My husband and I usually joke that we never do life in easy mode: we’re constantly doing more stuff than we should and most of the time with some pretty big difficulties along the way. When we had our son, Gonçalinho, we had just bought our first house. We dreamt of the day that we would bring him home and, for the first time, we didn’t expect any problems – we were healthy and the pregnancy was completely normal. However, a few hours only after our little sparrow – that’s what we call him – was born, everyone could tell that something was not quite right. He was severely hypotonic, extremely floppy and hypermobile. Life was not the same after that.
The road to a diagnosis ended up taking almost 12 months (Osteogenesis Imperfecta and Ehlers-Danlos Syndrome, two syndromes without a cure). We had already learned by then that he had severe allergies as well, reacting by ingestion, smell or contact and going into anaphylactic shock a few times. During this time, he was constantly getting hurt (joints, muscles and bones) and was developmentally delayed – e.g.: while other kids were already pulling to stand, he was still mastering how to sit upright. In order to help him achieve gross and fine motor skills, he started doing physiotherapy when he was 1 month old. Later on, we added occupational therapy, speech therapy, hydrotherapy and music therapy.
Our life completely changed. Our son was disabled and would need help to learn things that most kids do naturally. He fractured with minor trauma and subluxed while doing the tiniest of movements. I had to stop working, due to the amount of therapies that he had – at least two sessions every day. I went from having a team at work to being completely isolated at home, searching for the next thing that could help him develop “normally” and I became obsessed with information. Most special needs parents need to stop working, at least temporarily, to give their children the best care possible. Unfortunately, our government is not very flexible with special needs parents in terms of working conditions. I am very lucky to have colleagues and an employer that completely understand our situation, but most parents are not so lucky. Their employers or colleagues might feel that the parent is skipping responsibilities at work, when in reality most of them, sometimes, don’t even sleep in order to manage everything for their children.
Slowly, I started to understand that a lot of people would look at us with pity, like his disability was something wrong or a taboo, a burden even. Not a lot of people would understand when I tried to explain what he had, what he was going through. So I started writing to break down barriers, to show that having a disability doesn’t make you less worthy of a fulfilling life, to explain in easy terms what he has and to show all the parts of our life – the bad but also the good ones.
I got involved in several projects to help advance the knowledge about his diseases, anything from TV to writing articles to magazines.
I became an activist, so no other parent has to deal with this alone. I even created a community for parents of other children with specifics needs (www.facebook.com/groups/maespaiscuidadores), so we can all support each other. I also never lost touch with my professional life: during all this I completed another master’s degree and kept completing courses and getting certificates.
Nowadays, Gonçalo’s almost 3 years old. The biggest challenge we face is finding the perfect balance between letting him try new things that help him develop new abilities while at the same time protecting him from hurting himself. He still doesn’t walk or talk (he’s starting to say a few words). He still does therapies daily. He has to be monitored 24h/24h, since any activity can cause him to break a bone or get hurt in any other way (e.g.: one of his fractures happened because he didn’t seat correctly). It is very taxing to plan all his appointments – his daily therapies, his doctors’ appointments, medications, hospital stays, among a lot of other things; we keep a calendar just for him. It is also very difficult for me to deal with emotions at times, especially when he is going through a procedure, or he gets hurt. Luckily, most of the time I already know what to expect and how to prepare for what’s coming. I still am obsessed with information, but I try to share it in the community instead of spending hours at medical articles or any other source of information. I think that was my way of overcoming the obstacles faced – by learning as much as I could about my son’s conditions.
My mission is to educate. To promote a human conscience, instead of feeling sorry, ask “how can I help?”, ask parents for permission before feeding a child, for example, you never know if that child has an allergy or other invisible condition. To raise awareness that it is ok to have a disease, what is not ok is to be excluded because of it, especially when we talk about children. Indeed, “it takes a village to raise a child”. To make people understand that it is not easy at all to have a son with two rare diseases but it isn’t also the end of the world.
My motto is “information is the path to inclusion”, since we tend to fear and disregard what we don’t know; if we have access to information, the taboo is gone. I think my message for any parent going through a situation like this is that there are good days and bad days, we just have to make sure that the good ones surpass the bad ones so the balance is always positive.