Rebecca
I am Rebecca.
I was born in 1985.
At the age of 20 months, I was diagnosed with bilateral retinoblastoma.
The left eye had to be removed as the tumor was already too big.
Of course, this was a big shock for my parents at the time, as although my family (grandmother on my father’s side and more distant relatives) had retinoblastoma, my father did not suffer from it.
I can no longer remember the whole procedure.
My first memories of the “trips” to Essen are from kindergarten and they are not bad ones.
I had to deal with minor difficulties with my prosthesis throughout my school years.
Other children kept asking why I was cross-eyed, but this only ever encouraged me to talk about my prosthesis.
I regularly took old prostheses to school with me and when some other children wanted to know for sure, I took my eye out in front of them.
This was always an important step for me, as all my friends knew this and therefore had no problem seeing me without my eye on school trips and vacation camps.
My parents’ behavior was very beneficial: they taught me from an early age that my condition is not a handicap but a special feature that not many other children share with me.
The most exciting time in my life so far was certainly the time of first love.
Questions suddenly arose that I hadn’t given much thought to before.
I suddenly wondered how my boyfriend would take it if I told him, or how he would react if I took my eye out at night.
But here too, I can say that the more naturally I dealt with it myself, the easier it was for him too.
Ultimately, I think that if it’s the right partner, they should accept you for who you are, otherwise you might need to question the relationship again.
The question of children then arose during my life together with my husband.
It’s difficult to give general advice here, because every person and every partnership is unique.
For us, we decided that we wanted to take the risk and have children, because even life with retinoblastoma would be a life worth living for us.
As an affected person myself, but also as an affected mother, I can understand many of the worries and hardships of other affected families.
I will try to show my daughter that life with retinoblastoma is also a very happy and worthwhile life – that’s how I feel.
After all, we are all human beings with a special feature, in our case a special feature that not so many people share with us!
Encourager
Rebecca
