SUDEP Action

Making every epilepsy death count
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Anze

What to say? How to describe​ you Anze?

I had the ​privilege of being your mum for 10,890 days. 

I am and will forever be grateful for having such a pure soul in my life. I learned so much from you Anze: what I should improve, what is best to let go, how to surrender and embrace whatever is coming my way.

Already when you were small, you were the sweetest child, who always wanted harmonious surroundings. If there were 10 cakes and 11 kids, you would give up your own slice so nobody would be sad. You were a very good observer and turned vivacious only when you felt at ease. Very private, yet kind, funny and always ready to help others.

At 17 you suffered two grand mal awakening seizures out of nowhere and were put on medication. For five years you were seizure free so your neurologist gave you the choice to try without medication. You looked at me for advice and in your eyes I saw hope. I let you decide. After four years your seizures returned, not many, just two per year, always early in the morning. You felt safe and were never concerned. You said you were lucky that your seizures were few and happened in a predictable and safe environment.

I don’t know if any of your many neurologists ever mentioned SUDEP to you. I knew about it and the last three years when medication no longer controlled your seizures after a 9 year seizure free period, I felt something might happen. I was concerned but knew I had to let you live a full life and make your own choices.

 

 

At 26 years of age you moved from Belgium to Scotland. You seemed to like your new life. You finished your studies of psychology, got a job, socialised and stepped into adult life. Not without some challenges.

Still, you remained the most responsible, brave and respectful person I have ever met. Never a bad thought about others. You loved listening to music and going to the gym. Those were the two worlds where your soul felt at ease and in harmony.

You died alone in Edinburgh and were found two days later when I became alarmed by no response to my calls. I knew you were gone several hours before receiving official confirmation. I lit a candle and wrote my farewell to you:

“My greatest love, spread your wings and forget the obstacles of this world. Fly far into the sky, into the clouds. May your soul be embraced by the love you have always longed for. I am proud of you, proud of your achievements, of who you are and what you have given to this world. You are pure love and a joyful heart, a good soul and my greatest ally. You kept telling me «Mum please don't worry, everything will be fine». And I won't worry, because I promised you that. I will not try to keep you here or call you back into this world. I will do what every mother should, I will give you permission and my support to go, I will give you freedom and trust, because I know that you can make this journey on your own. I love you, my son, and because I love you so much, I wish and believe that you will find your destination and once you get there, you will laugh wholeheartedly. I won't call you back and I won't worry about you. Go peacefully my son, and do not look back. All will be fine my son. Xxx”

I never said goodbye to Anze’s body and finally embraced his ashes 3 weeks after his death. In Scotland I met wonderful, warm people who soothed my soul and helped me in those first days.

Anze was buried in his home town in Slovenia surrounded by family and those who knew him as a child. He was gently put to rest on the notes of bagpipes playing Amazing Grace in memory of his love for Scotland and his new chosen life.

You will always be loved and remembered my son.

Your mum