It has been SO LONG since I blogged, but there are reasons for that.

Firstly, Violet had her operation (which I blogged my way through) in December and her recovery (and ours) lasted several weeks… completely through Christmas and in to the New Year.

We had our first Christmas as a “family of 5” and battened down the hatches.  We were emotionally and physically exhausted from the whole ordeal so a quiet Christmas was just what we needed and it was perfect.

I had one wish for 2013… That wish was for us as a family to have an easy ride.  For my girls to be problem / illness free, for me to have a “boring and uneventful 2013”.  In fact, my exact wish at the beginning of 2013 was for me to get to the end of the year and be bored.  I wanted simplicity, I wanted nothing.

pancake day!


So, the sad news is that I didn’t even get 2 months in to 2013 without the most horrendous thing happening.  My mum passed away on the 25th February.

Suddenly, unexpectedly, out of the blue and not without some blame being placed on the paramedic who was called to her side the day before she died.  A misdiagnosis of epic proportions will leave us wondering for the rest of our lives if she would have survived had a different paramedic showed up that day.  That, in itself, is another story.

Ava & Violet

So now I have to carry on without the safety net of my mum.  There is a huge void in our family, huge.  She was the centre of our family, the glue that held us all together.  She drew us all in, she protected us.  Me and my mum clashed frequently – we would argue and fall out over the silliest things.  We could go weeks without speaking… There is no way I would want to change the way our relationship was, because it was as it should have been.

Ava’s 5th Birthday

Life without her is going to be so very different.  She had such an interest in Seren and how she was developing.  The fears she had for me (no one wants their child to have a “hard” life) were alleviating with every month that passed, as she saw how amazing Seren was and she was so very proud of her.  She was proud of all her granddaughters (she had 5), but there is something quite magical about having a child with Down’s syndrome.  People around Seren are all learning a few lessons – humility, compassion, patience – and amazement at what is possible DESPITE having an extra chromosome.

World Down Syndrome Day!

Grief… it is an unimaginable emotion, until you have experienced it yourself. Everyone deals with grief differently, and every relationship you have with people is different and so losing people means one thing to one person and another thing to another person. Even children in a family will grieve the loss of the same parent differently. No way is right or wrong, and emotions spew forth uncontrollably at times.

Finding a new equilibrium is hard.  Finding boundaries, finding our way…  My children keep me going – they are the reason I get up in the morning.  I am determined that they will feel open and comfortable talking about their Granny, that we will chat about her as if she is just away on a small trip.  I think Ava will probably remember her in the future, but Seren and Violet wont.  They will just have the photo’s and the stories that we share with them.

At the minute, the only thing that is a constant in my mind is my mum… waves and waves of memories and sadness seem to flow continually through my mind all day, every day.  I am distracted, forgetful, preoccupied… Of course the children notice, but I include them, I tell them how I am feeling and why, and on the whole I think they are dealing with their Granny’s loss, and my sadness, brilliantly.  Kids are so adaptable.

My big girl

We have also had some major milestones come and go in the last weeks – Violet started crawling on the 14th February.  Our Valentine’s gift from her.  We were so proud!  Seren is making more and more effort with speech sounds, and we are pretty sure its because of Violet.  Violet is now rapidly catching up to Seren in terms of development and size, and I think in the next 12 months she will probably over take her.  Ava and I went on our first EuroDisney trip together (with a couple of friends – it was booked before my mum died), and we had a lovely time.  She turned 5 a couple of weeks ago and she is the most amazing little soul, I feel so lucky to have her, she is a sweet, kind, lovely, caring and compassionate girl.


Seren is still loving preschool – I have the dreaded DLA form to fill in, which I still haven’t done… In light of everything that has happened with my mum, its just been sidelined.  I must get on with it.

Violet was signed off from Great Ormond Street in January and had her first post-op ultrasound in March which came back clear.  She will need ultrasounds every 6 months for the next couple of years, but we remain hopeful that she will be fine…. even though I know optimism is a dangerous thing, especially for me.

So hopefully my next blog post will be filled with a bit more *happiness*.  At the minute, I am existing on a day to day basis, trying to make sense of what has happened and doing the best by my kids.

As ever I am grateful for my community and wonderfully supportive friends.