Fliss: Letter to my Ayla

19^th September 2012 

My darling, beautiful Ayla,

A year ago today I was hoping that you would be facing a heart operation when you were only one month old.  What sort of a wish is that? One where you would still be here, you would have had a chance, a good chance, at life.  A year ago today I had no idea, absolutely not a clue, of the horror, the heartbreak and life and soul changing devastation we were about to go through.  From the moment that test showed two lines I felt so different than I did with your big brother.  There wasn’t the excitement I had with him.  Happiness – yes, I was very happy but I couldn’t shake this feeling that something wasn’t right.  I didn’t dread miscarrying, I expected it and was almost surprised that every week you were still there.  I didn’t want to miscarry sweetheart but maybe I knew that I would lose you in some way?

We had an early scan and again I expected to be told that the pregnancy wasn’t viable, there was no heartbeat, something.  The 12 week scan I expected bad news again but there you were waving at us.  But not moving, not like your brother did.  Your Daddy questioned it but the lady said it was fine, our first sign? She couldn’t do the nuchal measurement because you wouldn’t change position, the first sign you would be doing things your way.  I didn’t mind because I knew termination would not have been an option for us.  Even those scans didn’t relieve that worry deep in my heart.  Please sweetheart, don’t think I didn’t want you, I did, I do, so so much.  I knew you would be a girl but I also knew that you were poorly, on some level at least.  I never, not once expected you to be as poorly as you were but I knew something wasn’t right.

We sat outside the room where we were to have your 20 week scan.  The scan that people normally get all excited about, seeing their baby looking more like a baby, finding out girl or boy.  I didn’t I felt sick with fear, I sat there rocking back and forth, looking back now I knew so much more than I realised at the time.  That scan was the start, the real start of your story.  Your miraculous battle to make it into the world.

A year ago tomorrow we heard the words ‘Your daughter has Edwards Syndrome’.  We had no idea what that meant, how big it was. I hoped it would mean you would be disabled, need special care, have special needs, I never imagined, never, that it actually meant we didn’t get to keep you.  Babies don’t just die because their genes aren’t right, there must be something that can be done, surely? How little I knew then, how little I understood.  How much I know now.  Its hard to remember ever being that ignorant, that naïve.  Before we had that phone call, whilst waiting for the results I remember standing at the fridge thinking about the possible dilemma we could be facing, let nature take its course – give you a chance, or end your story prematurely.  Live with that the rest of our lives.  I stood there thinking this all through, round and round and you, you flipped inside me and gave me the biggest series of kicks and movements as if you were saying, no, shouting at me ‘GIVE ME A CHANCE, I’M HERE, I’M FIGHTING, GIVE ME A CHANCE!!’ and that’s when I knew without a doubt that there was no way, no matter what the diagnosis, there was no other option for us but to carry on, give you a chance, let nature do what it needed to.

It led to the hardest, loneliest time of my life.  I didn’t want to be pregnant anymore; I just wanted it all to go away.  Go to sleep and wake up when it was all over.  But I loved you, oh I loved you so much by then, I was, am, your mummy and I would do anything for you.  I do not regret giving you that chance, not at all and I never ever will.  My love for you is overwhelming, all consuming and everlasting, just like my love for your brother, because I am your mummy.  I can no longer do anything for you so for those 5 months I am glad I did everything I could for you.  I do things to keep your memory alive, show my love for you to the world but it’s not the same, you are free now, you don’t need me.

The guilt I felt and still do in some ways at not being able to protect you, make you better engulfed me for months.  Why couldn’t I make you better? That’s what mummies do, give magic kisses and cuddles, go to the doctor, whatever it takes to make their children better.  But I couldn’t, no matter how much I wanted, wished, begged, I couldn’t.  There was nothing I could do but give you a chance and hope, every decision I made I did what I felt was best for you and I hope you know that my darling and could feel my love for you every second of every day you were here and every second since you went, since we had to say goodbye and give you no more cuddles and kisses.  When I broke inside, never to be completely fixed again, to always have a hole in my heart, a piece of me missing.  Every happy occasion, smile, laugh tainted with the pain and sadness of you not being here, someone missing from our family forever.

So what do we do now? We miss you every day, we light candles, we send you balloons, we talk about you, to you, we see rainbows, sunflowers, butterflies, stars, blow bubbles and think of you.  We use you to drive us in our new perspective on life, we hold you in our hearts as we try to move forward, sometimes stumbling, sometimes slipping back and sometimes falling flat on our faces, but we get back up and carry you with us in everything we do.  Because we love you, forever and always,

Watch over us baby girl and know you’re always with us, 

All my love, 

Mummy xXx