I survived Christmas

So I’ve survived Christmas just about, it’s certainly had its moments. Having a toddler again after such a long time has brought back the element of magic into the season. The excitement of Santa isn’t the same for stroppy teenager and young adults as it is for a three year old. It’s been wonderful for me to allow the joy to be central again. I’m not saying my three girls don’t bring me joy but not one of them would put a mince pie out for Santa or a carrot for Rudolph, I mean how rude.

Christmas hasn’t been the same since Livvy passed I cannot try and pretend it is but this years was special in its own new kind of way. Daniel does in no way replace Livvy but his new dimension is certainly one of innocence which until now looking back I didn’t realise how much I missed. Whilst Livvy often found Christmas overwhelming her excitement and giggles certainly did bring upliftment.

In fact her inability to handle the stresses of the season made us all slow down and work out what was actually needed to celebrate. Not held down by the unrealistic expectations.

Christmas should be a time of celebration of togetherness. The gifts we share aren’t about the cost involved but the fact that we love one another.

For me personally it’s a celebration of the birth of hope. I celebrate the promise that one day my heart will be whole again.

So I’m hoping you have all had a wonderful celebration. I hope Santa has brought you all what you wished but most of all I’m hoping the season has brought your memories to cherish.

The greatest gifts ever xx

No drama

I had a friend once, I use the term friend rather loosely now but then she was what I would class as dear to me. We had walked though a lot together and I assumed we would continue to do so.

Then when in the midst of Livvy’s regression I was crying down the phone to her when she uttered the words that have scarred my heart for such a long term “I swear your life is like a trashy soap opera, everything happens to you, or maybe you just like the drama”.

I remember the impact of these words as if it was yesterday. How anyone could believe that this was the journey of life I had wanted to take was beyond me but to accuse me of being dramatic hurt. In fact it hurt so much that I shut down, I didn’t allow my feelings to show. I closed the door on that friendship and many others in fear of judgement.

Why am I telling you all this?

Because I am in a place now where I am ready to own my own story. Ready to embrace what I have lived, not with echoes of shame but with pride.

Having a child who was born with a debiliatiting condition was hard but not knowing what it was and not expecting it was literally a nightmare. I cannot find the words to explain how painful it was to lose my daughter to Rett Syndrome, twice. Watching her eyes leave my face, her words disappear from my ears and her movements lost to the stereotypical.

To see the fear in her eyes as she screamed and screamed, crying out for me to rescue her. It broke me in inside, I cried out to God so often to heal her.

But he didn’t.

Yet slowly and surely he healed me.

I finally began to embrace the journey I was set upon, although it was very different from anything I could have ever imagined it was full of wonder and joy.

Joy, does that surprise you?

My daughter had a severe devastating condition, my son has a very complex disability but both of them loved, loves life in a way that brought, that brings me so much light.

It’s took me a long time to get to a place where I don’t apologise for what some see “as drama” in my life.

I have surrounded myself with people who get it or who try to understand it.

I have walked away from those who don’t or who don’t want to.

I can accept that some people cannot understand the life I lived or now the life I have chosen and that’s ok.

We are never going to be a typical family and I am embracing that, celebrating that.

Yes at times I am lonely and I do get sad at having to apologise for another missed get together, group activity or friendship meal.

But my children will always be my first priority, always my heart.

I don’t know if my friend understood the impact of her words or how they would change me inside. Maybe it was meant as a throw away comment that wasn’t supposed to find roots and bury itself deep.

Maybe it was my state of mind back then that fed and watered these seeds of deceit.

I don’t know and I actually don’t care.

Because I’m not that person anymore.

I cannot say that harsh words don’t still sting or dig deep in my heart, but they don’t get to stay and or get to take root anymore.

I am stronger than I have ever been.

I have faced the darkness of death and my memories, love brought me the light.

I face the suffocation of fear but my sons smile breathes air into my lungs.

My children are my world, they are the air that I need to breathe.

I am stronger for being their Mama.

My faith is stronger than my fear.

Only

There is no time limit on grief, yet recently after spending an afternoon with another bereaved mother I do wonder if the rest of the world has not got this memo.

Is there an unspoken, unwritten set of rules that no one has let me in on?

It breaks my heart to hear another who feels she needs to say no more because her loss has been years not days. Worrying that others will judge or be fed up of her pain.

I so get this, I so understand the agony of the awkward silence. The fear that you will ruin people’s moments.

The pain of loss is timeless, your heart is forever missing a piece.

Yet the world still carries on and time still passes by.

If only the world could understand that our world has forever changed. That the next breathe in will always be different to the one before.

If only people wouldn’t expect us to be the same people we were before, we cannot and never will be.

You see the loss of a child is like no other, I make no apologies for stating that because it isn’t.

A child is a little one full from the top of their heads to the tips of their toes with dreams, aspirations you have for them.

What would they look like, whose characteristics have they inherited?

Will they love music, books, to dance?

Will they prefer science, maths or English?

Will they fall in love, be happy and content?

Can I keep them safe and protected?

From the moment that you hold them in your womb, your arms you life’s destination is their happiness.

Your life’s work is their hearts.

So how can your ever be the same, how can you ever get over it?

How can you ever breathe completely again with a missing piece of your heart.

If only.

* Joining in again with Five minute Friday, take the prompt of the week and let’s the words flow.