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While I’m playing with WP Themes -my creative side itches- I’ve been curious what other parents and those who have found their path towards healing, recovery and well being from their eating disorder find gives them greatest support and sustains them throughout? At your most difficult times, what has buoyed and held you steady, lifted you up and got you through (like my friend Ganesha up there)?
Do you wish some things could have been done better in hindsight, wished clinicians, treatment providers, community resources, insurance, etc. could have known perhaps more than you, practicing with up-to-date, evidenced-based research and data vs rehashing false and painful stereotypes that can keep a family from getting the best care possible? And that everyone worked more as a cohesive whole vs fragmented, inconsistent, and leaving too many gaps for uncertainty and misunderstanding– or worse barely any informative communication or basic follow up to keep focus on the best methods towards recovery and support?
And if you were/are a parent(s), caregivers, extended-family, siblings do you wish there would have been services that encompassed and included the entire family, and not just for weekly family therapy sessions, the once a month “Family & Friends” events held at treatment centers. But further additional healing and supportive measures like what is comprised in most respite centers/facilities and typically standard for family members when a child has cancer, or any other major life-threatening illness.
All of us know that ED’s are potentially life-threatening if proper treatment and nutritional support are not addressed, and the sooner diagnosis is made and intelligent, comprehensive action taken, the better the chances recovery can be, and less relapsing and monumental expenses for the revolving door of IP, OP, residential, IOP, etc. care.
Being a parent of an adolescent with an ED, there are unique aspects to what parents and family members need, your life and “time” seem to come to complete stops and starts depending on where the progression of the illness may be, how many extra hands there are to pitch in when you need time to take care of yourself, take care of other siblings, reconnect with spouses, get some perspective, and to keep centered and strong.
If I were to draw a graph of how our family has progressed through our daughter’s illness, it would have some deep dips and high escalations, and many dotted straight lines– but not always clearly defined and consistent (thinking about this makes me want to create just such a map/graph!) Sometimes things seem to just “click” and things move forward without much ado; but there are other times when it seems the cyclone of ED can just demolish the very health and Life of an entire household, leaving pulverized rubble and ruin that needs the utmost and gentlest of care and compassion– those are the moments when all your resources get pulled together and you roll up your sleeves and get down to business– you take action and you may find setbacks galore, but you also find incredible inner resilience, Hope, courage and more Love than you ever realized was always there.
Moments like these can also be some of the most magnificent and humbling of points within our human experience …
I feel a deep human need to collectively share these experiences, swap stories- like sharing a recipe!- connect with others who “get it” and aren’t going to be dismissive, discourteous, judgmental or even worse, think I’m a bit over-the-top… off my rocker… box ‘o crack ‘o jack, etc.
And I think if it weren’t for the Internet of collective voices, fellow parental-comraderie and individuals such as an incredible Mom who hosts a forum for parents to find one another, along with so many of you whom I’ve met virtual-via email, your websites/blogs, etc. and found such amazing insight and resolve into this illness– I do feel I would have felt much more isolated and possibly a bit more despairing (I say a bit since my Finnish ancestry is laced with “SISU” = strength… so this would not have lasted long) but it also points to the reality of the importance to support and encourage one another through the recovery and healing process within eating disorders. To make certain adequate treatment is delivered, proper support and resources are available in all demographics.
Change is still quite snail-paced within ED’s, so I think our collective voices and efforts however big or small DO matter and make a difference.
Now if only I could get some of the ladoos (Indian sweet) that Ganesha is holding… my rant would be complete.
-shanti
So many great happenings during National Eating Disorders Awareness Week 2008 – hope everyone is able to partake in some NEDAW events in your corresponding local areas. This year’s theme, much like last year’s, is still quite pivotal and we can all do our share to spread awareness, gently and compassionately encourage those who need support and treatment to take those vital initial steps with our love and backing.
Reach out, celebrate all our diverse shapes and sizes, EMBRACE each other, and share our stories- spread the word, be heard, dispel misconceptions and myths that still surround eating disorders and those that suffer- change can happen even with the simplest and smallest of steps!
Laura Collins, as always, an incredible inspiration, advocate, and Mom has posted some great commentary on the Congressional Briefing for the Eating Disorders Coalition with Dr Cynthia Bulik’s wisdom- Power to the People!
XO
As any writer knows, the power of words can be Herculean.
Reuters Health briefly highlights a ‘applied text analytic methods’ study carried out by Dr Markus Wolf at the University Hospital Heidelberg in Germany that can be helpful towards improved therapeutic treatments, and better understanding of the cognitive processing of the eating disordered brain.
Many of us, as parents with children suffering from an ED might also know how delicate, negative, and self-defeating our childs’ thoughts, behaviors, and words can be to themselves- especially when we know how this illness robs our children of their true selves during treatment and recovery.
That’s why it’s even more vital to remind ourselves first and foremost: we are not to blame or at fault for our childs’ eating disorder; and secondly, to separate your child from the eating disorder/illness, especially at the most difficult moments through refeeding, treatment and recovery when it can be the most challenging thing to remind ourselves of.
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