Inspiring stories • Article

Joao
“My father is a Marvel Superhero”

At the time my son Miguel said that, he was nine years old. Miguel is an only child, and he’s always been the centre of the family. 

He’s always had a curious mind. When I was first diagnosed with MS, his curiosity began to grow and our relationship began to evolve.

In his head, daddy was stealing his attention. He began to see me get more attention, go to medical appointments more often and start getting treatment at the hospital. For him, daddy used to be more playful and communicative before all this. Then all of a sudden, things had changed, and something was happening that he didn’t quite understand. 

It wasn´t easy to manage this whole situation and see Miguel struggle to adjust to this new situation. At the same time my father was hospitalized with lung cancer, which presented more difficulties. 

Parenthood is a two-way challenge. You feel like you are still a child yourself with parents of your own, and secondly you have a newfound responsibility as a caregiver. 

Explaining to a child that their father has a disease is not easy. As you deliver the news you have to deliver it with a lot of affection and reassurance. This is where my wife has been helpful. Her role has provided me with support throughout the entire journey so far.

A child´s ability to overcome obstacles is much better than we may think, but they still need a lot of guidance and love. I remember the day I put my right hand in a fryer while frying potatoes. The result was a burned hand, although painless; given the loss of physical sensitivity on my body´s right side. Miguel was astonished with my reaction…”Whoooa!” – he said, he thought his father was a superhero. But the lack of pain was due to my MS.

Allow the family to adapt to a new reality and find a new balance, understanding the relational patterns will help everyone find strategies to cope with the new reality. And remember, it is essential to work on the parent-child relationship so that you both feel understood.

Miguel is 20 years old now, but is still one of my top supporters, and I am one of his. He got used to have a parent with MS. As a matter in fact, our bond has been strengthened by it

Barbara
My son has lived almost half his life with a parent who has MS. My diagnosis coincided with him starting high school, so the stress for both of us was difficult to navigate at times. 

I tried to hide as much as possible from him, sleeping when he was at school, underplaying my mostly invisible symptoms and maintaining as much of our previous routine as I could. It was important to me to keep his childhood as worry-free as possible. Inevitably though, there were things I just could not do, such as attend several parents’ evenings at the worst of my MS, or take him to rugby fixtures, or even to the beach due to heat intolerance. 
Luckily, I was surrounded by family and friends who took my place, but I still felt guilty. My son turns 22 this year and we recently had an honest and open conversation when he explained that he had felt incredibly frightened at the beginning of this MS journey. My heart broke into pieces as I could never give him that time back. 

However, he then said that he thinks his experiences have made him a better and more compassionate person. During the pandemic, he raised money and started a food box charity to help families in need, specifically targeting those with MS. He is also proud that I managed to pick myself up, find a job I love, return to University to take a PhD and to campaign and write about MS, this in turn has given him a drive to succeed in his own life.     

Parenting is difficult at the best of times, but when a parent is ill with MS, especially if like me, they are a single parent, the burden on both parties can be enormous. Being open - within reason - and explaining in terms children can understand is vital. A little bit of leeway also helps; I used to allow more than the usual amount of sleepovers as it was beneficial for both of us. I also put less pressure on myself to be the ‘perfect parent’; sometimes just being available was enough, something I could still do sitting on the sofa. 

I also reached out to other parents on Twitter and found their experiences and tips invaluable – there is a great community out there. Ultimately, we muddled through, and of course, I made mistakes along the way, but that is the same for any parent.