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Thought-Filled Thursday: A House Divided

Posted Sep 05 2013 6:26pm
"Our task must be to free ourselves... 
by widening our circle of compassion to embrace 
all living creatures and the whole of nature 
and its beauty."
 ~Albert Einstein
Warning, this could be long!

Every individual is part of a greater whole: a family, a community, a social group, and in some cases a support group.

I have to admit that I sometimes feel out of place in most every gathered group I am a piece of: family support groups, special needs groups, mommy groups, child loss groups, couples groups, etc. That list could really go on for days and I would still stand out as the different one, I just don't feel as if I "fit" anywhere anymore...

But, I never really have.

And you guessed it, that's part of the reason I made my own support network which grew in to this very nonprofit organization.

"Our prime purpose in this life is to help others. And if you can't help them, at least don't hurt them."~Dalai Lama
But no matter where you are on your journey, you have to find some individual that you can lean on for part of the way. It may not be the same individual for every circumstance, it may be one particular individual for only one obstacle you encounter... 

None of that matters. What matters is remembering that you are not alone, regardless how you feel or how it seems to be, you do not have to be alone.

It's ironic that this post was started earlier this week after I attended a gathering at church on the topic of community. I had written until the following points of interest, because I did not have my notes handy to add them. The ironic part is how perfectly fitting this post is with what I will be sharing shortly.

Those points of mention:

~No one walks alone. Force yourself to find support that will love you unconditionally and make you no longer feel alone, otherwise you will only find yourself falling deeper in to isolation.~
~Those who are living broken & lonely are on a mission to make others feel broken & lonely as well, so that they know they are no longer alone.~
~Even if you can only help a little, maybe not even enough for it to be noticeable, you are still helping to lighten the weight of burden and sorrow for an individual facing difficult circumstances or troublesome worries.~
Like I always say to those who apologize for not being able to do more: 
"The joy of helping others (volunteering) is that you can do what you can as you're able and you are still making a difference!"
~we are MADE to live in a COMMUNITY~
and last, but not least important:
a REAL community = REAL acts of LOVE
So, what is "love"? Everyone has a different definition of this word and not only that, a different way to love each individual specifically. Confused? Examples: You love your parents differently, or maybe even less, than you love your best friend. Or you love your child a far different way than you love your best friend's child that you also love like family. 
Essentially, REAL love:
  • is giving all you have to give, oftentimes at the expense of one's self
  • is sharing in the hurt of others; not because you feel sorry for them but because you are hurt with them
  • speaks the hard truth with a heavy dose of grace
  • covers a multitude of sins

  • "The life I touch for good or ill will touch another life, and that in turn another, until who knows where the trembling stops or in what far place my touch will be felt. "

    ~Frederick Buechner
    So, basically: you love unselfishly, sharing the emotions of their joys and sorrows right along with them, and being honest and open with the advice and wisdom you share with them in order to aide in their growth and betterment. Love doesn't end because of bad decisions or circumstances an individual falls in to. Trust may be broken, even integrity, but real love continues to live on.

    So, why was this post ironically started before today? It's about community and support and it was totally going to go there with the home run... to the value of support groups and having others who just "get it" to lean on. Instead it's going here, with my jaw on the floor and tears in my eyes:

    From my dear friends at Military Special Needs Network :

    She is One of Us

    By now many of you may have heard the tragic news about Kelli and Issy Stapleton. Kelli is the mother of an autistic daughter who has some incredibly serious and severe aggression and violent behavior. This mother is a fellow blogger. I didn’t know her personally, and only read her on occasion, but word of Kelli Stapleton was passed throughout the autism blogging community. Word of her love for her child, the ferocity with which she fought to raise awareness about her family’s situation, the lengths to which she was willing to go to get the help Issy so desperately needed. Kelli, by all accounts, was one hell of an advocate for her child. She was doing it right.

    On September 3, something went very wrong.

    Tuesday Kelli allegedly attempted to kill Issy and herself.

    Her last blog update was incredibly positive and optimistic about Issy’s new behavior plan. What happened between August 27 and September 3 is unknown to me. And in my mind, it’s almost immaterial. I’m not here to judge Kelli. Like her, I have an aggressive, violent autistic child. Like her, I have shouted my concerns from the roof tops – psychiatrists, developmental pediatricians and educators have all heard my concerns about his aggression, SIBs and violence. Like her, I have wept, shaken my fist at society and raged at my impotence to help him.

    And that’s just it: “like me.” Kelli is like me. An autism mom. A blogger. An advocate.

    She is one of us.

    And yet, this.

    There is no excuse.

    But there are reasons.

    And, now, there needs to be change within our community. The special needs community is a house divided. We have anti-vaxxers, biomeds, those looking for a cure. We have staunch vaccination advocates. Those who medicate their children. Those who would never dream of curing their child. And we are all at each other’s throats. Self-advocates versus parents. Autism Speaks against…the list goes on and on for autism and other disabilities, ad infinitum.

    No more. Our differences cannot matter any more. We cannot see another family in this same tragic position. We must put our personal feelings aside and come together to support and uplift each other.

    No more families without hope.

    No more parents without a support system.

    No more murdered autistic children.

    Let the Stapleton family be a rallying cry to all parents, advocates and organizations. Our need for understanding and support is bigger than what petty arguments we may have had in the past. Let this be the good that results from this horrific tragedy.

    If you are a special needs parent, caregiver, or family member – reach out to those around you. Reach out to the stressed-out looking parent at school. Become friends with the other families in the Challenger League. Form a circle of friends. We have to do this. God knows society as a whole will let us drown. No one knows us like us. No one knows our needs, our struggles, our fears, hopes and dreams – except us. Get involved, damn it! Do your part to make sure there are no more stories like this one.

    We need friends. We need support. We need understanding. We need the friendly ear after the meltdown from hell.

    We need us.

    We won’t make it with out us.


    Now, this may have been in the "autism community"... the  nature of the community is really irrelevant. I hope you aren't naive enough to think this is an isolated incident, that it was a rarity. This tragedy could occur in ANY community... it has likely occurred in your own, you just simply are unaware. 

    The story was shared on the personal Facebook profiles of my friends at MSNN and my jaw literally hit the floor as I read it. Not because I was disgusted with what this mother did, but because she had found herself in a place where she felt it needed to be done: frustrated, in desperation, at wit's end, hopeless, helpless to Issy, and so very alone... and she is not alone in those feelings.

    So, instead of sheltering yourself from those who may seem a bit different or who choose themselves to do things alone... please give your best effort to love them and make them welcome in your heart and in the community you are welcomed in. You may not find an ideal fit, but there are individuals who will work to make you fit. 

    “The world is so empty if one thinks only of mountains, rivers & cities; but to know someone who thinks & feels with us, & who, though distant, is close to us in spirit, this makes the earth for us an inhabited garden.” 

    ~Johann Wolfgang von Goethe

    And most importantly, if anyone reading this ever feels like they're in despair and cannot find their way out or around... when I say, "please let me know if you need anything," or, "let me know how I can help you" I MEAN IT. Don't hesitate. Do not think you are bothering me. Or that maybe I don't want to hear about your problems... you're wrong! If it isn't me that you will lean on, find someone you can. (my number is 573-280-2412 and you can text any time or email: President@HydranencephalyFoundation.org at any time and it will remain confidential) Please consider going out of your comfort zone to be that person for someone who just doesn't know where to look... build your own community and make it a welcoming one.

    “What should young people do with their lives today? Many things, obviously. But the most daring thing is to create stable communities in which the terrible disease of loneliness can be cured.” 
    ~Kurt Vonnegut




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