ジェーン・パークさんのインスタグラム写真 - (ジェーン・パークInstagram)「There are certain aspects of disability that I will never understand. The first one being that I will never know what it's like to live with a disability. As Grace grows, starts to attend school and maybe becomes more aware, I fear she will believe that she is less than because of her physical and mental disability. I wish strangers both young and old could automatically see the wonderful little girl she is and not immediately judge her for the wheelchair she's in, or the feeding pump that hangs on her chair. I won't ever understand how US Healthcare is so backwards. The disabled and medically fragile community struggles year in and year out with getting the proper care and equipment they need. Those that cannot advocate for themselves rely on caregivers to do so. It's scary to think what will happen to Grace once we are gone if we get the honor of caring for her beyond the time of what doctors predict. I've often had thoughts of "I cant die first".. which only leaves the flip side of the coin. I hate thinking of either circumstance. At the beginning of Graces crisis, my inbox was flooded with support from other parents with a disabled kiddo. I kept hearing that one day I will appreciate the smallest things more than any "normal" parent ever could. Honestly, I HATED hearing that. It sounded like "you'll learn to love the pile of shit you've been dealt with." We do deal with a LOT of poop on the daily though • • But.. I wish I could go back and tell that emotional wreck on 10th floor of the PICU that she will feel happiness again. I would tell her she'll learn that grief can exist alongside joy. I'd want her to not be ashamed of being sad because it means you care enough about something to let it under your skin. As for the appreciation of the small things? Those parents were right. Whether its admiring the loopy rosettes of milk in a latte, marveling in the sky catching fire at sunset or an extra few seconds of eye contact with Grace that leads to us both cracking a smile •• There are so many delectable subtleties of the human experience if you get a chance to step away from the keyhole and open the whole door. But only when YOU are ready to do so. 🫂」4月14日 12時36分