Tuesday, May 12, 2015

What is Lily Feeling?

It was a busy week this week preparing for Mother's Day (and Leslie's birthday the following day).  And yeah, obviously it's weird, because Leslie is gone, but Mother's Day still goes on without her because we celebrate MY mother's mother's day and Leslie's mother's mothers day and my sister's mother's day.  So...

We were always blessed, Leslie and I, with a very supportive family that more or less got along.  That allowed us to do things like... go to one house at Thanksgiving (and other holidays) instead of two.  Mother's Days we try to have at my mom's house.  This year everyone graciously let us host it.  I think in my mind it was just going to be MORE sad being away from Leslie's home celebrating all the living mothers.  I felt like catering to my kids and everyone else was kind enough to let me. 

Lily and Emma both did great.  ARE doing great.  There were some sad moments, but like I've said, the sad moments make us at least feel like we're doing it "right".  It's weird.

We bought flowers and plants and planted them because that's what Leslie enjoyed doing on Mother's Day.  And Leslie's little sister came out from Chicago and made red velvet cupcakes with Emma from Leslie's tried-and-true, ingredient-stained, wrinkled, pencil-marked recipe.  That's what Leslie would have made, I have no doubt.  And they were exactly perfect.  And Lauren made "Leslie's" sangria...which was also what Leslie would have done, but I say "Leslie's" in quotes because when she was first learning to make it, it was Lauren she got the recipe from.  So obviously that turned out exactly the way Leslie's would have...since it was Lauren's in the first place. 

It, honestly, was a pretty normal Mother's Day...but my kids' mom wasn't there. So obviously there were some sad moments.

On Lily...

I was at Lily's IEP meeting on Friday.  They go pretty smoothly now.  I don't feel like anyone is trying to pull a fast one.  Everyone seems to genuinely care about Lily and want the best for her, so more or less we just go over the goals and tweak things and then it turns into a bullshit session.  Leslie used to brag about the IEP's where she went an entire meeting without bursting into tears.  I think I might have cried at this one. 

A couple sidebar things...I haven't written about it yet because I'm struggling with it myself, but Lily hasn't mentioned her mother unprompted at home since she passed.  Not once.  She hasn't asked where she is, she hasn't said anything.  And so I don't know if this is her grieving...or because of the amount of time Leslie was apart from the family, isolated in the upstairs bedroom by the obstacle of the stairs, she just is used to not seeing mommy anymore. 

When we went to Lily's semi-annual re-eval (a couple weeks ago) the psychologist asked me about Lily's grieving and I confessed that I couldn't tell if she even noticed.  He's doing a Functional Behavioral Assessment and comparing it to the last one done to see if there's a change that might be attributable to the loss so we can decide how/if to address it.  I mean, on the one hand it's so sad that she might not even really be aware...and on the other hand...man wouldn't it be nice to not be so sad about it.  And I'm damn well not going to counsel her INTO feeling extreme sorrow.

Last night I was looking at some beautiful pictures of Leslie that friends had posted on facebook and there was one of Leslie, her hair was long and wavy.  It got that way if she didn't straighten it, but she usually did because she knew it was my favorite.  She must have been pissed at me that day.  Anyway, you looked gorgeous.  I scrolled to the picture of Leslie on my phone and held it up to Lily and asked her who it was and she said "Lauren" (Leslie's younger sister) and I was just so sad.  I'm trying not to read too much into it.  And honestly, Lauren visited for the weekend, Lily wasn't even alive when the picture was taken, so Leslie looks much younger...I don't know...maybe it DOES look more like Lauren does now than the mother she grew up knowing.

This is the picture.  Lauren and Leslie do look a lot alike.  But it was still
kind of heartbreaking given the circumstances.  (I don't really have permission
to post this, but I'm facebook friends with all these guys, so I'm sure they'll tell me
if they're pissed I posted it.)
Meanwhile, at school, Lily WAS mentioning her mother.  A week before the IEP, one of Lily's teachers reached out to me.  She wanted to give me a heads-up about something that Lily had said at school.  She had read the blog post about Lily saying her final goodbye to her mother (last week's "One to make you cry") and wanted to share that after class one day Lily was walking out the door and said, "She didn't say anything."

The instructor had asked, "Lily, who didn't say anything?"

"Mommy didn't say anything."

"Lily, what did you want mommy to say?"

"Mommy didn't say goodbye."

And she said that she and the aides struggled to find the right words to say to Lily and felt bad that they hadn't been able to help more.  (They talked to her, they offered their own goodbyes to Lily.  They offered their own good byes to Leslie, etc) .  And reading the email through tears, had I been there at the time in the heat of the moment I doubt I could've offered them anything better. 

But I thought about it.  And that night after our nightly ritual, after closing the book and replacing it on the shelf, after turning on her fan and her night light and turning off the big overhead light and closing the door, tucker her in, and lying close to her in the dark, we said prayers together.  Prayers are almost always prompted, and that night was no different. 



"Good, Lily.  Bless...."










After her prayers I told her that we ("we" love her, versus "I" love her) loved her and that we were proud of her and that we believed in her just as I always have, and then I tried to talk to her about mommy.  And I don't know what she knows or doesn't know or feels or doesn't feel, but I asked her about mommy saying goodbye.  And I asked her if it made her sad.  And she didn't really respond appropriately, meaning, I asked about mommy not saying goodbye and she didn't really reply at all.   And after giving her a little extra time to process, and trying to ask again, I just assumed it DID make her sad and told her this:

"Lily, when mommy was sick, she needed to go someplace to make her feel better.  And the only place she could go to feel better was heaven.  And heaven is great because mommy will never be sick ever again.  She'll always feel really good and happy.  But when you live in heaven you have to stay there, so people you love can't see you.  But you leave your love behind in the hearts of the people who love YOU.  So mommy is always with you, baby.  Mommy's love will never leave you, and that's why she didn't say goodbye.  She's still here.  In your heart."

I put quotes on this like I have a fucking photographic memory of what I said, which I don't...but that was the gist of it.  The people we love who go to heaven don't have to say goodbye because their love never leaves, it stays in our hearts.  And then I reiterated what I told her on "the day we told our kids their mother was dying" which is a blog post for a day when I have more time and fewer people to see me break down into tears...the idea that she could always see mommy, could always talk to mommy, that all she had to do was close her eyes and think of how much she loved her, and she'd see a picture in her mind and could talk to her.  And I stroked her hair and she fell asleep.

This is such a stab in the dark for me because really it's so hard to tell how much of what I'm saying she gets and doesn't get, so I presume competence and try to make the message half as wordy as I might make the same message to Emma, and hope I'm helping.

Back at the IEP meeting, we were wrapping up our bullshit session and Lily's teacher asked me what it was that I'd told Lily about where Leslie was, and she asked me and I sort of nodded my head and she told me this:

"We asked Lily where mommy was, and she said, 'she's in my heart.'"

I nodded my head and gritted my teeth.  My turn to cry at IEP's, Les.


  1. Oh man that is quite a zinger at the end. I thought I was going to make it all the way through this one, but nope, that last part just obliterated me right in the feels.

    But as sad as that is, it makes me happy for you guys, too. Because she knows. Of course she knows.

  2. She knows and is processing it. Too Big Emotions are difficult to process. Routines help and are paramount to give structure to an otherwise chaotic brain. In the years following his death, I grieved. Mostly in private. Too Big Emotions are overwhelming, and, yeah, there were one or two outbursts and crying sessions, but it wasn't right away. It takes time to process Too Big Emotions, to get used to the new. With death, there's nothing you can do about it. You can't bring them back, and that's hard.

    When my own dad passed, it was difficult because I didn't talk to him the last time he called. We never said good bye, we said "I'll see you later." He was in and out of my life, and knowing he was dead gave me a weird sense of peace. I knew he was no longer hurting and I knew where he was.

    You're doing right. Go with your instinct and keep doing what you're doing. Keep talking. Heaven might be too abstract of a concept, but her heart is more tangible. I know my dad and his memories are in my heart. I know he loved me and that I was the apple of his eye. He was the only person that I could not beat at Scrabble and I keep his poetry book and pocket watch on a shelf. He's with me, even if he's not.

    1. I wanted to add: She might also not know how to feel, which emotion is appropriate. She's also young and may not know how to grieve. It's one of the toughest challenges when you're autistic and, making it even more of challenge, we each grieve in our own way. She may not look like she is grieving, but she is, in her own way. You might want to describe grief to her, very specifically, to the degree she can process it. Little bit by little bit.

    2. http://www.pathfindersforautism.org/articles/view/parent-tips-death-and-grieving



  3. My daughter (ASD/Aspergers) lost her dad suddenly, unexpectedly and mere days after her 10th birthday. I noted she didn't say much about her dad. When gently prompted, she'd tell me she didn't want to talk about daddy right now. Her grief counsellor told me kids have a wonderful inbuilt filter which permits them to absorb bad/sad information at exactly the level they're able to cope with it. And then it's time to do something else (play mainly). I've held her while she sobbed her heart out, then as swiftly as if flipping a switch, would I play faeries or Barbies with her. Miss E's daddy is in her heart and he's also in the moon. She knows he watches over her, she says goodnight every night, and they chat often these days. She was ready to talk and process when she was ready, and not a moment before, but she was absolutely taking it all in. One thing you might want to brace yourself for but which made total sense to Miss E was that we should `find a new daddy soon.' It's not that she's heartless (far from it), nor even that her daddy can ever be replaced (he's irreplaceable), but more that what she sees as "usual/day to day" includes a family unit, and on the whole she'd prefer that. We're now almost 3yrs down the road. It's seldom easy, but almost always interesting.

  4. I've been following your blog for years- a silent spectator. I never comment. I almost feel like an intruder commenting now. But this post got me, right in the feelings. I cried, I laughed literally out loud (about the quote part), I cried real ugly tears. You are doing it all so right. So well. I can only imagine the pride Leslie feels watching you take hold of such a shitty situation and just doing it so well. You're girls are gonna be alright.

    You, Emma and Lily are all in my thoughts and prayers - for whatever that is worth.

    1. *your (I hate when I later notice a typo and can't fix it! Doh!)