My life has changed: it would have changed anyway with the arrival of a child. Riky is now almost two years old and fills every space and every moment of my day. He's got a left hemiparesis. He has an emiparesis, not his emiparesis. He's a kid. He's a happy child. And that's what's important!
I am his mother and like all the mothers I have to bond every day between commitments of all kinds.. I'm the Funambola of a circus not always funny, but it's mine.
I discovered her brain damage the day I was hospitalied. At the ultrasound of the practice they do at the time of admission, it turns out that one of the two cerebral ventricles was twice as normal. Hydrocephalus. They tell Me at point blank, while I was in labor. At one week from birth the MRI and diagnosis: prenatal stroke with derived hydrocephalus. The doctors did not waste in too many explanations: one does not know what caused it; The damage is very extensive, for sure there will be consequences, but we can not tell you which. Point.
For two months my recurring thought was throwing myself off the fifth floor, with the baby in my arms. I am a speech therapist and I know very well what is the family of a disabled person: I know the total abandonment that the families live here in Italy, in the South in particular and this terrified me! Another feeling that destroyed me was a sense of guilt towards Celeste, my eldest daughter. I had strongly wanted a second son X "give her" a life partner.. "And now I've got her!" I repeated myself continually!
At two months, we do a check at L Meyer in Florence and tell us that the child shows no neurological signs. He's fine. He's got no problem.
Loads of hope we go home. They spend more months.. Around 5 months we realize that the sin hand is always closed to fist, while the right moves, grabs.. All reassure us (pediatrician, neonatologist, medical friends..) but I know that you are manifesting the problem.
So we begin the various therapies: physiotherapy 4x per week, osteopathy 1 time per week, pool 1v/Sept. So we are always busy trying to do our best.
The beginning of therapy for me was devastating: I found myself returning after years in the center where I had worked as a neolaureata, where I knew everyone. But this time I was a user. I was the mother of the disabled. This change of perspective was tearing me apart. I had always been the one who supported the mothers, the one who tried to listen, to accept their sufferings.. Now I was the one who suffered, but I couldn't talk to anyone. Not even with my husband. I was convinced that I would never be able to cope with everything a mother of a disabled person has to face. I wasn't strong enough, I couldn't do it. The only possible alternative x me was death. And this thought went back to being overpowering in my mind, until I had a project.
Meet Friends of FightTheStroke It was really salvific: finally someone who was feeling my own feelings, my own fears, anger frustration.. But also someone who was a few steps ahead of me and who gave me hope. Hope. This stranger! I needed help, but I was too sick to look for it myself. My husband was very frightened by my state, he was helpless: he couldn't help me.
Fortunately, a friend of the fighters group advised me to address a psychotherapist. And so I did. A psychiatrist prescribed an antidepressant that, I must admit, helped me so much! A little bit at a time I started rebuilding myself. Meanwhile Riky grew up and learned many things: he was lively, joyful, interacting with everyone. I began to love him as he was, without watching whether or not he moved that hand. At 16 months she started walking and it was a huge joy! In September I started working again and this helped me a lot. I was welcomed in the best way: The director (mom of a guy with Down syndrome) offered me all her support and solidarity and... flexibility on time!
How has my life changed? Can I answer, with much spontaneity? I'm going to kick my ass like this!!! I work from morning to evening: in a literal but also metaphorical sense. I work so much on myself: I try to have an encouraging inner dialogue, and I strive to act and do my best rather than see what is wrong and depress me.
Lotto, I give up, I take back to fight, I ask for help, I smile, I cry, I'm hysterical, I go out with my girlfriends, I get drunk, I read, I work, I study.. I mean, alive.
Thanks again FightTheStroke !