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alirae29 alirae29

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Ali Chandra  Walking the road of heterotaxy and complex CHD. Updates on our journey are on Ethan's Facebook page. 👇🏻💙

http://facebook.com/hopeforethan

This evening was one of those rare, perfect ones. A friend and her little one joined us for a spur-of-the-moment dinner picnic hike, and Zoe discovered a beautiful new spot for us to spread out our blankets and eat. The kids climbed logs and spilled food and spotted frogs, and the sky turned into a ball of fire to light our way home. The best start to my favourite season.
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#zoes_bouffant #ethans_heart #hikeitbaby30 #optoutside #hikeitbaby #raiseawildchild #getin52

Back in February, I went to my first healthcare rally. I was nervous; I'd never done any in-person activism, so a friend and former coworker came with me. I got a sign printed and we stood in the crush of people, listening to our senators speak and cheering until we were hoarse.
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Today, at the personal invitation of one of those senators, I brought my sign (a little worse for the wear after all these months) and I brought my boy and I got to be one of the speakers at another rally, telling our story like I have so many times since June.
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As I posed for a photo with Senator Menendez afterwards, I wanted to laugh out loud because how have I come so far? How is this now a normal thing for me to be doing on a Friday morning?
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This, I'm starting to realize, is what democracy looks like. Stepping out of your comfort zone and making your voice heard when it matters. Also, spoiler alert, but it turns out it pretty much always matters. So I guess I'm an activist now.
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#ethans_heart #heterotaxy #CHDawareness #ProtectOurCare #NoGrahamCassidy

We took a quick trip across the river into Brooklyn this morning to meet up with the very special woman behind @scarsarebeautifulproject. Ethan bonded with her right away; zipper club members seem to be at ease around each other from the start, somehow, and she was able to get some beautiful photos of him for a book project she's working on, celebrating the beauty of our warrior scars. We are so honored that Ethan will be included.
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#scarsarebeautiful #zipperclub #pacemaker #heterotaxy #CHDawareness

Basically all we have to show from our garden this summer. We did our best.
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#zoes_bouffant #eatlocal

FLAG ON THE PLAY. I just let @joeymonteleone turn my baby into a teenager and I don't know how to feel about it.
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#ethans_heart #candidchildhood

Speak your truth. This ain't easy.
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#ethans_heart #zoes_bouffant #zoeandboo

I love my friends. The one a few feet below me in this tree let me use her as a step stool in order to get into it in the first place because I have no upper body strength and she is a good friend. Living my best life, baby.
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#hikeitbaby30 #hikeitbaby #getin52

Hashtag spleen test. Because sometimes you just have to say yes to the giant puddle at the end of the hike, even if it means riding home sans pants.
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#ethans_heart #kaansdesigns #childhoodunplugged #hikeitbaby30 #optoutside #raiseawildchild #candidchildhood #cm_phonepics

Her reaction on the way home from school when I told her she just passed the thirty mile mark for her #hikeitbaby30 challenge. Also the celebratory donut we then detoured to purchase.
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She was gutted at the beginning of the month when I broke the news to her that Ethan and I would be hiking without her when she was at school. She was devastated to think that we'd be having fun without her, but more than that, she was so worried that she wouldn't be able to finish her challenge.
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We did the math and figured out that she'd get most of her miles just walking to and from school, and she's been asking to go on hikes around the neighborhood when she gets home, and I'm just proud of this kid of being dedicated to a challenge despite knowing that it would be harder for her than for us this month. Hike it Baby continues to teach my girl some solid life lessons, even though she's not out in the forest with us nearly as much now.
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#zoes_bouffant #optoutside #hikeitbaby

This one was also living his best life at the beach today. His number one goal is to catch a seagull and ride it like a tiny Pegasus. You're welcome for that mental image.
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Side note: this outfit from @luvmthr is amazing. I have never been able to find clothes to fit this stringbean of mine, but these seemed tailor-made. And the pants were maybe a little bit magical because he sat down in a wave and they were dry like three minutes later. Is that a thing with merino? I don't know. All I know is that I'm in love and maybe don't expect to see him in anything else once the weather gets properly cool.
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#ethans_heart #hikeitbaby30 #hikeitbaby #optoutside #raiseawildchild #wildandfreechildren #luvmother #candidchildhood #childhoodunplugged #jj_forum_2021 #sc_theme246

Can it be cold now, please? Something really cute and super comfy just arrived.

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