Different views of Duchenne. Duchenne walks in the door and everything changes. Everyone’s heart is breaking in different ways and at different times and everyone has an opinion. Fingers point. Like sleuths we want to find out what happened, how it happened and where this diagnosis came from.
Moms wear the guilt no matter. Moms feel guilty as if they missed something along the way, some bit of information that might have prevented the diagnosis. They roll up their sleeves. They will learn to fight, to navigate the systems, to find the best for their son. Often, moms feel like the responsibility is lopsided, resting totally on their shoulders. They view others (as in everyone else) as doing less or not enough or nothing at all.
No matter the support from husband, partner, grandparents, friends… Duchenne rests heavily in the mom’s lap.. And it hurts. Intellectually we can discuss ‘de novo’ or new mutations, new/unknown carriers, spontaneous mutation in conception or gonadal mosacism, but emotionally this genetic disorder is a heavy load. And we feel alone.
Family members are often supportive, but somehow their support looks different than we expect, different than we need. And yet, we have no real way of expressing what it is that we need. Often we just don’t know. What is the definition of ‘help’ in this instance?
Sometimes it feels like our husband/partner is remote, distant, unavailable. People hover, not knowing what to do or what might be helpful. Often, after the immediate impact of the diagnosis settles over the family, we notice people return to the life they have. And we are jealous because we have no ‘old life’ to return to. Life with Duchenne means establishing a new normal. Duchenne follows you, prefaces your every word..
I had to make some sense of this phenomena. To be honest, I had to make some peace with it. Anger can take over and frankly it takes up so much energy.
I had to draw a picture in my mind in order to understand. I thought about a football field and how the view of the game was different. The view and your response depends on your position, where you are sitting or standing. I thought about Duchenne as if it were in the middle of the field and everyone watching from a different point of view, some on the field, some on the 50 yard line and some in the end zone. As I thought about it this way, I realized all of us view Duchenne from different places and at different times. There are days when we are all on the field and there are other days, when our strength is fading that we need some distance and maybe to disappear for a short time into the end zone, if only to catch our breath.