My heart’s all fixed

Back in 2016 I felt the worst pain I have ever felt when I lost my beloved daughter Violet and then the following year I lost her brother Arthur at 22 weeks of pregnancy too.  I knew then exactly what people meant when they described a broken heart.  I have never felt a pain like it.

Ironically after I had lost Violet in early 2017, before Arthur, I sought medical advice for dizziness and lethargy that I’d had on and off since I had had Violet.  When she was alive I was told it was probably because I was sleep deprived with a new baby and being a busy mum but when these symptoms continued after she had gone I got it checked out again.  I was diagnosed with having an ASD or hole in my heart that will have been there since birth but possibly enlarged during the pregnancy and birth of Violet.

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I have this gorgeous art work by The Gallery UK in our dining room!

The hole it turned out was pretty large nearly 2cm in diameter and without a repair my symptoms would probably have got worse and I was at higher risk of clots and stroke too.  So I have been waiting for a repair since early 2017.

I still remember that first diagnosis of a broken heart and laughing saying “well I know this already as my daughter has just died”.

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My broken heart depicted here – Violet Skies

So now it feels odd when I tell people I had a broken heart but now it’s fixed as though it means I am over the grief of using my children.  I find myself having to say physically my heart is now repaired but of course emotionally it isn’t.

What’s great is that when I came round from the anesthetic I asked was there a window open as the air felt so fresh, like it does at the seaside or in the country when it’s full of oxygen.  Of course there was no window open I just now have the ability to absorb more oxygen from the air so even today when I breathe in the air feels clean and fresh (yes even in Manchester).

I can’t wait to visit the seaside or countryside as I feel it will blow my mind the amount of oxygen I will have.

The other major difference already is that I don’t get out of breath as easily just walking down the road and my muscles don’t burn after even slight exercise either.  I felt like the bionic woman initially!

It will take a few months hopefully before I feel the full affects of the operation as one side of my heart is still very enlarged so will take time for the pressure to dissipate but I’m hopeful that by spring I will certainly have a new lease of life.

I will never run a marathon but looking forward to having more energy to spend quality time with my rainbow baby and family alongside of course juggle work, charity and this blog too.

So at a time when lots of people have resolutions about losing weight or stopping smoking I am trying to remain as healthy and stress free as possible in order to give my heart a fighting chance to heal and recover properly.

What are you hopeful for this year?

Do you have resolutions or hopes for the decade ahead?

Please do share with me…

Love Sarah

Always Violet Skies xxx

You might be interested in these posts too –

Broken hearted

Surviving after child loss

A Literal Broken Heart

 

 

Due Date Anniversary

So today in 2018 was our son Arthur’s due date but he was born sleeping on 1stSeptember 2017. I don’t therefore know what you call today “a scheduled birthday that should have been”??? A Due Date Anniversary?

Confused situation

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It feels odd being sad today because if all had gone to plan and he had been born today happy and healthy then we wouldn’t have our little girl Aurora as she was also born later on in 2018.

It is a confused situation entirely.  Arthur doesn’t even legally exist as he was born sleeping at 22 weeks old so 2 weeks earlier than the legal requirement for human life however if he had drawn a breath at birth than he would have lived so then would have a birth and death certificate.  He never drew breath so he has neither certificate.

 

Legally he never lived

Even though in the eyes of the law he didn’t exist to us he did.  I felt him moving constantly inside me kicking over and over.  We saw him somersaulting on scans and constantly moving even if no one else did.  We knew him a little and met him whilst he was sleeping.  He looked like a miniature version of my hubby with a thick head of dark brown hair.  His name sits now underneath his big sisters name on their headstone at her grave.  We interred his ashes with his sister Violet so she can look after her baby brother.

Their baby sister is continuing to light up our lives here living up to her name “Goddess of the Dawn” and certainly keeps us on our toes.

Rest in peace my little rocket man; keep kicking those legs making those rainbows up high.

Love,

Sarah

Always Violet Skies xx

Here's to all those Rainbow parents

If you enjoyed reading this you might like –

The challenge of a rainbow pregnancy

Somewhere after the rainbow

When you get your rainbow what then

 

 

 

 

 

Reflections on the decade that was…

So as we say goodbye not just to the year 2019 but an entire decade lots of people have been reflecting on what they have done in the past 10 years.  Some have posted before and after photos.  Others have listed achievements they can be proud of.  Others are listing those things they want to achieve in the 20s.

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A Christmas grave

For a mother of loss this time is ever more poignant as it not only marks the start of another year without my child but another decade entirely without her.  This coming year should have been Violet’s 5thbirthday and her brother Arthur’s 2ndbirthday next week.  As has now become our family’s tradition we took our morning stroll via the cemetery to wish our children Happy New Year with their sister in tow before heading off for a New Year’s Day lunch.

Last New Year’s I began a new tradition of looking at what each year since we had Violet has taught me. If you missed last year’s here’s the link.

My experiences for 2019 were – travel with baby daughter to the other side of the world for brother-in-law’s wedding, visited Hong Kong and an amazing old friend in Australia.  2nd brother-in-law’s wedding in London. Rainbow got hearing aids and we started a new journey as parents of a hearing impaired child.  I began a new role as university lecturer & continued my PR consultancy.  Rainbow’s 1st birthday and nursed her through two bouts of pneumonia at 15 months.  I got my heart op & had a 2nd Christmas with our rainbow. Raised over £40k for Alder Hey Children’s Hospital.

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Mangawhai in New Zealand

My Learnings for 2019 are –

  • Hospital admissions are extremely stressful when it is at the hospital where your first born died.
  • When your child gets the same disease as her sister at exactly the same age her sister was when she died from it, then the stress is almost unbearable and you don’t sleep for months.
  • Always trust your gut instinct and ask for second opinions if necessary.
  • Travel insurance doesn’t pay out when you cancel a holiday because your baby is sick and she wasn’t due to travel.
  • You can travel anytime in the future (hopefully) so cancel it if needs be
  • Date nights can be rearranged although perhaps don’t prepay for wine matched dinners (jus asking for baby to be sick!)
  • Good friends are so precious and even when you’ve been apart for ages getting together is still the same
  • Don’t leave your baby sat wearing only a nappy on a friends fluffy white rug as they may decide to take the nappy off…
  • Never fly Swiss air with a baby nightmare airline
  • Family time is the best so try to schedule more of it in
  • Other people have had completely different experiences and challenges in life to you so respect their feelings however alien they may seem and try to learn from them
  • The cardiac ward at MRI is one of the noisiest night time places in Manchester I think a nightclub might give patients a better nights sleep
  • Liverpool Heart and Chest Hospital is absolutely amazing and MRI should take notes from them.It almost makes me want to move to Liverpool!
  • We are lucky enough to have the best neighbours ever you can’t buy that
  • Some people still surprise and shock me but some in a good way
  • Remember not everyone has experienced the same things in life as you so your minor issue could be catastrophic for them so try to be sympathetic
  • Everyone has an opinion or viewpoint even if it might seem irrational or stupid compared to yours just smile and nod sometimes life is easier that way
  • Home renovations and interiors are a good way to distract from stressing about life’s bigger issues
  • Photography is therapeutic as is planning future travel
  • Charity work and donation to charity can help you to re-focus on the good in the world rather than the bad
  • When your life flashes before your eyes you want to try to ensure it is a good one
  • It can be very scary having to talk about your own funeral arrangements and organ donation but it is so necessary so please do that now.
  • Life is so precious and as clever as the top surgeons are they still don’t fully understand some things like hearts.
  • I’ve experienced a physical broken heart and an emotional broken heart and can tell you the latter feels worse
  • What is left of the NHS is amazing
  • Remember whatever happens there are more good in the world than bad even if at times it feels as though it is weighted towards those who are bad.
  • Hope is stronger than fear.

I have learnt that when unimaginably stressful events happen in a year the number of “learnings” or developments increase, so try to remember this if only once a year.  Hopefully we will all learn from the fallout from Brexit and the recent election. There is something constructive that can come from the most upsetting and distressing of situations if you really look closely.

For all those who have suffered loss this past decade please remember and recognise what an achievement it is to be a survivor after all you have been through.

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The dreamcatchers near Violet’s grave in the cemetery 

It is also possible to squeeze out a tiny bit of happiness from it all too.  As the legend that is JK Rowling wrote for Dumbledore ““Happiness can be found in the darkest of times, if one only remembers to turn on the light.”  So flick that switch or light that flame even if it is on a very tiny candle, your baby or babies will thank you.

If you only take one thing away from this and repeat it as a mantra in the mirror every morning throughout January it should be this…”You are amazing and whatever the future holds you can handle this”.  Here’s to the roaring twenties!

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The Roaring Twenties – Vector files

Love Sarah

Always Violet Skies x

You might be interested in these blog posts too –

New Year Learning and Growth

September = New Beginnings

Barcelona in winter with a baby

 

Future planning

Someone asked me recently what my plans were for the next 5 years. I laughed and said ideally I still want to be alive and I hope my family are all still alive too. Then I’d like us all to be healthy and happy. That’s about it.

A 5 year plan?

Not sure that was the answer he was after as he said I meant professionally and for your business. Well it’s not much use wanting anything work wise if I’m not here is it was my answer?

Maybe they shouldn’t ask parents of loss who have a heart defect that will hopefully be repaired before Christmas that question? 

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This heart image by The Gallery Wall UK sits on my wall in the dining room

I used to be a planner

I used to be into forward planning years ahead at least as far as work, holidays and home went but these last few years have taught me that there’s no point putting too much effort into future plans when something could happen unexpected at any time that can change your world in a heartbeat.

Now I try to live in the present

It much better to live in the present as much as you can and also to try not to dwell too much in the past either as there’s nothing that can be done with that now.

Don’t get me wrong I still plan a little because I have to with work or family plans but i only tend to plan a few months ahead at a time.

How about you? Are you a planner? 

Big love

Sarah x

Always Violet Skies

Future-planning-violet-skies
Do you plan ahead?  What’s your 5 year plan?

If you enjoyed reading this perhaps you might like to read these articles –

Four years a mother

A Broken heart

Mothering after child loss

November at last!

November is here at last and I say that not because it is a favourite month but just because October is finally over.  This year it was particularly tough.

October

I was supposed to be visiting Lisbon last week for my mum’s birthday treat but had to pull out and left her with my sister as my little rainbow baby was poorly so I couldn’t leave her at all.  The illness of my daughter combined with Baby Loss Awareness Month was the main reason October was super stressful and a tough month for us.

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A poorly rainbow

Our rainbow baby was the same age as Violet was when she died and she contracted pneumonia twice, which was exactly what happened to Violet before she was admitted to hospital never to return.  This is why this past month has been so fraught for us resulting in hardly any sleep; stress levels beyond belief, emotional meltdowns on a frequent basis and the consumption of a vast amount of comfort food/drink on a regular basis.

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Our fear – this was Violet the morning she died.

Expert jugglers

We also managed to still juggle work commitments, the organisation of a surprise birthday party for my mum and even had a drink out baby free for an hour or so for a friends birthday before hot footing it back to soothe a poorly baby.

Update

Health wise my daughter is luckily recovering well but we’ve decided to keep her away from nursery until the new year at the earliest to allow her lungs to fully recover and to ensure her immune system is back to full strength too.  We will continue to juggle work commitments and childcare thanks to the support from family and friends.  There’s no way we will risk losing this little girl too.

New parenting territory

It sounds strange but today I feel a little relieved because yesterday our rainbow reached the exact same age Violet was when she died so today she has surpassed her sister’s age by one day.  It makes no logical sense why I feel relief at this but my stress has lifted slightly.

Is this normal with rainbow babies?  Anyone else feel this way too?  Or am I just odd?  Please let me know.

So now we’re on totally new parenting territory as we have the oldest living child we have ever had and it’s all fresh new sailing for us from now on.

Hope you’re having a great start to your month!

Love

Sarah x

Always Violet Skies

You might find these blog posts interesting –

My story

Four years a mother

Once you’ve got your rainbow

Mothering after loss

All Saints Day

Never mind Halloween please light candles on 1stNovember to mark the first All Saints day today “Día de los Inocentes,” a Mexican catholic tradition that honours deceased children and infants. They are remembered on this day when the veil between worlds is thought to be the finest.

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All Saints day taken from Catholic Online

All Hallows Day

In Mexico, All Saint’s Day also known as the Feast of All Saints, All Hallows’ Day or Hallowmas is celebrated with the first day of the Day of the Dead (Dia de los Muertos) known as “Día de los Inocentes,” honoring deceased children and infants. The 2nd November marks a second day for all deceased. Some religions and cultures call November 2nd All Souls’ Day and this is the day that is often chosen for the Day of the Dead parades and celebrations.

Seamless vector pattern with sugar skulls and flowers on dark background.

Catholic tradition

Catholics traditionally take flowers to the graves of loved ones and Saints who are innocents on these days.  Perhaps you’d like to light a candle at home instead to remember those babies or children who have died on the 1stNovember and then again for any adults on 2ndNovember too.

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All Souls Day – photo from Wikipedia

 If you enjoyed reading this then you might enjoy these articles –

The real meaning of Mother’s Day

Traditional holidays are the worst

Four years a mother

Control freak

These last few weeks have been especially difficult for us as our rainbow baby is sick. We had to take her into hospital where she was diagnosed with pneumonia, which is what her sister died from. Back at home now luckily and she’s responding well to antibiotics but it is unbelievably stressful anyway without our history with her sister.

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A beautiful cloudy Violet sunset over our house last night

Lack of control

I realised a key reason for the stress of having a poorly child or loved one or heaven forbid their loss is the lack of control over the situation (unless you’re a murderer of course but that’s a different story!).

The fact you had no control in the end over whether they survived or not. You did everything you could possibly do but even that wasn’t enough and it is the acceptance that at the end of the day we really don’t have control over these things.

Poorly child

When our children are sick, again, it is the control issue that makes us super stressed. We can do everything we can possibly do to look after them. Give them antibiotics, fluid, pain relief, and take them to the doctors or to hospital. Listen to the “experts” and follow their guidance. Other than that there isn’t much more we can do. We are powerless and have to do our best then simply hope.

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Violet in hospital the day she later died suddenly

Regaining control on life

I think that is why after the loss of Violet and then Arthur doing things I have control over helped me to regain a little of my sanity.

Managing a house renovation and extension project was something I could control. Rehabilitating a German Shepherd from being a working dog into a family household pet again I could do and get some comfort from. Setting up a fund in Violet’s memory and organising a charity ball again was something I could control and work at organising. We have now raised a total of £42,860 for Alder Hey Children’s Hospital.

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Photo of our house during the renovation with Dexter our GSD in shot too

More of a control freak

Yes I admit I am probably more of a control freak in some respects than perhaps other people but after speaking to a few others who have had to endure looking after sick children or unfortunately baby or child loss it is this loss of control that is a tricky one to deal with.

My advice is to try to do other things you can control to try to balance out those things that you simply can’t.

Big hugs and lots of love

Sarah

Always Violet Skies xx

You might be interested in reading these other posts –

When you finally get your rainbow what then

Four years a mother

Surviving after child loss?

What’s in a name?

I was quite shocked by a conversation I had with an elderly lady when out and about with my rainbow baby. Perhaps she didn’t like the name Aurora but what do you think?

The conversation

This lady stopped me in a supermarket to coo and ahhh over her asking as most people do whether she was my only one or not.  I said no she is my third baby but unfortunately her sister and brother died.

The lady said she was sorry to hear that and what was her sister called.  When I said Violet she remarked about how pretty that name was. Then she said “so is that what this little one is called then Violet”.  I said no she was called Aurora but she did have her sister’s name as a middle name thinking maybe the lady had gotten confused or misheard me perhaps.

Our rainbow has her sister’s middle name in memory

She then said “what was Violet’s middle name”.  I said Elizabeth and she said “oh that’s a shame as Violet Elizabeth is such a beautiful name I’d have used it again”.  I was stunned.  Why on earth would I name my second daughter exactly the same as my first as though she’s a replacement?  I was dumbfounded.  I didn’t know what to say and just smiled then walked off.

Violet – a wonderful friend bought me this illustration

Where has this come from?

Then I decided to do some research into why she even had this belief and discovered during the Victorian era when child mortality was very high then giving a child the same name as a deceased older sibling was in fact quite common, especially if the child had been named after a parent.  If you look through archives you’ll often see multiple children with the same Christian name in a family.  I assume perhaps this elderly lady came from a family that had done just this so she felt it was a normal practise.

Some people are weird

I also think that some people are just weird.  I remember someone telling me that as a child her family’s dog was called “Ben” and today her family’s dog is still called “Ben”.  There have in fact been 6 Ben’s altogether.  To me that is very strange but even more so to do that with a child.

What do you think? Would you give all your pets the same name? Would you use the same name again and again for a baby?

Love Sarah

Always Violet Skies x

You might also be interested in reading the following –

Grief is like being shipwrecked

Grief, anxiety and confidence

Breaking the news of child loss to an old friend

10 Top tips to keep baby cool in the heat of summer

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A few days ago I visited Prague with my 11 month old rainbow baby. Ordinarily I wouldn’t go away in the heat of the summer as we prefer to holiday in autumn, winter or spring but hubby was on a conference for work so rather than staying home alone with baby for a week I opted to go over too.

Unfortunately we chose the hottest summer days on record for the Czech Republic for our visit which was stifling especially when lots of places there didn’t have air conditioning. Keeping baby cool was a challenge so I thought I’d share my top tips in case they’re useful for the rest of you.

Ice cubes for play time

If you’re out and about it can be hard to both entertain and keep an active baby cool. My top tip for this is to order a glass of ice cubes whenever you stop for a drink or food then baby can play and suck the ice. Having fun and cooling down at the same time.

Ice cubes the perfect baby toy to keep them cool on hot summer days – Aurora in Prague

Chew toys in fridge

If your baby like mine is teething then keep their teething toys in the fridge over night then they will be nice and cold for chewing in the daytime. A cool bag is a good investment for when you’re travelling as you can not only use it to store food and drink but also teething toys and cloths (see my next tip!).

Top Tips for keeping baby cool - Aurora chewing a chilled octopus teething toy
Top Tips for keeping baby cool – Aurora chewing a chilled octopus teething toy

Cold damp muslin cloths

If you’re heading out into hot weather I find chilling damp muslin cloths to take out with you can help to keep baby cool in their buggy. I even wrapped some ice cubes in the cloths and popped two either side of baby in her push chair when I had to venture out in 37 degree heat.

Large muslin cloths are a great investment to take out underneath the pram as when I needed to cool baby down rinsing one under cool water then placing over baby’s legs can help to cool them quickly.

Pram with sun shield factor 50+

It’s worth when you invest in a pram or buggy for travel that you get one that has sun protection built into the sun shade. Ours has factor 50 in the canopy of it which comes in really handy when we travel abroad as we then know even it we can’t find shade baby can sit in the buggy and will be protected from the sun.

Violet modelling the pram with built in sun canopy SPF50

Sun shade for snoozing

Another top investment tip is to buy a Snooze shade cover that is SPF 50 that will stretch over a buggy, pram or car set to protect baby safely while they sleep. The one we have folds down into a small pouch you can pop under the pram or into a change bag easily for travel.

Lots of people mistakenly cover their prams with muslin cloths or blankets to shade their babies but inadvertently increase the temperature raising it to dangerous levels that could cause death. Please for the sake of £20 invest in a proper shade cover.

Aurora modelling the snooze shade in her car seat in Barcelona

Home made fruit juice lollies

If you’re at home in the heat then you can make fruit and vegetable lollies easily for baby. You can even use ice cube trays for this. If your baby is refusing food because of the heat then this is a great way to encourage them to eat something.

Keep wet wipes in the fridge

This is an easy top tip that when I thought of it I couldn’t believe I hadn’t down it before. A cold wet wipe can be the perfect way to easily cool your baby down after time in the heat again you can keep these in a cool bag when you go out too.

Pop up play tents

A pop up sun tent with SPF50 is a great investment for play time on the beach or even in your garden at home. They fold flat so can easily be popped into a suit case.

Example sun tent from Amazon.co.uk £23 well worth the investment for days at the beach

Paddling pool DIY

If you’re travelling and baby is hot sometimes you dream of having their paddling pool from home. Recreate this easily in the sink of where you’re staying or even buy a cheap bucket or washing up bowl from a local store you can use as a little paddling pool to cool them down.

Ice cubes in front of a fan

At night without air conditioning it can be hard to keep baby cool. If you have a fan pointed towards them anyway then place a bowl or ice cubes in front of it so the air is chilled before it reaches baby. Or even place the bowl below the open window the breeze is come from. Home made air conditioning!

It goes without saying that sun protection is always a must for baby as are sun hats and protective clothing where best.

Happy travelling and keep cool guys!

Love Sarah

Always Violet Skies x

You might enjoy these other posts too –

A weekend in Switzerland

A Barcelona beach break

Top tips for flying long haul with baby

Four years a mother

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So four years have passed since I first became a mother since then there have been many ups and downs.

Happy 4th Birthday to our darling daughter

Ups

The ups have included meeting and getting to know two baby daughters. We travelled round the world with both our daughters having lots of adventures. 

A sleeping Violet on Singapore airlines en route to New Zealand

Our first Violet survived for 15 months and the second Aurora who is thriving, approaching her first birthday. Then in between there was Arthur who we never got to meet properly but held him in our arms when he was born sleeping at 22 weeks. 

Downs

The downs have unfortunately seen us nurse a poorly baby, wave her off for open heart surgery, sit beside her on two separate occasions in hospital and then unfortunately watch her die. Then we had the trauma of a funeral and subsequent coroner’s inquest to try to find out why nearly two years later.  We also had to make the difficult decision of TFMR seeing us say goodbye to our much wanted baby boy Arthur (read more about it here).

Even though the past 4 years have seen the most traumatic times of my life they have also been some of my happiest so if I had the choice to change things and not become a mother I would refuse. I’d take the pain in exchange for the joy everyday.

Aurora playing with a Violet balloon at the Chorlton Communities celebration

Last few weeks

The last few weeks have been quite tough emotionally, so please forgive my break in posting on here. I did question whether to continue sharing with you all or not and then I got this message through this website

“I hope that this finds you well and that you don’t mind me writing to you.
I am so very sorry to hear about the losses of Violet and Arthur, I cannot even imagine what you have gone through and still continue to go through. I just wanted you to know that reading your work has given me comfort and made me feel a great deal less alone during my own sleepless nights during the last two months, and to say thank you to you for this. I had a tfmr in early April and my husband and I lost our desperately wanted and adored little boy at almost 22 weeks gestation (the first child for both of us).”

This wonderful message reminded me why I started this and how important it is. If I can help at least one person to feel less alone then it’s a success I think.  

Wonderful friends

A wonderful friend from my past also got in touch making a large donation to Violet’s fund out of the blue meaning we have now smashed the set target to buy a cardio echo machine at £37k and what she said to me meant a great deal too.

“Your story has touched me for so long and when I seen the message on the alder hey group last night I wanted to help. With violets birthday coming up soon you will be able to give them that much needed equipment in her name. Stay strong Sarah you have inspired so many women including me xxx”

The birthday party organised for Violet by the amazing Meg at her nursery

So to her and all those people who have held events or done amazing things in memory of my beautiful, should be 4 years old, daughter a massive thank you. You are all fantastic and this keeps me standing.

Love Sarah

Always Violet Skies x

You might also find the following posts interesting –

When you get your rainbow what then?

Mothering after loss

Making over Motherhood