Guest blog by Jill Anne Castle, mother of two boys, Oliver, 10 & Anthony, 12 (living with Duchenne). Jill works for the Arizona Department of Education in the exceptional student services division as a parents advocate and is the PPMD FACES of Arizona Volunteer Coordinator.

 

The View

I just attended my 9th conference at PPMD…. Ft. Lauderdale, Baltimore, Denver, Atlanta, Philly for a couple, and Cincy… Every year is a very unique experience and has its own personality. There are a few moments that feel like Groundhog Day where I wonder how I have done this over and over with any hope remaining in my bones. Then there are moments when I am filled with emotion realizing how far we have come as a community in such a short time.

 

This year was no exception in that regard. My experience this year felt much like a mouse on an oriental rug who has only seen the small portion of pattern directly in front of him and is suddenly elevated to expand his view. With shock and awe, I realize there is so much more to the whole picture and there are so many more layers to the onion I need to peel away. 

 

The Research

As I sat and listened to a researcher go on expressing his painfully cautious scientific views, trying to enforce his no “no false hope” policy he obviously feels helpful, all I can do is nod and silently count how many more options are currently being presented this year. As I listen, I remind myself of the power of perception and realize how no matter how long this gentleman and I stare at the same cloud; we will never see the same animal. I thank him none the less for all his dedication and hard work and move on. I may not be a scientist but I do understand a few things: I understand discovery starts with unanswered questions. I understand every step of progress requires more money and time than we ever planned on. I understand we, the parents, are the ones doing the majority of the question asking, finding the money and losing the time. I believe we need hope in order to get up every day and “just keep swimming” and if we don’t get up, the research will suffer. It seems a fair exchange, how about you give us hope and we will give you resources and inspiration to continue your work?

 

 

The Care

When my son was young, I sat in research sessions and focused on the science. Now my son is getting “older” (DMD years are much like dog years so 12 is actually middle age at this point), I am much more interested in care. I see now if we don’t keep them as healthy as possible and slow things down, there won’t be anything to fix. Not for our generation of boys anyway. I approach care with the same intensity now that I used to pursue the cure. I remember in the early years seeing parents with older boys and not understanding that by their shifting focus, they weren’t giving up. Mouse on the carpet. At least for the most part, we all agree on the standards of care. Now, we just need to continue to shout them out from taller rooftops. Thank you to our beloved Docs who do.

 

 

The Environment 

Ft. Lauderdale must have been planned so PPMD could continue to foster and support the development of their “Herself First” program. Thanks, it worked. Yes, it’s true; I was guilty of enjoying a small portion of the live streaming while floating in the ocean. However I swear it was only because I was doing what I was told to do, taking care of myself. I also took time to watch all of our beautiful boys and siblings play on the beach and form friendships which I suspect will affect them for a very long time to come. I mean you can only be overwhelmed, stressed or depressed for so long as you listen to waves crash and feel the sun all around you. Spectacular choice, PPMD. Thank you for having one big session to nourish our souls. 

 

The People 

Although I’ve certainly had moments where facing all the folks in our community just reminded me of all the hardship of my reality I try to minimize, I have to come to realize most of my emotional backlash actually comes the day before I leave and for a week or so after I return. When I’m with my war buddies, I am just relieved and connected. I feel safe, free of judgment, unanalyzed and accepted for who I am. I feel a bit of freedom there when Pat Moeschen gently and lovingly puts things in perspective for me, or how I don’t have to explain anything to the Muma bears when I’m irrational for no apparent reason. It’s like a little vacation from the expectations I put on myself in everyday life to try to fit in and be as sane and normal as possible. Only when I’m here do I see the irony of how insane it is to try to achieve that. Lastly, I truly believe the inspiration I get the last night at the dinner helps carry me through another year. Everything from hearing that John Killian (after thinking he would never walk again) is running more than I am to watching the pure joy in the faces of Dr. Bigger, his awesome bowtie and all the boys tearing up the dance floor, profoundly impacts me. And from hearing how hard everyone works every day to gain more and more opportunities for their boys to live an awesome life NOW  to seeing how dedicated parents, PPMD staff, industry, doctors and scientists still are after all these years, help me to see the message spelled out in the rug pattern….I need to just keep swimming.

 

 

Guest blog by Jill Anne Castle, mother of two boys, Oliver, 10 & Anthony, 12 (living with Duchenne). Jill works for the Arizona Department of Education in the exceptional student services division as a parents advocate and is the PPMD FACES of Arizona Volunteer Coordinator.

 


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