what i want to tell her

 


Screen shot 2014-06-09 at 5.41.02 AM

 

Image is a photo of Brooke, me and Katie on the beach in S’conset, 2008. They are 5 and 7.

So it turns out that the post that I set out to write this morning is far too big to wrangle into the 45 minutes I’d allotted to write it. I tried hard to wrestle that sucker to the ground, but it wasn’t going willingly, so it will have to wait.

In the meantime, I came across this picture this morning and it set my mind reeling. It was my first profile picture on Twitter. If I’m not mistaken, it was the summer of 2008 and the girls were 5 and 7. My time is, as it always seems to be, limited. So what follows is unedited. Godspeed.

I thought I knew so much then.

I felt like I knew nothing.

I was hopeful.

I was paralyzed with fear.

I was joyful.

I was despairing.

I prayed for the future.

I was terrified that it would come.

I wish that I could go back and tell that woman in the picture to believe ….

Not only that what she thinks might be possible is, but that what she fears impossible isn’t.

I want to tell her to have Faith. In her kids, in herself, in something far bigger than all of them.

To believe that they all have far greater imaginations than she.

That there is always so much more than she can see.

I want to tell her that six years is a long, long time.

And that it will pass in the blink of an eye.

And that it will be okay.

It really, truly will.

And that the parts that aren’t okay won’t be okay YET.

And that she will, improbably,  have grown to be pretty okay with that.

I want to tell her that Brooke made her own breakfast this weekend. That she’s had not one but TWO sleepovers with friends. Real friends. That those friends are autistic too and that it’s awesome and beautiful and not at all what she thought friendship was “supposed to” be, but so very, very much more.

I want to tell her that she’s funny and bright and yes, still challenged by a world that doesn’t always fit, but happy. That she really, truly is happy. I want to tell her that she says things like, “Totally,” and “I remember it clearly,” and asks questions. That she wants to know what words mean and that she asks, “Why?”

I want her to know that she’s taking it all in. Even when — especially when — it appears that she’s not.

 

I know she’ll find it hard to believe. But that’s why I want her to know. I want her to believe in believing. I want her to know that Faith itself is to become her religion.

I want to tell her that the road won’t be easy, but that nothing worthwhile ever is.

I want to tell her to drop her defenses. That every brand of parenting is hard. That everyone’s challenges are different but that everyone has them.

I want to tell her that Katie will continue to grow into herself. That everything that she adores about her will only get bigger – her heart, her generosity, her curiosity, her creativity. I want to tell her that someday she’ll say to her, “You know, it’s not easy having an autistic sister – not even a little, but sometimes I think that having an NT sibling might be even harder in some ways.”

I want to tell her to stop feeling guilty.

I want to tell her that she’s doing all right.

I want to tell her that she and Luau are doing all right too.

I want to tell her that the terrifying statistic that 85% of autism marriages fail is made up. Yup, complete and utter bunk.

I want to tell her not to stop taking care of herself too. I want to tell her that I mean it, cause she’s going to screw the pooch on that one.

I want to tell her that the pride and the joy on her face in that picture will still be there six years later. That it will be deeper, richer, more nuanced then.

I want to tell her that this what she will someday soon have to say about six years ..

Because no one – NO ONE – has a right to take away hope. Not from you, not from your girl, not from any one of us who happens not to fit the mold. No one can look at your sixth-grader – or any sixth-grader –and tell you that “She’s not the kind of girl who will go the prom. It’s just not possible.”

Do you hear that? It’s God laughing at those with so little imagination as to cling to nothing but their lack of faith. I’ll show you possible, He says. And every day, He does. Again and again.

When Brooke was three years old, she was diagnosed with autism. Upon delivering the diagnosis, the neuropsych who had evaluated her looked into her crystal ball and told us that our daughter would never be comfortable around people. She told us that she would tend to eschew the company of others. That she would live alone. That she would always prefer solitude.

Every day since, Brooke — not us, Brooke — has shown us not just the wild inaccuracy, but the abject absurdity of that prognosis. And time and again we have been reminded of the peril of what might have happened had we believed it.

Six years later, my daughter LOVES to be around people. It’ s not always easy, and her interaction with them sure as hell isn’t always the one that society prescribes, but she adores company. When given the choice of a private gymnastics lesson vs. a class last month, she chose the class. Her favorite day of the school week is the day on which she has chorus and can sing in a group. She invited every girl in her class – plus a few – to her birthday party. When Katie and I returned from our night away this weekend, the very first words out of her mouth were, “I missed you.”

Because she didn’t have the skills to interact the way that the doctor expected her to, it was easier for her to assume that she didn’t want to interact. Easier, but not accurate.

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.)

Now, I’m not real good at math, but I’ve added it all up and carried the one and I’m pretty sure that twelfth grade minus sixth grade equals six years. Now ain’t that something?

Six years for your daughter to show you the absurdity of trying to predict her future. Six years for her to prove to you the insanity of extinguishing hope.

Yes, I want to tell her that six years later, she believes.

That her babies are safe and healthy and happy.

And that life — messy, challenged, glorious, beautiful life — is pretty damned good.

 

27 thoughts on “what i want to tell her

  1. Lovely, Jess and true. I’ve witnessed each and every year and hopefully will be around to witness many more to come.

    Love you,
    Mom

  2. I would tell her that she will learn to use every gift she has been given and learn countless more skills she did not know she could develop to help herself and her babies live truly happy and full lives and that in turn she would show her babies how to do the same and they would succeed beyond wildest expectation and in so doing they would ALL shine a light so bright into the world that people would stop to see it and then follow it because they were illuminating a path that would lead them all to a a place of mind blowing understanding, deep compassion and the most life-affirming community most would ever experience. All because she loved her babies.

  3. Lady, you speak my heart. Different trials, but same faith, hope, love – perseverance. I find joy and laughter in your posts. This one had me crying, but oh, such blessed tears. Thank you.

    • she says it’s going to be okay. and what isn’t okay just isn’t okay yet. she says “believe.”

      i’m sure of it.

      xoxo

  4. I am so very glad you didn’t have time for your original post. This was beyond lovely. I have had the same fears for my daughter (youngest of 2 and also 11 years old). Yes, looking future forward to middle/high school is terrifying. But WOW … future-me-mom dialogue just felt like it took pounds off my shoulders and hugged my heart! But I should know better than to read your posts while at work … looking for tissues and mascara touch-up, lol.

  5. While I do think this is nice, and I think your post is a great thing for scared parents to read, I would respectfully say that if someone prefers to be alone, that’s okay. Obviously, someone can’t live their life without human interaction, but I don’t like being around people any longer than I have to, and that’s fine, as long as it’s my choice.

    • Oh, gosh, CC, I agree 100% and hope I didn’t give the impression otherwise. My point was that it wasn’t an appropriate thing to say about Brooke (and only Brooke) because she happens to pretty consistently crave the company of people (balanced with solitude, which she loves as well, but in much, much smaller doses than company). I found that nonverbally obvious then and now she expresses it verbally. But by no means do I mean to imply that there would have been anything wrong with her choosing a significantly higher percentage of (or near absolute) solitude – had it been what *she* wanted / who she was rather than simply a default response from a doctor who wasn’t taking the time to look below the surface at who she really was.

  6. As the parent of an adult who fills my heart with joy and pride, yes. A thousand times, yes. We were also given the doom and gloom scenario, and she has gone so far beyond that. To the doctor who told us that babies with smaller heads tended to be cognitively challenged: that was not the case. To the therapist who told me that the most she would be physically capable of was walking to a store and carrying a grocery bag: I wish you could see her swim the 200 fly or the 1500 free. Or dead lift her body weight. And to the fellow parent who informed me that, if I didn’t put her in a cure program, she would grow up to dance naked in biker bars (?!): she is happily employed, and does not hang out on bars, biker or otherwise. Plus, she keeps her clothes on, despite not being “cured”. 🙂

    • you should have told that parent not to worry, according to the experts, she apparently wasn’t going to be able to handle a walk to the store no less a lap dance in a biker bar.

      sorry, couldn’t help it. *raging sarcasm*

      so glad to hear about the awesomeness. 🙂

  7. Beautiful. My older kids must be about the same ages as the your two pictured in this post, because it caused me to reflect on how far we’ve come since they were those ages. Thanks for the reminder that we’ve all become so much more. Myself and the kids! In the day to day journey sometimes I forget how much trail we’ve covered. Today, I’ll be thankful and give myself the same grace that my future self will likely dish out in a few years.

  8. Thankyou thankyou thankyou!
    I have just come home from an apt at the paediatrician because Miss6 is really struggling with major anxiety issues at the moment.
    I needed these wise words of hope, and admission of weakness (& yes, I too need to look after myself better).
    Miss6 & I are almost 3 years into our journey since she was diagnosed with Aspergers/Autism & like you/Brooke some things have definitely gotten a lot better, but yes – there are still also some challenges. But the joys of having her in my life far outweigh the challenges & give me the strength to press on (as well as support of family & friends, and amazing inspirational blogs like yours).
    I read your blogs with laughter & tears, and really truly appreciate that you share your journey & experiences with the world.
    Thanks again & God Bless xx

  9. Never give up hope, my 18 year old son is still surprising me with his talent, skills, and how he keeps adapting to his world. Just remember that they will do it in their own way with your support. On second thought, maybe the world is adapting to them…

  10. Jess, may I include this as a link to your blog on a website I’m putting together? The site is intended to be a doorway for parents / grandparents to autistic voices and neurodiversity-respecting parents of autistic children.

    This post is just SO great, and so clear, hopeful and inspiring. Thank you for writing it.

  11. Beautiful . . . Simply, beautiful. My journey with autism is nearing it’s 25th year, my sons are my heroes, now they tell me I am theirs. I don’t feel much like a hero, some days I still feel like the young mom I see in those old photos scattered around my home. Sometimes though, when I look at them, I think, just maybe :o)

  12. I wan’t making my own breakfast at Brooke’s age, nor did I have two sleepovers in a short-amount of time, and yet today I’m twenty-four, a senior in college, have a good job, two blogs, run a student organization, and have some great friends. No one does have the right to take hope away and the idea that there is more in store than we can imagine speaks true to the experiences of all people. Namaste.

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