1. Zero
    May 11, 2020 @ 8:58 am

    Beautiful! I love how you love him.


  2. Maryanne
    May 11, 2020 @ 10:22 am

    You never cease to amaze me and I am sure thousands of others walking through this journey. We are sitting with you in the dark. Thank you for being here.


  3. Scott Wilcox
    May 11, 2020 @ 11:50 am

    Thank you again Carrie. I don’t comment much, but have been following you ever since I found Jack’s “color for each day.” My girl is 35 and has a different, but in some ways, similar situation, with seizures early on, severe muscle control issues that limits mobility, and sleep problems . She has no communication except smiles, grunts and nods, and can’t use adaptive tools either. Her learning ability is very limited, but generally super happy. She enjoys pretty much anything on TV, but doesn’t respond except for smiles and laughs (loves slapstick) and helps people cry when they tear-up. Been alone with her since desertion by birthmother at age 7, but it has still been a joyful journey. Almost all of the time I’ve felt completely alone in making decisions, with no earthly help, but God’s been in it all the way. Had to move her to group home a year ago due to my health, but mostly that is working out well for us. I do miss her terribly all the time, so hang on to Jack as long as possible. Blessings to all.


  4. allisongk
    May 11, 2020 @ 1:28 pm

    I am thinking of you and your beautiful Jack. I’m sorry he isn’t sleeping. My Louis turned 14 last weekend. And we are coping with hurricane strength bouts of angry raging that seemly come out of nowhere. I wish I was home in NH, but now live far away. But I am with you in spirit. I thank you for your blog and your open sharing of your life, Jack’s life, your family, your thoughts. So tragic that anyone would say to keep anything a secret. Those days are loooooooong gone. I hope the sun keeps shining on you all. x – Allison


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