miércoles, 4 de marzo de 2015

My son's illness - Trichorhinophalangeal syndrome community - RareConnect

My son's illness - Trichorhinophalangeal syndrome community - RareConnect


Online Communities for Rare Disease Patients
“Accepting that my son has trichorhinophalangeal syndrome wasn’t easy. The path is uphill, but we can do it!”

My son's illness

When I got pregnant I only thought about all the good and beautiful parts of having a son. Taking care of him, watching him grow, develop... seeing him accomplishing his dreams, seeing him happy. At the end of the pregnancy, things started to change and became complicated; I was hospitalized. At exactly 38 weeks he had to be born and so it was. We never imagined how hard it would be from then on.
Written by LizFuent3s, published 24 days ago.
My son's illness

In my family there wasn't a genetic background that would indicate that something rare could happen, in my husband's family either.
When our son was born, the first thing they told us was "there is something strange" and that is how our search started: the pursuit of that "something" that identified and differentiated him from the other kids. And on the other side the search for the strength and courage to take him and carry him through despite everything. A doctor gave us insight about what he could have, but it was just a theory.
We pushed a little and then a medical board gave us the diagnosis: Trichorhinophalangeal Syndrome.
With that piece of information we started to get involved in the matter, to read, to study what it was about: we only cried because the literature is not encouraging in that regard. I was immersed in a depression, I acted by inertia and tried to think that everything was fine. With shame I have to admit I tried to hide it, so they wouldn't ask me "why", so I wouldn't have to give explanations or inspire pity. I cried because of how I acted and didn't understand how God could punish us like this.
One day I went to doctors visit and a lady doctor told me to ask a colleague that was a psychologist, I took an appointment and went. She saw me a few weeks but they were enough to understand many things, I realized that I didn't solve anything by crying, my son had the syndrome and I had to take control to take my son forward.
There has been almost 2 years since that moment and we have realized that despite everything that the doctors told us once it is not that terrible. You can get by: the path is uphill, but you can. I asked God for forgiveness and thanked him.
With effort we have gone forward step by step and we have seen advances. I know that we still have much to go and overcome other difficulties proper of the illness.
In all this time I learned that my son is beautiful, intelligent, tender, he is unique and is mine.

No hay comentarios:

Publicar un comentario