blogging in twelve minutes or less

I have so much to tell you, damn it. But the clock reads 4:48 am and I have to be on a plane at 9 am, so let’s see, subtract the three, carry the one and that means, hmm, I have twelve minutes to write. Shoot, it’s already 4:49. Make that eleven minutes to write. This isn’t going well.

But I desperately want to tell you about the utterly fabulous man who read -> this <- and then invited us to do this ..

Yup, that’s Firefighter Brooke in there

.. and who came up with the utterly fabulous idea of making Brooke an Official Home Fire Safety Inspector because well, she really likes to be anything official and maybe, Oh for the love of God, please let it help.

And I want to tell you that Katie has been campaigning to go away to sleep away camp for three weeks this summer. And how NOT ready I am to surrender her for three weeks, but how wonderful I know it will be for her to be in a place where she can be defined by nothing other than her fabulous little self. Not a sister or a daughter, just HER, in all her Katie-ness. I want to tell you how I think we’ve found the perfect place. How it’s all coming together. And how I’m thrilled, yet, ya know, not.

And I really, really want to tell you about how I went to talk to someone the other day. Someone wonderful. Someone not at all like the last person who I went to talk to who had me pretty well convinced that there was no point in going to talk to anyone at all. And I want to tell you that halfway through our intake session, she said something that led me to believe that there really are no accidents.

“I should tell you,” she said, “that I have a teenage son with autism.”

And I want to tell you how those words allowed for a short-hand, a shared language that felt like an open door.

And I want to tell you that there is profound relief in being not just heard but understood.

And I want to tell you that it’s worth trying to find that person. Because I didn’t believe that it was.

And I want to tell you how incredibly proud I am of my dear friend Rachel, who kicked some congressional ass yesterday. Who told her story, her family’s story, and in so doing brought a briefing room first to tears and then to their feet.

I want to tell you that Rachel is incredibly special in so many ways, and yet I want you to know that she’s not special at all. I want you to know that there is nothing in her that is not in each and every single one of us, and that once it’s awakened, it can move mountains.

And I want to tell you how proud I am of her for pushing when the pushing felt futile. For calling again when no one answered. For not taking no for an answer. For asking for help when she needed it. For getting up and starting again every damn day.

And I want you to know how ridiculously excited I was to send an e-mail saying:

In case you haven’t heard, I am THRILLED to announce that John Kerry pledged his support today to sponsor a Senate companion of HR 2288.

His office just reached out to say that they look forward to working with the folks in Larson’s office and the Autism Speaks national office as well as the advocates who came in today.

Forward motion, my friends. You are doing God’s work on behalf of our nation’s littlest heroes. Nothing less.

Much love,

Jess

And I want to tell you how grateful I am to Senator Kerry for taking up this cause, but so too to my dear, dear friend Drew who did so much more than he will admit to make that happen. I don’t have the words to thank him.

And I want to tell you how Brooke was having a tough time – yet again – last night. And how after I’d come home riding high on the day’s successes, where she was brought me right back to the reality of why we spend so much time fighting to make things better. I want to tell you how she shook in my arms. And how it damn near broke me.

And I want to tell you how at bedtime, Lucy curled up on the end of her bed and simply refused to budge when it was time for me to go. And how when Brooke came into my room forty-five minutes later and crawled into my bed with me, the demons too big to fight alone, Lucy waited for her, never leaving her bed. And how after a little while I was able to say, “Let’s take you back to bed, baby. Lucy’s there waiting,” and how calming her presence was when Brooke climbed into her bed and began petting her head. And how I looked at them both as I walked out of her room and wondered who really had rescued whom.

And well, there’s all that and so much more that I want to tell you.

But now it’s 5:09 and well, adding the six and carrying the two .. I’m out of time.

23 thoughts on “blogging in twelve minutes or less

  1. Love you and your brief off-the-cuff briefings, which contain more heart, truth and wonderfulness in them than the thousands of carefully thought out words of so many. Quick hugs, and happy travels today!

  2. Thank you so much for sharing (what has become a part of every day for me). I am not sure how you do it, but you make ( at least me) understand for a few minutes every day ( and a few more upon reflection at various parts of my day)…I thank you

  3. I don’t even know what to comment on because I only have 4 minutes before I am out the door to wait with kids for buses…
    Lucy,sweet,sweet Lucy. I am positive a dog would have a calming effect on Cullen if we could find the right dog. So glad you guys have her.
    Be back for more comments

  4. You can really brighten a day in those short 11 minutes!! What a wonderful post – my favorite part being about Lucy……. Just like the therapist you were destined to find, I believe their are NO mistakes and that Lucy was destined to be yours!! So much positivity and yet a reminder that the fight continues…. I hope it eases…. Have a great trip!

  5. As always, Jess, you can put so much into your blog!! I know yesterday was a great day in Washington, let’s hope the money is there for our military families who really need it. Have a safe trip.
    xoxo

  6. Yet another great post, in just 11 minutes! Got my teary-eyed when you mentioned “who rescued who.” So glad you welcomed Lucy into your home and family.

  7. As i read this, I imagined we were sitting together having drinks and you were telling me this story. Youneverstoppedtobreathe! LOL. Love you.

    And, damn, that’s some awesome, awesome stuff right there. All of it…even the painful parts which then were smoothed over some by the love of a firefighter, dear friends, and the unconditional love of Lucy. xo

  8. When you told us about CARA and asked us to write to our congressmen, i also sent notes to Senators Kerry and Brown. I give your friend Drew all the credit for Senator Kerry’s sponsorship. Senator Brown replied back to me and here are parts of that email.
    “Families of children with autism face barriers to accessing appropriate medical care, including deficiencies in training for professionals, evidenced-based professional guidelines, and comparative effectiveness research and other evidence-based treatment research.

    Like you, I recognize the critical impact that these services and programs can have on children and their families. That’s why I cosponsored legislation to reauthorize the Combating Autism Act of 2006 (S. 1094), which would extend monitoring programs at CDC, as well as other vital research and training initiatives at other agencies. The Combating Autism Act maintains a strong commitment to autism research and treatment efforts across federal health agencies. This bill was signed into law by President Obama on September 30, 2011.

    With this in mind, please know that I am committed to working with my Senate colleagues to raise awareness surrounding autism and providing necessary funding for important autism research initiatives and programs at the federal level.”

    Just wanted to pass along that we hopefully have another ally in the Senate.

  9. Gotta stop reading before work! I tear up every single time. You have such a way of making me feel less alone in the world. Thank You!

  10. “she said something that led me to believe that there really are no accidents.” Excuse me? LED you to believe? You’re still being led? You’re supposed to be there by now! : )

  11. I went to bed last night knowing I’d need a strong cup of coffee in the AM to get through the day ahead. This post gave me all the energy I needed! Thank you!

  12. http://www.change.org/petitions/director-of-public-relations-allow-the-kidney-transplant-amelia-rivera-needs-to-survive#

    I’m sorry that this is off topic, but this is the only way I know of to contact you.

    This little child doesn’t have autism, but this could very easily happen to one of our kids whose IQ isn’t up there. I was hoping you could call attention to her awful heart wrenching plight. She doesn’t have long to live. She doesn’t have long for her parents to change the mind of the hospital.

    You write wonderfully. There are always so many other comments that I don’t normally post a comment. I do read you often though. You say things that I want to but don’t have the gift of language to put into words.

    • leahna, thank you for sharing. i had posted the story a couple of weeks ago on diary’s facebook page, and the response was overwhelming. i’m dumbfounded that in this day and age, that thought process can survive. it is simply unthinkable.

  13. Pingback: Late Bloomer « StimCity

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