Scared

Tomorrow morning, I’m having a scan to see if our baby girl has died yet. Last Wednesday, her heartbeat was weak and I think we’re expecting she has already passed away. Six weeks ago, we were optimistic that this pregnancy could end well. We went for my 12 week scan with the same doctor who did the scans towards the end of my pregnancy with Alice. She’s a great lady and excellent at her job. When she told us there was fluid around this baby, I burst into tears. I had hoped so much it would be ok. She needed to do an internal scan to try to find out as much as she could and it was after this that she told us she suspected a chromosomal issue and she thought it could be Edward’s syndrome. We were ushered into a private room and if we’d been in any doubt, this confirmed how potentially grave the situation was, especially when soon after the screening coordinator came to see us before we were rushed in to see a consultant.
Because of the position of the placenta, they couldn’t do a CVS to diagnose, so we arranged to go back in two weeks. I can hardly remember all the weeks of waiting. I tried to continue working but found I couldn’t concentrate. Sleeping has become more difficult, and I tend to nap as much as possible during the days. At the next scan, they still couldn’t do the CVS but the situation looked worse than it had. We were told our baby had hydrops which had progressed, there were problems with her heart and that she may have spina bifida. We met the screening coordinator and consultant again and talked through options. I could go to Sheffield where they could do the test vaginally, or wait another ten days when they could do an amniocentesis. Because the prognosis looked so bad, I could terminate the pregnancy if I wanted. We decided to wait for the amniocentesis.
That was a procedure I’d rather not experience again. The needle going into my stomach didn’t hurt but once it was inside, it was very uncomfortable as the consultant tried to find an area to take some fluid from. My womb contracted to try to reject the needle. I became very hot and panicky. She had told us sometimes it didn’t work on the first go. Did I want her to try again? My body was saying no way, let’s get out of here now, but my mind told me it’d be better if it could be done rather than having to go back another day. Thankfully, it wasn’t anywhere near as uncomfortable the second time and she was able to complete the procedure.
Another anxious wait from Monday until we got the phone call on Thursday, which told us our baby is a girl, and she has got Edward’s syndrome, or Trisomy 18. This means she has three copies of chromosome 18, one extra. Although we were expecting this news, it was still devastating and I spent a lot of the afternoon in bed. Many babies with this condition die in the womb and the average life expectancy for those who make it through birth is a mere fortnight.
We agreed we wanted to continue with the pregnancy. After losing Alice, we knew how precious those minutes we had with her were and wanted the chance to spend some time with this baby if possible. Sadly, it doesn’t look like it will be after the scan last week, and I am dreading tomorrow and the coming week. Because I’m so far on, I will have to go in and have labour induced.
I’ve lost three babies to miscarriages in the first trimester, lost Alice and am going to lose this baby too. As grateful as I am to have Charlotte, this doesn’t and cannot erase the pain of loss. I want nothing more than to have another baby, yet it seems unattainable. The placenta failed with Alice. This is a chromosomal abnormality. There’s more chance of it happening with advanced maternal age but even so, I think there was only about a 1 in 180 chance of it happening. Once again, something quite uncommon, something else that is apparently unlikely to happen more than once. And the placenta is fine this time. Whether that’s due to the fragmin I’ve been injecting every day since December or not, there’s no real way of knowing.
Suffice to say, I’m devastated, angry, bitter, and full of questions that will probably never be answered.

After the anniversary…

I wasn’t sure how I’d feel after Alice’s anniversary. I didn’t think I would suddenly feel “better” but I wondered if I might feel any different, after a whole year had passed since losing her. Well, I do and I don’t. We are now living through the second of everything since losing her. Second November, second run-up to Christmas, second lots of family birthdays, including what should have been Pete’s birthday – another difficult anniversary.

In some ways it’s hard, because I think there’s a general feeling that after a year people should start to “move on” and focus less on their loss. Nobody has said this to me, but I am sure this is what a lot of people believe. On the whole, people mention Alice less often. Some days, I realise I haven’t thought about her very much, and that is hard as it throws up feelings of guilt. She’s always in my heart and I never forget about her, just I don’t consciously think about her all the time. I figure this is normal, because I don’t think about Charlotte all the time, or often I’ll think about practicalities like I need to wash her Rainbows top or pay for her Judo lessons or something. I don’t have things like that to think about with Alice. Life can be busy and we don’t spend every minute of every day thinking about our loved ones, right?

One thing I’ve learnt about myself through my bereavement counselling is how I compare myself to others, so I’ll constantly judge myself against other bereaved parents and wonder if I’m “normal”, if I’m grieving “correctly” or if there’s something “wrong” with me. I know it’s all bollocks, but I can’t help it. Having the awareness that I do this is helpful as I can cut myself some slack.

I think many people haven’t got a clue about baby loss, just like I have no idea about many experiences. If you’re reading this, you probably either have some experience of it yourself directly or indirectly so you’re interested in reading my thoughts, or you’re reading because you know me. Either way, I imagine that you’re aware to some extent of how losing a baby affects a family. But you can’t really truly know, unless you’ve seen it up close and personal. I thought I was understanding, because I’d had three early miscarriages and I knew people who’d lost babies later on in pregnancy, but I didn’t really have a clue until it happened. What I know now is, time is almost irrelevant. True, those initial days and weeks are the most raw and traumatic, and life returns eventually to some kind of normality, but the gap is always going to be there. People want it to fill up, they don’t want to think that it’s always going to be hard for us, but it won’t fill and it will always be hard. There are people I won’t discuss it with because I don’t want to hear how it’ll get better, how time will make it easier. I can’t be bothered to listen to them trying to make themselves and me feel better.

Accepting that it will always be hard is not to say we can’t and don’t enjoy life. I think in some ways it helps us to enjoy good days all the more. It certainly makes me look at Charlotte with even more wonder than I did before. I feel incredibly lucky to have Chris by my side, after all we have been through. And I appreciate my wider family and friends more.

One thing I find difficult is that I think some people feel that because Alice was born so early (25 weeks), the loss maybe isn’t as great as if she’d been full-term. Well, I can’t compare – but why should I have to? Why do people feel the need to think like that? Plenty of babies born prematurely do survive and years later nobody thinks they’re any less of a person because they were born early. We held our daughter, interacted with her, and were there her whole life. I find the idea that it would have been “worse” had I gone full-term upsetting, to be honest, even though it might be true. I think there’s no point thinking that way, although it can be hard not to.

So, how are things different now? I’m not really sure. I know I’m looking forward to Christmas more this year. Last year passed in a blur. Neither Chris nor I can remember very much about it. When the decorations first started appearing in the shops and garden centres this year, it hit me quite hard and I felt resentful that another Christmas was approaching without Alice. I found it difficult to see babies for a while and part of me wanted to tell parents in shops to stop flaunting their baby in my face, which of course I know is ridiculous. Now I am trying to focus on making sure Charlotte enjoys Christmas and hoping for a peaceful time for us all. It feels like another milestone to get through, but so far, I’m not dreading it. I feel like I’m never far from something triggering off sadness and often with it, anger and irrationality. I can’t predict when that might happen but I have to just try to accept it and know that although I’m being irrational, it’s okay for me to feel like that and it doesn’t make me a bad person.

The urge to tell everyone I meet about Alice has faded and I no longer blurt it out wherever I go. I still dread being asked how many children I have because at times I just don’t want to have to deal with a stranger’s discomfort on top of my own emotions. Other times, I wish I had a sign on me saying “My baby died so excuse me if I don’t coo at yours but I’m really not in the mood to look at your beautiful baby right now.”

For a long time I couldn’t see that anything positive had happened to me this last year, but now I see that it has. I’ve made some great friends as a result of losing Alice, and some existing friendships/acquaintanceships have blossomed. Sure, I’d rather not have met these people under such circumstances and I’d rather have Alice here, but this is just the way it is, and I’m thankful to be able to call some great people friends. Some friendships have dwindled as I think some people really don’t know how to deal with me, and that’s sad but it’s inevitable, I think.

Also, this last year, I have found a great deal of comfort in developing my knitting skills. It might sound trivial but it has really given me a lot of peace. I’ve read articles on how crafts can be theraputic and calming, which makes sense. I’ve made cardigans and hats and angel gowns for babies. I made a beautiful little blanket to cover Alice. I’ve made Charlotte cardigans and toys, and cardigans and toys for friend’s children. I’ve taught myself how to knit on circular needles and double pointed needles and I’ve made two pairs of socks; I’ve made slippers, hats, gloves, Christmas tree baubles. I’ve learnt how to do entrelac and improved vastly at fair isle knitting. I’ve found patterns that looked intimidating previously are not at all once I’ve put in the effort. I’ve become far more confident at reading patterns and I’ve learnt what my strengths and weaknesses are. For me, this is all really important and I honestly think it helps to keep me sane.

Also, recently I decided to begin an online short story writing course which is geared towards writing for magazines, something I’d love to do. I’ve always enjoyed writing and loved writing stories when I was young, but not kept up with it consistently and become lacking in confidence as well as lazy about it, so the course is giving me lots of motivation. I think the fact I’ve started this is very positive. I also made the decision to not go back to do my voluntary work with ChildLine, as I felt that it added pressure I don’t need at the moment.

I’ve also become more politically active, joining the Labour Party, signing and sharing petitions on a range of issues that are important to me, and I do more to try to help those less fortunate now, which isn’t me trying to show off because I don’t do a lot but I do what I can, which is all anyone can do.

So, I guess I’m saying regardless of how we feel about it, life goes on, and aren’t we lucky that it does for us? I hope I can look back and think that I’ve lived a worthwhile and rewarding life, and lived in ways both my daughters would respect and admire.

Alice’s first birthday

Alice would have been one on 11th October. Actually, she shouldn’t have arrived until January but, as things stand, if she’d survived being born so early, then we would have just celebrated her first birthday with her. It’s hard to believe that it’s over a year since I gave birth to her. For me, the weeks before the 11th were the hardest to get through. The week before, I kept thinking what we were doing a year ago. I felt stressed and anxious, and I was sensitive and irritable. For that, I apologise to my nearest and dearest, who bore the brunt of my moods. I felt pressure, but it wasn’t from anyone or anywhere in particular. People asked what we would be doing, and we weren’t sure and didn’t want to make plans in case we felt unable to carry them out on the day.

We decided about a week before that we just wanted a quiet weekend with me, Chris and Charlotte. Last year on this weekend, we’d booked to go and stay in a B&B in Bridlington as we thought it might be the last chance we had to get away for a while. Our scan on 10th October put paid to those plans, and since then Charlotte said more than once, “Two bad things happened – Alice died, and we didn’t go to Bridlington.” It felt fitting to go there a year on, so we booked a room for two nights and went over on the Friday evening.

Saturday was a glorious day. Really warm for the time of year. We went for a wander on the beach after breakfast, and Chris decided to write Alice’s name in the sand. He and Charlotte did that and we took photos from above afterwards. It felt really special.

Alice-sand

We had lunch in a cafe and wandered around a few shops before another break for coffee/babyccino. Charlotte wanted to buy a rubber duck to take to Alice’s grave, so we found one of those and also bought cards for Alice.

At teatime, we went to the Bridlington Spa to see Seussical the Musical. It was good fun and we all enjoyed it. We didn’t get back to our B&B until nearly seven and had a quiet evening in our room.

Sunday arrived and I found I didn’t feel as wretched as I’d anticipated. We went back to the beach. The day was crisp and windy though still sunny. It felt right that it wasn’t as perfect as the previous day. I felt quite strong, somehow. I don’t normally use that word to describe myself and I certainly would never use its opposite, but it’s the only word I can think of to convey how I felt. Chris and Charlotte went right up to the sea whilst I sat on some steps and just thought about Alice, and about Charlotte and Chris too. We picked some stones to decorate later.

It felt so strange thinking a whole year had passed, yet it felt like no time at all in some ways. After an hour or so, we went for a quick wander along the seafront then went for ice cream in a cafe before setting off for home.

At some point, I took this picture of Charlotte.

CEH

In the afternoon, we went to the cemetery and took our rubber duck, flowers, our stones and cards to the cemetery. It was lovely to see some flowers had already been taken, plus a stone my sister had decorated.

cardandduck cards flowers

When we got home Charlotte and I decorated a cake which we lit after our meal.

cake cakelit

We also lit candles and listened to the music from Alice’s funeral. This was the most moving part of the day for me The first piece of music, a lullaby, really hit me as I remembered walking into the Minster on the day of the funeral and I particularly thought about Chris carrying Alice’s tiny coffin. However, listening to the music was a joyous experience.

candle

After the weekend, I didn’t feel any “better” but I did feel some relief that we’d got past such a big milestone. We were very pleased that people thought about Alice and thought about us, and it was lovely to receive cards, chocolates, flowers and messages from some lovely people. It is incredible that someone so tiny, who lived for such a short time, continues to impact on not only our lives but others’ too. Our love for Alice will never fade and there will always be a gap in our lives and our home where she should be.

Father’s Day

As Father’s Day is this Sunday, my thoughts turn to my husband and all the other dads who have lost children, and I can’t help but think about the differences society seems to have towards grieving mums and grieving dads. A few months ago, I wrote about Mother’s Day in the days leading up to it. I remember seeing several posts on social media offering support to mums in my position in the days before that Sunday. So far this week, I’ve seen two links to articles about Father’s Day. It seems strange to me that men don’t appear to get the same consideration as us women. Even though it’s 2015, and things have definitely moved on from the days when parents who lost babies weren’t even able to see their precious child, there still seems to be the feeling that men have to be strong, have to “look after” their wives and girlfriends. Frankly, it’s bull.
I am very pleased that our local Sands group in Hull has arranged a memorial service on Sunday; organised by a lovely lady who does it every year because she knows the dads are often overlooked.
I feel angry that we’re going to that service, though. This afternoon, I walked past a woman carrying a baby who looked so cuddly. It took my breath away for a moment. Later, I saw my husband holding our friend’s baby, and I was reminded again of how brilliant he is with babies, how naturally he holds them and comforts them, and my thoughts turned to what has been ripped away from us. Alice should be here. She’s never coming back, and we have to live with that knowledge.
My husband is a wonderful man, liked and loved by many. He’s a fantastic father and his bond with Charlotte is almost tangible. I feel so sad that he can’t father Alice in the same way. I also feel angry that he had to endure losing her just seven months after his beloved brother died. He is an extremely good man without a bad bone in his body. He deserves only good things. But life isn’t fair and doesn’t reward goodness. Things just happen, and we have to deal with it. My husband has been through too much. On top of all this he has to deal with my grief; my mood swings, my fear, my guilt, my anger, my insecurity. I am very fortunate to have him by my side.
Sunday will pass, and it will be comforting for us to spend part of the day with people suffering similarly. We are a strong family who share a great deal of love. I’ll do my best to help my husband through a potentially difficult day, but it’s just never going to be enough.

Mother’s Day after baby loss

This Sunday is Mother’s Day. For many, this is a happy day where presents are bought, cards are made by young children, Sunday lunches or afternoon teas are booked weeks in advance and a jolly get-together is had by all. The biggest concern for many will be whether to get Mum smellies or that new CD she keeps dropping hints about. Some may have the dilemma of who to visit first, long journeys to make or difficult seating plans due to tricky relationships.

However, this can be a sad day for people who have lost their mothers or grandmothers; a reminder of a special person who is no longer there. It is also sad for those women who desperately want to be mothers but are not, and those who know they will never be due to circumstances beyond their control. Or for those women, like myself, who have a child that has died.

However grateful I am for our five-year-old daughter, Charlotte, this doesn’t alter the fact that our daughter Alice lived only for a few hours. We had to bury our baby in October. I also suffered three miscarriages, so having been through five pregnancies, we have one living child.

For some, it seems that it is difficult to understand the mourning of a baby, and particularly a miscarried one. Some wonder how you can miss a person who was never here, or was here for such a short time you didn’t get to know them. Well, the best way I can try to explain this is to paraphrase a quote I saw which said that when you lose a baby, you don’t just lose a baby; you lose the ten-year-old they would have been, the 18-year-old, the 30-year-old they would have become and so on. Just think about that for a second.

Thankfully, most people do realise that losing a child is the worst thing most parents will go through. Losing Alice is the worst thing that has happened to me, and will surely affect me for the rest of my life. I’m not saying this to garner sympathy but because I want people to try to understand; to realise that although one day I might be chatty and cheerful, the next I might be in a dark place, feeling sorrowful and bereft.

So how do I feel about this coming Mother’s Day? Well, I am lucky enough to have Charlotte, my mum and my mother-in-law. I am sure Charlotte will help me get through the day. I’m not even dreading it that much, but I think I will feel sadness and anger. When I hug Charlotte, I will be aware that Alice should be with us, gurgling and smiling, laughing and crying; kicking her little feet and looking up at me, trusting me to feed her, to soothe her, to protect her. My arms should be full. I will be aware that as a mother, through no fault of my own, I could not protect her; I failed. That is what it boils down to.

In a way, the Mother’s Day adverts wash over me. I’ve become used to dealing with things that could hurt me over the years. I’m more sensitive now but also less. It’s harder to hurt me, yet a careless remark or failure to ask how I am on a particular day can have me fuming.

Please don’t forget friends whose babies have died. I know it’s hard to think about, but letting us know you remember can bring a lot of comfort. Don’t be afraid to use our babies’ names. Acknowledge we are mothers, even if you can’t see our child.

If you’re not sure what to do, ask your friend. Don’t just back off and assume she will ask if she needs help. She might, but it’s unlikely.

This will go a long way to helping us through what could be an awful day. And the same goes for friends who you know miss their mothers or grandmothers. Let’s support each other. And where we can, let’s cherish our mothers and children.