We are excited to share a post today from one of our friends in Sweden!  Marie is mum to Hugo, who lives with FOP.  Marie runs FOP Sverige and advocates for a holistic approach to life.

Summertime is supposed to be a happy time, with long days full of fun and adventure in the sunshine.  But what happens when you have a child or young person with FOP?  What are you supposed to do on summer break?

Marie saw this question posed in a forum so took the opportunity to share her outlook on being a mum of a young person with additional needs.

I think it’s important for us as parents to remember it’s hard physically and takes a lot of energy to live with FOP and to be constantly at risk in school and other places.
So I have a feeling our children need a longer break, they always need a longer sleep at nights than others,  to allow themselves time to heal, to recover and recharge.  They also need longer vacations and breaks to do nothing compared to other children.

And to feel that it’s ok to do nothing.

If we put ourselves in their shoes, to be mentally functional as anyone else but live with all trauma and stress and limitations that FOP brings, imagine how much recharge time we would need…

We know how challenging it is to be a parent of a child with FOP, but we have no idea of how it is to actually live with FOP.  And also, they have to deal with caring for us as parents.  Yes they do!  They hear us, they see us, they feel us… and they might want satisfy us but not have the energy to…

So maybe we should focus more on the healthy daily habits that is good for the body, both for them as well as for us as parents – so we also benefit from doing the same.

Daily tiny habits on a schedule that includes drinking water, the breathing exercises, geting outside for a 20 min “walk & roll in the wheelchair”, going swimming once or twice a week (or more if possible), and eating healthily in between food snacks.  Create a schedule for what and when to eat (prepare to simplify) and make sure they help with what ever tiny things they can help with.

So when they have days they do ‘nothing’, they(we) still do the things that keeps them (us) physically and mentally strong and in movement, and that will help them (us) in a short and long term.

These are things that have a purpose and are things they need to do, to better survive with FOP.

And it’s a great way to do these things together, because it’s as important for us as is it is for them.

This is just an another angle to look from – encourage them to take responsibility for their bodies.

Hugo is a gamer but the daily healthy habits is what makes it possible for him to be that.

The good thing is, that we as parents become good role models when we are doing the same thing.  Together we connect and help each other to a healthier, calmer and stronger life.   This then gives us the energy to do all fun things we want to do.

That’s the way I look at life with Hugo and his FOP.

Marie

www.fopsverige.se

Marie Fahlberg

Walk Run Roll for FOP

Svenska FOP-föreningen