Saturday, August 4, 2012


For everything there is a season and a time for every purpose... under heaven

Following the death of our daughter , Estella, last November I knew two things. I knew that I had to do what I could to alert the world about SMA and I knew that Maria had to one day become a Mummy again.

I'm OK at this Daddy lark. I have my moments but Maria is a natural. She cared for Estella with such love and devotion and ever since we had to say goodbye to her I have seen a Mummy who has had her soul and heart ripped away. It was essential that this devotion should have a child to be bestowed on.

We had made our peace with a number of things during those sad, beautiful, tortured, memorable days that Estella was dying. I had sat by her bed and explained to her that although we would want another child they would never replace my Tinker in my heart. I asked her permission to let life carry on and asked her to give signs that she was OK. Of course there was guilt with wanting another child - of course there have been moments when I have asked if it is fair. Of course Estella was my cheeky monkey.

We were originally going down the IVF route. By doing that we could guarantee that our next child would not be cursed with SMA. After a couple of months of discussion though we decided that the odds were low and that the route had its own problems. So in May we decided to go for the natural method and to hope ...

And that's what we did.

The odds were in our favour but still amazingly scary.

By the natural method there would be a 1 in 4 chance that a new baby would have SMA
There would also be a 2 in 4 chance that the baby would be a carrier of SMA

Then things got worse

Maria was told that her reserves were low. On the score system they use she needed to be 16 and above to be fertile. She was a 2.

Maybe all options had gone

Within three weeks of trying Maria told me one morning that she was pregnant.

And then the waiting began

At first the wait was OK. We knew that the odds were probably in our favour and rested on that but as time went on we started to worry more. Maria told me every morning how big the baby was a pea, a bean, a cherry, a strawberry and she was also being incredibly sick.

This was becoming real

No test can be done on the placenta DNA until the 11th week. When that test is done the result takes about another week. We were clear - if this was SMA then we would have very difficult decisions to make. If we chose termination it would be done within a day or so.

The problem was though that we had already seen the little bump twice on a scan.

The shape was very clear. The hands , the legs, the head and the beating heart.

Last Tuesday we went to do the examination that would decide the future. While they took their sample through a very big needle poked into Maria's tummy the bump was kicking its legs and waving. I sat watching and saw it wave. I thought it was waving goodbye.

We knew that we had to wait until the following Tuesday for the result.
Yet this Friday morning when we woke up ( yesterday ) we knew that this would be the day.

Maria received the phone call at work and rang me.

It was healthy and it was a girl.

And in that moment the rooms and the conversations and the tubes and the held hands and the smiles and the heart stopping moments and the bluebells and the songs and the rhymes and the tears and the goodbyes and the decisions and the revisions and the nights and the bent knee prayers and the cuddles and the dreams and the dragons and the lights and the dawn and the last gentle touch of her gorgeous hand - in that moment all the moments became a  moment.

and I felt nothing but calm.

We are going to have  a baby girl next February. The baby will arrive on , or around , Estella's birthday.- if there's anything that tells me that Estella is cool with that then that is the fact.

When Estella was very ill Maria made her a very fanciful promise. She said that we were sorry that we had made her a body that was so little and beautiful but did not work. She said that we would go away and build her a little body that did work.

and we're not stupid and we're not deranged we know that this is a new baby and we know it's got its own personality and its own ways - we know that it's not Estella - but I tell you this - when she raises an eyebrow at my singing or smiles when I cry then maybe , just maybe the world will stop for a second and we can all remember our greatest human achievement - the capacity for wonder.

We are happy beyond words

For clarity though

The fight against SMA was never about us, or Estella

It was about the generations yet to come.

This baby has not got SMA - we got lucky

But as long as there are babies who are born with this horrendous disease I'm gonna keep telling people about it. I'm going to complete wish number two.

Wish number one - Maria will become a Mum again ( box almost ticked )
Wish number two - SMASH SMA - still working on it

Last thoughts

I'm about to go on a great adventure. At the end of the rainbow I become a Daddy again. Tomorrow morning though I am going to see Tinker and I am going to thank her

and I am going to take her a toy

and I am going to tell her that I love her more than anything in the whole of creation

Because I have to take care of her

Because she takes care of me



There are a couple of people reading this that I want to say sorry to. One of the hardest parts of the last 9 weeks has not being able to tell them what was happening or ask their advice or seek their support. I hope they understand.


  1. Lovely ... thanks so much for sharing with us x

  2. Again as I read your blog I am in tears. But these are more tears of joy and hope for the future. I'm so glad that you are going to have another little girl. Thank you for sharing this fantastic news with us all.
    I will continue to help to smash SMA with you for as long as it takes and for as long as you need me.
    God bless. Xx

  3. Beautiful and very moving post. Estella's life may have been short, but she lives on forever in your hearts and nothing will ever change that. Your tireless work to bring SMA to the attention of as many people as you can is her legacy and will not be forgotten.
    Im sure I speak for everyone else whose lives you have touched, when I wish you all the very best health and happiness.
    May the saddest days of your future be as the happiest days of you past.

  4. very well put. you and maria are such an inspiration, and i am sure that little tink is giving you her blessing. losing a child is devastating, there's no pain like it, and it doesnt ever go away, but when you're blessed with your bundle of joy, it makes that baby feel so very special, and you feel that your baby is the greatest gift. that good feeling doesnt go away either. i have two beautiful children. i have lost four, and they will always be in my heart. i wish you all good luck, blessings and joy.

  5. The bestest of luck and love to you all. I am
    Sure everyone is with you every step of the way and this little girl is born into the world of love and happiness. Moving and perfect. And honest xxxx

  6. You're an amazing daddy, and both your daughters are very, very lucky to have you. Congratulations, wishing you every joy with the precious second daughter and a very happy and healthy remainder of the pregnancy for your wife. xxxx

  7. God bless xxx very sweet and moving! Xxx

  8. congratulations to all of you. :)

  9. Congratulations, god bless you and your family.