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Cornelia de Lange.

Few doctors recognize that behind this beautiful name lies one of the most severe genetic syndromes in the world.

Marusya was born wanted, and everyone believed her to be healthy. But from five months on, problems began. Diagnoses poured in one after another: focal-resistant epilepsy, West syndrome, severe developmental delay. She was fading before our eyes. Only after four years of struggle, treatments, rehabilitation, trips to the best doctors, and endless attempts, was the primary diagnosis – the root cause – finally made: Cornelia de Lange syndrome, in an atypically severe form.

Did my world collapse? No. The world had fallen apart much earlier. By then, enough complications had accumulated to make it clear: there was no chance for a normal life. Moreover, the diagnosis brought me a sense of relief. I could finally fall asleep without the tormenting questions of why my child was the way she was. Knowing is always better than not knowing, no matter how painful it is.

What now? Now Marusya is eight, and our challenges remain unchanged. Marusya cannot walk independently, doesn’t understand speech, cannot chew, is not potty-trained, and so many other “cannots.” Every day, we continue to suffer from three types of epilepsy, which we cannot control due to the complex genetic nature. Marusya finds herself in intensive care more frequently now, each time slipping further into regression. And our prognosis, as doctors would say, is quite unfavorable. We have palliative care status – in simpler terms, Marusya is a hospice child. But! She can smile. And she is incredibly beautiful. Each day lived with a smile is already a great joy.

And how am I? Over these years, I have gone through all the stages of grief: from despair and thoughts of leaving life behind to complete acceptance. I have a law degree with honors and spent several years working in the field. December 3rd still brings congratulations for Lawyer’s Day. But now, I pay attention to this date for an entirely different reason.

Did I know that December 3rd is International Day of Persons with Disabilities? No.

Had I ever been interested in this topic? No.

What did I do if I happened to see a person with a disability on the street? I quickened my pace and looked away, just like most of us.

It’s all somewhere far away.

It happens to someone else, never to you.

And surely, these people bear some responsibility for their circumstances.

It’s easier for us to think this way.

So now, when I see an indifferent or fearful reaction to my child, I immediately want to lash out, but in a second, I remember myself – the person for whom December 3rd was only Lawyer’s Day.

I write a small blog where I honestly share our unique life.

Do I want pity and support? No. I’ve long since been the one giving support to others.

I hold my head high.

I don’t show anyone, not even myself, the pain that fills my entire being.

I resist, hoping for better changes.

I hope things won’t get worse.

I grow tired and sometimes simply don’t want to exist.

And at the same time, I am terribly afraid that one day, it will all come to an end.

I keep loving my eternal child with my weary heart, and I just want people to know of my daughter’s quiet existence and to see the magic in her eyes.

I have no goal of impressing you with artistic language. I stay true to myself and continue to write in the very style that many of you have come to love. Even less do I aim to inspire you to great deeds, to motivate you, or to show you “the right way.”

I don’t know the right way. I write it as it is. And as it was for me.

Our honest story…