Tag Archives: Support for grieving parents

Moving on…

Well, I must admit that I am pretty shocked that it was 3 moths ago that I posted anything related to my tragedy. The last 3 months (or so) I have been visiting Idrys’ resting place at least twice a week. It is about 25-mins away from where I live and I would spend at least 20 minutes or so when I am there. I love going there on my own. I have no idea why I go so often. But I do know that it is the only place I could go to and forget about all my troubles but the heartache doesn’t seem to get any lesser. The cemetery is my solace. I feel trapped in my world right now – a world where everything feels like they are against me and my family. A world where everything I touched turn into misery. I have not been myself since this all happened – can anyone blame me? Which means I have not been able to go back to work for the longest time. Ironically in a couple of months time I will be leaving the job that I could not (or do not have the strength) to go back to.

I’ve been dealing with my loss the last few months. Up until recently, when I started my therapy that is, I start to realise the amount of loss I have had to deal with since I was a teenager. They’re not just the loss of lives but also materials, jobs, relationships etc. Every loss I had experience had to happen in the most outrageous or tragic way with no explanation as to how I was at fault or to be blame for it. When I loss my dad at the age of 16 and losing my grandma in the same year, I had no support. No counselling, therapy etc. I was expected to ‘deal with it’. The same year I had to sit for my GCSEs and imagine how difficult and traumatising it was for me.I felt like it was a ‘punishment’ for me for being a naughty child (but was I even THAT naughty?).  I remembered one of my proudest moment living on this earth was my grandma told me once that my Dad had visited here and told her how proud he was of me – something he never said to me directly. But that was ok. It was enough to make me feel accepted and alive. Then he left me and my family. For good. Before I could get over that grief, my grandma passes away. Since then I just kept on going – probably that was the way my body could deal with that kind of shock and coping with a loss.

When my husband lost his job, it did not happen in a small scale. No. It had to happen again in the most brutal and tragic (plus humiliating) way. 20 years worth of hard work, sweat and determination went down the pan overnight because on one person’s reckless behaviour. The past 3 to 4 years we’ve been struggling as my husband could not find a job nor has he been bringing in any income. I never imagined life would get so difficult. But then tragedy strikes again with Idrys. This is the point that I start to question what was it that I had done so wrong that the universe is ‘punishing’ me and my family? To let us experience the heartbreak and trauma with Idrys was just ‘an icing on the cake’ which seriously have pushed me to my limits. I have nothing left in me to fight for anything. I am broken. Extremely broken. No amount of AD can help make me feel better on what happened. So universe, if you’re listening, please I beg you, as a mother who still has her two incredibly lively and energetic children, stop all the negative energy you’re sending to me and my family, look after my baby Idrys and just please give us back the life we used to have.

Mommy is broken my dear Idrys. You will forever be in my heart.

 

x

 

3 weeks on…edi

No one can tell you how to grieve for the loss of your baby. No can even tell you not to cry over the loss of your baby. But that’s exactly what happened to me. I was constantly told by an elderly relative to stop crying over the loss of my son. Even at the cemetary on the day we buried baby Idrys, she was there telling me not to cry. It has happened so often that I had to not cry and when I don’t cry, she then assumes I’m ok. I wish I could just scream at her and say “I am not ok!”. How can I be ok?? It’s only been 3 weeks since I said goodbye forever to my little boy. Is 3 weeks to soon to be ok? Who knows. There isn’t a set time in a grieving rule book to say you should be ok by a certain number of weeks, months or year….My husband seems ok but I know he’s not. But the fact that he doesn’t cry as much and seems ok makes me angry and frustrated. I don’t want to see him ok because that makes me feel like I need to move on and be ok too. And I do dread the day I am actually gonna be ok because I’m petrified that would make me forget baby Idrys and the whole experience. Why would I want to remember my dreaaful experience you may ask? Because to me that experience validated Idrys’s existence in this world albeit for a very short time.

The last 8 weeks had been torture. Having to pit on a brave face and not able to tell people I was pregnant and after losing him, not able to speak about our experience to most people as I would break down everytime I do.

My husband and I went out last night to see a movie. We figured that would take our mind off things for a couple of hours. BUT, everytime I laugh or enjoyed myself watching the movie, I felt the pain and heartbreak creeping back in. I felt sick for not feeling sad and crying. I was surrounded by pure guilt, as though I had forgotten my baby. Earlier today I decided to do something spontaneous and cisited a gallery. I was relieved that I got on the tube and got ro my destination. But when I gor there, I felt lost. I had no sense on direction or purpose for being there. I cried. all the way back to the train station and all the negativity that is happening in my life right now found their way into my head and emotions on top of all the hurtful and sad feelings I already have in me from losing baby Idrys.

Three weeks on and it still hasn’t got easier.

Hope you are happy where you are my beautiful boy.

Mommy is trying to stay strong for your brothers and missing you so much xxx

 

2 weeks and counting…..

It’s school half term this week & we figured a time away from working at our coffee shop & spend the day with our two boys may help to ease the pain. The last week was all about trying to get back to normality. We have slowly able to speak of our loss to other people including some of our customers.

It was hard at first, but I feel that if I don’t find the strength to talk about what has happened and speak of the loss of my baby Idrys, then will forever be forgotten. I want my son to be validated, by people around me, by the society. It’s absurd to think that the law do not allow babies born before 24 weeks gestation be recognised or be registered anywhere officially. Heartbreaking for parents like us whom had to lose our baby in such a horrible way.

Crying is something I do on a daily basis. There, four times a day is normal. Usually in my bedroom and at times when I can’t hold it together anymore in our shop, I would head for tge toilet and cry my heart out, and that’s because I miss him so much. Missing the fact that  we will never have the opportunity to see him grow but knew it wouldn’t have been possible due to his condition.

Today I tried my very best to be ok for my 2 other boys. So we took then for a trip to a safari. But what hit home was that at 3pm I remembered that it was the time when the hospital called me to go in as they have a bed available for me. And at around 5.30pm today reminded me of when I had him two weeks ago.

It’s been a really difficult recovery. I even had to go back to the a&e at the same hospital last Friday night due to a large clot and heavy bleeding. The saddest part was when my husband and I left the hospital in the early hours of the morning, remembering what had happened just over a week ago and leaving the hospital without our baby.

Although I was glad to see my husband and kids enjoying our trip today, deep down I know all of us are still very heartbroken.

Missing you baby Idrys x

Shine bright tonight my darling x

Forever in our heart

 

 

Living and coping with a sad news

No one can quite understand the pain of losing a child, unborn or alive, especially when he or she is so wanted, until you experience it yourself.

Four weeks ago, during my routine 12 weeks scan, we were told our baby has a condition known as ‘Edwards Syndrome’ or Trisomy 18. This is a rare but fatal condition which happens to 1 in every 3000 pregnancies. It is kind of common but it is a condition that people don’t talk or know about – until it happens to them or someone they know.

The last four weeks our lives have been turned upside down and filled with heartbreak, pain, confusion & the sense of helplessness. We were frustrated.  We tried our best during those few weeks seeking for answers & opinions from various medical professionals and religious experts, and the options presented to us were almost next to none. I was also extremely saddened with the fact that my husband nor our two boys (aged 6 & 7) had not had the opportunity to ‘meet’ the baby as they were unable to attend any of my scans. See, I bled throughout my pregnancy right from when I first found found out I was pregnant at 5 weeks + 3 days. I’ve ‘met’ my baby 3 times including my 12 week scan (plus two emergency scans due to bleeding) and witnessed his heart beating. Those were the moments when I started to ‘bond’ with my unborn baby. To see his heart beating at every scan was enough for me to instantly want to ‘protect’ and do what I can for him, even though he was still in my womb. I then booked for our family to have a scan at a private clinic as the NHS would only let you have one at your 12 week and the next when you are 20 weeks pregnant. At this point I had no idea why I wanted to have a scan. But the lady at the clinic was so understanding and sympathetic and understand the situation I was in so she booked me to have a ‘reassurance scan’ the very next day after I called. I was then 14 weeks pregnant and had cancelled a medical termination appointment booked by the hospital. I was not ready to say goodbye to my son. At the scan, we were met by the head consultant at the clinic and when he saw the scan he instantly told us the various abnormalities with our baby. My other children were there too. They knew what was going on and I’m glad they get to ‘meet’ their little brother. the consultant/doctor then suggested that he speaks to us privately in his office without the presence of our 2 children. There was no easy way but he told us exactly what he thinks based on what he saw. Coming from an experienced medical professional, when we were told that there is basically ‘no hope’ for our unborn baby, what were we left to do? I was even told to consider having a surgical rather than a medical termination, if that’s the decision I would eventually make, so that I do not have a traumatic experience. We left the clinic feeling heartbroken again. At this stage, we were two broken parents living in hope that everything was just a bad dream.

I even went back to the hospital asking for more questions. Questions like “how accurate is the CVS test?”, “what type of T18 does my baby suffers from? Full T18? Mosaic”?, “how different are the termination process at different pregnancy stages?”. In the end I got the midwife to agree for me to have another scan with a consultant at the hospital when I am 16 weeks + 2days for one final assessment of my son’s condition.

But there was nothing we could do to help our unborn son. It was a matter of either waiting for him to ‘pass away’ peacefully in my womb or if he survives to full term, passes away at birth. And we also had to live thinking if he actually survives birth, he will be severely disabled with many abnormalities and may live for a few weeks and in very rare cases Edward Syndrome babies can survive past a year. These are the harsh realities for babies diagnosed with this horrible condition and the agonising decisions are left to the parents, all the more difficult because there are no ‘good’ options.

We’ve been grieving the last 4 weeks in the best way we could, and today when we buried our son, proved to be one of the hardest, saddest and most painful things we’ve ever had to do as parents. Many don’t realise that at 16 weeks, a baby has already developed arms, legs, fingers, toes etc. A proper little person. And what a beautiful boy he was. This is one of the reasons why we wanted to treat him with dignity and requested to at least register his death somewhere. We could not even officially write his name down anywhere. According to the British law, babies born before 24 weeks cannot be registered. I find this quite appalling as knowing that babies by around 12 weeks have started to look like a proper baby, parents still not given the rights or privillege to have an official document to remember their baby. It’s as though a baby that dies before 24 weeks does not matter or treated like they never existed.
We believe that he is at peace now & is in being cared for in Heaven.
And with this I would also like to raise an awareness of Edwards Sydrome/ Trisomy 18 & the impact it has on families affected by it. No words can explain how anyone affected by it live through it. Whatever decision the parents made are so personal and individual to them. So was ours. We cry every night since our baby Idrys passes away sleeping on 3rd Feb 2016. For some reason, perhaps with the power of the AlMighty, we and the baby knew that was the day he was going straight back to heaven as I was meant to be admitted that day. The same day I also booked to have my final scan at 16 weeks + 2 days with a senior consultant at the hospital. Baby Idrys helped me giving birth to him painless, quick and trauma-free. I was not even given any medical termination to give birth to him. He knew. He knew he was loved but also knew we had to let him go. So he went before we made any moves to save us the heartache. Our hearts still aching for losing you my precious son.

We already planned to have a funeral for him and bury him a beautiful cemetary we found near us. As much as it broke our heart on the day we collected his body from the hospital right to the time we buried him (daddy did with the help of the cemetery official), we are glad that we have found a wonderful place for our baby’s final resting place. A comfort if nothing else to know that we have a place we can go to when we’re missing him so much.

Rest in peace baby Idrys. Mommy, daddy & your brothers love you so much. We are missing you terribly already.

For other parents out there who are affected by this heartbreaking situation, please remember there are many other parents in a similar situation out there. We re still grieving but my husband and I also welcome anyone affected by this to get in contact if you would like to have a chat or have any questions. Losing a child is never easy – unborn or alive. Take care & love each other.

More information on  Edwards Syndrome & Trisomy 18

People and charities I spoke to for support:

ARC –ARC

SOFT – SOFT

Children of Jannah –Children of Jannah