Twenty two years ago on this day at 5 a.m. I started experiencing the most intensive pain I’d ever had. I bit into my husband’s hand and he let me, he knew that this was something that was so painful that I needed all the support I could get; blood started gushing out of me and I was rushed to hospital. I was told that my child was on her way – three months too early. A doctor gently but firmly told me that I needed to prepare myself for something very sad and asked if I wanted to keep the baby or if they should give me something to abort because if I kept her and she lived, my life would be very hard. My husband and I did not waver; we were terrified and tired but we wanted to keep her.
Pia was born 500 grams and three months premature. For 2 months she fought for her life. For almost one month, we were reminded that the odds were against her to make it. Once, in the middle of the night sick with worry, we called the intensive care (we were not permitted to stay in hospital while she was in intensive care) and were told to come because it was not looking good; her breathing was growing weaker and weaker. By the time we arrived, she had somehow managed to hang onto the last thread of life. She fought … she wanted to live and she did.
The oxygen in the incubator caused severe damage to Pia’s retina and the nerves of her eyes with the result that she became almost totally blind. In addition, because her organs were so underdeveloped at the time of her birth, a very tiny pipe called a SHUNT had to be operated into her head so that the neuro fluids could flow correctly out of her body otherwise, she would have what used to be termed “a water head”. Pia also started having severe epilepsy due to the trauma of blood getting into her brain causing brain damage.
45 operations later, countless weeks in hospitals, experiencing rude doctors even wrong medication, chronic epilepsy in the underground, in the car on the highway – fearing for her life; crying because of kids pointing and laughing at her and being told by a family member “God is punishing you because you did not get married in church” to being told “you must have done something wrong in your previous life” to being insulted “you could not get it right”, through all those painful years, my daughter Pia stood strong. She sang, she laughed, she fought for her life. One morning I was so down, asking why? Why had “this” happened to me? The words “because God loves you and He knows you can handle it” just don’t cut it with me. In fact, I cannot understand how people can even say that. So, as I was crying bitter tears again after having to experience children laughing at my child. I felt really sorry for myself. From the bedroom I could hear Pia’s laughter and her beautiful voice, she’s always singing, always happy (sometimes she’s really difficult and that’s her right). And I recall that moment because it was a decisive one that changed everything:
“if Pia, who is blind, mentally handicapped and dependent on the help, mercy and love of others for the rest of her life can sing and be so happy, then surely I, healthy, strong and independent can be happy too”.
Now, we have the most beautiful life but it is hard; this after all, is not paradise yet but I am so grateful for the lessons my beautiful daughter has taught me. I am so grateful for the people in our lives, the heros, the caregivers, those who have given their lives to helping and being the difference between sinking or swimming.
So in closing, the intention of this very personal reflection is to encourage anybody out there in real life land; if you are going through a dark time, if you feel that life is unfair and you just cannot go on; if you are isolated, abandoned by someone or even more who promised to be by your side but left because the daily grind is not romantic – it’s not a pretty picture on instagram or Face Book – real life is shit hard when one is dependent on doctors, caregivers, the mercy of others. But you know what, real life is also beautiful. Hold on to it as my sweet Pia did and still does. Find something that uplifts your life makes you healthy, builds your body and makes you strong. Find your song and sing it loud like Pia does.
