I write to you today with the same open heart as I wrote three weeks ago talking about the loss of Francisco. It seems its becoming “normal” to share with all of you such intimate details of our lives… so “ours”. Before I begin, please don’t look at us as the family to whom everything happens, because each one of us has their own struggles, for sure. We’re grateful for what we are and what we have and thank you, Filipe, for letting me tell this part of the story that is so much more yours, than mine. 

Although it wasn’t diagnosed until he was 12 years old, IgA nephropathy always lived side by side with Filipe. IgA nephropathy is an autoimmune disease that affects the kidneys. Over time, we lived with this pathology, fully aware that one day Filipe’s kidneys wouldn’t resist anymore. We were always told that it would be around 40. Early, too early… 

During my pregnancy, Filipe’s state was getting worse and, finally, the disease that you couldn’t notice before, started to show symptoms: extreme tiredness, vomits and pale skin, among so many other signs. I was in the final stage of the pregnancy when we got the news: “Filipe has kidney failure”. He started dialysis one week before Guilherme was born and the delivery was induced so we could make sure Filipe was going to be present for our first (second) child’s birth. 

Our lives stopped for a while. We only wanted to understand why this was happening to us. We were calm and serene but very scared. We were given a lot of instructions but none of them would make our lives easy. 6 hour treatments per night, 3 nights a week. With setting up and preparations, it’s around 7:30 hours each night. We chose nocturnal dialysis so Filipe wouldn’t have to miss work and so we could have more time for us during the day. But often it’s just not possible… the body doesn’t’ allow it. 

We love to travel and putting that aside was not an option, although we struggled to find useful information on the topic. Weeks and weeks of research. Building courage. Understanding our new reality. Calling things by their names. Not giving up. And love. So much love… 

We never gave up on one another. Much less on life. We figured out how the travels could work and, since Guilherme was born, on all the 7 countries that he already knows, his daddy had to wake up early 3 times a week so he could do his treatment. Prague, Bali, Singapore, Sicily and so many other places. Our daddy is very brave. Planning trips with his condition it isn’t simple, or cheap, but it isn’t impossible either… 

I was a “single mother”, 3 nights a week, during one of the most delicate times after the arrival of a baby. If for me it was something that hurt my body and soul, I will never be able to realize the pain Filipe felt for not being there. For him, there will always be the visible marks on his arms but also those none of us can see. Just him. 

We’re fine. We have accepted our new way of living. We understand that life is not fair, much less easy. Are we happy? Very! One day at a time and many plans for the future. Whatever that may be. We’ll be around…

•