Enjoying Maialen… 4

(The experience of having a daughter with intellectual disability)

Maialen is our lovely daughter. She was born in the mid-nineties. We didn’t know it at that time, but she was precisely what all parents don’t want their daughter to be. If you notice, when you are expecting a baby, there is a lot of talking about the wishes and preferences, whether you want a boy or a girl, blonde or dark hair, blue or black eyes, even if he or she would be a football player, etc. But the conversation ALWAYS ends with an emphatic “it doesn’t matter whatever he or she is going to be, as long as he or she is OK”.
And then, a few months after our little sunshine was born, they confirmed that she was not OK. Well, these were not exactly their words, they said something like Maialen suffered from harmonious retardation (a musical way to say that her retardation affected everything and at the same time).
At that moment I discovered the exact point of the brain in which there is a maximum concentration of the perception of pain, our pain, and I would have been able to describe it to any neurologist interested in the subject.
Of course, that was the beginning of our pilgrimage to specialists and special examinations (I even managed to learn strange words like electromyography and stuff like that). Maialen, only a year and a half old, just cried whenever she saw a white coat… more! Blood test after blood test… I even learnt how to use an arm-lock to immobilize her arm before being punctured while saying to the nurses not to worry, she would cry but nothing is wrong… and nothing was wrong, because THAT was not the important point.
There were days, weeks, months, wondering all the time why us? Why this? Why forever?
Of course, we were not prepared for it. Everyone imagines the movie of his life, and, like in the films that we like, with a happy ending, or, at least, a happy argument; but never with such a hard and EARLY shock in our lives.
How can I forget those visits, over and over, specialists after specialist, having to answer, once and again, those questions that seemed closer to a third degree interrogation: The child was wanted? Any problem during pregnancy? Is there anything you want to add?
But everything passes; it is odd, it is repetitive, it is a commonplace, but it is also true.
We have always been happy with our daughter, we love her madly, we try to be the best parents in the world, we fight for her to be as happy as possible, but we also keep in mind all the time that our duty is to be enjoying Maialen.
Everything has not been easy during this journey. We have met professionals with no empathy at all, proposals interested in reasons that were not concerned with the wellbeing of our daughter. But it is also true that there has been more sun than clouds, like the teachers that we are so thankful to, the Primary School, always concerned with inclusion and socialization, her current school, concerned in the tasks of Special Education, and, of course, ANFAS.
But I don’t want, I can’t, I must not finish without talking about Nerea, her sister.
With the years, the desire and the hopes to have another child mixed with the fears of her “not being OK”. Moreover, although we were sure and convinced to have her, we felt very distressed whenever we were asked “won’t you try?” (as if we had to start dancing…).
But, again, friendly voices gave good advice. It is a difficult decision, courageous and risky, and being absolutely respectful to the people that do not take it, we believe that it was one of our best decisions.
And it wasn’t only the happiness that she has brought to us, it has also been the support that Nerea offered to Maialen: we doted on her, and almost cried, when she just managed to pronounce this sentence: “I am Maialen’s angel, and Maialen is heaven”.
Of course, we keep in mind all the time to respect the individuality of both of them and we are convinced that Nerea does not have to go with a “hanger-on” (we are there to make a couple of three), but we also know that Maialen has added an invaluable extra to her sister’s life and that we are all enjoying Maialen.
So here we are, struggling to go on little by little. Now, sharing these experiences with you and, since a few years ago, spending a part of our time working in ANFAS for all the people with intellectual disabilities in order to make their families able to say, like us, that we are happy and hopeful, with a lot of work and ups and downs, but always enjoying Maialen.