Beyond Achondroplasia

Growing together with Clara

A bright day

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Today was full of new experiences. The four of us went to a badminton tournament here in Évora. Dad was going to play around 11am and as the weather outside was bright, although slighty hot… it was a good chance for Clara and Afonso to mingle with that vibrating environment! (well Afonso knows this since he was 3 months old!)

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Supporting dad in the first row (playing with a yellow shirt!)

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The pavilion was full of new, vibrant and intense sounds for her. She expressed herself with such joy when she was on my lap watching it all and looking to everyplace her sight could get.

After the ear tubes surgery, she hears clearly better! And that is a new wonderful thing for us too.

This was the first time some known people saw Clara for the first time. Some talked and smiled at her like they would do with another baby and some just didn´t say much and in their body language, the unspoken sound coming from them was that something wasn´t usual in her, but perhaps they weren´t confortable to comment something, with us at least.

In the other hand, children don´t have any social issues in speaking. They are free souls, without the anguish and barriers of adult people. One of them, a ten years-old comment with me about her small hands and feet and “she has such a large head!”. Well, it isn´t easy, nobody said it would be, but I/we feel more and more confidant in sharing Clara and living with our child in a full life mode. This life ride is just beginning and after 10 months, I feel more confidant, with a more contained fear that someone can hurt her and us. Now, those voices can just hurt us. Now Clara is just a so happy baby! and I know that we all will get more experienced, balanced and wiser.

And well, when we left the pavilion, at 1.45pm, the heat outside was so intense, around 45 degrees Celsius (113 F), we were all evaporating! and I rather choose walking a little bit with her in her stroller outside, all covered, instead going directly to the car that seemed like an oven. So after a couple of minutes with the air conditioning working, we all went back home.

The old manual but effective air-conditioning system!

The old manual but effective air-conditioning system!

Clara sweats so much that is hard to deal with that fact because it seems to me that she might suffer much more than a heathy child with all this heat. Her head releases such a substantial amount of heat that everyplace I lie her down, gets wet afterwords. It´s hard to realize that summer timer just began and Clara might spend much more effort dealing with the weather. Specially living in this zone of the country, particularly hot during summer.

So, after some time “distilling”, a good idea was to refresh in a pool. The kids took a nap and at 6pm, we went to a village pool, away from here, usually much more quiet and pleasant. Half an hour later, we arrived. The heat remained somewhere around 40 degrees (104 F), but okay, that was better! Clara had her very first sunscreen over her body and after placing the silicone protections over the ear canals and putting a band over her ears and a hat, she was ready for water fun! Finally!!! The water was superb! And after this, Clara ate all her dinner over the grass, admiring the surroundings.

Two weeks after a life-threatening surgery, Clara seemed to enjoy so much all this moments! The wound is very well, with a good healing process. I change the dressing everyday and Clara helps, staying still every single time I do it.

And Oh, what an excellent 1.30hour in the pool!

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