untitled

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I’m stuck.

For the life of me, I don’t know what to do.

I was so excited to post something this morning. Something that, until last night, was nothing but a testament to progress and hope and all that my girl is doing, can do, will do.

It was a video from the Bat Mitzvah we attended this weekend.

It was my baby girl dancing along with a crowd of kids. It was the one that made me type this in a moment of unbridled pride and joy on Saturday night.

Oh my god, y’all. The bat mitzvah girl is teaching all the kids a dance while the adults are in cocktail hour. It’s going to be a surprise for the adults once the party starts, flash mob style. Brooke is RIGHT IN THERE dancing. She may be a few beats behind, but she is in all her glory being part of the group. This is such a huge gift. I am so overwhelmed with joy for my girl. She’s DOING IT. Like really really DOING IT.

But then last night, Luau and I watched another part of the video. The one where the kids actually performed their dance for the crowd. The one that somehow looked different than the first. Very, very different.

The one that hurt like hell to watch.

The one that forced us to see – to really see – the sword’s other edge. The one that sucked the air out of the room – that left us no longer reveling in the joy of her participation, but simmering in the painful awareness of just how much that participation cost – and costs her every day. The one that showed her differences in such stark relief as to leave us with no choice but to see – to really see – just how hard this road is for her.

The one that broke us.

After watching the second video last night, I went into Brooke’s room as she slept. I curled my body around hers, just as we had done in the hotel room over the weekend. I just needed to be close to her. I needed in some way to prove to myself that I could do something. That I could protect her. I can’t, of course. And isn’t that what always hurts the most?

There’s a lot to tell you about the Bat Mitzvah. About Brooke’s part in it …

We are in North Carolina this weekend for my little cousin’s Bat Mitzvah. After reading her Torah portion today, the Bat Mitzvah girl stood before the congregation and thanked Brooke. Because of her and her autism, she said, she had chosen to help teach a drama class for kids with special needs as her mitzvah project. All kids, she said she’d learned, deserved the chance to do something they love. #Hope

About the family’s incredible efforts from the first moment to the last to make us feel welcome and our girl included.

About my delicious cousins, who indulged Brooke’s insatiable desire to dance, and who joined her on the floor (literally) without a hint of self-consciousness or judgement.

About the teenage girls who miraculously agreed to play follow the leader – who didn’t flinch when Brooke led them in Ring Around the Rosy …

Or when she asked them to do this …

Or even this. I mean, seriously …

About my Katie. My God, my Katie. About whose grace and poise and emergent maturity I could write for days …

But today, I’m going to keep it to myself.

To process it.

To protect it.

As I would my girl.

If somehow I could.

27 thoughts on “untitled

  1. I loved the joyful moments of this! And I share with you the [I won’t guess here at what feeling to say because it sounds pretty complex] feelings/reactions that led you to put the brakes on an exuberant “Woo it was perfect” post. It is your willingness to share both sides of the coin with us that makes you uniquely you. We heart you, your family, and the bat mitzvah girl.

  2. Yesterday I flew with Molly for the day to Boston to go to a wedding shower. She was amazing all day until we checked in to go home and our flight was delayed. Somehow, seeing the words flight delayed made her fall to the floor in despair. This one little transition changed the day. I will forever be indebted to an angel at Jet Blue named Joan who immediately went to work to help us and got us seated together on an earlier flight. Our kids are fragile. They continue to make progress and take in the joys of life that the rest of the world takes for granted. We just have to keep working harder and harder to not only keep them safe but to teach them how to accept what life throws at you. Keep strong Jess. We also get knocked down when we see how deeply our children’s special needs affect their daily lives. I think that’s why I personally get so overwhelmed by the kindness of strangers.

  3. My heart aches for you. We know that double-edged sword and the pain it can inflict when the balance suddenly shifts. But, here’s the thing, my friend… the progress you saw before the video which sucked the air from the room? Is.Real. Very real.

    Even long-distance runners stumble and fall apart when they’ve passed their limits. They rest, re-group, maybe go inward a bit, then blaze forth again. So will your amazing Brooke. In this I have absolute faith.

  4. I find myself with similar conundrums quiet often. It is so damn hard. The good is kind of like the filling of a water balloon and the other side is like getting hit with said water balloon only to find someone replaced the water with unset jello. yeah… ughh
    I try so hard to just remind myself all progress is good progress and the good often outweighs the bad

  5. Yes, I understand too. Just when you think you are getting somewhere, there can be a slap in the face…but you ARE getting somewhere.

  6. It makes me so incredibly sad that after all of the wonderful, amazing, HUGE things that happened this weekend, you are feeling bad. You can’t do this to yourself or to her. You HAVE to celebrate the good. You just have to.

  7. Sharing these days and moments sometimes gets me through my own..some days a real life-line. “The one that hurt like hell to watch…” that’s what we do, every day like breathing. Its part of the love and the struggle, we do it for our babies so that we know the all of it

  8. Here’s to you and Luau for knowing that it is time to step back and think the reality through. We all have to do that. Here’s to Brooke and all her fearlessness. Here’s to Katie, who deals with more than many other siblings will ever have to dream of dealing with, and does it with such love and grace. Here’s to all those teens that saw how fabulous and worthwhile your girl is and helped her to know that, even if it was just for a little while. Here’s to all the progress that has happened and will continue to happen because of all the support that you, your family, and your friends give to your girls. Hugs to you all from us who live similar lives everyday.

  9. Right with you.

    This has been a week of end of year transitions and performances and celebrations…and my boys–the typical (? really?) and the not so typical have been doing great. At their own pace, in their own way. Looking at *just them* it is all wonderful, and amazing, and I can’t believe the progress.

    I often can’t let myself look around at the other kids, because the contrast is painful. A few times, though, feeling particularly strong, I’ve allowed myself to look more closely at those other kids– and I saw kids with all kinds of struggles, although very different from the ones that bedevil my boys. And I realize, too, that the contrasts I see now are coming at moments that are just reflexively hard to revisit–early adolescence, which is such hard work no matter what.

    Those pictures are incredible– Brooke’s posture in the dancing pictures is gorgeous (esp. love the starfish pattern she’s making with the other girls, and the tilt of her wrist!), and Katie is too beautiful for words.

    Karin

  10. I know this high/low too. It is not illusion and reality. It is both reality. For me, where I constantly go is too high. Then, when the low comes, it hurts doubly hard. I just haven’t figured out how to balance it. And understand that it seems to always be 5 steps forward and 4 steps back. Progress is still always progress when you look at the overall picture. 🙂

  11. It can totally turn on a dime, can’t it? Your girls are so gorgeous. I think it is wonderful that Brooke and her family have had such a mutual effect on each other AND the people in their lives.

  12. It’s always the up and the down isn’t it? Look how far they’ve come! But the road ahead – OUCH! You have an amazing family. So happy for you for the wonderfulness of the weekend. And for the other stuff – hugs.

  13. I feel your pain. The differences are painfully obvious to me every time I take her out some where.
    But there is joy. Joy in knowing your family accepts and loves her for who she is. Joy in knowing they will play with her, socialize with her, and never judge her. I’m sorry you hurt so much. I feel in my heart though, she’s going to be fine. With the love and support of all the people around her, she will never have to face her challenges alone. That is a blessing.
    I know it doesn’t take away the hurt though.
    And Katie is beautiful….just stunning. She looks wayyyy older than she is. And I know her soul is too. Sending hugs

  14. Oh, those brakes. I know them well. Glad you were able to enjoy her successes, even when her struggles pulled you down from the “it’s perfect” high. As parents, this reality is something we face…even with our “typical” children. And it stinks.

    Know you’re not alone.

  15. I have no idea what the other part of the video showed but what you have described here shows how far your precious child has come and how far a segment of your world has come to stand beside her. Seeing those young “women” on the floor with Brooke made my heart sing!

    From your posts, I know that Brooke often pays later on when she has successes. I know that you are pained beyond words. Does the latter completely cancel the former? I am not in the same situation as you are so I can’t know. What I DO know is that I will celebrate all the successes and pray through and share the consequences with you.

  16. ((HUGS))…and thank you for sharing such an intensely personal time. The double edged swords are the worst…just when you think life just can’t get any better, you are brought painfully back to reality. While the second part of the video was hard to watch, just remember that in the not too distant past the first part of the video was an impossible dream. You girl has come far, and with you as her mom she is destined to go even farther.

  17. I’m reminded by one of the people who helped us as parents who kept saying things like “time is on your side” and “your children are a work in progress.” A decade later, i can say that this is completely true, not just for us but for every family in which the parents have listened and learned and grown. I think that category pretty clearly includes your family! : )

  18. I’m not really sure how to go about offering my suport here, but like so many of the others who commented, I want to tell you that you are not alone. So many nights, like you, I have sat and watched my daughter sleep… Remembering the wonders of the day and trying not to sob over the things that were missing. But we have to have hope, right? There is always hope. My Little Miss may never be on the soccer team, or play a solo on my heirloom clarinet, but she will be the best Little Miss she can be. I will not settle for less. And I know you feel the same for your Brooke.

  19. I am not sure what is going on here but I am in the middle of reading the most amazing book, “The woman who changed her brain” by Barbara Arrowsmith-Young. Please forgive me if this seems presumptuous.

  20. Hugs from here too. I get it. It hurts like hell, and I feel like everytime I’m elated about something he has done, something absolutely magical that I’ve seen, it is immediately followed by a crushing blow. It is so hard. I’m trying really hard to focus on the magic, but still get knocked to my knees far too often. Thanks for talking about it so honestly.

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