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So, how do you go about delivering the information that your son has a life-limited muscle wasting condition, will lose the use of first his legs, then arms, need a power-chair full time and everything else associated with Duchenne. Its hard enough trying to find the words to tell adults.
Now imagine trying to tell children.
I know. It seems impossible.
Its like ‘the birds and the bees’ once you start down the road of truth, there is no going back. But there are ‘milestone points’ in the journey of telling children about Duchenne in the same way as there are milestone points in the birds and the bees. When you talk about ‘the daddy gives the mummy a seed which is fertilised and grows into a baby’ that’s like telling children that ‘your muscles are different’ or that ‘you are getting tired because your muscles are different, its OK’.
Its when you get to the ‘but HOW does the Daddy give the Mummy the seed’ that’s when, once you go over that line there is no return! With Duchenne, I feel this stage is confirming to the children the long-term prognosis of the condition. A stage which we have not yet reached.
After Samson was diagnosed in November 2015, within a year we had organised his ‘wheels’ through Wheelchair services, had him fitted for his ‘bedtime boots – BTBs’ (night splints) and started his steroid regime (‘down it, down its’). Each of these milestones have been occasions to open up more and drip feed more information to the children.
We started by talking with Samson (and his older brother, Leo) about how his muscles are different to his friends. This progressed to the effect of this difference, discussing how he is likely to feel more tired. We then helped him understand how he can manage his condition, by taking breaks when he needs and by doing his physio, taking his meds and wearing his BTBs. At this time, I explained to Leo how Samson will reach his milestones at a different pace and how we as a family will celebrate his achievements differently (when he runs across the room, or scores a goal, or rides his balance bike).
We started referring to his condition as Duchenne about 18 months ago when I started working for Action Duchenne as the word was become more familiar to them.
We have since talked about the genetics of Duchenne, explaining his 46-51 exon skip as a break in the ‘code’ for his shock absorber gene. This is a description that particularly Leo could grasp very easily. He even asked if it was something which can be fixed and was Samson born with Duchenne.
And I answered him truthfully. If he is old enough to ask the question he is old enough to hear the answers. I said potential treatments will help to reduce the effects of the condition and that he was born with Duchenne in his genetic makeup. Leo seemed to understand.
We started having outbursts from Leo. Angry episodes where he would flip. He would kick and punch me in a terrible rage. I sought a bit of advice and started to take time out with him. We’d go out for an impromptu run. Just run out for 10 minutes then 10 minutes back. In this time, he could ask me any questions, spend 1-2-1 time with me and burn off his anger. It really worked for us.
After these challenges, I changed the way I spoke with the kids about Duchenne. Especially with Leo, I now try to speak plainly, without emotion about Duchenne. I read that often children do not talk to their parents about difficult subjects because they are worried about upsetting them. So I make a point of never becoming upset when talking about Duchenne.
I give factual information and certainly never have or ever will put a time limit on anything.
I heard from an adult living with Duchenne that his only regret was listening when someone told him he would not live past his teens. Who has the right to tell someone else how long they are going to live for!?
I want Samson to live the most enriched and fulfilled life that he wishes to, so I will always give him the power and belief to do this.
This year, I have made the decision to take all 3 children to the AD Conference in November. This will be their chance to meet other children living with Duchenne and their siblings. When I asked the boys if they want to come, their faces were a picture. Samson could not believe that there are other children with the same muscles as him, who also have BTBs, take ‘down it, down its’ and get tired like he does. They could not believe they were going to actually be able to meet the others and play with them! Knowing there are others in the same situation seems to have really helped both boys, maybe it’s a safety in numbers feeling. Maybe subconsciously they don’t feel like ‘the only ones’.
I also give the boys the opportunity to ask any question they like. I give them an open forum where they can ask questions about our family, about school, about friends, about life, about Duchenne. This usually happens at the dinner/breakfast table, or at bedtime. It has sparked some great discussions which have led to open chats about everything under the sun, in the hope that, when either of them have a burning question about Duchenne, they can raise it, without the fear of upsetting us or fearing what the answer will be.
Being so open about it is not everyone’s approach, and it can, of course lead to questions you may find uncomfortable. But all I see is the positives. Duchenne is not something to be embarrassed about. It is not something to fear.
I hope that the boys (and Rosie!) will grow up wanting to talk about things with us. To be honest, at the moment, lots of the time they talk about trumps, poo, flossing and little swears, and right now, I join in and relish they are sharing this with me. As time goes on I want to be the person they talk to about the bigger stuff. With any luck, I will be!
(some world-reknowned experts worked with Action Duchenne to create a fantastic resource that I turned to at the beginning of our journey. Take a look here
https://www.actionduchenne.org/Handlers/Download.ashx?IDMF=dd1c5d17-25a4-4e98-ab20-0f45ad65bd90