When you finally get your rainbow baby what then…

Most people I meet now, after they’ve recoiled from the shock of hearing I’m a mother of three but only one child is alive, say things like “oh third time lucky then” or “at least it’s all worked out in the end”  Urmmm no it clearly hasn’t all worked out in the end has it? Has my daughter Violet suddenly sprung back to life?

When I was pregnant with Aurora people could understand why I might have been anxious and there’s even a term for it PAL or pregnancy after loss but once your rainbow baby is here then people assume that’s it and you must be feeling better now. The grief over child loss must be over now you have another baby surely? You can move on and avoid dwelling in the past.

Well unfortunately it’s not that simple you see, yes I may have another living baby now but I still had two other children before her and just like those with more than one child, when you have a new one you don’t throw your old one away and forget about them do you? Or you shouldn’t.  If you do then social services rightly get involved. So why should it be different for angel babies? Why forget about them? How can we forget about them?

I don’t blame people who think I must have moved on though, as suddenly they see me out and about with my new baby actually smiling and resembling someone who’s happy. I guess I am happy fleetingly which is an improvement but it’s now as though I’m on a permanent roller coaster. Aurora smiles or babbles at me equals on a high then she looks at me in a certain way & I see her sister Violet in her equals unimaginable high & then immediate low.

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I still get side swiped daily by emotions but different ones from before. Seeing a mother cooing over a baby no longer makes me want to cry for the loss of Arthur although I admit seeing mums with little boys gives me a pang of pain. Now it happens when I see parents of multiple children walking with them all to the park. Brother and sisters playing and arguing together. Family lifestyle photo shoots of the whole family looking happy together in autumnal leaves (yes I do live in Chorlton! Lol). Even at Halloween cute sibling photos of older ones taking their toddler brother or sister trick or treating for the first time pour salt onto my wound.

Autumn photoshoot - Ian Scott Photography
Credit ianscottphotography.co.uk

I find myself trying to imagine what Violet would look like now aged 3.5 and what she’d think of her little sister. How would they interact? When Aurora is bigger what arguments would they have about minor things? I find it hard to imagine and to think of Violet as anything more than a baby, almost toddler. I find that upsetting too. Her sister will never know her. I can’t imagine life without my sister so now I feel a new level of grief for Aurora for the big sister she will never know or experience.

The hallway of family photos we have where the sisters may sit side by side in different frames but never actually occupy the same one. There will be photos of Aurora getting older, fingers crossed, next to the same photos of her big sister who will eternally be a toddler.  That will be a concept I’m sure Aurora when she’s older will struggle to get her head around, how can a baby be her big sister?

Family photoshoot - Manchester Photography courses
Family photoshoot – credit Manchester Photography courses

I wonder what Violet would have been like today and what she’d have thought of her baby sister?  Do you ever wonder what if?  I do every moment of every day.

Love Sarah x

Luck, God or just random shit?

I don’t know if I believe in luck.  I stopped believing in God as a teenager when I saw the suffering in the world and learnt more about science and history.  I then liked to believe in everything being made from energy and read a lot of books like “The Secret” that talked about putting positive energy out there to get the same back.  Similar to Karma in what comes around goes around.

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I still have a fondness for churches.  Here’s Hallgrimskirkja in Reykjavik, Iceland

The energy, karma and positivity mantra was the way I always lived my life.  Some people believe in God but I have liked to believe in the ancient energy of mother earth, not in a chanting naked around Stonehenge way, but the idea that we’re all made of energy always seemed more scientific and therefore believable.

Violet came along and we were told at her 20-week scan about her heart defect and that it was bad luck.  She was an undiagnosed breach baby and I had her naturally afterwards we were again told “oh you had very bad luck there”.  Then Violet got her heart fixed by surgeons at Alder Hey hospital and all the time we channeled positive energy.  Other family members and friends prayed for her in a multitude of different faiths.

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The Priory in Cartmel a stunningly beautiful place

Her surgery was a permanent fix.  People told us how lucky she and we were that she survived but we thanked science and the talented people at Alder Hey.  We continued to think in a positive way and raised funds from our belated wedding reception for Ronald McDonald House to thank them for their support of us in providing accommodation when Violet was in hospital.

Then when Violet got sick again being admitted into Manchester Children’s Hospital we continued to channel positivity and friends/family prayed again for her.  After just over a week she seemed to turn a corner, we rejoiced and thanked everyone, mother earth, God, everyone’s prayers were answered…but then she suddenly died.  When we got her post mortem results, and then over 18 months later an inquest verdict, to be told she was just very unlucky and she died from something so extremely rare that no one could believe it.

We then got pregnant again with Arthur our rainbow and were told at his 20-week scan that he had irreparable brain damage and once again told that we were just very unlucky again.

Now if I was to believe in karma both of these things should have been lucky instead. I’m the person that buys food for random homeless people and sometimes helps them even further, for example I bought a homeless guy a sleeping bag in winter when he was sat sobbing because someone beat up and robbed him.  Over the years I have raised thousands for charity.  I’ve also only ever had rescue animals and do the middle class thing of sponsoring a child in Africa, so whilst I don’t do this as a quid pro quo or usually tell people whenever I do something kind, I should have a lot of good karma saved up right there. So I think the loss of my two children shows this karma thing is pure nonsense as for luck well….

As for God…I know lots of people who have lost children and are comforted by their faith. I on the other hand can’t believe in anyone or anything that can cause that kind of pain for anyone.  The pain my child suffered in hospital in the weeks before she died, and that of other children suffering in hospital too, means if there is a God then he is a cruel unkind one, so why worship him/her?   I actually in a way admire those child loss survivors who do still believe, as they’re certainly stronger in their faith than I am.

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We still light candles for our babies when we travel just in case – here’s the inside of St Ann’s Church in Manchester the epicentre of the city

I still try to think positively, as it helps me to cope day to day but I do it more because I think that Violet wouldn’t want me to be upset or negative and me being miserable and negative isn’t going to bring Violet and Arthur back. I also now have the adorable Aurora to care for so need to be the best version of me for her sake.

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An autumnal walk in the park with colds and coughs hoping the fresh air does us good

I believe kindness, compassion and good manners aren’t exclusive to those who are religious and my experiences over the last few years have shown me that often these qualities can be missing just as easily from a religious person as they can be present in an atheist.  I like to treat people with kindness and respect regardless of who they are. Blame my mother for this one as she clearly raised us well.

So to summarize I’m not sure what I believe anymore and maybe as one of my extremely clever friends said, “perhaps life is just a lot of random shit that just happens and if you survive then you either learn to deal with it or you don’t end of”. Not quite as eloquent as Forrest Gump’s “life is like a box of chocolates” but I can really identify with my friends version.  If religion is how you learn to deal with life’s challenges then good on you, it’s certainly better than turning to addiction or not coping at all.  Each to their own and I think child loss survivors need to push on anyway they can.

How do you cope with things or spur yourself to carry on beyond what you used to believe was your limit?

 

 

 

 

Growth

When I was pregnant I remember strangers would tell me “oh your life will change once the baby comes”. “You’ve no idea of the impact it’ll have & how much you will grow as a person”.  Well they were totally right as no one prepares you for the shock of parenthood but what people don’t realise is the really extreme sport form of parenthood is caring for a sick or recovering child or baby now that has a real impact. Not to mention the loss of one but that’s another change entirely and I wouldn’t describe that as growth at all, that’s more like having an amputation but I’m not talking about that now.

It feels strange to us to have a “normal” healthy newborn, as with Violet we had to give her specialist care because she was recovering from open heart surgery. So in her early years we couldn’t lift her under her arms, couldn’t wind her over the shoulder, she couldn’t do “tummy time” and we couldn’t touch or rub her chest or tummy at all because of her chest wound and broken rib cage. Anyone who’s ever had broken ribs will understand the pain she would have been in during the first 8 weeks while they healed not to mention all the surrounding muscle tissue including her heart. For a good while we also couldn’t bathe her either bless her.

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Winding Aurora over the shoulder

Last time with Violet as a newborn all her energy from milk consumption in the first few months went towards healing her ribs, heart and muscles from heart surgery so she didn’t really grow or gain weight at all in her first few months of life. In fact she couldn’t even be plotted on the normal growth chart until she was about 6 months old!

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A teeny tiny Violet in Alder Hey Hospital

This time round despite us feeding Aurora less than we did Violet she is piling on the pounds, rapidly jumping up the growth chart percentiles as a result every health professional so far that has weighed aurora has exclaimed how well we’re doing as new parents, whereas with her sister we were frowned at, interrogated about our feeding skills & had to keep meticulous written feeding records we could show them as “evidence”.  Violet fed every 45 minutes for weeks & Aurora feeds every 1-1.5hrs & sometimes at now 4 weeks old she can go a whole 2.5hrs between feeds but we’ve not had to keep records for Aurora.

You’ve no idea how much reassurance growth and weight gain gives you as a new parent. Assurance that despite the tears, occasional vomiting and lack of sleep you’re doing exactly the right thing. With Violet half the time we were made to feel as though we were failing, as she didn’t follow any “normal” growth trajectory, whereas this time the same (if not less) effort is getting us much better results on the growth chart.

We now realise how brilliant we actually were with Violet in looking after her complex care needs and managing to look after her well, despite everything being 10 times harder for us, than we now know it is for those with a healthy newborn baby.

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Violet at a week old still at Alder Hey Hospital after open heart surgery

Immediately after Aurora’s birth the midwife asked Daddy to change the first dirty nappies, that some of you will know contain the challenge of Meconium deposits, (for any novices out there that’s sticky black, tar like poo) and she exclaimed “oh this will be an experience for you” but it was super easy for him compared to when he changed Violets leaning into an incubator carefully cleaning around the various wires and tubes that were keeping her alive. So not that I want to jinx anything but it seems as though Violet really did grow and develop us in even more ways than we care to realise. Hats off to other parents of challenging or poorly babies as we now realise again just how many medals and pats on the back you deserve! You are truly amazing and don’t be disheartened if your baby isn’t jumping up the growth charts. Don’t let health visitors & others make you feel you’re not doing a good enough job, as caring for a sick or recovering baby is a challenge beyond extreme so don’t allow them to compare your super hero baby to other “normal” healthy ones.  And those other new parents whose healthy babies are climbing the growth charts like our Aurora is you’re not too bad either! Keep up the good work & remember not all growth is easily measured.

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Aurora at a week old enjoying the sunshine outside

To those bereaved parents there are no words and I’m sorry you’re reading this, as I completely understand that when you hear people talking about the tiredness & stress of parenting you know you’d happily agree to anything to get your baby back. I have been there. Big hugs,

Love 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.

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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

 

More of a mother? 

For years I have heard close friends and family talk about how they feel like fraudulent mummies because they had caesarean sections instead of natural births.

Other friends have spoken about the pressure to have done natural child birth, without pain relief, as though the more natural, painful and traumatic your experience the bigger your entitlement to a “super mummy” badge.

Super mother

I felt I needed to write this blog post about the pure bullshit (yes that’s the language I’m choosing to use) of this whole belief system.  I’m someone who has now become a mother as a result of the most painful natural birth, I’ve delivered a sleeping baby early naturally and I’ve also had an elective Caesarean section too.  I can say from experience that all of these make me equally a mother and each of these experiences posed their own challenges, unique type of pain and suffering (both during and afterwards, both emotional and physical pain).

My “natural” birth was undiagnosed breach during which I had no pain relief and both myself and my daughter nearly died. Now this experience, to some women I’ve spoken to at various baby groups, is lauded as making me a “super woman” and 3 years ago in the baby class tales of who had had the worst birth experience meant I usually “won” that one hands down.

I remember one woman at a baby group proudly stating she also had a breach birth naturally and when offered a C-section instead opted for a no pain relief natural experience and said she was proud she’d done it. What utter nonsense? As someone who has experienced it and without pain relief, I can hand on heart say I really wish I hadn’t have been through it at all.

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Baby Aurora a few hours old last week

Yes it is important for women to be able to have a choice in the birth process and for them to be able to have a say in their experience but at the end of the day the priority must always be the health of mother and her baby or babies so whatever is best for the patients should be what happens. For women to then wear their “experience” as a badge of honour, that they can use to bash other mums with (as if new mums don’t already have enough to feel guilty about!) is I think total and complete bollocks.

I’ve had people say to me, that they wish they’d have had the birth experience I had, instead of the C-section they actually did have, and as someone whose physical wounds and emotional ones still haven’t healed from my original birth trauma, I’ve had to say “ermmm no you really don’t want to have experienced what I did”.

So why is a C-section seen as the easy option or the cheats way? As someone who has now also experienced a Caesarean section with my latest pregnancy (actually last week!) I can say it’s certainly not the super easy and pain free alternative that it is lauded as.   Those women I was in hospital with who had natural births are already out and about with their babies in slings, pushing them in prams and lifting car seats into their cars to take baby for a drive.  I can’t do any of that yet because of the wound that still needs to heal across my tummy and I’m limited to what I can lift, stretch to reach and physically do.  I’m also on strong painkillers for the pain following the major operation, as that is what a Caesarean section is, a major operation!  Natural childbirth might be more painful at the time of birth but post birth C-section pain and discomfort wins hands down unless you of course have complications such as tears, prolapse, piles, etc.

Women at baby groups talk about their natural birth experiences in the same way we probably chatted about hunting trips and warfare as cave people. The stories seem to become more elaborate and embellished as they are repeated with some women seeming to get pleasure from reliving all the horrendous little details wanting to out shock or out gore the person before.  There seems to be an element of competition about the whole thing trying to see who has had the worst experience.

If women talk about their experiences with such great delight then why aren’t the genuine battle scars, including C-section scars, stretch marks & saggy boobs also celebrated by society and why are women made to feel bad about them? Should they not be championed as battle scars and showcased alongside the tales of woe?

Why are some women also made to feel bad for having C-sections by men too? Some men when I was pregnant and they heard I was having a planned c section actually joked “too posh to push hey?” With even women giving each other a hard time over childbirth what hope do we have for men to then react appropriately?

Do you feel bad about your childbirth experience?  Have others made you feel guilty about it?  Have you decided to change things with any future children?

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Tiny hands

I feel we have a long way to go when discussing childbirth but it is about time we simply celebrate motherhood no matter how our babies arrived into the world and we should celebrate all types of motherhood too, including those whose babies don’t quite go or arrive as planned.   It’s important to talk about child loss too and alternative experiences.

Love

Sarah x