do. I wonder: is the baby's heart beating now? How about now? Is it still OK? I think about the odds continuously, hoping that 75 percent chance is as big a target as it sounds. That this time, the Punnett square will be kind. I told Lou the other day that if this one doesn't work out, I'm done. No more trying. I wonder if I mean that. 27 more days until the CVS.
Sept. 21, 2013
I'm at the airport, alternating between panic, resignation, and hope. I am no longer tired or nauseous. I no longer feel pregnant. "I think there is something terribly wrong," I told Lou. "And there is nothing I can do."
Ultrasounds are a service airports should provide. Like massages. Or flu shots.
It's either OK or it is not. I imagine myself going to an emergency room in San Francisco, begging for an ultrasound. I tell myself that 3000 miles away from home is not the place to hear bad news. I constantly turn my awareness inward, searching for some bodily sign that will make me feel better, reassure me.
I never thought I'd miss that non-stop car sick feeling.
So I sit in the airport and crochet. A baby blanket. Nothing I can do for my baby, but at least I can help someone else's stay safe and warm.
I wish I could hear that little heart beating. I wonder if it has stopped.
Sept. 29, 2013
Nauseous, not nauseous, I worry. I wonder if the nausea is psychosomatic, because I'm so stressed about what it's absence means. I try to steel myself for the news of a missed miscarriage at my next appointment. I wonder what it will be like to find out that something is wrong. Then I realize I've already done that. I've survived it. Maybe it will be OK.
Then I feel sure that we will be unlucky again.
We've begun to tell a few people. Very few. I almost regret it. It's terrifying, makes it feel more real. I'm not ready for real. Real means potential bad news. Real means terror and worry and fear.
18 more days until the CVS.
October 3, 2013
Only one more week until the next ultrasound, two weeks until the CVS. Anxiety is my constant companion.
October 9, 2013
The ultrasound is tomorrow, then it will be one more week until the CVS. My morning sickness comes and goes, but the fatigue is gone. I've reached a place where I mostly try to forget about being pregnant. Like it isn't really happening to me. Hoping tomorrow goes smoothly. And that I can hold down my lunch.
October 10, 2013
Dear Harper bean,
Meet spawn - due May 7 and looking strong, flying upside down like Woodstock! Oh, please, oh, please, let the CVS be OK!
October 15, 2013
Only two days until the CVS, and I'm feeling horrifically anxious. Against my better judgement, I tuned back into the community of genetic carriers online. Turned out to be a very bad idea. For whatever reason, there's just been a slew of new participants who have just had horrendous luck. With diseases that carry the same odds, they've just had negative result after negative result, termination after termination. Reading their stories has filled me with dread and has made it very, very difficult to stay hopeful. I keep telling myself we beat the odds once, we have Shea. But the evil, niggling voice within tells me we've been unlucky before, too. It's a terrible, terrible feeling knowing there is this little one growing inside you and all you can do is wait and hope it all turns out OK. Lou spends a lot of time trying to reassure me, but he thought it would be OK last time, too. And that didn't work out so well. I just want to be relaxed and enjoy the secret time of being pregnant, when know one knows but you, your family, and your wee one. Instead, I'm spending an inordinate amount of time focused on the horror of having to terminate my little Woodstock baby. My other big nightmare is that we won't even get to the CVS results, because we'll get the early results back and find out there's some sort of trisomy issue. I'm not sure if I want the next two weeks to fly by or stretch out as long as possible.
Oct. 17, 2013
Only a couple of hours until the CVS. I keep thinking of another SLOS mom who went for her CVS, only to find no heartbeat. Later testing revealed the baby was positive for SLO. "What are you so scared about?", Lou asked me last night. I told him it was a dumb question. "The baby will test positive for SLO, and we'll have to terminate," I said. "But we won't find that out tomorrow," he told me gently. He's right. Today, I just need to get through. Hope the pain isn't as bad as last time. Another anxious anniversary.
I survived the CVS. Much less painful than last time, although pretty sore in the aftermath. Spawn was a squirmy, active little nut, waving at us from the ultrasound. Although it's too early to get an official NT reading (our first sign something was wrong last time), at first glance, the doctor thought it all looked normal. A tentatively hopeful finding. Now we wait. Hopefully Australia will be enough of a distraction to keep me from going out of my mind in the next two weeks. Emotional roller coaster of a day - started sick with anxiety, felt more positive as I watched Woodstock dance on the screen, and now back to feeling terribly anxious. Oh, please, oh, please, let it all be OK. Please.
October 18, 2013
The bad news begins. They didn't get enough of a sample. Which means they have to culture the cells - so it will be a FULL MONTH!! before we get back any results. Ugh.
Ugh. Ugh. Ugh. Ugh.
Feel like history is repeating itself, like this is the first stop on the express train of bad news. Two weeks was hard enough - one month?!? I'm feeling so alone right now. Devastated, in pain. Every week that goes by is going to make termination (if necessary) harder - trying to imagine what it will be like when I've already got a baby belly, when I might feel the little one wiggling. FUCK. I hate this.
October 19, 2013
I didn't sleep at all last night. Anxiety and worry has increased manifold. Nothing to do but wait, but that doesn't make me feel any better. Lack of sleep seems to have led to illness - I feel terrible today and the inability to take medicines isn't helping. I don't know how I'm going to get through an entire month. How do I hide my pregnancy for that long? My pants are already feeling tight. Sigh.
October 26, 2013
Good news today!!!! The preliminary findings came back perfect - no chromosomal problems! And they came back faster than expected, so maybe the cells are growing quickly, and we'll get our SLO results back sooner. I'm trying to live in denial until then, here on vacation in Australia, it's easy to be distracted. Wishing I could indulge in some wine. Still, this small piece of good news has made me hopeful this rainbow dream might come true. Hoping that glimmer of joy does not prove to be my undoing.
November 6, 2013
Australia has been a fantastic distraction from pregnancy anxiety. I've been enjoying every bit of our time Down Under - or at least have been too exhausted to be thinking too much - and haven't spent too much time obsessing over the test results. In fact, being in Tasmania, we were completely out of touch with the rest of the world, literally deep within the wilderness, surrounded by wallabies, wombats, and devils. So I couldn't have found out any news were there any to be had.
I realized how much I had been hoping beyond hope our cells had grown at superhuman speed when we emerged back into the land of the WiFi and my email inbox remained devastatingly silent. I found myself crushed and anxious all over again.
"I just want to know," I told Lou as we sat on a gorgeous beach in Stokes Bay, on Kangaroo Island, watching the turquoise waters and Shea splashing in a tidal pool. I just want to know.
November 8, 2013
The knee pain began in South Australia. It was worse when I was sitting still or at night, laying down. I didn't think I'd done anything to my knee, although we'd been doing a lot of hiking in Tasmania, and it wasn't a muscular or joint type pain. Rather a throbbing, sharp, nerve pinching sort of pain, like a tooth ache or sciatica.
I woke up in the middle of the night, in the restored railway station we were staying in in Callington, South Australia, and my knee was in agony.
At that moment I knew. I had deep vein thrombosis and was in imminent danger of a blood clot being discharged from my knee to my brain or heart, leaving me dead or incapacitated. My reasoning was this: I was pregnant, and therefore at higher risk; I'd recently taken a 24 hour flight; and I once saw a documentary about a pregnant woman who suffered from DVT and was left in a semi-vegetative state that took place in Australia. So clearly this sort of thing happens in Australia.
At 2 AM, in a great deal of pain, this all made sense.
To say we were miles from the nearest WiFi hotspot is probably a generous overstatement. We were in the middle of nowhere.
So, despite our vows to use our phones as little as possible to avoid the costly data fees, I dove for Lou's phone to frantically Google DVT and knee pain and pregnancy.
Lou's phone sucks. And did I mention I was in pain?
So I turned my phone on. Good news, my symptoms did not sound like DVT. I was not going to die that night.
And I also got this email. From our genetics counselor - subject: Amazing news!!
So happy to tell you that I just got back results and the baby is unaffected with SLO. Furthermore, the baby didn't inherit either of your mutations, and is not even a carrier of SLO. Hope this is the icing on the cake to a great Australian vacation!"
Lou was awake, suffering from his own insomnia issues. In a tone of disbelief, I read him the email. And then I couldn't stop smiling. We laughed, I cried, we stayed up entirely too late, basking in the happy news of our rainbow. It was worth every tired moment the next day.
We're having a baby!!!!!!!!!!!!!!!
I love Australia!!!!!!!!
November 11, 2013
It's a boy!
Nov. 12, 2013
So, we're having a baby, and I'm a little terrified to let the world know, to hit publish on this post. I keep telling myself, "Just one more doctor's appointment. Just one more check to make sure that little heartbeat is there, and then I'll tell the world."
But it's scary. Because I know there isn't always a happy ending. I've lived that. It sucked.
I'm also in mourning, not only for Harper, but for the daughter we'll never have. After Harper, maybe because of Harper, I was kind of hoping for a little girl. I know Lou was, too.
But I adore the little boy I have, and boys always love their mommies best, right?
Plus, this totally allows me to fulfill my grand vision of brothers in bunk beds, because damnit, I always wanted a bunk bed as a kid, so my kids are going to have them!
It all just seems scary and unreal and guilty and happy and sad all at the same time. Maybe that's just the jetlag talking.
Harper bean, I can't wait to tell your new little brother all about you some day.
Nov. 18, 2013
Having two blogs - my normal therapeutic outlet and this secret post - is a little like living two separate lives. I am having an incredibly rough night, the worst in months, and it is partly because of the upcoming holidays, which is something I can write about, because writing still helps, still heals.
But it's not just the holidays that are getting to me.
It's being pregnant at the exact same time of year. Again. It's causing the exquisitely painful blend of grief and happiness, joy and fear, memories and anticipation.
As Yogi Berra would say, it's like deja vu all over again.
On one hand, I want to shout my news from the rooftops. A baby! A healthy baby! One we can take home, and hold, and love. To be "new baby" for Shea, who we've told, and is super excited.
But then there's the fear. Because I'm reliving all of the events of last year. Beginning to show around Thanksgiving. Wondering what maternity dress to wear to a holiday party. Getting through endless holiday events wishing for a glass of wine. Worry, against all logic and reason, that all this repetition will lead to history repeating itself.
The guilt of being excited about this baby, because it's starting to seem too much like a replacement for Harper. And it's not. He's not.
Trying to manage heartrending grief I'm feeling in this moment about losing Harper, while trying to cling to the happiness you're supposed to feel about a new baby. Reconciling the excitement of those first little flutters with trying to never lose the sense memory of holding Harper's hand.
I talked to parents who lost a child and found out they were pregnant in the midst of grief. They tried to describe it to me. I didn't understand. Now I do.
It is a paradoxical situation. Totally impossible. And yet somehow, there it is. Like the living embodiment of a M.C. Escher painting of emotions.
I wish it would all just stop hurting.
Nov. 19, 2013
In June, this romper made me cry in a store. It was so cute, and I no longer had a baby to dress in it.
Today, I bought one. I hope you like it, spawn.
My pregnancy is almost halfway over, and so few people know. I wonder if they all think I'm just getting enormously fat? It's not a secret we can keep too much longer, because it's time to move into maternity clothes. Maybe even past time.
48 hours until the next doctor's appointment. Then we can let everyone know.
Nov. 21, 2013
Some more good news from the genetic counselor: microarray results all came back normal. In truth, I'd completely forgotten we'd asked for the microarray results, I was so focused on the SLO test!
I have a doctor's appointment today and am feeling irrationally nervous about it. Hopefully, all will go well and tomorrow will be the big reveal.
Wish me luck, Harper bean....
So the doctor took out the Doppler and there was no heartbeat.
I felt like my heart stopped beating, too.
The OB soothed me, "Let me just get an ultrasound, the baby's just not cooperating with the Doppler."
The wait for the ultrasound machine seemed like it took forever. But then there he was: one wiggly spawn with a nice, strong heartbeat. Hi, Mommy, he waved.
Glad you're ready for your public debut, spawn...
Sunday, November 17, 2013
No matter how good you think things are going, no matter how many truly happy things there are to celebrate in your life, there is nothing good about the first holiday season after your baby dies. Nothing.
Tonight, it hit me like a ton of bricks. I cried and sobbed like I haven't for months. I wept to the point of gagging. I hurt again, like it was only yesterday's wound.
I don't think there will be much sleep tonight.
"I didn't know I was still this sad," I told Lou. I didn't think you were either, he replied, as he held me.
This was supposed to be my baby's first Thanksgiving. First Hannukah. First Christmas. First New Year. First snow.
Instead it will be deja vu of last year, when the holidays were all about hopeful anticipation of the baby to come. Instead it will be overwhelming crowds and stimulation against nerves and emotions brushed raw, with no escape route in sight. It will be awkward conversations and well meaning gestures inflicting pain. It will be a constant reminder of that which isn't.
It's such a stereotype. Grief at the holidays. Google that - it yields over 13 million results.
At this time last year, we didn't know about the heart defect (December 20 was the fateful day for that little revelation). We were just excited to be having a baby. The tests had all come back clear. Everything was OK.
But it wasn't OK.
My baby died. It's not just a thing that happened. I've begun to think of it as a thing that happened, and it's not. It's not, it's not. it's not.
The holidays are like a minefield of triggers. Of annual events. Of people you see only once per year. Of things that are exactly like they were last year only now it's all completely different.
In between the tears was panic and hyperventilation at getting through the next couple of months.
I really didn't think I was still this sad. I hate that grief still has the power to completely overwhelm me, when I least expect it. I hate that the rest of the world has moved on, that most of the time I've moved on, and yet there it lurks - the pain, the guilt, the fear, the sorrow. Like a nightmare in the darkness just waiting to pounce and steal your breath.
It makes me sad, it makes me angry, it makes me guilty that what used to be joyous times are now something I am dreading like a root canal. I don't know if I can do it. I don't know if I'll wake up tomorrow and feel totally OK and ready to dive into the holiday spirit. I just don't know.
I didn't know I was still this sad.
Monday, November 11, 2013
There's not a day that goes by that I don't think about you, bean.
I can't really believe it's been 6 months. It feels like a lifetime ago. It feels like yesterday. It feels like the half year mark should feel more significant. Like we'd reached some milestone of pain. But it's just another difficult anniversary. Marked by a letter from hospice noting that the six month mark can be a rough time.
I spent the six month anniversary of your death on Kangaroo Island, in Australia. A place where you can see billions of stars at night. And I thought about the ancient Greek myths where heroes are honored by becoming constellations. I thought about the idea of you as a tiny star, twinkling above us. I love that idea.
Not long after you were born, I thought of another Greek myth. Although I had to use Google to locate the name of the Hekatonkheires, I thought a lot about them - hideous, deformed monsters, exiled but beloved by their mother.
The night you were born, as the neonatologist's list of your deformities seemed to go on forever, all I could think was that I had given birth to a monster.
But I was wrong. You were beautiful. And like Gaia, I loved you with everything I had, every cell in my body, despite your deformities.
I felt horribly guilty many moments on Kangaroo Island. I would not have been there, admiring the stars, surrounded by exotic animals, excitedly spotting koalas in the tree tops, or splashing in turquoise water, had you lived. I wonder sometimes whether I'd still be loving you today, with all of your special needs, were you still alive, or would I have begun to resent the changes you'd brought into my life?
I like to believe, no matter what, you'd always be the little girl I fell in love with.
You still have the power to make me cry, Harper bean. And right now, in this moment, I can't think of anything I want more than to hold your tiny hand one more time.
I wish I could have brought you to see the kangaroos, too, daughter mine.
I'm sorry I ever believed you to be a monster, Harper. I'm sorry I wasted a single moment alone with you feeling sad and sorry for myself. You deserved so much better than that. I hope that, in the end, you were somehow able to sense every bit of love and loss I felt for you. I hope you know that I thought you were beautiful. A perfect imperfection.
You will always, ALWAYS, be my daughter. And there's always going to be some part of me that misses you. Every day.