This article was written by Jyrki Pinomaa, president of Inclusion Europe.
The article was published on his website: A summer that never came – JYRKI PINOMAA.
The boy was born as planned by caesarean section. As early as half past nine in the morning, many years ago, on Monday June 3rd, I had my fourth child in my arms, a ten-point boy, our youngest one.
I looked into my son’s eyes and got scared. Something came to my mind that I resolutely and firmly rejected. Something familiar. But as we were assured everything was fine and as we also wanted to protect ourselves, we tried to shut down all such thoughts. Summer was about to begin. A summer that never came to us.
The boy was restless. The boy seemed to be screaming constantly. It was clear to us that he was not feeling well. Everything was not alright. We read in a magazine the results of research that a child’s colic problems were often caused by a milk allergy. In mid-July, my wife stopped breastfeeding. The screaming stopped the same day. We were dispatched for allergy research, which then somehow turned into neurological research. In August we found ourselves in Children’s Castle, a well-known Finnish disability research hospital. Summer went by. A summer that never came.
Just as we had somehow learned to manage our life with our older son with intellectual and multiple disabilities, a five-year-old. Just as we finally felt mentally balanced in life with intellectual disability in our family. Just as we were content to schedule our lives for the idea that he, like his siblings, would someday become independent and move away from childhood home in 15-20 years. Just then the fate decided to re-organize our lives in a new order. The fate decided to add five more years to our schedule, as if leaving us in class five times at a time, as if returning to the starting point, squere one. The fate brought us another child with intellectual and multiple disabilities to raise. How does one manage to live with all this?
Well, after stumbling through the first shock, we somehow did. Help for mental distress was first found in family therapy offered by the rehabilitation department of the clinic and later during many years to come in individual therapies.
Last summer, the 30th anniversary of our youngest one was celebrated in a corona-safe way together with our whole family and his and his brother’s common neighbors and staff members of the service provider. It is difficult to understand that more than three decades have already passed since his birth. Where have all those years gone, how did we struggle through them.
It has not always been easy. But is life meant to be easy. We have learned to understand difference, to tolerate uncertainty, to live with the constant fear of death.
We have most certainly survived with the individually planned help and support of the right kind and dimension. With support of peers, with support of each other and with support of our whole family, gaining strength from all these, gaining strength from each other. We have survived by insisting on the rights of our children and the rights of our family. Of course, arranging that help and support has sometimes required “talking in capital letters”, it has also required the use inappropriate language. But having thus resolutely endured to continue in that manner through the decades, we can now see that we did manage to live with all this.
While fighting for the rights of our own children, we have at the same time come to help others who are fighting similarly. Being a pre-fighter has also led to interesting positions in disability organizations locally, nationally and internationally.
Each of us live their own lives, playing with the cards that fate has dealt to our hands. I have often felt that the cards in my hand do not seem to form a combination that would secure my way in the game of life. But with time, with patience, and by watching the game of others, I can now see in my hand the combination with which I am achieving an overwhelming victory in this unique game of my own life.
Happy Birthday Robin!
