Wednesday 16 August 2017

8 August 2017

I saw a show at the Edinburgh Fringe on 8 August 2017, "Lou Conran: I Love Lou C". I read an article in the BBC magazine that she had written that led me to book the show.

I knew her story before she started, so I knew it was not going to be a laugh a minute show. She wove such an interesting tale of her life, without really going into her miscarriage until about halfway through; but having mentioned incidents that happened after it at the start of the show!

It was lovely. Really nice to hear her story, hear the differences, and the similarities. The best part was laughing, laughing with her.

There were some differences though. Her struggle to get pregnant at first was due to a lack of the sex. (As she put it.) The gentlemen callers who were not so gentlemanly. The almost barren ovaries. Then a surprise pregnancy with someone who she had not been with that long. (Including a story about coconut oil that it would not be possible to re-create!)

She was informed at the second anomaly scan that her baby was "incompatible with life". She said she was unable to connect it until she was told that the baby was a girl. She told of how she thought it was not serious, that it was a joke. She surrounds her life with jokes, so I think it was probably a craving for the familiar.

I think a comedy show with a story about losing your child isn't going to be a barrel of laughs, that much is clear. She put a side to the story of loss that was from someone who had always wanted children, discovered it was unlikely, come to terms with that, had a surprise pregnancy, only for it to be taken away again.

It happens so often, to so many people. It's hard to talk about. It is why I created this blog; I can't share this a thousand times verbally, but I can share it as many as a person cares to read it. I can talk about what I have written; with anyone who has read it. It's easier to share it this way, than not to share it at all.

Of course, my story is a little different to some other miscarriage stories, that makes it hard at times. How different our family plans have become. However I think that we will have a family, It is just that I am impatient for it to happen now. As Lou C found out, the later you leave it, the harder it gets!

29 July 2017

Our 1st wedding anniversary.
The due date of our first child.
Our good friends' wedding day.

Not the due date of our first child. The date we were told was the estimated delivery date of our first child. I always knew it was wrong, just like I always knew she was a girl, somehow.

When I first shared the news of my pregnancy with friends, I had a conversation with one about the due date, combined with the wedding, and what we were going to do. I said we were determined to go, but only one of us would be able to drink. (Me, that late in the game, I was planning on half a glass of champagne to celebrate!) I suggested that I might be so fed up of being pregnant by that stage that I would try to dance it out of me; I do love to dance.

We arrived in the morning, having booked into a nice hotel, (because we needed to treat ourselves on our anniversary) to find out that not only was our room ready early, but we had been given an upgrade! We hadn't even told them it was our anniversary! We had dressed for the occasion at home that morning, before the drive down, and I had put on the war-paint in the car, with some touch-ups planned wherever I could find an empty toilet. Thankfully, we were able to get into the room (instead of leaving our bags until whatever time we got back that night) and relax briefly before heading on. We walked through the town, our disorganisation meant that this was necessary, as we needed to buy both lunch, and a wedding card. We arrived at a pub to meet with some others, including the groom, before making our way to the venue for the ceremony.

Throughout the day I was able to enjoy myself, and enjoy the company that we were in. We had to stand for the ceremony, as there were limited seats with it being outdoors (Edinburgh's botanic gardens), and we had to walk from one side of the gardens to the other after the meal for the evening reception. The walk was nice, I got chatting to a friend who had read some of what I had written so far, and I explained a bit more. However by the time we got to the other side, my feet were killing me! So I didn't start dancing straight away. I think both my husband and I drank a little bit more than either of us planned to. We got up to dance at one stage, and instructions for the dance were called (Scottish Ceilidh) but apparently he had gone a bit deaf, so we didn't do so well. Then, when the couple next to us accidentally elbowed me in the head (I think they experienced a similar temporary deafness, as everyone else seemed to know what they were doing!) I tried to keep going but walked off the dance floor shortly afterwards, I think entirely a combination of not being able(/supposed) to lead my husband, and him not knowing the dance, and a memory of that conversation about dancing the baby out.

I stuck it out a little while longer, but I think I had reached saturation point by that stage. We said our goodbyes to the bride and groom, who looked suitably exhausted and happy, and a few others who were nearby. As we made our way down the stairs towards the doors, I burst into tears.

I did not let it ruin our anniversary, and it did not overshadow it, however once the dancing started, it did start to a little bit. I can honestly say though, that I had a good day, and it was the week that followed that was harder. I'm very glad I had booked that time off work.

It was much much later in the year however, that I realised something else: My beautiful patterned umbrella, the kind with the curved handle that I could hang off my arm, I last saw that at the bottom of the stairs by the doors. I'll replace it, eventually...

15 June 2017

After learning of the problems our baby had, the developments that weren't, there was a time when I found it difficult to grieve, difficult to think of the baby I had dreamt of, because this baby did not fit into that dream.

After learning that there were chromosomal abnormalities, it became harder still to grieve for what "might have been", as the logical part of my brain knew that it never would have.

After learning that the chromosomal abnormalities were as a result of a balanced translocation, and learning that phrase, and what it really meant? Well, that actually helped me to grieve properly again. I'm not sure how or why, but it helped me to know that it wasn't random, and our child was that way for a reason. On the good days, I can think about our baby, and hope for the future, as the post-mortem helped us to find out that there was a problem, and pointed us in the direction of ways around that problem. Our child helped our future children live.

For those who have a miscarriage and never find out why, the grief will always be for what might have been. The life that could have been lived. For those who, like me, have a miscarriage and learn why, the grief changes, and although I still consider what might have been, it's now with a caveat, if it had been a different sperm. However, if that had been the case, everything would have been different, and for me, there are too many possibilities to imagine. It's like the butterfly effect, (the chaos theory, not the movie I have never seen) changing one thing changes many things, and I have to trust that this is the best possibility for me. This is true for big things, and little things.

Like: I never regret being late for work, because if I had left earlier, I might have been in the way of a car whose driver was not looking where they were going, and I would have been dead. I never regret leaving a party late, because if I had left earlier, well, number one, I would have missed the craic, and number two, I might have been in the way of a car whose driver was not looking where they were going, and I would have been dead. I like to believe that no matter how rubbish things are, for me to even consider an alternate reality, means considering one where I, or worse, those who I love, are dead, where in the current reality they are not. Perhaps it means that in my reality everyone lives for as long as they possibly can? Or perhaps it means that everyone I love lives for as long as they can in proportion to how much pain they can bear. I'd like to think that is why our baby did not survive; the pain would have been too much, and although we suffered pain, we understand why.

I will continue to have moments of "what might have been" in days when I'm in work, and would have been on maternity leave; in days when I'm visiting family, and would have been bringing a cousin for our nieces and nephew; on significant events, when I will think about the missing presence, and what that would have added.

Wednesday 2 August 2017

6 June 2017: The significance of dates

Time flies when you're having fun.
Time marches on.
Time is a healer.
How many sayings about time can I give?
I'm pretty sure there are a few out there about how time does not heal, it just helps us to live with the pain. Then there are those who say that grief is a process, stages to go through; or that it takes a year to get over losing someone, getting past all those significant dates.

After my first scan, I had other dates set up, another midwife appointment, the next scan, the due date. Those dates were firm in my head, I was excited about them, so I wasn't going to miss the appointments, or forget that date - although I never thought I would give birth on my due date.

Now the dates that are imprinted in my memory are 1 February 2017, the date I found out there was no heartbeat; 8 February 2017, the date I gave birth; 1 March 2017, the date our child was cremated in a service organised by the hospital.

As those dates passed, so did the others, I had a midwife appointment on Valentine's Day, of course, the hospital staff arranged the cancellation of that for me, so I didn't have the call to ask where I was, but the time passed and I thought about what could have been. I had the 20 week scan arranged for 14 March 2017, that one passed too, and I tried to imagine what size I would have been, tried to imagine people knowing that I was pregnant from looking at me, an experience I hadn't achieved. I had the post mortem results meeting on 15 March 2017 instead. We actually didn't learn a lot at that appointment, all the results weren't back yet, we learnt that our baby had a cleft palate, a missing eye, and a malformed left side of the face. Dr. Gordon explained what they were looking for as they continued looking at what cells they had kept, what had been found out, and what we might expect. He said that he could go over the results by phone, or we could have a further appointment, and noted that we may need some blood tests if they found any anomalies.

I kept phoning, asking if the results were back, and managed to get a call back from Dr Gordon, who explained the first part of the bad news, that there was some extra chromosome material from 13, and that we both needed to have blood tests to figure out if either of us passed it down. We went in for those on 7 April 2017. On 19 April 2017 we went in to be given more devastating news. Dr. Gordon explained that he didn't have a lot of information, as he was not a geneticist, but gave us the basics of our lemonade, beer, and shandy predicament.

After that, we had to get used to our new reality. The reality that our chances of a healthy child were 50/50 (at a basic level). The reality that it wasn't advisable to try naturally until we had more information from an expert. The reality that, if we had an accidental pregnancy, it was a lot riskier.

There are also the days that seem insignificant, the innocuous days, the ones that take you by surprise when they hit you square in the chest. I have a lot of car journeys to meetings for work; journeys with a range of people, some who I know better than others. I had a journey one day, I was talking with a colleague who asked how long I was married. I said we were coming up for one year, and that we were going to wedding that day; when I said I was "looking forward to it" I felt a horrible feeling in the pit of my stomach. There is a part of me that is not looking forward to that day, but I know I can't let it ruin our first anniversary. There are still some dates that are to pass: The first due date they gave us at the midwife appointment, and based on my last period, which was my mother-in-law's birthday; The second due date they gave us at our 12 week/dating scan, and based on the size of the baby, which was our wedding anniversary; The third date is one I picked myself, before I knew it was never to be, a date that actually holds no significance, but was the one I felt was most likely to be the birthday.

Before we learnt that we had the balanced translocation, I had hoped that I would be pregnant again by the due date. It was something that was offered to us as comfort by some... "If we hadn't lost x, we would never have had y."

I think I will find 2 August 2017 the hardest date of all.

2 June 2017

I had a difficult week. I had a message from a friend, asking if I was free for a phone call on Monday. I wasn't, but I was on Tuesday.

Our conversation started with her asking me how I was, and I started off by giving the polite response; I forgot who I was talking to, I knew she actually wanted to know. So I revised my answer, I was mostly the polite response, but with some days a little harder. I explained what information we had at that point, and told her we were looking at IVF. We had a bit of a general chat, then she got round to why she was really calling! I think I had sort of guessed as I was explaining the technical side of a balanced translocation, but when she started talking about normal life stuff, I thought maybe she was just calling for a catch up! In the end, I excitedly announced that she was pregnant, rather than her telling me. I was really happy for her, and really happy to hear the news. She and her husband married the year before us, in May; it was almost expected. I coped very well with the news, but of course I was a little sad for us.

Three days later, I had the day off work to teach aerial. Except the booking was never confirmed and in the end didn't take place, but I kept my day off as we were having a fire-pit party the following day (otherwise known as a BBQ, for people who have built a campfire in their back garden.) I was up and about, doing bits and pieces, and lifted my phone, to see a notification of a number of messages in a conversation, the first one I read saying "congratulations, when is baby due?" So even if my other friend had chosen to sugar coat the news, or dilute it somehow, I found out through reading the response of our other friend.

When I think about it, there is no way I would want anyone to dilute their own happiness to prevent me from feeling bad! My friend earlier in the week had been nervous about telling me, and I told her not to be silly, as I could only wish happiness on my friends.

With all the love in the world for my friends, and their wonderful news; it was a stark reminder of how much more difficult it had become for my husband and I to share the same news.

I am waiting to be able to work towards being able to share the same news, however I'm also aware that it might not happen for us. I'm still able to find joy in something every day, and I am able to hope for the future.

6-10 February 2017

We had a holiday booked, to Venice.

When Lee and I got married, we took a week-long honeymoon afterwards. (We didn't have a lot of annual leave to take.) Lee had time off booked in February, and the plan was to book either a snowboarding trip, if I wasn't pregnant; or a babymoon, if I was! We were looking forward to our second honeymoon. Once we found out I was pregnant, it became about planning where I could enjoy myself and be able to walk around without exhausting myself. Venice was chosen for the romance, and if it was to be a second honeymoon without booze, we could at least have the romance! We found a last minute deal, flights and hotel combo, not too expensive, and the hotel looked lovely. We hadn't made any real plans of what we were planning to do while in Venice, but were really looking forward to the break nonetheless.

The day after we paid for the trip, we bought some single trip travel insurance, through The Post Office. We chose an option that didn't carry an excess.

That day in the hospital, the first day of February, was five days before we were due to leave for Venice. It was one of the first logical things that crossed my mind after we'd had the news. Not disappointed that we couldn't go, but anticipating another thing to have to deal with. We explained this to the hospital staff, and they said that they would have a letter ready on Friday when we were back. They explained that the admin staff who had access to the official paperwork had gone home for the day. All I could think was that that was just the start of it...

My husband contacted the insurance company to inform them that we would have to cancel, they told him that he would have to contact the holiday company to request cancellation and wait for a compensation offer from them before claiming on the insurance. Unsurprisingly, we were offered zero funds back, as it was so short notice. We weren't offered that until the weekend, so weren't able to submit the insurance claim until the Monday.

When we submitted the insurance claim, it was to a claims company that was somewhat separate to the insurance company; which I found odd. They sent various pieces of paperwork to be completed, including a medical certificate to be completed by my GP. It took me a while to get round to going in to request the completion of it. When I brought it in to the receptionist, and explained the circumstances, her face changed. She didn't rearrange her expression to pity that was insincere, she actually moved from confusion (when I was talking about an insurance form) to shock (when I said I had been admitted to hospital for the management of the miscarriage) to sincere pity, but I felt supported by it. I've never before wanted to be pitied, and I still don't, but there are times when it has a place.

Once the doctor had completed the certificate, and the fee had been paid, we bought a snazzy printer to scan everything we were sending before putting it in the post. About a week or two later we received notification that we were getting a full refund.

We had discussed it, the fight for our money back. We bought insurance for the just in case, to make sure we didn't lose more money for any reason. We had considered various possibilities: a little bit of money; even less than a little bit of money; and no money. We hadn't considered a full refund, which if you think about it is a pretty sad state of affairs. However, what we had agreed was that we would consider the amount offered versus the amount we were going to lose out on, then decide if it would be worth the fight. I don't think either of us had much energy for anything short of them not giving us any money.

The letter informing us even said they were sorry for the reason we had to cancel. It was probably a standard "cancellation through illness" letter, but it was nice nonetheless. I think both of us saw this as positive, even though we shouldn't have considered anything other than a full refund as acceptable, in the circumstances.

22 April 2017

I am so fucking terrified. My husband and I conceived so easily. Yet we conceived a child that could not survive. We created life, and suffering. We have since discovered that he is made up of lemonade, beer, and shandies, and I just have beer and lemonade. His two shandies have the same amount of beer and lemonade as one of each, but when we got one lemonade and one shandy from him, we had too much lemonade.

When life hands you lemons??? Not sure that saying applies...

We could conceive a child with two lemonades and two beers, one from each of us, but it seems there's only a 50% chance of that... until we see the geneticist; who might explain that it's more complicated than that, and it's actually much higher, but we just beat the odds with our first pregnancy. Perhaps I'm being too pessimistic, we just have to wait to see the geneticist to learn those odds. Trouble is, I've never been one for betting too much.

The day I was born, on the 4th of the 4th, at 7am, weighing 7Ib; my dad went to the bookies and put £4 on number 4, and £7 on number 7. He lost. I've never been one for betting too much.

My mother informed me that when she heard that my husband's birthday was the anniversary of her father's death, she held a fear for us that I would have a miscarriage. I've always liked the numbers 4 and 7, despite their lack of luck. I place significance in the patterns of numbers, as, apparently, does my mother. I suppose she is a maths teacher...

My husband had suggested that if we have one successful round of IVF, we then potentially try to have another naturally. Somehow it will be easier to cope with a loss if we already have a child. What he doesn't understand is that it is not just a loss, it is physical pain, physical reminders, infections, more infections as side effects of the drugs used to treat the first ones, a body that is trying to get back to normal after 3 months of growing a human, or more, next time.

I'm terrified of creating life, and with it, another world of pain. I've never been one for betting too much, but I think I'm going to have to bet on IVF, unless the odds are much lower than I think. Much lower. Sometimes bets are better than nothing. Hope is better than fear.

I'm willing to work with bets, but I'm not yet sure if I'm prepared for the pain of the consequences...