Life After Stroke: Riky, Perinatal Stroke

Translated from Italian

My life has changed: it would have changed anyway with the arrival of a baby. Riky is now almost two years old and fills every space and every moment of my day. He has left hemiparesis. He has hemiparesis, but hemiparesis does not define him. And he is a child. He is a happy child. And that’s what matters!

I am his mother and like all mothers I am struggling every day between commitments of all kinds. I am the circus tightrope walker and it is not always fun, but it is mine. I discovered his brain damage the day I went to the hospital to give birth. At the echography of practices they do at the time of admission, it turns out that one of the two cerebral ventricles was twice the normal. Hydrocephalus. They communicate it to me point-blank, while I was in labor. One week after birth, magnetic resonance and diagnosis: prenatal stroke with hydrocephalus derived. The doctors did not waste too many explanations: we do not know what caused it; the damage is very extensive, for sure there will be consequences, but we can not tell you which ones. Full point.

For two months my recurring thought was throwing me from the fifth floor, with the baby in my arms. I am a speech therapist and I know very well what the family of a disabled person is going to meet: I know the total abandonment of families here in Italy, in the south of Italy in particular and this terrified me! Another feeling that destroyed me was the guilt towards Celeste, my eldest daughter. I had strongly wanted a second child to “give her” a life partner. “And now I’ve messed that up for her!” I repeated myself continuously!

At two months, we checked in at the Meyer hospital in Florence and they told us that the child shows no neurological signs. He’s fine. He has no problems. With loads of hope we returned home. Other months pass. Around the 5 months we realized that his left hand is always closed in a fist, while the right moves, grabs. All reassure us (pediatrician, neonatologist, medical friends) but I know that it is manifesting the problem.

So we start the various therapies: physiotherapy 4 times a week, osteopathy 1 time a week, swimming pool once a week. In short, 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 recent graduate, where I knew everyone. But this time I was a user. I was the mother of the disabled person. This change of perspective tore me inside. I had always been the one supporting the mothers, the one that tried to listen, to welcome their sufferings. Now I was the one to suffer, but I could not talk about it with anyone. Not even with my husband. I was convinced that I would never be able to face all that a mother of a disabled person has to face. I was not strong enough, I could not do it. The only possible alternative to me was death. And this thought came back into my mind, until I had a project.

Meeting the friends of FighttheStroke was really salvation! Finally someone who felt my same feelings, my own fears, anger and frustration. But also someone who was a few steps ahead of me and that gave me hope. Hope. This unknown! 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 could not help me. Fortunately, a friend from FightTheStroke advised me to address a psychotherapist. And so I did. A psychiatrist prescribed me an antidepressant which, I must admit, helped me a lot! A little bit at a time I started to rebuild 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 looking at whether he was moving that hand or not. At 16 months he 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 (a boy’s mother with Down’s syndrome) offered me all her support and solidarity and flexibility on time!

How has my life changed? Can I answer, with great spontaneity? I’m working a lot!!! I work from morning to night, literally but also metaphorically. I work a lot on myself. I try to have an encouraging inner dialogue, and I try to act and do my best rather than see what is wrong and depress me. I fight, I give up, I start fighting again, I ask for help, I smile, I cry, I am hysterical, I go out with my friends, I get drunk, I read, I work, I study. In a nutshell, I live. I will always be grateful to FightTheStroke!

Thank you to Fight the Stroke for their help in gathering stories from Italy!

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