Life After Stroke: Camilla, Perinatal Stroke
Translated from Italian
I remember exactly the expression of the doctor who first told us that Camilla had a cerebral hemorrhage, then a loud noise, the desperate embrace with Alessio and the spacecraft, also more commonly called “incubator”, that took her away. Only 28 days had passed since her birth, days very different from what we had imagined, because we, in our heart, we always knew that something was wrong, despite the assurances or accusations of being anxious parents of the doctors and nurses of the TIN where she was hospitalized for jaundice.
For us it is difficult to answer the question: “How has your life changed after the diagnosis?” Because in truth, in our life there is only the before and after Camilla, the stroke has arrived with her and both, together, have turned upside down our life.
What has changed is the idea that we had of our life with a daughter, we had imagined everything or almost everything, our everything was an ordinary whole, without physiotherapy, without neuropsychiatric evaluations, without magnetic resonances, without rehabilitation hospitalizations, without antiepileptic drugs, without 104 paragraph 3, practically without Camilla.
Of course, for us it was ‘easier’ because Camilla is our first daughter and the truth is that we do not know how it would be to raise a child different from her. Occasionally the comparison with her peers gives us some little slap and reminds us that no, ours is not the “normality”, but a few seconds later we return to observe her and to think that in these 14 months she has proved to be without a doubt a real fighter, and that even if she does not crawl, does not walk yet and often only uses one little hand, she is absolutely the most extraordinary girl we have ever met.
The arrival of Camilla allowed us to discover a world of which we knew nothing: extraordinary parents who welcomed us in their lives and helped us to make the decisions that, up to here, proved to be right. We have felt the affection of our family, friends and colleagues who have supported us day after day and who have never left us alone. We opened up to others and we accepted (every other day, because it is not always easy) to help us, because such an event cannot get in someone’s life and leave no trace.
If we had to or could give advice to a mother and a father who are facing the same path we would just say this: do not close, compare with those who have experienced all this before you, seek the comfort of your loved ones, rely on someone who can help you in the right way because it is difficult not to feel wrong when you think you have not been able to protect your child’s life. Even if everyone tells you that it is not so, that was the case, genetics, we know that that sense of impotence and all those “but if I had” will reverberate in the head for a long, long time, but not forever.
Thank you to Fight the Stroke for their help in gathering the stories from Italy!