Today we introduce you to Mariana de Ugarte, a Galician living in Seville and a graduate in Tourism.
An admirable woman who we want to make known to you (if you don't already), who a few years ago completed her life project with her husband Jose Luís with the arrival of their children, Mariana and Jaime, both with Syndrome. Down. Since then, she has worked to give visibility to people with trisomy 21.
Q: How did you find out that Mariana and Jaime had Down Syndrome?
A: In both cases we discovered it after the delivery, despite the fact that Mariana's pregnancy was closely monitored. We were both surprised with an extra chromosome at birth. That chromosome that has made us discover a wonderful world that we had not been able to see before.
Q: Before the birth of your children, were you familiar with Down Syndrome?
A: No, and it is something that does not help at all when it comes to receiving the diagnosis.
Ignorance causes fear. But immediately my husband began to collect information from associations and foundations and thus really discover what we were up against and in what way this could or could not condition our daughter's life. In this way we learned that she would develop slower and more deliberately, but that with effort and tenacity, respecting her times and adapting to her rhythm, she could achieve many things.
That's why I always say that the essential thing is to lose fear of the unknown.
Q: As a couple and new parents, how did you deal with the arrival of Mariana?
A: On the one hand, with great enthusiasm, being parents was what we had always wanted and we already had our daughter in our arms. We couldn't be happier.
But on the other, we were very afraid. The pediatrician, who was wonderful when it came to communicating her suspicions to us, had warned us that it was possible that Mariana had some type of heart disease or disease associated with Down syndrome (it is common). From that moment on our only concern was her health, and our only wish was to be able to take our girl back to the hospital as soon as possible. Thank God, after five days in the neonatal unit, we took her home.
Q: So far, what has been the most difficult for you in the upbringing and development of Mariana and Jaime?
A: I believe that parenting is a constant challenge, in which you doubt yourself a lot, whether the decisions you make are the most appropriate for each child. Because it is not the same with each child because they do not usually need the same thing. And this is complicated, because also in our case, the two share something so characteristic that is Down syndrome, and that it implies so much in their day to day.
We spend the day trying to stimulate them to the maximum to get the best out of them, and the eternal dilemma is; Do we do enough? Do we demand too much?
They do not stop being children and the most important thing is that they are happy.
Q: Any advice for mothers-to-be of babies with an extra chromosome?
A: I would tell them not to doubt themselves. If that child is in her womb, it is because she is the ideal mother for that baby.
Do not underestimate it, without any doubt it will give you the greatest joys of your life.
There will be difficult moments, without a doubt, everyone has them, but the satisfaction and pride are immense, and your love makes up for everything.
Many thanks to Mariana, Marianita, Jaime and Jose Luís for sharing this time with Cherubina!