Partners, family members, friends - all respond in different ways at different times. I had to figure a way to understand.

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.

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Comment by Veronica E. on October 12, 2008 at 5:39pm
This is exactly what I need to read at this moment. I've been frustrated that my husband hasn't involved himself more with reading about Duchenne, and seems annoyed when I talk about it ad nauseum and worry constantly. He wants us to just enjoy these first few "easy" years and let all of the worry and thought come later. I on the other hand, can't just put it out of my mind -- I don't work that way. This blog has helped me to understand he's just on a different part of the field right now, and that's OK.
Comment by Pat Moeschen on October 9, 2008 at 5:51pm
Kari-
Unfortunately, there is ignorance everywhere. You are not alone. Hang in there.

Warm(er) regards,
Pat
(male)

Staff
Comment by Pat Furlong on October 4, 2008 at 8:07pm
Hello Kari,
One of the many difficult issues is friends. It used to drive me crazy when friends would say "he doesn't look sick" as most of the time we define 'sick' in terms that are visible. It is hard for friends to look closely and even then, in the face of obvious weakness, they might still say 'well, it's not actually too bad", when your heart is breaking and you see those signs as reminders of Duchenne and evidence of progression. The other side is hearing our friends express difficulties with their own children as in 'didn't run well in soccer" or something that sounds so meaningless in the face of Duchenne. There are just times we have to take a breath, fight the tears and frustration and keep putting one foot in front of the other. It's just not easy...
Warm regards,
Pat
Comment by Kari on October 4, 2008 at 6:41pm
Hi Pat, Thanks for your post. I am still trying to figure a way with one set of friends in particular who think we are making up the diagnosis and believe the Dr's are wrong since he is still ambulatory. That has been the hardest part of this whole process.
Comment by Misty VanderWeele on October 3, 2008 at 1:52pm
"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."

Exactly, thanks for this Pat, I needed it. I wrote these words in my journal to revisit when I need too!

Love,

Misty (Luke's Mom)
Comment by Dina on October 3, 2008 at 8:19am
I feel like Duchenne takes on a life of its own. I find myself addicted to learning everything about it. Then I am walking around in a daze because of information overload. I feel depressed and alone at times and feel like my family truly does not understand the obstacles my son will be challenged with. So your reference to the football game makes a lot of sense to me! Take Care.
Comment by Kim Maddux on October 2, 2008 at 9:53pm
Very well said. This is a great analogy. It does sum up my life of the last 4 years. Thank you for your words of wisdom.... All the Best.

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