“Did you have any special nicknames for your child at home?” - Nikusha, darling daughter
“What was her favorite toy?” - a teddy bear that sang lullabies
“What did she enjoy most?” - she loved to be kissed, to be called sweet nicknames and to be hugged.
“What did she dislike?” - medical procedures that caused her pain
This isn’t merely a questionnaire. These are the memories of the parents of children whom the VERA Hospice Charity Fund was helping until the very end of their lives.
On September 15th and 16th we all met for our first Remembrance Day. A total of 22 families agreed to join us and bought airplane and train tickets from various Russian cities like Tomsk, Cheboksary, Tyumen, Krasnodar, Ufa and other faraway places.
When a child dies, parents often have trouble allowing themselves to keep on living. They find it difficult to stop blaming themselves for the fact that they weren’t able to do much for their child (whereas in reality they did more than enough). Ignoring others that try to blame them can be hard, too (“They lost a child and now they’re dressing up and going out! They should be ashamed of themselves!”). Finally, it is challenging to find someone to share your feelings with; things that might be scary, or beautiful, or very private.
As long as a child that suffers from a terminal illness is alive, the staff of VERA Fund try to do everything in order to spare his or her parents unnecessary pain and fear and to make sure that the child spends as much time as possible with the family instead of in the ICU. When a child dies, all that is left are the memories that we share. This is why bringing parents together on Remembrance Day was essential, regardless of the fact that they live far away from each other.
It was very important for us to create a safe environment for the parents where everything is allowed: playing football with hospital clowns, swimming in the pool, sharing memories, consoling each other and crying together, baking pies and sharing food. And where they would slowly, step by step, let go of the pain, while not initially believing that it might get better. Finally, their main goal was to start feeling like themselves again, for those who passed away, as they would love to see their parents happy.
Late at night parents wrote down their children’s names and the most important words on white balloons and released them into the night sky. After a few minutes there were fireworks for those above, to let them know how much we love them.
“Did you have any special nicknames for your child at home?” – Tutunka.
“What was his favorite toy?” - “He had a small “Niva” car that he called Nuna. His granddad had a green Niva, and so did Arseniy.
“What did he enjoy most?” - he loved cars, tanks, tractors, and sleeping in mum’s and dad’s bed.
“What did he dislike?” - He hated hospitals and he wasn’t very pleased when his parents asked him to finish his porridge and go to bed.
We thank the parents that decided to join us, despite their hesitation and anxiety.
And we are very grateful to those who made this event possible.
Your help enables us to not only provide the families of terminally ill children with everything they need, give them psychological and legal support, but also to stand by them after their children are gone.
Below is the data on allocated charitable expenditures this time:
01.07.18 through 30.09.18
Medical equipment and its service … $109119
Equipment consumables…………..... $107351
Special nutrition……………............... $106871
Financial help to families …............... $15160
Transport services …………….......... $5092
Funeral services ……………............. $5216
Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $50558
*We thank Alexandra Goriounova for her generous help with rendering this text from Russian into English.