La tensión entre los que deben defender ciertas normas, opiniones y valores, y los que luchan por otras nuevas, es el resultado sobre el que descansa la evolución de la sociedad.

Serge Moscovici





Who would send me another child?(Blanca Toledo, 2006) (doc)

For me and my husband, our first son was an experience which completed us, which made us feel that we were transcending. It made us feel important.The second child came with the unintentional obligation of completing the family, taking on the profession of brother.How beautiful everything was then, how symmetrical the family was: Mom, dad, the girls. How cute they are!From that moment on, you no longer hear “The older one is very clever, but the smaller one is very friendly”, or “How pretty this girl is, well, and the other one too, of course” or “How pretty they are, almost like twins”.So as life is smiling at you, you decide to have another baby.The third is my decision, and I want to have this one.All is going very well, you are brave, a great mother, a woman from head to toe. Or at least this is what they tell you.And without turning this into a story, in the final ultrasound scan of the last pregnancy, you find yourself with a piece of news that only makes you think:Who would order me to have another child?With how well I was.You go out into the street with the envelope in your hand and inside it is written very clearly, “Dwarfism compatible with achondroplasia”.At that time you don’t think of anything but excuses. It’s a mistake, those doing the ultrasound scan know nothing, they are mistaken. Actually, a girl at work had the same diagnosis and later nothing happened, she had an ordinary child. This is not happening, so hey, let’s go home.And after releasing the bombshell to the family, after explaining to some people or others that achondroplasia exists, that it is somehow not a condition which has been extinguished, like a freak thing from another century, you find yourself feeling like you have been crushed.The next day you are shouting at your husband, with no voice, that you want a normal child. NORMAL! Is it so difficult?How is it possible that this is happening?I understand perfectly what achondroplasia is. I have studied it a million times. I have exhausted myself finding genetic problems that an achondroplastic person may have offspring with any other genetic possibility of the nature.I even understand what a transmembrane protein and a chondrocyte are. What’s more, I’d even know how to recognise one alongside other cells.But knowing what it is doesn’t help me.The son I was going to have has just gotten lost before being born and has been substituted with uncertainty. The cumulative experience with previous children seems to serve for nothing.

During the weeks that followed, I lived through heightened affliction.My son, the one I had imagined, wasn’t coming anymore. He didn’t exist anymore.Now, when I picked up the girls from school, I looked at what my son wouldn’t be, and I thought that everything around me in that place would be vetoed – sport, friends, laughs, etc.

Again I find myself crying.I don’t think I will ever recover from this.But I am aware that I have to live my life as it comes, with the options that I have.This way I get to the conclusion, as if it was a relevation, that if I want people to treat my son normally, the first thing I have to do is treat him normally myself, as I’m his mother.The approach is simple, and for me this simple step involved a break in the idea that I wouldn’t have a son who was the same as the rest of them. It was the starting point of my new reality.The day of his birth was one of the most peaceful days I can remember in my life.From that moment, my uncertainty was in an incubator and began his path.The unknown had cleared and now I had a child who needed our ingenuity and knowledge of how to take maximum advantage of his potential.In truth this is how it is with all of my children, but it seems that with him we can’t leave any loose ends.

I had never had any contact with Early Care. I come from a private world: a private school, private healthcare, everything private. I didn’t know anything about the care that my son might need, and I still don’t know many things. What I did know for sure is that an achondroplastic child is sluggish, but his head is just like any other person. Later I understood that you have to do something for his brain not to keep dozing, waiting for his feet to take him over the horizon of his blanket.With this concern, I was lucky enough to speak to a pediatrician -a friend of the family- who got me an appointment with Early Care.From there, Ángel started working daily with physiotherapy and later with stimulation.His work bears fruit, he is getting strong and his head is not far behind.At the same time, although during my prenatal research online I had already got to know them, I contacted ALPE.Through them I have also gained access to other Early Care, not only for the baby, but for his sisters and for us, his parents.With ALPE we have gained access to a very well-connected network which has allowed us to meet other people in our situation.This part has been (and I know it will continue to be) very important. The experience of others is very useful in the education of a child, especially if it is a child with achondroplasia.The parents I’ve met have already been where I am now and, of course, every one of them does their own thing at home, but I think it’s wise to gather all the information possible that’s within my reach, because in future this will allow me to react with more resources to any problems I may be presented with.The real problem with all of this is that I was lucky. I mean, nobody approached me to tell me I had to take the baby to be examined, to request physiotherapy, stimulation, the certificate of disability, etc. But what if you don’t have a pediatrician friend, or you don’t have the necessary reaction capacity necessary to glide through all of the administration, which is also understandable?Now, a year and a half after this time, I’m starting to be aware of several things:Ángel is effectively normal, at least for us, his family.This is very important because we are his first social reference. Our behaviour has an indirect impact on many people with whom we relate.We have to be a network, gathering all that we can and forcing the world to see what it really means to live with difference.

People that we know need time to open their eyes to different realities and to accept them.It is not easy, not for any of us, but if all of us who are here have crossed the line between ignorance and reality, many others will do the same.I have always thought -and this is what I say to my students- especially to the girls, who are normally more worried about their physical appearance than the boys, that what makes us different from animals is not our strength, nor our height, nor our fat, whether well-placed or not.What makes us different is our intelligence, our ability to create ideas, concerns, discussions, games and stories.Ángel is intelligent, he will be able to achieve what he wants, just like any normal person, which is what he is.Now Ángel is taking his first steps. He would like to be running already, but his body doesn’t let him.What he doesn’t know is that he is really beginning to be himself.I like it a lot when babies start to walk because that’s the moment in which they leave the maternal shelter and begin their independence. And with Ángel, almost more than with his sisters, what I want is for him to be independent in all senses of the word.