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When you begin to touch your heart or let your heart be touched, you begin to discover that it’s bottomless, that it doesn’t have any resolution, that this heart is huge, vast, and limitless. You begin to discover how much warmth and gentleness is there, as well as how much space.
-Percy Bysshe Shelley
Some of the most common events become quite significant when your child has an eating disorder, and at times worry seems to be a constant irritating leach sucking your Mom-force astray even when the coast is clear.
For the past two years our daughter has missed out on class trips due to the pernicious nature of the eating disorder. And as if heading back to school doesn’t already bring with it some added stress and anxiety for a developing young middle-schooler, these trips always take place at the beginning of the year– great idea for setting the tone and building relationships for the school term, not so great idea if your child is trying to gauge the semester and transition in the first couple of weeks tacked on with the complexity of managing an eating disorder.
For the first year of middle school this trip was a no-go. Last year also didn’t happen since she was not yet able to make food-meal choices on her own, as well as eating without some additional support, and being comfortable enough to ask for help if encountering some difficulty and parents and family were not around.
Initial diagnosis of the eating disorder, immediate hospitalization, the following year inpatient and residential treatment, along with intensive outpatient treatment; days-months of missed school, family and social life seem strangely long ago, healing does take time.
This school year is markedly different though, our daughter is actually getting a bit pissy about missing out on certain aspects of teen social life and events her friends and peers seem to do “so easily”. These are things she also did easily, without second thought, prior to the eating disorder and another positive sign that she is remembering and awakening to her former Self.
This year’s “Leadership Trip” my baby is on the road for three days of fun and camaraderie. First to camp, canoeing, rope climbing and mingling while looking at the constellations, second to the State Capital, then finishing off sliding down the plastic tubes of a favored water park, who would want to miss this?
She left this morning her bags packed with extra snacks and necessities, pre-ordered her meals (all by herself- yeah!) and wasn’t embarrassed to give an extra hug.
But my ultimate moment came seeing her classic dimpled smile!
The deeper you resides in its own space,
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.
Kar Men Shreshth Kamandalu Chakra Trishoodlharta
Jagkarta Jagkarta Jag Palankarta
Om hara hara Mahaadevaa