to my sister, with love

~

Ed note: My name is Jess. My sister’s name is also Jess. I know. Just go with it. 

Ed other note: We call each other Darryl. Because “This is my brother Darryl. This is my other brother Darryl.” If you’re not old enough to get the reference, look it up.

Ed last note because this is getting ridiculous: I do not mean to imply that I would not want my nephew to be autistic. That’s important. I’ve been wrestling with how best to explain that point and here’s what I’ve come up with:

When I was in high school, I had a close male friend who was black. I’m assuming he still is, but I haven’t seen him in an awfully long time. (Ba-dum-bum). Anyway, back in high school we hung out a lot and one day my dad asked me if we were dating. When I told him that we weren’t, he said, “Oh good.” I was horrified by his response, but I was also confused. My father is not that person. He never has been. So his reaction made no sense. He plucked the questions out of my head and answered them. “I’m sure he’s a wonderful young man, Jessie.” he said. “The only reason that I am relieved — truly, the ONLY reason, is that the world still isn’t completely accepting of interracial couples. Your life with him would be more difficult. That’s all.”

It’s like that. Sort of. A little. Just keep reading, okay? We can talk more later. 

*

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Brooke and her cousin Jude

Yesterday

To my sister,

I’m so sorry.

I don’t know if you knew. I hope to God you didn’t.

But in case you did, I need you to know why. I need you to know that it wasn’t what you thought.

I wanted to be there, in the moment, laughing and smiling and enjoying your boy with you. I still can’t believe he’s a whole year old. Remember when I told you how fast it would go? Believe me now?

I wanted so much to be there. Watching your beautiful little man, my delicious nephew, pick up Cheerios, eat one, then feed the next to Daddy. To see him throw one onto the floor just to watch it drop, then put the next one in his mouth, smiling like the cat who’d caught the canary. I swear I could watch him for days.

I wanted nothing more than to celebrate with you as we watched him gleefully wave back to the hostess at the restaurant. Such a glorious moment of discovery, connection, growth. And with his own little twist, of course – his entire arm, straight out in front of him, sweeping from side to side and back again.

The beauty of a new achievement — of interaction with another human being as its own reward — is a wonder to behold.

And I wanted to hug him and you and I wanted to enjoy that moment with you and for you. But the waters were rushing the dam.

And then you said, “He hasn’t done this before, you guys! So many developmental milestones this weekend!” and with no warning the dam was toast and I was underwater and there was no air and Luau was reaching for my hand because he saw and he knew and I tried, Jess, I tried so hard to stop them before they came, but the tears wouldn’t listen, and as they fell, the water roared past and try as I did to hold on for dear life to the present tense, I was already somewhere else entirely.

It was three years ago. Brooke was seven years old and it was summer. I was picking her up at camp and the counselors / therapists were waving goodbye to her from the checkout table. They were calling her name and she was staring blankly back at them as they waved at her and I was standing there in shock, realizing for the first time that my daughter didn’t wave. That she didn’t know what to do, didn’t know why they were looking at her, didn’t know what they were waiting for. How could I have not known that my child didn’t wave?

I prompted her to wave back to them. I showed her how. And they erupted in cheers and she smiled. So we worked on it. Every day for the rest of the summer, we worked on teaching our seven-year old to wave.

And it’s okay. It’s all okay. I know that. I believe that. Down to my very marrow I know that it makes not a whit of difference when she learned to wave or if she ever did or never did but the dam broke anyway and the tears didn’t listen and they just kept falling and Luau was squeezing my hand and I was so incredibly grateful that he got it and that I wasn’t as alone as I felt in that moment. That he was there with a lifeline, that no matter how high the water got, he wouldn’t let me drown.

His hand said, “I get it. It’s okay. It’s all okay.”

I’m so happy for you, Jess. And for your beautiful, delicious, side-to-side waving boy. I pray for an easy road for him. And for you. One with just enough struggle to sweeten triumph, but no more.

I’m sorry for the tears. I’m sorry for all of it. I needed you to know that it wasn’t what it seemed. I needed you to know that I would never begrudge you ease and joy. That they are my most fervent hopes for you. But really? I’m telling you all of this because, above all else, I need you to know THIS …

Don’t ever stop sharing his milestones with me, okay? Promise me that. They are glorious. And I want nothing more than to be in the moment and celebrate them with you.

Little by little, I’ll shore up the dam.

I love you, my sister. And I’m so, so happy for you.

Love,

Darryl

20 thoughts on “to my sister, with love

  1. I don’t think anyone 1 of us in the ASD community doesn’t get the reason why you had tears, or the wanting to share in the joy of each milestone with your sister. Just recently I saw a little boy, no older than 2 in a stroller eating candy and sipping on something I would never allow my 14 y/o drink and he was chatting up a storm, and pointing away. I’d be lying if I didn’t have a few thoughts about that, wondering how and why he can eat/drink those foods and seem just fine, but Aidan would be off the wall and well, just NOT be okay.
    The sadness comes and then is replaced once Brooke/Aidan does something remarkable, and thankfully, something remarkable happens everyday!!

  2. I get it, I totally do. With my little Ainsley (who is now 20 months old) every milestone brought a joy beyond what I can express, and relief. Waving, pointing, connection, play, words. They are al there. And I’m experiencing it all for the first time. And I’m so thankful to have BOTH experiences.
    Anyway, I’m pretty sure everyone here knows what you’re saying.
    And Ainsley, well, she will have her own brand of ‘hard’. She’s too little now to know, yet it breaks my heart when she waves at her sister, and says “Hi, Cymbie, hiiiii!!” And gets no response. Cymbie waves, when heavily prompted…when she feels like it.

  3. I completely understand. My nephew, who just turned a year old, as well, is hitting all his milestones…and with each picture and video I am sent, I am happy and proud, but oh so wistful. Hugs, Momma.

  4. Brings me right back to a conversation I had with a dear friend a few years back when Joey was three and still had no words….. She was going on about how her daughter, the same age, was singing the alphabet…. She had thought we had lost the phone connection, but what had happened was I was crying so hard I couldn’t reply…the air was gone…. It wasnt that i didnt want to hear it, I was thrilled for her, I wanted her to know that I wasn’t jealous or wishing she should struggle, it just made my reality that much more “real”…. But, she is my friend, and she got it, Jess is your sister…..I KNOW she gets it, so please don’t beat yourself up for being human….every once in a while its good to take the cape off!! We love you anyway!!

  5. Jess, this brought me right back to nine years ago when most of my school friends had babies within months of Justin, and we all used to get together for playdates. By his first birthday it was both a joy to see how my friends’ children were developing, and simultaneously painful to see where my son was in the development scale, and how unhappy he was most of the time. I’m so past all of that now (well, most of the time), but on occasion there’s still a catch in my throat when I talk to my friends about their kids. So “got” this post!

  6. I feel you. It jumps up and recedes. Jumps up and recedes again. (So glad you can tell your sis and she understands.) xo

  7. I’m not as eloquent as my sister, but here’s what I got… Of course I know that you are happy for my little man’s milestones. I know that you want to celebrate them with me, just as much as I want to celebrate every milestone for both of my amazing nieces. There will be many more to come on both sides and I want us to share all of them!

    Love you more 😉

    xoxo
    Lil’ Jess

  8. Well…now I can’t stop crying. (Which is not that unusual after reading one of your posts.) Everything you shared…yes!

    That lump in my throat never really went away, but it softened a little over time. Now that we are raising our second child with ASD, I am finding it easier to damn up the flood gates and marvel in his joy (which he wears like a second skin) and in the qualities he possesses that are so genuinely unique. I know from the love that pours through your words that you are very capable of that too.

    Motherhood is an art form and that you are way on your way toward mastering it. Those little brush strokes require the most patience, but when you step back from the canvas, all of that attention to detail will reveal itself! xo

  9. I get it too! I was helping make dinner and was watching my sister in law and my niece (age 5) work together to make mashed potatoes. All I could think was that I’m never going to get to do that with my son. (He has major food aversion and can barely sit next to an adult that is eating) I love to cook and the thought that we aren’t able to share that made the water works start and soon I was standing over the stove with tears streaming down my face-hoping not to ruin their moment. My husband came over, saw me and just knew! He gave me a hug. You never know what will bring that massive wave down over you, you have to just ride it out.

  10. Yes, to all of this. Yes. There are lots of us out here who know exactly what you were feeling at that moment. Thank you for sharing it in your own beautiful words.

  11. Reading this was deja vu for me – the same thing happened three years ago when my sister’s son was about a year old. I cried, she hugged me, and she totally got it. Sisters rule!

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