The sense of loss that I felt when we received the diagnosis was immense and still peeps every now and then into me, even though it has been almost 5 years. The extent of what was communicated to us that day was a thunderbolt in the clear sky. The motor problems of our daughter Elena (EMI DX), who was 10 months at the time of diagnosis, we had noticed them for a long time; However, we would never have imagined the size of the damage that his brain had undergone at a time that is not yet accurately known, ranging from the 28th week of pregnancy to the 28th day of life.
Since the day of diagnosis everything has changed. Including in an instant that the motor problem we were observing could have been just the tip of the iceberg. Including that we had little time in front of us (about 3 years, they told us) to accomplish most of the process of recovery and rehabilitation. Including how much he could offer to Elena the small town we lived in was too little. She needed an approach to the little girl at 360 degrees. Not only physiotherapy, but also speech and cognitive monitoring to be able to intervene promptly in case there were problems even in this field (which then happened), psychological support to the child and the family.
After two months we moved to another city. There was a great deal of help for my husband's work, which often forced him to move: what until then seemed a limit to our family suddenly became an opportunity. I left the job but I was able to use before the parental leave that I had not yet used, then the extension and the extraordinary leave granted by the precious Law 104.
That year we changed physiotherapists and method. To guide us in the choice was our own daughter, since we knew very little about the matter. His psychological well-being and serenity have always been our priority, so we stopped only when Elena met a team of therapists able to guarantee her not only adequate recovery, but also this wellbeing. I speak of team because this was another of our "lighthouses" in the choice: rehabilitation can not be the work of only one therapist, however good. We need a team of professionals who can work in harmony with the school system as well, and we've had the great fortune to find it.
Our other great fortune was that Elena has a twin sister: a continual stimulus for her recovery process, a life gym for the construction of her self-esteem.
Today Elena is 5 and a half years old and our battle is not over. Although the famous first three years have long passed, the process of recovery continues, and now awaits us the great challenge of elementary school, as well as some other important change on the horizon (including my return to work).
We have faced many challenges and there have been many problems that have peeped out over time: many of those who had been projected have not occurred, others who were not expected instead presented themselves at our door. Needless to say, the concern has always been a lot. I think it will be so forever. In spite of today we parents can tell us finally more serene. We have in front of us a little girl who has had an excellent recovery neuro-motor, a girl intelligent and above all serene, endowed with a remarkable self-esteem, aware of its problems but determined with commitment to overcome them.
Every now and then I tell myself that perhaps we could have done more for Elena's motor recovery, especially at the level of the upper extremity, although we have made considerable progress. At the same time, however, I say that we have done what was possible at that time, having to guarantee the child also time to play, have fun as all the other children of his age and grow in a serene environment.
The message I want to give to parents who are facing this path in fact is this: rehabilitation is very important but must never be a source of stress for the child and must live with other aspects of his life (the game, the school, experiences) without invading all the space. This sometimes means going down to compromises. Elena was always very explicit in making us understand when it was time to slow down or change approach in rehabilitation. It's up to us parents to take these signals.