
Today, my daughter Jordyn received a video of her class waving and saying âhi, Jordyn.â Sheâs the only one who is homebound out of her class. Tears welled up in my eyes for so many reasons. For one, it was so kind of her teacher to think of her and include her in their class even though she isnât present. It also got me upset that she was missing out on all the fun. Am I doing the right thing keeping her home? What if sheâd go and contract COVID or something else? The outcome would not be good given her other serious health issues.
Iâm back at work and trying to have as normal of a day as I can, but the worry is always there. Iâm extra careful of course, but thereâs always a chance I could take something home. The most upsetting thing, though, is the change Iâm seeing in Jordyn. Before COVID hit, she was doing well in school. She was happy and I could see a spark in her eyes. Though she couldnât communicate the best, she fought hard to make her presence known and to be with her peers. She loves school and all her friends.
Today, for the first time since her diagnosis, I felt fear for the future. Iâve always been a âglass half fullâ kind of girl, but watching the light in my daughterâs eyes grow dim slowly over the last few months is almost more than I can bear. Sheâs exhausted all the time and has no energy to play. She has no desire to do things she once did. She struggles just to sit up and keep her head up and even her voice has gotten softer and often hard to hear.
I know sheâs a fighter and only God knows her path, but my momma heart is breaking watching her struggle so much. I just want to take all the pain away and bear it myself. I want her to feel joy and laughter and to be able to see the world around her again. I want things to come easy for her just once! I want that spark to return.
Tomorrow is never promised. Iâm snuggling a little longer, hugging a little more, giving all the kisses, and holding on tight to today. â¤ï¸
source https://www.programage.com/news/Supporting_My_Daughter_With_a_Rare_Disease_Who_Can_t_Go_Back_to_School_During_the_Pandemic_1599116413050777.html
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