one year

I can’t quite believe it’s been a whole year. I remember it like yesterday, but I also feel like some time has passed now. It’s still hard to wrap my head around any of it though. Not a day goes by on which I don’t miss them.

I keep thinking about how much they changed me, but it’s a difficult question. Because while I think that a lot of how I am at the core is still the same, losing A & C has certainly reshuffled my priorities. And in part I simply haven’t figured it out yet.

We didn’t really know what to do with this day. Cake kind of seems weird without them here to enjoy it. I didn’t want to do anything with others as my own feelings are complicated enough – maybe I just wanted to be “allowed” to cry whenever I had to.
Initially I had thought about going to the beach where we scattered their ashes, but H is terrified we could get into an accident and something might happen to Strawberry Baby, and I’m not all that comfortable driving anymore anyway, so we stayed and just went to the water here.
I feel kind of bad about not doing much for them today. We’re planning to go to said beach once Strawberry Baby is here. She has been kicking me reassuringly all day long, sweet girl. I wonder if she knows or feels that her mom is having a rough day.

I’ll leave you with another picture of our precious firstborns. And an extra picture of C – by the time the professional photographer came, it had been over 30h since she was born, and time was starting to wear on her little body. But she was a truly beautiful baby. They’re both very much loved and very much missed.

balloons and ashes

One of H’s cousins went through a similar loss as ours, pPROM at 18 weeks and then the birth of her tiny daughter two weeks or so later. When we met over Christmas, one of the things she said that stayed with me was that she found it so terrible having to leave the baby in the hospital, instead of taking it home to bury it in the garden.^*

We don’t have a garden, but that moment of having to leave the room with my babies to never see them again on this earth was one of the hardest things I’ve had to do. We had a wonderful nurse that did everything she could to make it a little easier for us, but of course, it was still hard.

We had decided relatively quickly to have the girls cremated. The social worker had given us a list of mortuaries. Calling them was hard, especially since the receptionist at the first place asked why I was calling after I had given him a summary of the situation. But at the next place I got a lovely woman on the phone, who immediately expressed her condolences and gave me what seemed like a reasonable quote, but said that she’d talk with her supervisor to see if they could do it for less. Ten minutes later, she called me back to tell me they could cremate our daughters for 250$.^**

I initially dreaded not just the call but also the visit and the paperwork, and halfheartedly considered asking friends to do it for us. But I’ve come to realize that this was one of the few things we were actually able to do as A & C’s parents. We won’t ever get to write notes as for why they didn’t go to school last Monday, but, hard as it was, we got to arrange their cremation. Because we are their parents.

They really tried to make the paperwork as easy as possible for us. Getting all the names correct was important – after all, these were among the few official documents we’d ever get with their names in print. H and I have different last names, and the girls have his. “Usually the babies are under the mom’s name”, she said. Do you know what’s wrong with this sentence? “Usually”. There shouldn’t be anything usual about this.

A week or so later, I went back to pick up the ashes. With the nomad scientist life, finding a suitable permanent place for them seemed difficult. We decided to scatter their ashes at sea – we both love the sea, and after a while they will be “close to” us in all sorts of places across the world. I sobbed when I got into the car. I didn’t want to scatter my children’s ashes, I wanted them here with me, alive. H repeatedly said we didn’t have to go. Once I had calmed down, we drove down the coast and found a bay between two banks of fog. The water felt like it was freezing cold. We stayed to say goodbye, and then to watch a beautiful sunset.

I’m not sure why these memories are coming up so vividly now. Perhaps because we are considering a beach vacation, and the beach, like so many other things, now reminds me of my daughters?

When we left the ER recently, we passed the gift store, and H said he had been hoping so much that the next time he’d be in the hospital he’d be able to go into that store and buy a little present for me and our child. I was already pregnant again, and hopeful that we’ll bring this little one home, but that showed me how hard it is for him. Peering through the window, we considered which of the balloons^*** he could get us, come November.

^* She had her first child without any problems, and later brought home another daughter after getting a cerclage in the 2nd trimester (by choice, it wasn’t clear what caused the pPROM, but she did get her rainbow baby, which is the most important part).

^** I have since heard that some places take care of stillborns for free. It’s not so much about the number for me though. I think any form of supporting parents in this terrible situation is more appreciated than we may be able to express in that moment.

^*** I have never had or bought one of these huge colorful printed balloons, but we’re so ready to celebrate that a smiley-flower or a gigantic butterfly seem appropriate. I so hope we’ll get there.

a surprising regret

I think one of the aspects that make me want to tell people about this new pregnancy earlier is that I feel I missed out on this with A & C. I was worried something would go wrong, and I thought I had time…

The contrast between how people avoid talking about them now, and how I’m sure they would have happily asked about living babies, is striking and painful. I sort of regret not having shared the happy times I had with them. I think for many around us, the experience with A & C stands out only as a dark spot in our lives. But that isn’t true. There was so much love and happiness.

And perhaps another aspect is that I now know that not telling won’t protect me from anything. (Rationally, of course I knew that before, but infertility comes with far too much wishful thinking…)

sidelined

My brother called to tell me that his girlfriend is pregnant.

The fact that he called (we mostly just text) told me it was something important – good or bad. He really tried to do this in the kindest and most gentle way possible, and he knew this would not be easy for me to hear. But, as you probably know from experience, some news still sting even if transmitted ever so gently.

I was ok on the phone, congratulated them and wished them all the best, asked how his girlfriend was doing (pretty good) and whether they were planning to get married (yes, but later, once the baby is there). But of course this brought up all those ugly infertility feelings: they are younger than we are, they have been together for a fraction of the time we have! (because clearly it works this way) Maybe they weren’t even trying! Add to that the ugly loss feelings: she’s 9 weeks, and they assume they will have a baby in September. Even if I am pregnant now, I will worry about losing the baby until we have reached at least 26-28 weeks (not that it’s “safe” after that, I just haven’t been there, and the likely outcome is better than at 20w). Probably beyond that, too.

I finally burst into tears just before H came back home. We spent some quiet time missing A & C, and being hopeful for this cycle.

Of my three brothers, this is the one I am least close to. Not that we have big arguments or anything, we’re just different. I had told my two other brothers about the FET but not him, and didn’t feel like mentioning it yesterday. The others might have told him, it’s not a secret – but as he didn’t bring it up either I think he might not know.

And yet, there is some sort of silver lining when looking beyond the stings. I grew up in a big family and always enjoyed spending time with my cousins – and, as it looked like neither of my brothers was going to start a family soon, I was a bit sad to think that our children might not have this. Admittedly, much of this thinking was before we lost A & C, so now there is an extra layer of complicatedness. But as I’m really hoping to bring home a baby someday soon, I’d be happy if he or she had a cousin to play with.

yoga

I’m trying to distract myself from 2ww symptom over-interpretation for a little longer and write about something different… but I’m sure I’ll be back with those symptoms soon. Thanks for all your good wishes!

I began yoga after 1.5 years of trying unassistedly and unsuccessfully. Desperate, frustrated, but not ready to move on to treatments – which I guess was part denial, part finances, part not-readiness of facing the endeavor that ART seems from the outside. I was willing to try anything “natural” and bought Fully Fertile, a book with a holistic approach to fertility that can be taken alone or together with treatments (deep down I assumed we’d probably need these treatments eventually, and was and continue to be annoyed whenever someone suggests they could have fixed this all with their non-invasive method of choice).

At the same time, I was fairly skeptical, and phrases like “disappointment stored in the hips” made me frown. I flat out didn’t believe that yoga would help me release emotions – I was hardly getting any exercise and was simply looking for the physical benefit for my body. In particular, I doubted I’d be in tears at the end of my first practice, which was described as a common experience. How very wrong I was. I cried and cried. Not just about the obvious aspect, our failure to conceive, but I also discovered many unresolved feelings around my mom’s death that I hadn’t even been aware of.

I practiced about twice a week, and although it didn’t get me pregnant, I felt more at peace with the overall situation. And figured out the major reason for some terrible pain I’d been experiencing. After moving halfway across the world, I bought a proper yoga mat (which to me makes a surprising difference), picked up a yoga magazine at the grocery store and started incorporating other, not necessarily fertility-focused poses and sequences. We were also on a much-needed break from trying, so that wasn’t the main focus. Annoyed that I sometimes didn’t manage to squeeze in my twice-weekly practice, I decided that if I tried to practice every day, thinking that even if I missed one here and there I’d still get “enough”. I have been practicing daily ever since.

Once we actually started our IVF cycle I went back to mostly fertility-supporting sequences. And then I got pregnant! Joy! Even before I had searched the web for poses to do and to avoid, and it wasn’t long before I bought some prenatal yoga instructions. When following standard sequences I’d used before, I left out any poses that seemed too challenging and almost all twists, but overall was determined to remain fit. Squats are supposed to be especially good, to open the hips… looking back I worry a bit that these may have contributed to what happened, although it’s impossible to know and perhaps not even that likely. Nevertheless, in any future pregnancy I am lucky enough to experience, I will keep squats and any other poses that put pressure on the pelvis for the second half of the 3rd trimester.

I went back to the mat the day after we came back from the hospital. Probably not what anyone would recommend, but it felt right. I had asked my husband to move the sofa so that I could practice in the space where we had been planning to set up the cribs… I did some gentle stretches and restorative poses and cried and cried. So hard that H heard it while in the shower, and came to comfort me. Poor guy. He should have heard his daughters cry, or even better, giggle, not his wife cry over their loss. I had thought of my babies every time I practiced while pregnant, and I continue to think of them in every practice I do now. There were (are) many more yoga sessions when I paused to cry. In a way it gives me a safe space to reflect my feelings. There’s just me, if I need a break I can take it. Not to say that I don’t cry during other times of the day, or during every practice, but it does help me to know that I have this time and space to release any emotions that may come up.

A few days ago, on one of their due dates, I cried all the way through my warm-up. I didn’t think much of it at the time, but later realized that this reflects how I have been dealing with things lately – I may get sad, but I move forward, through and with the grief.

And during the last days, I have been practicing with that familiar nausea, and even more fears and hopes than before. But that will be the topic of another post.

breaking the silence – part 2

My aunt and uncle write a yearly newsletter that goes out to friends and family, usually with the Christmas cards and presents. Both of them, as well as their grown children, write about the main events of their year. It goes to many people – they are wonderful and have many friends as well as extended family on both sides.
Last year, they included how very sad they were when they heard about the loss of our twins. I cannot even begin to describe how much this means to me, such a public recognition of their lives and the depth of our loss.

breaking the silence – part 1

“I wanted to talk to you”, he said, “about your miscarriages”. I thought that this was actually called stillbirth but didn’t say anything. I was amazed this conversation was happening, months after our loss.
“It’s difficult to talk about this as a man… “ he said, and again I didn’t interrupt but tried to give him an encouraging look while thinking that it’s difficult to talk about this for just about anyone. He proceeded to share that they had had seven miscarriages, in different stages of pregnancy. I knew they have two living children, but seven losses sounds awful. The hidden pain you don’t see in a big, strong man that has drawings from his kid pinned to his office walls. “Of course it would have been more helpful to tell you this earlier, when you lost your babies, but then I got sick.” Then someone knocked on the door and he had to leave for another meeting. I got up and said “Thank you”, in a way that wouldn’t be out of place in a professional interaction, but tried to put my heartfelt appreciation for sharing his losses, for letting me know he had an idea of how we felt, and that he and his wife thought much about us, into those two words.

grief, interrupted

Apologies for the lack of updates after this rather distressing post. I’m writing a grant (not exactly a recommended activity a few months out of such a loss…) and that is taking most of my time. My husband is not amused. Anyway, my GP thought that my heart sounds just fine, but that I should find a counselor, go to yoga and meditation classes, and try acupuncture. And when I say “my GP” that is vastly exaggerated – the woman I used to see, from the same practice, now only works in their office in the outskirts, too far for me. So I had to tell the whole story again. Which in a sense was good, I think – it brought back the realization that this really was a terrible loss, and that it is okay to still be upset and sad and angry about it. I think I had somewhat withdrawn over the holidays, worried that all the interactions with family members and their sometimes insensitive reactions would be too much. Maybe this was a necessary protection mechanism, but it wasn’t a feasible long-term approach. My body clearly communicated it wasn’t happy.

I’ll write about yoga and meditation another day – I practice yoga at home every day, and going to a class can’t hurt. As I was willing to try acupuncture, my GP checked with some people she works with and found me an opening for the next day. So I went. I had heard some amazing things about acupuncture, and while it wasn’t bad, it wasn’t the most relaxing experience of my life either. I have to admit that I felt considerably more relaxed afterwards (though the cynical part of my mind keeps wondering, wouldn’t that be the case if I laid down and relaxed for half an hour without needles, too?). But the acupuncturist isn’t a good fit for me, I think. She was overly convinced of herself, which I’ve never dealt with well, and now have even less tolerance for. She told me she “was early too” with giving birth, “as she’s on her feet seeing patients all day”, which I found kind of inappropriate, given that she got a healthy living baby out of it and I got a box of ashes. And she asked whether I was on a flare protocol for my FET and wanted to put me on a no-wheat-no-diary fertility diet, kind of making me wonder if she had listened at all. I went back a week later, because I’m all for second chances and I did feel better afterwards after all, but it only confirmed my first impression – acupuncture may be good for me but this person isn’t a good match. So this week I’m seeing someone else in a much more affordable place.

And then, the counseling. I have thought about this. The hospital, the MFM, the RE, they all asked. And the social worker we had in the hospital really wasn’t a good fit for either of us (there may be a pattern here… although, to balance it, my RE and MFM are wonderful). H was so unconvinced that he never wants to see a counselor again. It doesn’t help that, where we grew up, counseling is sort of frowned upon, only for cases where “there’s really something wrong with you”. Sigh. I see that I probably should see someone, but don’t even know where to start. Suggestions? Experiences?

I’ve started to do some meditation before I go to bed. It helps me calm down, and I think I can sleep better after having released some of the sadness. And yesterday I suddenly thought of two little angels, connected to my heart through golden strings. First I was concerned the could completely unravel my heart, as in this awesome video. But then I remembered that my love for them is infinite. Even if they fly to the other end of the universe, there will still be enough love in my heart to connect all the way to them.

my heart

I had another middle-of-the-night panic attack, and have been feeling “jittery” more often that I’d like, particularly in the evenings. I wonder if this correlates with the fact that my grief also most often surfaces when it is dark outside.

This didn’t start until a month or more after we lost the babies, and I assumed it’d go away on its own. But now I’m getting concerned about potential physical damage this frequent stress could do, and will ask my GP for advice.

What I didn’t realize until this morning was that yesterday was the 3-month anniversary of our loss. Probably my subconscious knew.

On bad days I already feel like I failed my daughters, failed my husband, failed as a woman. And somehow these episodes make me feel even more like a failure, and scare me, which in turn makes them worse. I need to get out of this cycle.

I was really hoping to move forward this year, but instead I seem to be stuck in the “one step forward, two steps back” pattern of grief.

helpless

One of the memories etched into my brain since the birth of my daughters is how tiny they were, and how big and yet helpless I felt. So much stronger, so robust – and unable to save them. They were tiny but perfect, the only thing they would have needed was more time in my womb. Perhaps the worst was when A was trying to breathe – she was struggling to stay alive, and there was nothing I could do.

I think others feel similarly helpless when facing our loss. They would like to comfort us, but don’t know what to say. For me, not saying anything leads to a strange limbo – I keep waiting for them to at least acknowledge our loss, even though, realistically, that may never happen, if it hasn’t in the first few meetings or email exchanges since. Nevertheless I feel myself getting tense before each new meeting – for most comments, caring and loving as I’m sure they are intended, also stir up raw emotions.

Yesterday I had another helpless moment – H sneezed rather violently (not atypical for him) and then complained about chest pain. As it didn’t improve, we went to the ER, although we had hoped not having to enter another hospital for a while. Due to “data protection” issues, I wasn’t even allowed to be with him most of the time. After clear ECG and chest X-ray they declared the pain of “musculoskeletal origin, probably” and sent us home with blood pressure medications – that was the part they were much more concerned about. 200 isn’t a healthy value. He seems to be getting better, if slowly, but I woke up in the middle of the night with a pounding heart that wouldn’t calm down for a while. I’ve had such moments lately, though not this bad. I’m assuming they are good old-fashioned panic attacks. My babies died. Now my husband is sick. I’m trying to breathe and take it one day at a time, but every now and then perhaps my subconscious feels inclined to point out that something is terribly wrong here.