Speaking of disability is not easy because it is a taboo subject, which is very annoying as addressing the issues related to old age or death, in a society where the myth of beauty and perfection is prevailing. Tackling the disease daily disrupts life: diversity scares, poses questions to think about, bangs in the face a reality that seems absolutely far away until you touch yourself.
I decided after a long time to share my experience, welcoming the invitation of my dearest friend.
Almost six years have passed since the birth of my twins, Lorenzo and Matilde.
Six years that, looking back, are worth at least twenty, considering the experience that our family has faced and is still experiencing.
At three weeks of life, Matilde was hospitalized for a very extensive cerebral hemorrhage that caused her to emigrate to the right side of the body, in practice a paralysis.
She was in danger of life several days, she underwent several surgeries to the head and spent almost six months in hospital.
It was a terrible experience that no parent should ever try, a journey to hell that appalls and catches you totally unprepared, leaving you helpless in the face of Destiny, a dream of serene and joyful maternity broken as if of enchantment.
In those months I poured rivers of tears, I was in terror for fear of losing my child, I prayed asking the Lord why this happened to us... But then I thought I just wanted her to stay with us, whatever her condition was.
I did not care about the consequences of the bleeding including epilepsy, the quality of life it would have, the difficulties we would have encountered, the challenges we were facing, the struggles we would have undertaken with some doctors, because somehow we would have solved. The feeling was that, despite the great suffering for the incident, the pain felt by Matilde during the stay, the fatigue in caring, the guilt for not being as I wanted with Lorenzo, we would have made it to overcome that moment.
I must say that this little girl who today Walks, speaks, plays and smiles every single day, has helped me and Ermanno a lot to overcome all the difficulties encountered so far. Every time I felt lost, desperate, angry, discouraged, exhausted, worn out, she was there to remind me that she absolutely wanted to live this life joyfully, as if she wanted to regenerate me with her positive energy, with her enthusiasm and Determination and like me the people who stood next to us. In front of a warrior (we discovered in the hospital that his name had that meaning) of such tonnage could not resist. My husband and I followed her and she with Lorenzo made us discover New Horizons.
When you have to deal with the disability the commitment required for these children is very noticeable in every point of view. We went through a rehabilitative structure of excellence that was interested only in the diagnostic aspect of Matilde, without considering its essence. At the age of 3 and a half years, when Matilda still did not walk and barely spoke, we integrated the official medicine with Traditional Chinese medicine (acupuncture, pediatric tuinà, Moxibustione, diet), intensive physiotherapy with this and Cranio-Sacral. The results were impressive because Matilde started to walk albeit with the help of a guardian, to speak fluently, to remember, to dream...
It was a very difficult and hard journey for our whole family, full of pitfalls and lacking certainties to which we have adhered with deep conviction and that has given us great satisfaction despite the big effort. I thank every day my children for choosing me as their mother and for offering us the opportunity to make many useful discoveries, such as anthroposophical medicine, natural nutrition, Montessoriana pedagogy, many beautiful activities such as music therapy and Onotherapy.
To you wonderful moms fond of this wonderful blog I say never give up in the face of the adversities of life, you can despair and anger very much because things did not go as we wanted, but by us, the spirit with which we face these Evidence, depends on the happiness of our children.
I leave you with some bibliographical traces that I hope can help you:
My son has wings, stories of daily disability, Erickson Editions; What to know about your child with special needs, always Erickson as the beautiful book of Vito Piazza on Maria Montessori, the Italian way to handicap; The oil of Lorenzo di Augusto odone, Mondadori; And the moms who help them? of Alba Marcoli, Qiuieto; The life and nothing else of Marius Serra always by Mondadori; The walk of an absent-minded, Gianni Rodari, much loved by my little because that mom despite Giovannino come home in a thousand pieces adores him and "accepts" anyway, indeed, Editions EL.
Thanks to Deborah and her Matilda. September 2016.