My dear friend, Jess, has an achingly beautiful blog dedicated to her family, and dedicated to awareness and advocacy around autism. It's a blog about being family, about the acute joy and pain of parenting, about living life fully, and reaching out and reaching in. Every post hits me in the heart. In a good, growing way(and I am not even a parent.) Anyway. She gave me permission to post her entry, Triage.
It's about helping and being a village and being aware and taking action. Please read it. Please. Then act. Share Billy and Katy and Scott's story.
Triage, by Jess Wilson My friend, Scott called me yesterday. Whoa! Don’t just keep reading. Click on Scott’s name and read the story. Please. Pretty please. This is important, folks. This MATTERS. You click. Read the whole article. I’ll wait.
“I need help, Jess.”
Sometimes, life is a game of triage.
What matters most? What needs my attention most urgently? Who might literally die if I don’t take five minutes to get educated and HELP.
We fight for awareness. We walk and hand out buttons and magnets and scream from the rooftops and we watch hours and hours of footage about autism. 1 in 144.
How many people do you know who know what SMA stands for? Yet it KILLS MORE BABIES THAN ANY OTHER GENETIC DISEASE.
We have big names. Bob and Suzanne Wright - love em or hate em, they know people. They know a LOT of people. With money. A LOT of money. And Influence. Yup, a LOT of influence. Jenny McCarthy - love her or hate her, she is VISIBLE. She’s on the cover of magazines. Mike Savage (I’m not giving you the choice on this one and I sure as hell ain’t linking you to him) - hate him, he talked about autism because autism is VISIBLE.
SMA isn’t sexy. It’s heartbreaking. It’s the stuff your worst nightmares are made of. It’s the stuff that no one wants to talk about because we can’t bear the pain of it. But Scott and Katy and so many parents like them live that pain every day.
We HAVE TO HELP. Children cannot die on our watch when they don’t have to. No one should have to live this way.
We are hurting.
They are dying.
SMA has been chosen by the National Institute of Health to be a model for translational research because it is the closest to a treatment or cure out of 300 neurological disorders. Think about that. We are this close. This flippin close.
We are all connected. SMA genetic research in the “Genomic Modulation of Inherited Genetic Diseases” project may provide novel insights into potential ways to treat SMA and 40 plus similar diseases:
Tay-Sachs Sandhoff Parkinsons Alzheimers Friedreich’s Ataxia Spinocerebellar Ataxia Type 1 Spinocerebellar Ataxia Type 2/Episodic Ataxia Type 2 Spinocerebellar Ataxia Type 6/Spinocerebellar Ataxia Type 7 Deafness/Dystonia Myotonic Dystrophy Duchenne Muscular Dystrophy Late Infantile Metachromatic Leukodystrophy Late Infantile Neuronal Ceroid Lipofuscinosis X-Linked Adreno-Leukodystrophy Menkes Types A and B Niemann-Pick Disease Fragile X Machado-Joseph GM2A Gaucher Disease Sialidosis and Galactosialidosis Infantile and Late-Onset forms of Neuronal Ceroid Lipofuscinosis Classic Late Infantile Neuronal Ceroid Lipofuscinosis You see Fragile X in there, right? I knew you wouldn’t miss that.
They need money. $1.3 million to be exact. They need to help fund incredibly promising gene therapy research.
If beautiful, delightful Billy were your child, you’d have called me too. You’d have called anyone and everyone you know who might be able to HELP. Please, pass this on to anyone who will read it.
It takes a village, friends. And the village that I want to be a part of, no the village that I KNOW I AM A PART OF, fights for its children. All of them.
so...yesterday (Sunday evening) my beloved's mother died. it's a whole long story, but basically beloved's mom took a turn for the worse, and beloved tried oh so hard to get there in time, but didn't.
beloved's mother suffered from alzheimer's, and now she is free...she has her precious memory back, her stories, her words, her emotions, her self. that is worth an alleluia, indeed.
she was always dressed to the nines. heels, skirt, matching sweatsuits, and of course, pearls, diamonds, and gold bracelets, as many as could fit on her wrist. she loved her lipstick, especially. ever the lady, ever the lady, for as long as she could. even last winter, in spite of not having anything to put in it, she carried her pocketbook wherever she went, which was usually out for ice cream with a family member or friend.
she loved ice cream. she would eat ice cream for dinner, quite often. I mean, LOOOOOVED ice cream. also liked soup and crab cakes.
a single mother, she supported her children in the 60's and 70's by running her own business. she had savvy, and finesse.
rest well, dear one, be at peace, be free, be all of who you are whever you are now. amen.
Yesterday was six months to the date AND day that my 19 year old nephew committed suicide. I was thinking about his mother, my sister, all day...I knew she took the day off from work. I sent her messages, and called.... late last night she wrote me...and said that she spent time with one of Aric's dear friends...they went to the coffee shop he worked at, and had an "Aric Special" of three shots espresso, raspberry, chocolate, and vanilla syrup...and then to the cemetary, and then watched the slide show from the funeral. Later, a couple of guys from his band came by to see her...and then, late in the evening, she released yellow balloons with his birthdate and heavendate and messages of love tucked inside into the sky, declaring her love for her son forever.
She said it was an o.k. day.
I am so proud of my sister.
We miss you Aric. There are over 18,000 visits on your MySpace page. I think lots of people miss you. We will all always love you.
I have been trying to be more attentive to the moment and aware of my breathing...and my thought processes. I want to be more self-caring and less self-absorbed. Self care is being conscious of how my choices are about loving and being present to what is truly nourishing and attentive to being whole, being connected to the Divine, to my raw, beautiful self... Self absorbed about making choices that keep me in patterns of self doubt, numbness, or on the surface. For example, it turns out that I have borderline high blood pressure and borderline high cholestral. Heart disease is rampant in my family, on both sides, so in some ways, this isn't a huge surprise. But I have choices--I can feel defeated by this, and go out and have pizza and a beer, or whatever, and let that clog up my arteries more, but I will feel comforted. But, that isn't self care. I am overdue on my mammogram. That isn't self-care, it is denial. My weird thought process is if I don't get one, or get my physical, or don't step on the scale, then nothing is wrong because I don't know if anything is wrong or not. What I WANT to do is be more gentle, more open to what is nurturing and forgiving and honors the inner strength of my heart. (however, I do admit that even writing this post could be construed as self-absorbed...)
I resonate with Paul, where he admits "that which I would not, that do I do"...thank God, that grace abounds, and that leaning into that grace can only be construed as self care. Amen.
I am having terrible writer's block....the sermon this week is really not coming together, mostly because I keep avoiding it. I have spent the last hour "working" by browsing itunes and online shoe stores (no I didn't buy anything, that would be productive!). What's the problem? Part of it is that I am preaching on Genesis 24, which is the birth of Esau and Jacob, the famous biblical twins. Rebekah, their mother gets a really bad rap from commentators and preachers, because a. Jacob is her favorite b. she devises a plan to for Jacob to get his father's blessing as the firstborn son. Esau, the oldest, is Isaac (father) fave. But the context of Rebekah shows her to be hospitable, willing, daring, even, and with a close relationship with God. She is the first woman in Genesis to seek God out in prayer--in a lamenting prayer, at that, when her children are still in her womb, struggling, which must have caused her great discomfort. I don't really defend her deception, which isn't even the text I am preaching on. bllllleeeeehhhhh(that is a raspberry sound with my lips). I am trying to just get all this out here, so I don't end up with all of this in my sermon which I will just have to edit out. Writing is so messy......but I woudn't have it any other way. Blessed be. Amen.
so...yes, the economy is scarey. yes, we all need to be much more aggressive in how we use precious energy. yes, we should be saving every penny and not splurging... but if you get something, oh say, like a "used" jacuzzi, and put it in your backyard, isn't that like, uh, recycling? it's for a more healthy lifestyle, right?
ah, July. I always feel so lazy in July, like everyday should be summer vacation. But, alas, it isn't for me.... I used to have that luxury when I was on a ten-month contract, as a college chaplain, as a teacher...and although I am grateful for the slow-down pace of New England congregations in the summer, with fewer meetings on my plate, and a little more time in the day, this is key time for planning, envisioning, scheming, dreaming, organizing, filing... but I just want to read books and sip lemonade and do a little teeny bit of work. ;-)
My mom has been visiting since Friday. She will be here until next Wednesday, the 9th. I am so glad to have her here, in my home, spending time, laughing, talking, and entertaining her. She is a pretty easy guest, and I love my mom. She definitely has aged some since January; and I see her edges of the frailty of old age poking through her presence....she has chronic back and hip issues which limit her mobility somewhat, and she searches more often for the word or phrase or memory she is trying to articulate. I feel protective.
Well, off to work. Enough procrastination, time to dive into my life. Amen.