This last saturday was a day to know more and go beyond myself/ourselves. The conference was in Lisbon and it lasted one day long. I was quite glad when I found about the conference, through our friends of Alpe Foundation, a couple of months before. I knew that important speakers were coming so I would have the chance to meet them personally and talk to them about the science developed around achondroplasia and health care procedures.
Several years ago, I had a colleague at the university that had achondroplasia. Then we got apart. I remember vaguely times together, but I remember quite well her attitude and humor. She was always in a defense mode. Sad eyes. Some irony in her jokes. I knew she was fighting back the achondroplasia in her own way and that she would go over it getting good/great grades. We got along well and I reacted in a natural way when we were around. She was just one of my colleagues.
A couple of months before I meet another person with achondroplasia. A special friend knew about this person, that lives quite close to us (100km maybe) and we schedule a meeting day. I went to my friend’s house with Clara to meet that person.
But meeting her sounded completely different of those times around my colleague. Now, Clara makes all the difference in my reaction. I was preparing to meet that person during my car trip but I realized I wasn´t prepared to face the reality. When I arrived and meet her, my thoughts took a deep breath. Very deep.
She had (has) deep blue eyes, a deep voice and very strong attitude. She is probably 35 years old. I shut down my heart when I absorbed her weight. And at that point, holding Clara in my arms, I hold her closer to me. My face was smiling but my heart was crushing with that reality and with the image in my mind that at that point I projected Clara in one possible future self of her.
This saturday, the four of us went to the conference. I hadn´t the same reaction I had with that person some months before, but the first step inside the conference zone was taken with a deep breath. Because we were running late, the coffee break area was almost empty, and I could only see a very blond boy, sea water blue eyes, running and playing with paper airplanes with a couple of girls. He had achondroplasia. Soon his father got near to us and said how Clara reminded him of his son when he was a baby! Such a pleasant man! That beautiful boy was 6 years-old and my heart released some inner peace. We also meet a delightful lady girl with 8 years old and we played a lot. She loved Clara and just wanted to kiss her all day long! Another boy was there, 5 years old. All the other people with a skeletal dysplasia were adults.
Clara was the youngest person in the conference. Afonso was the second youngest. With no more babies, Clara was the most wanted person to grab and hold by the other people all day long. she behaved so well! Several times, during the speaker’s time, she grasped “ahhhhs”, “ja tas”, “ouahhhs”, Ihhhhs”. Always with a great mood. And Afonso behaved very well too. I was so proud of them both!
Conference room insight
Incredibly, holding the cell phone for a call during the conference
The conference was interesting, but the time wasn´t enough to approach all the main themes, so many speakers had to speak fast and rush and many things were unsaid. So I tried to ask questions and many doubts I could with some speakers, during the coffee breaks. And I had the pleasure to meed and talk to influent people in the achondroplasia treatment world: Prof. Morrys Kaisermann and Tiago Barros, from BioMarin Europe.
At the end, it was a great day, we meet lots of interesting people, learned many things from other parents experience and their way to see achondropasia and we could feel and see that all together, even few, we are more and stronger to go far and beyond.
At the lunch break, always with that bright smile!
Happily enjoying each other company
The desert was delicious but I asked for a piece of fruit to give to Clara. She was absolutely thrilled when a lady put a dish full of quarters of apple in front of her!!! “All for me?” I wonder if this was her thought!
Tagged: achondroplasia, affraid, boys, challenge, Conference, dwarfism, girls, learn, Lisbon
