Monday, 15 April 2013

Nicola: Life After Loss

Is there life after the loss of a child?

I breathe, I am a mother to my children, I am a wife, I work, I can function on daily basis so there is life... but it's not the same life.

We lost our beautiful little boy when he was 2 years old. Our first son, Ethan: our world, our reason for being. He was born early at 33 weeks and due to NEC he became extremely poorly. He suffered numerous medical complications and, as a result, many life-saving operations before he was 10 weeks old. He was left with Quadreplegic Cerebal Palsy and other medical conditions. We embraced life with our son. Living a happy family life with a fair few visits to hospital. Ethan always bounced back, he was such a fighter. In May 2010 he contracted Parafluinfluenza type 3. The specialist told us even healthy children can't fight this this. Although in my mind I knew this was the end, my motherly instinct was stronger and I knew we had to give him every chance. And we did... until I could see that he was so weak and had fought so hard that he was exhausted.

I made the decision to let him go. To let him die. Me... his own mother... At the time I was disgusted with myself... angry. A mother protects her children, she doesn't let them die. I always vowed I would do what was best for Ethan. Now I can see that it was the best decision for him. The other option would have been to ventilate him and I knew he wouldn't survive that. The specialist said he wouldn't survive that. That would take away all our choices for him. He would die in hospital instead of at the hospice where he had friends, who were like family.

Ethan passed away peacefully in our arms in the hospice, where we stayed with him until the day of his funeral: protected, nurtured and loved. We were lucky, we were so lucky. The minutes, hours, days that followed are so blurry. Do we all count in that time frame at the beginning? I am now at years and they have passed so quickly. I am further away from my last kiss, my last cuddle, that last smile. His clothes have lost their smell of him. Realising that was a very hard day.

Is there life after loss? I guess the answer is yes. Yes there is. However, it's a different life. A life that will always be bittersweet: where every happy moment will be filled with that sadness that Ethan isn't here with us. Although no longer is every day filled with that heart-wrenching feeling; the feeling that my throat will close over and that my heart and head will burst; that feeling of never ending sadness, I still grieve every day. I just grieve differently than at the start. I have always grieved openly, cried when I am sad, spoken his name, included him in everything we do. From lighting candles to making pictures on the sand. I write his name in cards and have baubles for him at christmas. He will always be our son, he isn't with us but is now all around us.

In the past few years since Ethan's death, I have went on. It was hard at first, it was so hard. I cried every day and night. I went back to work whereas before I was his main carer. I focused on going to university and gained a BSc. I now work as a nurse in children's palliative care. Maybe I can offer parents something extra. Maybe... I can listen better and help them create memories. Maybe if I can help just one family our terrible loss won't be in vain. Maybe I can change all the negative about the experiences families have. In my heart, I really wished Ethan would be the last child ever to die.

There is a different life after the loss of a child. There are dark days still but I embrace them. They are dark because I loved my little boy so much. I loved him and no matter how unfair it is, no stamping of feet will bring him back: no amount of screaming, sleeping, shouting, swearing, bargaining and begging. I know, I have tried all of these until my throat hurt and my eyes felt like sandpaper.

So what now? Now I will live my life without my son. I will continue to include him in everything, even including him in our wedding with a special candle and a poem.

These are our children, our precious children. We are allowed to grieve openly and honestly. We shouldn't be afraid to grieve or be told how to grieve. It will always hurt... I just hope that someday you to will be able to think of your child and smile in your heart. You hurt because you love them so much. We now walk a different life... but we walk it together with our precious children in our hearts.

1 comment:

  1. Thank you contributing such a beautiful piece to the blog Nicola.

    Ethan was such a fighter and, by me, is mostly remembered for his smile! He always looked so happy. I still remember coming for cuddles when he first came home from hospital.

    He has inspired so many people and I am sure he will be so proud of the amazing work his mummy has gone on to do. What a tribute to him. xx