I seem to become increasingly anxious.  Anxiety and intense grief do battle in my head and heart constantly.  I have only 10 days until baby will be here, but I am finding the terror hard to bear.

Poor Drew is having to put up with a lot and is doing his best to keep me calm whilst dealing with his own grief and worries. For us, our experience of parenting has always been tough. Sadie was wonderful and we enjoyed every moment with her, but it was so hard too.  It was very intense - always knowing she was going to die, whether it be in the next moment or in the next few months (or even years in some cases).  There was no let up from that.  When I became pregnant seemed to coincide with Sadie's health deteriorating.

I remember the last lovely day we shared as a family.  I had found out I was pregnant only the day before and the 3 of us went into Tatton Park gardens.  Drew had taken a holiday and it was a gorgous day in early June. Sadie was happy and we sat under a tree and ate ice cream whilst she kicked about on a mat and gurgled cutely.

After that, I became exhausted and sick with early pregnancy and had lots of bleeding too.  Sadie became restless and began to struggle feeding.  Eventually she would spend long periods in pain and discomfort whilst we tried to soothe her.  Her pain relief was always being increased but the morphine quickly began to lose its effect.  Drew would often have me calling him at work or even when he was doing a grocery shop because we  needed to make fast decisions about pain relief and how to help Sadieand sometimes that needed both our input.  Often Drew would get home from a long day at work and I would have to hand Sadie over to him as I needed rest (something I did not do lightly!) and he would then have to handle the stress of keeping her comfortable.  It was the hardest time and we just struggled through each day.  We had no time to be scared - we just had to get on and do the things Sadie needed from us.  Awful things that a parent should not have to do - administering morphine and medazolam, re-siting her feeding tube and praying that she would be peaceful.

So although our experience of parenting was beautiful and although we are glad we had so much time with our precious girl, it wasn't the experience that most parents have and we feel like we are on the edge of something but have no idea what.  All we want is normality - for our baby to be healthy and happy.  We can handle that.  We will LOVE that.

I can hardly imagine coming home next week with a healthy baby in our arms.  I can hardly dare to believe it.  I am scared, but excited. 

I am so grateful to friends and family and especially Drew for putting up with my craziness.  I am not easy to be around and I promise I fully intend to be normal and level headed and HAPPY again very soon!  I know the grief will always be there.  I kind of accept that as thats part of my relationship with Sadie and Drew will carry this too, but we also have the capacity for happiness and we are looking forward to enjoying that simple feeling.