Mother’s Diary

Jurate is a carer for her son Luke, who sustained a brain injury when he was hit by a taxi in London.

Here she tells us a bit about her family's life after brain injury and how she's found a creative outlet for the many emotions they've experienced.

Can you tell us a bit about your experiences with brain injury? 

It was a shock. I realised how fragile your life is. In a split second, your life can change forever, and there is no way back, in a split second. 

I knew nothing about brain injury. I knew nothing about what to expect after my son woke up, though I never doubted that he would - it was just a question of when. 

To be honest, nobody knew exactly what to expect. Doctors kept saying that a lot of it depended on person to person, age etc. From the scans they had, the prognosis was very, very, very bad. My son had a severe brain injury - a diffuse axonal injury, lots of bruises, and hematomas. 

So, while my son was 'sleeping', I started to look for information everywhere I possibly could. I heard about Headway from one of the doctors. Headway's website was the first source of information I had. 

Later, I dug deeper and deeper. I wanted to know everything about brain injury, coma, the Glasgow scale, how to heal the brain, how to help my son while he was in a coma, and how to wake him up. While Luke was 'sleeping', I was studying.

I was told that after my son wakes up - and if he wakes up, he might not talk, walk, eat, or breathe. He might not recognise anyone. This is how I understood how devastating brain injury is. 

How did brain injury change your lives?

It changed everyone's life – mine, my daughters, and of course, my son's.

I was with my son every day from the morning to the evening. I got permission to stay in the hospital with him. I left my job and the country I lived in then. I moved to London and focused on my son's recovery. We were together every day – in the hospital, in the rehabilitation centre, everywhere.

I went to a cognitive rehabilitation workshop organised by the Brain Tree. It helped me a lot. It helped me to understand the behaviour of people with brain injury. 

How did Headway help?

It was an amazing starting point. I found and gathered all the information on Headway's website. There were so many useful links to different sources of information and lots of advice. Headway was like a guide for me. 

Tell us about your book ‘Mother’s Diary’

It took me almost seven years to decide to turn a series of hospital diaries into this story. I think it's only then that I realised that all the dangers are finally in the past and that a new chapter in my life could be written.

Through this story, I wanted to share how vital it is for loved ones to be present in the face of a calamity such as ours. No doctor, no nurse, no hospital – no matter how good they are – will replace the love and warmth of your nearest and dearest.

I am convinced that it's only our collective loving efforts that make true miracles happen.

I wrote this book because there were so many things left unsaid. I wanted to tell this story to comfort myself like a little child and close that chapter of my life so that I could finally begin to look forward. It was hard; it was very hard indeed.

With this book, I also wanted to thank all those who believed in Luke, helped him return to life, contributed to his treatment, and supported him financially. Throughout these years, we kept meeting people whose kindness and sincerity moved me to tears. And they still do to this day.

How is life now?

I never look back at the past. Never question why it happened to me, my son, and us.

Ten years have now passed since those events. Has my son fully recovered? No, he hasn't. He can't run and will probably never be able to. He probably won't be able to snowboard either.

What's more, he also had to give up his medical studies. The consequences of the accident remain, but Luke lives – in the truest sense of the word and has never complained about a thing.

He forgets a lot of things, and it doesn't matter at all because the most important thing is that Luke has never forgotten his will to live. He's utterly sincere with an indescribably good heart and a sense of humour all his own. And isn't that a huge source of joy? The simple desire to live.

What would you like people to understand about brain injury? 

Be in the world of the injured person. Accept it. Accept the changes in the person. You cannot see the damage with the naked eye. You cannot see what was injured inside. That is why brain injury is so devastating.  

How can people better support carers of those with brain injuries? 

Be patient. Be patient. Be patient. Be understanding. Be kind. It is already so hard for the carer to see their loved one struggling after the brain injury, but it is also hard to cope with all the daily challenges. Being the carer, especially for your loved one, takes lots of strength. It is tough. 

Offer a day off or a few days off, if possible, so the carer can regain their energy and balance back. That is the best gift a carer can get. 

Is there anything else you'd like to add?

Do not give up. Ask for help when you need it and accept the help. Give yourself a break.

Don't look at the past and question why. Just live one day at a time. Today is already better, so tomorrow it might be even better. If today we struggle, it might be better tomorrow. Do not look at the past. 

Click here for information on caring for someone with a brain injury.