Baby loss, mental health and me.

This past week has been baby loss awareness week and Tuesday was World Mental Health day. It was also the week when I had confirmation that I have mild generalised anxiety disorder (GAD) and began cognitive behaviour therapy to treat it. In addition, yesterday marks 2 years since my first embryo was implanted into my womb. In light of that it seems an appropriate time to write a post about how baby loss and mental health affects me in my day to day living.

It is a known fact to readers of this blog that I have had 2 miscarriages and am no stranger to baby loss. I actually consider myself to have lost 8 babies. When our embryos were created we had 8 little blobs in the freezer that each contained some of my genetic information and some of Neil's. We had 8 potential babies. We have now lost all 8 of those potential babies through various events. The first 2 were lost because they failed the genetic tests all our embryos were subjected to. They were abnormal due to my balanced chromosome translocation and did not have the right genetic material to be viable. We instructed the clinic to let them perish. The next potential baby was the embryo that was implanted into my womb 2 years ago yesterday. Despite promising signs during the 2 week wait the pregnancy test taken at the end of that wait was negative; baby had failed to implant. The next loss was the most challenging both physically and mentally. Two weeks after implantation the obligatory pregnancy test was positive. I was pregnant for the first time ever in my life. The story is recorded in previous posts in this blog so I won't repeat it here but the pregnancy ended in a missed miscarriage picked up at 8 weeks. The baby had died at 6 weeks and I had a surgically managed miscarriage when I was technically 10 weeks pregnant. Baby number 5 also gave me a positive pregnancy test. This one was also not meant to be and the tests became negative within a week. It was a miscarriage before 5 weeks and is classed as a chemical pregnancy. The last three babies we lost were all lost because I had a real sense from God that enough was enough and we made the difficult decision to donate our 3 remaining embryos to medical research (thus benefiting future parents and justifying their existence) and close the door on our IVF journey.

Those are the cold hard facts of my experience with baby loss but it is not that simple. It's now well over a year since my last miscarriage and 5 months since we donated our remaining 3 embryos to medical research. I have grieved a lot. However, I continue to grieve, I think I will continue to grieve as long as I live. Grief comes in waves. But it is easier to let other things come into my life. I will never forget my 8 babies even though I never met them. The grief of baby loss and infertility is an ever present feature in my life and the intensity comes and goes. I often find myself surrounded by babies and bumps, particularly at church and sometimes the jealousy and unfairness of it all overwhelms me. I am so excited and ready for the next step of adoption but I would be made of wood if I didn't feel the sting of loss. I am slowly getting to a place where I can feel happy for other families and my grief and pain is not so visible. With God's help I am now hopeful for a future where I will be Mummy and Neil will be Daddy. Baby loss has entered my life and changed it. A lot of the change has been painful and feels negative but there have been positive changes too. I feel like I have grown in my abilities to encourage and comfort other people generally but especially people who have had experience of baby loss and/or infertility. I also feel like I am more kind, empathetic and understanding for having gone through my experiences of baby loss.

One of the seemingly negative changes that has happened due to my baby loss experiences is that my anxiety has gotten to a stage that it is now classifiable as a medical condition; generalised anxiety disorder (GAD). Growing up I was always a very anxious person and had quite a few phobias. I was terrified of dogs and being sick. The phobia of being sick took over my life as a student and developed into a fear of food. I would control what I ate and how much I ate so that I didn't ever feel full which was akin to feeling sick to me. I would avoid situations such as eating in front of others or in a restaurant.Through a combination of prayer and me working hard to change my thinking I was able to break free from both phobias and all the anxiety and panic attacks that plagued me. As I have posted here before my struggles with infertility, failed IVF and baby loss have triggered my phobia of being sick and fear of food and left me with clinical depression. On three separate occasions my depression got so bad that I deliberately cut my wrists just to get some release and as a cry for help. I have been in some dark places. I have received counselling and prayer and am now in a much better place. As well as GAD I do currently have a diagnosis of mild depression but I feel like I am in control of that. I have realised that my anxiety is taking over my life and making it quite hard to function so have started cognitive behaviour therapy for it. It is an illness that needs treating, not just the way I am.

For me GAD means I have a ball of anxiety in the pit of my stomach constantly. A lot of the time I can push it down to the bottom and function normally and people don't know that there's anything wrong. But sometimes it rises to the surface and I feel like I can't cope. I currently have panic attacks about once a fortnight and I often burst into tears without really feeling upset inside. I do have a list of recognised triggers for my panic attacks and crying episodes: being in a group of people or large crowd, being around pregnant people or young babies eating in front of people (not Neil) or out in a restaurant, feeling full, feeling sick and when my friends are talking to someone else (that is hard to admit as it makes me feel like a bad, jealous person but anxiety is irrational and distorts your thinking). Sometimes though the panic attacks and crying episodes come completely out of the blue with no obvious trigger. Also, the situations on my list of triggers do not trigger my anxiety every time I am in them although if I am feeling particularly bad I will try to avoid those things. I also often find myself going through the day with a real sense of dread and feeling like something awful is about to happen. It's not all doom and gloom and I am managing to function on a day to day basis and often feel happy and like I am enjoying life. I am so thankful that I am able to go to work and that actually work provides enough of a distraction that I often don't notice the ball of anxiety in the pit of my stomach. I have had one day recently where I burst into tears randomly at work and had to explain that no one had actually upset me it was just a symptom of my GAD. I have recently been asked to step up and teach one day a week at work and this is a challenge I am relishing and enjoying. It really helps take my mind off the anxiety but I am worried that the manager will see me crying if it happens again, think I'm not coping and take my teaching day away. That is the opposite of helpful. I'm probably worrying over nothing; that's GAD for you!

My life has been shaped by baby loss and that includes my mental health. I am now getting help for my mental health conditions and with God's help I will come out the other side a stronger, more rounded person. I hope that I can continue to help others and develop my giftings in encouragement, kindness and comfort, even from the middle of my mess.

Being Vulnerable and being kind

This is a story of my summer. It has been a time of very mixed emotions, some good, some bad; of challenges, times of rest and disappointments. I work in education so I have had the best part of 2 months on 'Summer Holiday' so this post is the story of those 2 months.

Beginning in Hope

At the end of June/beginning of July Neil and I decided to try, really try to get pregnant naturally. We had made the decision a few months earlier to stop all fertility treatments and move on to adoption as our way of trying to build our family. You can read more about that in previous blog posts. We were content and at peace with the decision we had made but we both felt called to try one last time to have our own biological child. This is far from easy for us. I suffer from extreme pain and muscle spasms/tightness during intercourse so we have found other ways to enjoy each other. It's also emotionally hard for us as it reminds us of what we have lost. But we both felt we should try. We did everything we could to help make it possible. We followed something called the sperm meets egg plan which sets out precisely when you should 'get together' for optimal conception. I took painkillers and had hot baths to relax me. We did everything right. We kept it secret, only telling one other person that we were trying. We were convinced it had worked, I even felt symptoms of early pregnancy. Our summer began in hope.

Kindness during suffering

I wasn't pregnant. I found out at the beginning of August. It was test day according to the plan. I had been at work at the care home where I used to work full time since early in the morning so I waited till later in the day to take the test. It was the day before my period was due and I felt different to how I normally do so I secretly hoped. But I think I knew really. The test was negative and about an hour later my period started. I was crushed as that all too familiar feeling of disappointment and hope floating away yet again washed over me. I also felt really sad for Neil. We really are happy that we are going to adopt but there are still things I need to work through. One of those things is the fact that I'm never going to see Neil interacting with our own newborn baby.
This disappointment and sadness came around the same time that I had watched a documentary on TV about a lady who writes encouraging letters to people going through tough, challenging times in their lives. This inspired me so much I decided to do something similar. So I put a post on some of the social media groups for people going through infertility and baby loss that I'm part of and got quite a response. Most of the people I have written to are not Christians but I prayed for them as I wrote and wrote whatever I felt they needed to hear. I have had some feedback that I wrote exactly the words that were needed at that moment. I love how God works through us even at our weakest points. I wrote a letter on the day that I had my negative test and had to really work hard to be encouraging to someone else as I was hurting. I did it though and felt God minister to me as I ministered to others through these letters.

Beginning to heal

A few days after that negative test Neil and I headed off to Cornwall for CreationFest. It's a free (just pay for camping) Christian festival. We had a week of enjoying time together as a couple and some great times with God. It was really nice to be in a place where no one knew us or what was going on with us. We could feel what we needed to feel when we needed to feel it. We did share our story with some on the prayer team and got some prayer but it was just nice to have time to talk together and with God. We sang a song through the week with the line 'my impossible, He makes possible'. I came away with a new hope that God would make my impossible possible. I will be Mummy. I don't know when or how but I know it will happen. I left that week a different person, I was still sad and struggling with disappointment but hope and peace had crept back in. I was beginning to heal.

Fellowship and vulnerability

Last weekend, as the summer holiday was coming to an end I went to a retreat day for women going through infertility, miscarriage and childlessness. It was organised by the wonderful ladies at Saltwater and Honey and was a refreshing yet difficult day. It was a day of hearing and sharing stories, of being vulnerable with each other and being brave enough to share in each other's grief. There was something very healing and refreshing about sharing your story with women with similar stories. I was able to speak to a lady who has a similar story to mine and get some perspective from a bit further along in our story. We sat in the chapel tasting the bitterness of saltwater as we grieved together and the sweetness of honey as we recognised the joys that can come during this time and I felt like I had found my people. I realised during the day that I am not as good at being vulnerable with my infertility story as I thought I was. I can write about it in graphic detail in this blog and in social media posts and emails with ease. In fact I couldn't get through this journey without this blog. But when I really think about it I very rarely sit down with anyone other than Neil and really talk about my suffering and grief. At this retreat day we were given opportunity to do this and it was very healing. We learnt about how we all carry shame and that shame can form a block in our relationship with God. Talking about our struggles and sharing our shame breaks down that block and the relationship can be rebuilt. I am not very good at that. I need to think about who I have in my life who I can have this kind of vulnerability with. I have a few people in mind but I am scared of saying too much and being rejected or not being able to be there for them. I guess I just need to start and this retreat was a start.

So that was my summer, well some of it. I spent the first part thinking I may finally be pregnant naturally and the rest of it coming to terms with the fact that I wasn't, again. Oh and I have started doing kind things, like writing letters and sending gifts and cards to others going through similar struggles. I like to think I am doing this:

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God." 2 Corinthians 1:3-4

Learning to forgive myself

I am having a tough week. The kind of week where every day throws another reason to beat yourself up at you. And it's only Tuesday. I keep making mistakes, mishearing things, misunderstanding people and letting people down. I'm having a really hard time liking myself and can't imagine why anyone would want to spend any time with me let alone like or even love me. I can't even understand why hubby, or even God would love me. I know this all sounds a bit miserable and dramatic  I'm just being real.
I can't understand why God, or anyone, would love me but I KNOW God loves me. I need to pull myself out of this low point before I get in too deep. I need to learn to forgive myself, to give myself a break. I don't really know how to do this but I have started this afternoon by listening to worship music. I also listed the things I have done wrong and asked for God's forgiveness for them. I believe God had forgiven me for those things but I am a long way off being able to forgive myself. I want to see myself as God sees me. I feel like I don't really know who I am at the moment. I don't know where my identity lies anymore. I know I am a daughter of God but I don't feel worthy just now.

Drawing a line in the sand

When you embark upon a journey you encounter landmarks along the way and collect memories. Moments you will never forget, days you will always remember and mark, memorable dates. Our infertility journey has had several such landmark days. I have created a map of our fertility journey with all the landmark days marked around the path. Most of our landmarks are related to some form of medical treatment but I have also included the days we attended our church festival, Catalyst and Rhythm of Hope, the Christian infertility retreat we attend. God has spoken to both of us at these events (and other times too) about various things to do with our fertility journey and our path to parenthood and these events have shaped our journey along this bumpy path. The day I ran 10k and raised £600 for Fertility Network UK also features on the map as it was part of my recovery from the miscarriage.

The eagle eyed amongst you will notice the last two points on the map are a decision to stop IVF and fertility treatment and move on to adoption. This is a new landmark on our journey and something I've not written about on here before. In January we went to Rhythm of Hope and were refreshed and refuelled on our journey. For me, this retreat day feels like coming up for air in the stormy sea that is infertility. God ministered hugely to both of us during this day but I had a sense of a particular message. At this point we had just had our recurrent loss tests and had 1 healthy frozen embryo left. My consultant had just started me on some medication to manage my polycystic ovarian syndrome and the plan amongst the medical professionals involved with me was to continue with this medication for a few months before going for embryo transfer number 4. The doctors were hopeful for my next transfer; Neil and I were not. During the worship at the retreat day I had a strong feeling God was telling us to draw a line in the sand. I felt called to stop all fertility treatment, donate our final healthy embryo to another couple who cannot make embryos of their own and move on to pursue adoption in order to complete our family. I shared this with Neil and with others when we got home and there followed several months of prayer and pursuing treatment for the final embryo transfer.

We were advised to continue trying towards transfer #4 as a way of testing and weighing this word from God. It was a way of seeing whether I was just thinking about stopping treatment because I was tired and fed up of being put through the wringer. I tried to go ahead with the transfer at the end of February and was told that I could not go ahead yet as the clinic needed my latest test results (which had been done by a different hospital) and it was up to me to get the results. It took me 6 weeks to get hold of the results. When the clinic did get the results there was a problem with my thyroid level which had been missed by my consultant. I then had to arrange a retest of my thyroid levels. They came back 0.25 too high. The fertility clinic wouldn't transfer an embryo at that level and that my GP would have to treat it first. My GP said my level wasn't high enough to treat. There was also more admin issues and general frustration thrown in. It all felt like pushing water uphill. It shouldn't be this hard. A chat with some dear friends confirmed what we were thinking; what I had heard/felt was from God, the time has come to draw a line in the sand and move on.

This has been a very difficult and emotional decision to make but we both have complete peace about moving on. We attended a Saying Goodbye service (memorial for babies lost at any stage) a few days after we made our decision. It was very emotional but helped us say goodbye to our lost babies as well as the idea of having a baby via IVF. We may be able to get pregnant naturally but right now that holds too much anxiety and stress for me to contemplate. We are excited about moving on to adoption.

I will be phoning the clinic this week to start the process of stopping and donating our embryo to another couple. They are unlikely to let us do this easily as their policy is only to do this when you have embryos left after successful treatment. We are so certain this is what God wants us to do we have to ask. Please, if you pray, ask God that this phone call will go in our favour. I will also go to the GP to ask about my medication for my PCOS. I may need to stay on this as it helps other symptoms as well as infertility but if my hormone levels are OK I could come off it gradually, which would be great.

So we are drawing a line in the sand and moving on.

Mother's day

Today is Mothering Sunday. A day of giving thanks for mothers and the gift of motherhood. A day for daddy to help kiddies treat mummy for the day. A day for saying thank you to your mum for everything she's done for you. It's a day for hearts to be happy.

But for me, and for so many others it's a day when my heart is heavy. So, this year, on Mothering Sunday I want to acknowledge those for whom this day is a painful reminder of what they have lost, or are yet to have.

This morning you didn't wake up to messy breakfast in bed and cute handmade cards. You didn't get treated to a lie in while hubby dealt with the kids. This morning was just another morning for you. Your heart aches for these things but years have gone by since you and hubby started trying.
You are not alone. You are a valued daughter of God and he sees your tears and knows the desires of your heart. Happy Mother's day!

This morning you didn't wake up to hear your baby crying. Instead you woke up remembering the baby you carried in your womb went straight to heaven and you never got to meet her on earth. You woke up with empty arms and a heavy heart again.
God sees you, lovely lady. He loves you and loves your baby. Your babies life matters and counts no matter when she died. Happy Mother's Day!

This morning you woke up alone, again. You didn't get to look into the eyes of the man you love, the man who would be the father of your children. You know the clock is ticking and you may never be a mother simply because you never found the right guy.
God wants you to know you are loved and valued by so many people, not least Him. But he knows the longings of your heart. He hears your cries and collects your tears. Happy Mother's Day!

This morning you didn't get to call your Mum to wish her happy mother's day. You didn't get to hug her, smell her hair as it got in your face, laugh it off when she embarrassed you in public. You didn't get to tell her you love her. You miss her no matter how long she's been gone for.
God sees your heart. He is your comfort today and everyday. He knows the emptiness you feel since you lost your Mum. Happy Mother's Day!

There are so many others who find today hard too. Single Mums, people with difficult relationships with their children/Mums, people who have had their children adopted... The list goes on. You are all valid, valued and important. Happy Mother's Day to you all!

Jesus wake up, we are going to perish in the storm

Two years ago we started out on our IVF journey. We had prayed long and hard about it and felt certain this was God's will for us.
"Then he got into the boat and his disciples followed him."

I didn't take well to the meds used to stimulate my ovaries and ended up in hospital. There were many delays and we were a good three months behind the original schedule we were given. We lost 2 embryos because they did not have the right genetic material for life. When we eventually transferred our first embryo it failed and we were faced with a negative pregnancy test. Our second embryo transfer resulted in my first ever pregnancy. Sadly baby died at 6 weeks and I had a surgically managed miscarriage at 10 weeks. After 6 months we were ready to try again. That transfer resulted in a pregnancy that only lasted a week after the positive test. It's known as a chemical pregnancy, a miscarriage before 6 weeks. 6 months after that I had tests to find out why I was losing all these babies. They didn't find anything but the doctor decided to try me on a medication for PCOS. I'm convinced God healed me of PCOS but my hormone levels show it's back. This medication gives me side effects akin to morning sickness. That brings us to now. We have one healthy embryo left. I have tried to order my medication so we can transfer in the Easter holidays so I don't have to take too much time off  work. The blood tests were not done by the IVF clinic. The IVF clinic need the results of the tests before they can send my meds. I have to get those results and can't get hold of the right person. We've missed the date for an Easter transfer. On top of all that the past few weeks have thrown evetything at us. I''ve had a problem with my tooth and now, thanks to an accident at the dentist, have a bit of metal file in my root canal. Yesterday our laptop broke and our car wouldn't start.
"Suddenly a furious storm came up on the lake, so that the waves swept over the boat."

Throughout this whole ordeal we have prayed, worshipped and sought God's will. Every step seemed a bit closer to our much desired answer to prayer, a baby in our arms. Yet God remains silent. The waves of the storms of life are crashing all around us threatening to overwhelm us but it's like Jesus is asleep.
"But Jesus was sleeping. The disciples went and woke him, saying 'Lord save us! We're going to drown!"

We have got to the point where we are struggling to have faith for our baby. We still hope that we will see the answet to our prayers and hold our baby in our arms but we can no longer believe that this next transfer will result in anything other than failure.
"He replied 'You of little faith, why are you so afraid?"

My prayer is that the storm of infertility will pass and we will hold our baby in our arms. God is good and in control. He is on the throne and his will is perfect. God works all things together for the good of those who love him. I have no idea how Jesus will calm this storm but i know he will.
"Then he got up and rebuked the winds and waves. And the storm was calm."

Floored by a high chair

We are our for lunch. My husband is placing the order and I have to find a table. Simple enough. I look around and the only unoccupied table I can see has a high chair around it. I move the high chair away, as we obviously don't need it, and sit down. Fine. Only I'm not fine. I find myself beset by a wave of emotion because we don't need a high chair. As things stand I don't know if we'll ever need a high chair as I don't know if we'll ever have a baby. It's the new year bank holiday today and I feel like I have limped through the most child, and baby, orientated time of the year. I have had some lovely times with family and really enjoyed having lots and lots of quality time with hubby. I've even enjoyed doing a couple of shifts in the learning disability care home where I used to work full time. But the whole time I have had in the back of my mind a niggling feeling that something is missing. Maybe it's because I was pregnant during the last festive season but I've really felt the pain of childlessness through the recent festivities. I was doing ok, I was starting to come out of the fog and think about going back to work tomorrow. I was doing fine till I had to move that high chair. As silly as it sounds I felt as if me moving that high chair away from our table was equivalent to me standing on a table and shouting to the whole coffee shop about our infertility and loss. Told you it was silly!

I have determined to do better at spending time with God this year and doing this infertility journey with Him in the driving seat. With that in mind I reflect on this experience praying that we will one day have need of a high chair. However I also pray that my heart will heal so that I can enjoy time together with hubby even if we don't end up with a baby. It's been 6 months since our last loss, I am surprised by how raw my feelings still are.