Saturday, February 2, 2013


Yesterday I got one of those heartbreaking messages that I have seen all too often during the last year.A Dad wrote to tell me that he had lost his son aged 18 months to SMA. I wrote back with my condolences and my usual offer of any help and support and then received a response asking how to cope with the loss.

I will not go into this individual case but lay awake last night I did wonder if it was worth putting a few notes on here that may one day help somebody with their loss.

The first thing to say is that I am very aware that every circumstance is different and I know there is lots of amazing professional help out there. I would not dream of trying to say that there is a particular way of dealing with the death of a child. There simply isn't.

What I can do is give you some thoughts as to what happened with Estella and hope that some of these words can make a small difference.

I know the reason we get asked how to handle this particular situation is because it appears that we have managed to handle the events that occurred in a particular way. I will elaborate on that later.

Here's how I see things.

There is nothing more devastating than losing your child. It is more than a cliche to say that it is unnatural for a parent to outlive their child but cliches exist for a reason and the first feeling when you lose a child is the sense of unfair and harrowing loss. I can not even begin to imagine how it must feel to lose a child suddenly - as in the case of an accident - no time to prepare. No time to even wonder about any consequence.

We lost Estella over a period of six months from her diagnosis at 8 weeks to her death at 8 months. That period of time allows for a lot of talking and a lot of planning but you are still not prepared or ready as the day your little girl says goodbye is not known. SMA is a cruel and heartless disease. The best way I can describe what happens is that there are a number of very bad days when Estella had some occurrence such as a blockage that prevented her breathing that she overcame. Upon overcoming though she never returned to the same health she had before the attack. You don't see a gradual deterioration you have days when certain skills and abilities are lost never to be recovered. The blessing is that this gives you the pleasure of many good moments and many triumphs and some of my happiest memories are of singing to the little tinker or just sitting for hours stroking her hand. In every moment of pleasure though there is an enormous black hole inside your soul that aches beyond anything I can ever explain. It is constant. It is frightening and it is tragic. You are watching your daughter saying goodbye at the same time as you are watching her grow and develop. There are many moments of silence when you sit alone and scream inside.

Eventually though we had to say goodbye to Estella. There is a longer description elsewhere in this blog of that Sunday afternoon for the purpose of this let me just remind you that her death was painless , measured, timely and beautiful. We were able to hold her one last time without her breathing mask and the machines and the tubes and for one last time we were able to kiss her and say our final goodbyes. The word beautiful sometimes confuses people and may even offend them. Let me explain. We had had many meetings with people who explained all of the possible options and scenarios that could happen at the end and believe me there were some horrific ones. In the end we had the best possible farewell. Maria held Estella. I held Maria and we saw our daughter fall asleep. We felt her breath and watched her calmly pass with no pain and none of the horrific possibilities that we had been prepared for, We bathed her. We held her. We dressed her. We said farewell.

So what happens next.I still say that one of the most terrible moments I experienced throughout the whole six months was the unbelievable discussions where you have to sit in a room preparing all of the details for your daughter's funeral. The decisions. The choices. The numb disbelief that you really are talking to people about the type of coffin and the music and the service. Beyond the funeral though there comes the worst bit - the loss.

OK. You leave the crematorium without your little girl. You have to walk away leaving her behind. You're not going to see her ever again. It is the emptiest and most barren feeling anybody could ever experience. You drive away without your little girl.

There is then no pathway that anybody can ever tell you how to tread.

I felt guilty. I am a big hunking lump and I could not protect my little girl from this ending. Nothing I could do could make this disease go away. I promised her I would do what i could to try and help others but there was nothing I could do. I could not help Maria with her loss other than realising whatever I was feeling this generous, gentle perfect Mummy was feeling a hundred times more. I was useless at caring for Estella. Some days I would have to go and walk around the gardens of Bluebell Wood for an hour but while I did that Maria looked after every tube , mask, food issue - Maria very kindly always said that she was maintenance and I was entertainment.I got a couple of hours a day to read Cat in the  Hat to Estella and I watched her eyebrow raise in speculative laughter at my tales and songs and tickles. Part of my guilt was wondering if I had done enough as a Daddy. At worst I would think to myself that what I gave to Estella was a disease that was in my genes. That was my present. When those kind of thoughts crept in I managed to deal with them by a kind of logic. Maria also carried SMA so if it was my fault was it also hers  ? Of course not that would be stupid to think - so if that was the case then it wasn't my fault either.

You feel guilty though. You feel guilty any time life becomes normal. I remember watching an episode of Father Ted and laughing at some silly Mrs Doyle comment and then absolutely hating myself for daring to laugh when my daughter was dead. There is one way of thinking though that Maria taught me ( are you starting to grasp how strong she is ) - all she said to me was , "Is this how Estella would want it ?" It's a perfect way of thinking. Would that clever and intelligent and sensitive little girl want Maria and I to be unhappy forever or would she want life to carry on. Would she want us to remember her with fear and whispers or with happiness and wonder?

The next fact is that if you lose a child you are about to go through the biggest challenge to your marriage that can possibly exist. Many couples end up divorced. Fact. I think we survived for a very simple reason - no matter how low we got we never - never-never blamed each other for anything that happened. I blamed myself. Maria had days when she blamed herself but there was never an instant when I blamed Maria and she never ever blamed me. Maria gave Estella the greatest, most amazing support possible. She lived by Estella's side, She kept me and her parents sane. She made decisions. She fought for Estella when she needed to fight. She kept her alive at least a dozen times. Never blame each other.

SMASHSMA helped. It gave a focus and passed many hours building up the awareness that is explained in other sections. The point here that I would suggest is that there will be people who want to help you. Let them because they are exceptional people. Some people will not know how to approach you or what to say. Of course they don't - its an experience that they will hopefully never have to feel. Don't turn them away though - take all the support you can. It makes you stronger.

There will be certain days. Anniversaries. Birthdays. Christmases - so many occasions and moments. Handle them by accepting you will feel bad. Lock yourself away. Take yourselves away. You know those days will hurt so don't pretend that they will not.

The one thing I don't know how to prepare for though is the thing that happened a couple of hours ago. That thing will happen thousands of times.

I was driving along the motorway. A winter afternoon. Listening to football on the radio. Looking at the traffic. Mind in neutral. Then I noticed how gorgeous the sun seemed streaming through the trees to my left as I drove. Winter sun is white and sudden and hauntingly beautiful.
Bam - thirty seconds later I was still driving with face soaked in tears and my heart pounding. Total loss of sense and calm as from somewhere buried within I could see , hear , touch , smell and taste every single thing about Estella. It came from nowhere. No preparation. Crying Muppet Daddy filled with memory and sensitivity.Somewhere within the neurons connect and all of the pain and all of the hope and all of the memory and all of the tragic silent certainty of death comes howling into your heart and soul. I can't prepare anybody for that and do you know - I wouldn't want to. I would not want those moments to stop ever because when they happen I can.. feel her again. The tears flow and the emotions rage because in the end all of the techniques and all of the coping strategies and all of the logic is absolute nonsense. You lost the most treasured love you will ever know and you are not supposed to accept it - you are not supposed to block it - you are not supposed to forget it.

How to cope with those moments. Be grateful that you can feel. be grateful that you can remember. Be grateful that for 30 seconds she is with you again. That's the way I flip it to welcome the sadness because always, always, always when the tears stop , when the shaking stops, when the heart beats still again you are left with the warmest of feelings. You are left with the glowing memory of the reality of the child you lost

And every time that happens you find her again. I'm a soppy git - I see these moments as Estella coming to visit me and when she does ? She doesn't want to see her Daddy crying - she doesn't want to see him upset so if you ever see a wet faced Muppet singing Puff the Magic Dragon or Moon River driving down the motorway don't point and laugh too loud - it's just me or somebody like me remembering better days .

I don't know if any of that helps. I hope so. What I will say is what I always say. I will do what I can to rid the world of SMA but in the meantime if there are any parents that I can help in any way - then the answer is very simple. tell me where - tell me when and I'll be there.

Maria and I decided very early on not to go along to support groups and memorial groups and the like - it's not us. We visit Estella. We talk to her. We're even making another baby :) for her to laugh at and look after but as for dealing with losing Estella - we will not be able to do that ever. Part of being a Muppet Daddy and a Cuddly Mummy is refusing to accept that we have lost her. I don't particularly have religious views - sorry I don't - but what I do know is that life goes on, nature is beautiful and by some unbelievable wonderful quantum physics riddle of the universe kind of thingy - ( technical term ) I will hold her again . I will.

I miss her but she came to visit two hours ago. Tricky little Tinker.




  1. Tom this post is just beautiful - you and Maria are amazing. I have never experienced and hope never to experience what you have gone through - but your posts gives people hope, i just know it. You and Maria are helping so many grieving parents, i am so glad i found you on twitter and you are part of my (virtual) life, i just wish the circumstances were so different - when i know there are people in the world like you guys, it can't be a bad place to be. Much love to you both on remembering and spreading awareness of beautiful star Estella and I also hope all goes well with the soon arrival of Cristina, i feel like i know that little girl already through Twitter ;) xxx

  2. Entertainment form Muppet Daddy is just as important as maintainance from Cuddly Mummy , always remember that xxx