love

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This …

photo-40

… which is out of focus because even when little Miss isn’t technically moving, she’s still, ya know .. moving.

It says “I felt love when Winston licks me. Some times we do is she petting you?”

“Is she petting you?” is a script. It makes my girl laugh. When she is petting Winston, she asks us to ask him if she is petting him. I trust you to follow that. It’s just, you know, what we do.

And when we do it, my girl FEELS LOVE.

This is all I need to know.

*

Ed note: To read more about Winston and how the girl who was once TERRIFIED of dogs came to adore him, click HERE

Ed other note: If you’re considering finding your family’s Winston, please, please, PLEASE  adopt. Click HERE for a great place to start.

15 thoughts on “love

  1. She is darling. It is National Incredible Kids’ day. I honor Brooke, Katie, you and Luau. You are all incredible kids.

    Love you,
    Mom

    • While talking about Mother’s Day recently, Katie asked me why there was no Kids’ Day. I told her because every day is Kids’ Day. I beg of you, for the love of God, please don’t tell her about this.

  2. This really doesn’t have anything to do about the post..but I’m curious how Brooke handles this….I know u sleep with her as I sleep with my little guy. I lay with him till he falls asleep then seek out and finish up what needs to be done and watch a little tv. If he wakes up and I’m not in the bed he loses it badly crying so hard he almost throws up and I’m literally up there in 5 seconds once he calms down he says things like u left me, I couldn’t find you, I thought you were gone forever!! If feel horrible but when he’s asleep it’s the only time to get things done and have a little “me time” how does Brooke handle it if she wakes up and u r not there? And what do you tell her? I always feel guilty when this happens so sometimes I just stay in bed for the rest of the night.

    • I’m so sorry. That sounds awful. But I don’t sleep with Brooke as a matter of course. I only had her in my bed while we were figuring out what was happening with her seizures. It was about three weeks in all. Perhaps if you talked with him about what to do if he wakes and you’re not there? Or make a visual to keep by the side of the bed that shows you downstairs and him calling you and you coming up? Perhaps it could offer some support. Hope that helps. I’d suggest putting it out on the community support page for suggestions. Good luck!

  3. Hi Jess – your series of posts this week all left me thinking deeply about love, hate, dreams, acceptance, tolerance, and growth. You started the week with “circles” and how your circles are expanding, and made me realize our families’ and our kiddos’ are too. And mine are as a mom, in large part thanks to you.

    You ended the week with the profound article “hate”, which finally flipped the switch in my poor, merely neurotypical brain to help me understand that no matter what genetic or environmental cocktail of coincidences produced my two kiddos’ brains and bodies, to say I am [fill in the blank – angry, embarrassed, hateful, restful] of autism, then I am saying I am those things about a fundamental part of who they are. Would my son be reading chapter books at age 4.5 if he was not autistic? I don’t know. Would he unabashedly approach ANY stranger with kindness, joy and open arms for fun and play if he wasn’t autistic? I don’t know. Would my daughter be able to recite 500 word children’s library books in 2 days if she wasn’t autistic? I don’t know. Would she still sing like an angel? I don’t know. Yes, life would be easier without autism sometimes, but they would not be the two kiddies I love to infinity. Thank you, thank you for helping me finally feel what they would feel if I [resented, hated, hid, raged against] their autistic brains and bodies, and lovely autistic hearts.

    But I wanted to write to you about love. About tolerance. And about hate. You heard a lot of “Amen sistah” and “Right on, mama” to the “Hell no” post. I had a different reaction. I actually reacted to the anger that radiated off the page against the people – the world? – that have NOT been blessed with our eye opening experiences as autism families. Some people have not been blessed in this life to know a person with extra challenges who overcomes those challenges day after day and is extra fabulous because of this determination, and also because of the challenges’ often coexistent strengths.

    In your “about Diary” paragraph you say “I will be forever grateful to Brooke for unwittingly breaking my insular little world wide open. For allowing me — nay, forcing me — to see the beauty of difference, the light and color and startling depth of dimension in the full range of the human spectrum.” And no, as you know, autism is definitely not all rainbows and butterflies. But neither is parenting a neurotypical child (I hear – I wouldn’t know). But when we’re in this club, we have our world wide open… when we autism-parents see rainbows, we see every single colour separated into its infinite hues, all the sparkles are distinct and dazzling, and the colours make music; we see a rainbow through new eyes.

    When others haven’t had their eyes opened (Doctors, teachers, people advising about who will go to a prom) try to forgive. Forgive them. Don’t laugh at them (or think God laughs at them). God doesn’t. The Creator would see a work in progress, and put small lessons, or big lessons, in front of them, and hope they learn. As you have helped me to learn by being two steps (okaym 20) ahead of me on this journey.

    We are all doing the best we can with what we’ve got (what ability, what experience, what wisdom, what challenges). Even the unimaginative are doing the best they can with what they’ve got. Forgive them for their imaginative-deficit disability.

    In “Hell no” you wrote ”Six years later, the good doctor would not be making the same mistake upon meeting our girl again, should she be blessed with the opportunity to do so. (She won’t.)” Hearing you sound angry about that person’s lack of vision and understanding makes me sad, because the only person who hurts when we don’t forgive, or when we hate, is ultimately ourselves. Imagine what the biggest hearted, most forgiving, generous act you could do for this doctor (and thus for yourself) and the world… You could let go and revert to love. You could teach her. You could teach her so that every child that comes after that teaching, and every parent that has to listen to her diagnoses, will not be told such out-dated, inaccurate and unimaginative words. I wish that doctor would know Brooke. I wish she could grow and learn from Brooke, as you have, as we all have from our kiddos.

    I have two brilliant, happy, sensitive, loving, cute, autistic children who will have even better lives because of you; because you have made me a better mom. I love you for that, as much as I can love an author. That’s why I put this “response” to a week of posts under the one titled “love”. I hope that by me taking the time to write this you know it comes from a place of love and peace, and for deep appreciation for you and all you do. And that you feel loved. Namaste. xo

    • This is beautiful. And I hear and appreciate every word.

      I am not Mother Teresa. I have anger and I can be petty and, as much as I try to rise above them, I’ve got the entire host of human emotions – good, bad and yup, even sometimes ugly.

      That doctor? I looked into reaching out to her when I thought I was strong enough to do it the right way. I found out she no longer saw patients. That she had found her calling in research behind the scenes. It felt right so I left it alone. And you are absolutely right – I should forgive her for a thousand reasons, if not to help enlighten her. But alas, when I happened to see her one day with her family at the zoo, I nearly hyperventilated. I literally lost my vision momentarily. I’ve never felt like that. I couldn’t breathe. I had to walk away. I was literally afraid of what I would say or do if I didn’t.

      I am evolving. I’m growing. I hold myself to the same standard as everyone else – not to be perfect or love perfectly or worship perfectly or write perfectly, but to continue to move in the direction of perfection. One imperfect step at a time.

      Thank you for your guidance. Thank you for your friendship. Thank you for sharing your heart as I share mine.

      J

      • I love your writing, and I think everyone loves that you are perfectly imperfect. I certainly wouldn’t push Mama T standards on anyone; hope it didn’t sound like that. I just find the “we’re all doing the best that we can with where we’re at” gets me through a lot (road rage, IEP meetings, community (non) service sessions… etc). Oh, and Ativan. Forgiveness, meditation and Ativan. Hugs you.

  4. Pingback: Autism FAQ: On the staring and the laughing - Laura Shumaker

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