When Mother Nature has other ideas

For those of you who regularly read my blog or follow me on social media you may know that I have been waiting for the news about my heart since before Christmas (see this blog post if you need a catch up).  Anyway that decision was supposed to be discussed with me this week, when I was due to see my cardiologist about my MRI scan results from last year.

My hospital appointment was on Wednesday, the morning after the night the snow came that caused gridlock across the north west, and meant my cardiologist was one of the many people unable to get into work that day, so, alas again, I am still awaiting news as to what the future holds for my heart and for me.

IMG_9346.JPG
Wednesday morning 6am

Initially I felt really frustrated that I still don’t know what will happen and all because of a bit of snow! Then I remembered that this isn’t the first time Mother Nature has put a spanner in the works for me and, in the grand scheme of things, this time I feel a bit of snow is quite a minor one.

Previous Mother Nature surprises have included nightmares such as my first child Violet being born with a heart disorder that was 100% fixed thanks to medical science then only to die from an extremely rare lung disease.  Then I am diagnosed with a heart disorder too, that it seems I was born with.

IMG_9351
Violet’s butterfly in our garden reflecting the warm lighting from inside the house

My second baby was given the all clear as healthy at his 16 week scan to be told at the 20 week scan that his brain hadn’t formed correctly so we’d need a TFMR.  During both of these births medical procedures went wrong and I nearly died.   Then I was told the issues both babies had were probably genetic, inherited from me and after tests it turns out the faulty gene is so extremely rare they can’t identify it as yet (of course it bloody is!).

Then Mother Nature pleasantly surprised us with my third pregnancy, which we weren’t expecting as it was immediately after losing Arthur, and this time it went smoothly producing the beautiful Aurora.  Perhaps she felt she owed me one!

IMG_9350
Aurora watching the snow – her first.

So Mother Nature continually surprises us on a frequent basis so I really don’t know why a bit of snow causing gridlock, on the one day I really wanted to be able to see a consultant, shocked me at all.  I should be getting used to this by now.

IMG_5586
Our neighbours snow covered garden so pretty

I need to remember to a certain extent to “ride the wave” or “go with the flow”, when forces beyond my control come into play and balls everything up.  It really is like the shipwreck analogy of grief, I’ve been clinging to the “I’ll find out about my heart on Wednesday” piece of wood to stay afloat and buoyant for the last month only for it to suddenly disintegrate plunging me under the icy waves once again.  Anyway now I’ve clambered onto the “meh so what” Irish whiskey keg barrel and seem to have recovered again!

All I can say is that if a higher power does exist they certainly have a very dark sense of humour with the twists and turns they deliver to me on a regular basis.

I’m just hoping I get to see my cardiologist soon and that he says I can have a keyhole procedure in the not too distant future.

IMG_5594 2
Good job the snow is so pretty.  Can you spot the birds?

Hope none of you were adversely affected by the snow and scuppered by our good old Mother Nature.  Keep warm.

Big love

Sarah x

Grief is like being Ship wrecked

This time of year we find a little tricky because this is the week our baby Arthur was due to be born, and although we marked his official first birthday and day he died in September, I still feel a little tug that says we should be having a first birthday party for him in early January.

arthur grave
Our little boy Arthur

Grieving for Arthur I find harder and more complicated than I do for Violet as the situation is much more complex:

  • We never knew Arthur not properly. Yes I felt him move and kick inside me (a lot) but we never got to met him alive.
  • We were the ones who decided to end his life prematurely based on medical facts and delivered him early sleeping. The hardest decision we’ve ever made.
  • The bittersweet this is that if we hadn’t decided to lose Arthur when we did then we wouldn’t have had Aurora and she wouldn’t be here today. So that is hard to swallow – how can you feel sad about someone who led to the creation of someone else?

Anyway I saw my counselor this week and she said we should thank Arthur for giving us Aurora so tonight we will toast our little boy.  She also passed me a really lovely article that was taken from a guy called GSnow’s Reddit account.  Some of the original isn’t really relevant to child loss so I have edited it somewhat and also added some of my own words but you can read the full piece he wrote here.

IMG_0143
The Bay of Kotor

“As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating for me luckily it was my husband and we clung to each other. Some of my family and friends also floated nearby providing sustenance for us to carry on. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, seeing another young family similar to yours on the street, the sound of a baby crying. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or a family gathering. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out. Occasionally the wave can come from no where and totally overwhelm you but again you rise up, gasp and breathe again.

The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too.”

IMG_2439
Sunset over Auckland

I started to write and plan this article before I read the sad news today about local BBC newsreader Dianne Oxberry who sadly passed away.  I have lots of friends who were her friends and everyone who met her spoke fondly of her, so this article is dedicated to her friends and family.  May you ride the storm of grief and find some lovely memories from the beautiful ship to cling to.  If you know those close to her please help them to stay afloat.  Do this through kindness and compassion.

Big love and hugs, Sarah x

 

What a difference a year makes?

Today is the official birthday of our baby boy Arthur George who was born sleeping at 22 weeks of pregnancy.  Legally he doesn’t exist as he has no birth certificate or death certificate as he didn’t draw breath.  If he had he would technically have been alive.

He was a termination for medical reasons known as TMR and it was the hardest decision myself and my husband have ever had to make (read more about it in this earlier post) but we knew it was the right one to make as he wouldn’t have survived to full term passing anyway around 30 weeks so we felt it was the kindest decision.  We still wondered and worried as to whether we were right.

We were still grieving the loss of Violet and then felt as though we were burying our last little bit of hope when we said goodbye to her brother.  We entered a period of darkness even darker than we could imagine and felt our little flicker of hope we had extinguish completely when we were informed there was a 50/50 chance of future seriously ill babies like Arthur.  A few months later we got the surprise news of another pregnancy.  A pregnancy fraught with worry, stress and anguish as we wondered if once again the light we thought we could see at the end of the dark tunnel was in fact yet another high speed train set to derail us once again.

Now exactly a year to the day we held and said goodbye to our little son I’m holding another 5 week old little daughter, Aurora.

VanessaLouisePhotography_001.jpg
Aurora at 3 weeks old.

We named her Aurora as it means “Goddess of the Dawn” and “Light”.  We thought this was beautiful and had special resonance for us as we now can start to see daylight again through the fog.

Happy birthday to our little rainbow Arthur George who taught us to dream and hope again after the loss of our first precious daughter Violet.

He also made us more determined to change more babies lives by raising more money for Violet’s cardiac surgery fund at Alder Hey Hospital and we set a date for the Violet Ball at the end of this month, 29th September at Radisson Edwardian hotel in Manchester you can get more information here.  There are tickets still available and we are looking for raffle prizes too so if you can help please get in touch.

Love and thanks

Sarah xx

 

Emotional

Relieved, ungrateful, confusing, complicated, devastating, exciting, ecstatic, elated, happy, sad, angry…

Emotional is probably the only constant state at the moment, as with the majority of new mums, never mind those who have gone through child loss. I’m facing a wave of different emotions everyday but unlike most new mums mine include sadness, feeling angry, confused (how can you feel immense pain & pleasure at same time) & devastated that my older children aren’t here too.  I am a mother of three not one.

The midwife service would ordinarily have signed me and baby off by now and passed our care onto the health visitors but given the extreme circumstances (loss of two children) they are keeping a close eye on me alongside the health visitors, which is nice in a way, as it is a total contradiction to the care we had 3 years ago where we were forgotten about for the first few weeks after we left hospital. We complained at the time to Manchester’s NHS trust and it resulted in a full restructure of procedures for new mum care in Greater Manchester, hopefully meaning high risk babies that have undergone surgery shortly after birth won’t now fall down the cracks as we did.

In a way this is probably also now the reason why both departments are now OTT with our care.

Facetune_19-08-2018-14-37-36
Me (tired & make up free but happy) with Aurora

 

Midwives and health visitors ask me how I’m doing then look at me carefully to observe my facial expressions & body language to see when I say that “I’m ok” if I’m being honest. They all looked surprised when I explained after Aurora was born healthy that for the first time in 9 months a lot of my anxiety and worry had lifted. I actually felt a huge sense of relief and was also in slight shock that at last the ordeal of waiting and wondering was over. She was finally here and was healthy. Sometimes it still feels surreal so I have to pinch myself to check I’m not just dreaming and other times I still find myself because of sleep deprivation accidentally calling Aurora Violet as though my brain has regressed in time.  Although I’m led to believe this also happens often when you have multiple children who are alive too.

Anyway got to dash baby waking for a feed…thanks for reading.

Love Sarah 😘 x

 

 

 

 

Surviving after Child Loss

Whilst I was sat on a train heading to Glasgow earlier this week I decided to write a few blog posts touching on subjects people have been curious about.

People often ask me about how we coped with losing Violet and about the techniques we employed to try to help ourselves get through this time.

We tried to remember what we enjoyed about life when our daughter was still with us and focused on making ourselves do these things even though we didn’t want to and certainly didn’t have the motivation.

It all began with us still going on a mini-break to the Lake District only a few weeks after she had died.  A break we had already planned and paid for when our daughter was still alive.  That trip was an extremely hard one for us and we only stayed there for the bare minimum of time.  We also had lunch at L’Enclume that I had arranged as a belated birthday surprise for my hubby.  We just went through the motions and returned home early on the final day as we felt lost.

IMG_2211
Cartmel, Lake District

The things we had enjoyed doing as a family trio were travel, Violet was a true jetsetter and travelled more in her short life then many adults do in theirs, and dining out in new places.  Admittedly the fondness for dining out was more mine and my hubby’s as Violet disliked food although she did enjoy people watching.  She was always good as gold too preferring to use high chairs to rest her books on for reading and often got praised by staff for how clean and well behaved she was.    I work in travel and hospitality PR so my work has always channeled my passion but I felt as though this love had disappeared with Violet.

20160221_102115.jpg
Violet watching the Snoopy film on the flight to New Zealand at 7 months old

After the initial Lake District trip we continued to make sure we planned and booked other things in advance, so then we had less chance of being able to back out and change our minds at the last minute.  Don’t get me wrong there were quite a few dinner reservations we made and then couldn’t be bothered going to or arrangements with friends we had to back out of as we simply couldn’t face it.

We jointly decided that we should focus on ensuring, despite our misery, that we booked restaurants or mini-breaks for anniversaries and birthdays.  We encouraged each other to make an effort to keep the reservation, as we often found that only one of us would wobble and want to back out of plans.  We worked as a team to persuade each other knowing that it was for the best in the long run.

We planned trips to places we had already wanted to visit but only for a few days at a time, as again we knew a big trip would be too much for us.  Places like Florence in Italy for Valentine’s day, Bilbao in Spain to visit the Guggenheim, Montenegro to escape for Violet’s anniversary, Morocco to escape Arthur’s due date etc.

IMG_1268
Sunset in Bilbao, Spain

Slowly but surely after nearly 2 years I can now talk again about travel being a passion of mine, without instantly feeling guilty about it as now I realise that this was also a passion of my daughters and something she would still relish if she was alive today.  I also embraced a new hobby for photography, especially landscape and architecture.  All the photos in this blog are mine.

I’ve not yet gotten there with the dining out thing, I’m still fond of food and work in hospitality however we don’t dine out as a couple anywhere near as much as we used to.   I know in time we will and this will be easier too. To the “friend” that said to us after Violet died “well at least you can now travel whenever you like and dine out whenever you like” well we did travel and dine whenever we liked with Violet as she loved it and we can nearly do this again without pangs of guilt and imagining what she’d have thought of it/been like in these places but every day is tough.  It’s not as easy as “at least you don’t have to arrange a babysitter”.

A Mother’s Guilt

I often hear parents with more than one child talk about the guilt they feel about spending more time with one over the other and about how guilty that makes them, as they try to give equal attention and time to each child. Well what happens when you have several children but they are no longer living?

IMG_0366
Their shared graveside

I frequently feel guilt over my second born Arthur because he gets forgotten in favour of his big sister Violet, who is centre stage in everything & poor Arthur as the second child is pushed to one side almost ignored.

We never knew Arthur. Yes I felt him move inside of me. People, our family & friends never met him. He never babbled at people. He never laughed or cried. He never pointed at anything he wanted looking for someone to fetch it for him. He never sighed and rolled his eyes when I attempted to sing poorly. He never looked annoyed when someone sang nursery rhymes to him out of tune. He never orchestrated control of a room full of toddlers & adults so they danced to his tune, despite not saying a word. He never made his displeasure felt through tantruming. He never banged a drum or read a book. He never smiled. He never held a balloon or shrieked with excitement, if he spotted a cat or dog. He never saw or rode on an airplane or a boat. He never danced along to music. He never opened his eyes to look around. He never even took a breath or made a sound. Technically & legally he doesn’t exist, as he was born sleeping at 22 weeks, so he doesn’t have a birth or a death certificate.  He did have his own crematorium service and his ashes were buried with his sister. He has his own name in flowers on their grave and in time his name will be written on their shared gravestone but bless him he doesn’t have a lot to remember that he was here.

Arthur scan
A photo of Arthur

It’s much easier for us to remember and to talk about Violet as lots of people knew her, so there are lots of shared memories we can all draw on. We have thousands of photos and some video footage of her. She even had her own circle of friends, who we always remember at Christmas and their birthdays, as that would be what she’d have wanted.

Arthur bless him doesn’t have any shared memories or friends and didn’t impact any people other than our immediate family but he is still special to us. We still fight to try to get answers for his condition, in the hope that research might help others out there too. In time we will probably fundraise for charity for him also so he has a legacy alongside his sister’s but we’ve chosen to focus on our first child for now, as there’s a clearer legacy path for her. In her memory we will focus on helping other babies to have life saving heart surgery either here in the UK at Alder Hey Hospital or overseas in third world countries through a great charity called Healing Little Hearts.

This blog is full of photos of Violet and that’s great because we have lots of her and she loved having her photo taken too.   It is important for us to recognise that just because we can’t share lots of photos of Arthur or share amusing anecdotes about what he was like as a person it doesn’t mean he isn’t thought about or loved by us.

Violet in a pretty dress
Violet at 1 year old

I like to think too that if they were both still alive today that Violet would definitely still be stealing the limelight away from her little brother, as much as humanely possible, and she would certainly boss him around so maybe him playing second fiddle is just a symptom of him being second born, whether he is alive or not?

What do you think? Do you feel guilty about spending more time with one child over another? Does one of them hog the limelight over a shyer sibling?

Love, Sarah x