gwennieh gwennieh

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Gwen Hartley  Damn near Snow f*cking White 🦄 Mother of unicorns 🌾 Wichita State University alumni

4.18.18 ~ ✔️ Another bucket list item ✔️ (Video to come of us swimming with them when we can get the videos off of our GoPro!) These nurse sharks are extremely tame, as they have people swimming with them all the time, they are fed regularly, and they even have names! The babies were my favorite. 😍 Their little bellies are SO soft!!!!! I petted one’s head for so long, she blinked her eyes and fell asleep for a minute! ❤️🦈❤️#motherofunicornsANDsharks 😆

Throwback to 9.26.07 😍 Cal was always so attentive with his sisters, constantly checking in on them, talking to/for them, & giving them lots of hugs. The girls have always responded so well to him, and still to this day, are most comfy when in his arms. Not sure how I got so damn lucky being given these 3 kids of mine. ❤️❤️❤️👨‍👧‍👧

4.15.18 ~ My favorite tax day ever. ❤️ #loveofmylife

4.14.18 ~ Actual footage of me right after getting bit by a swimming pig after being told not to feed them by hand and choosing to do it anyway because “it won’t happen to me” and also because I have waited a lifetime to ✅ this off my bucket list and I still swear it was 1,000,000% worth it to then bleed all over the beach because I 👏🏼 love 👏🏼 piggies 👏🏼 so 👏🏼 freakin’ 👏🏼 much!!!! All the heart eyes in the whole world right freakin’ here. #isthisheavenbecauseiamprettyfuckinsureitis ❤️🐖 🐷 🐽 😍

4.1.18 ~ “Nobody is born with love in their bones but looking at you and at what you made me I could ardently argue otherwise.” ~Karuna Ezara Parikh 💗 #mywholeheart

“what if your pain creates a story that answers a prayer from a world that wants to heal” ~Tanya Markul
This photo was taken on 2.9.18. I planned to post it back then but I didn’t for a few reasons: 1. Lately I have felt more protective of my family & our space and have felt like sharing less. 2. I have barely had any time TO post! 3. When I took this pic, I saw my girl’s intense beauty, her strength & the fire in her eyes. I also saw the little blemishes on her face and knew that others would notice them too and want to know more. 4. I didn’t want to have to explain to everyone outside our inner circle that Lola’s rash is *still there* after 9 long months or that the ONLY ointment that helps even remotely that we smear on her little body head-to-toe several times a day to give her as much relief as possible also causes her non-rash-affected skin areas to break out, which just doesn’t even seem fair with everything else she has going on. 😔 I sometimes wish that outsiders could step into our shoes for just 5 minutes and feel the immense weight of this issue (among others) on their shoulders and the powerlessness and the fear and the uncertainty, because some days, it’s just so damn heavy. Please know that we’re still not seeking advice on new medicines/salves/ointments/doctors/witchcraft as we are 1,000,000% on top of it and while we appreciate the tips, we are too fucking overwhelmed and tapped out to even consider or tackle one more thing. Please know that we are hanging in there & living life & loving so damn big still. Lola has good days where the rash looks better and horrible days when we seem to take many steps backwards. We are going to figure this out, that I DO know. Thank you all so very much for loving our girl. 💗

2.27.18 ~ Claire kicked ass & took names during PT on Tuesday! @klyon3 — our incredible physical therapist — helped our girl place her feet in the right positions and then stabilized them so she could push herself forward. It is so exciting to see Claire so happy to be upright! It is touching for us to see her in this light, too — so long & lean — such a little teenager. I would be lying if I didn’t say that sometimes I wish I could see her this way more... upright vs. laying down. We will keep working and working until it becomes more comfortable for her. She has come so far. I forget that sometimes. These reminders give me all the feels. So needed. So valued. So perfect. Just like our girl. 💝

Right before I took this pic, I asked Claire if she was excited for her vision therapist to come back after having been very ill and gone for the past month while she recovered. I said, “Claire, Joli is coming back tomorrow! Are you SO happy?!” She immediately flashed this darling smile, and I was lucky enough to capture it so I could send it to Joli, too. I am so grateful for the gift of this day, for our skilled/caring/loving/diligent therapists/extended family members (!), and for the many smiles that my girl now gives me. There was a day I wished for THIS... I am not exaggerating when I say we waited *years* for one single tiny grin from Claire. It was SO worth the wait. 😃

2.28.18 ~ We #CareAboutRare! Claire & Lola were diagnosed with Asparagine Synthetase Deficiency in 2016 and are 2 of only 19 people worldwide diagnosed with this rare disease. To my knowledge, Claire is the oldest living individual currently with this condition. They continue to chart their own courses in life, despite the odds against them. We are grateful to have met several other families online whose children have defects of the ASNS gene as well. They are our lifeline! 💙 #WRDD2018 #ShowYourRare #RareDiseaseDay

2.17.18 ~ The #WestsideDwarves watching their big brother, @calhartley11 play ball! Go Larks! 🏀🐤❤️

2.9.18 ~ I can’t eeeeven with these two, you guys. My heart just exploded. 💗 #nighttoshine

2.9.18 ~ ✨ #nighttoshine

2.9.18 ~ Claire primping for her big night! Can’t wait to post Prom pics and video later tonight! #nighttoshine 👸🏼💅🏼

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