readers rock my world

If Calvin could somehow choose anyone in the world to be his mom, there is no one else on the face of this entire blue marble that would be a better nurse, a more conscientious caregiver, a more fierce and committed advocate, or simply a more profoundly loving and patient mom than the one he has tonight. And I honestly think he knows that. You should probably also know that doing what you do also helps some of the rest of us find something a little better inside ourselves. So thanks.


My husband and I just spent the morning at my daughter's neurologist's office trying to find out why there seems to be only three states of being for my girl: having seizures, bat-shit crazy because of the meds, or a zombie because of the meds. I hate them all. I miss my pre-epilepsy daughter. And I'm sick of it. I wish you and I had other options.


Wish I were there to bring up inappropriate topics at the dinner table and make you laugh ... for just a minute or two. Thinking of you here in SF.


Listening and holding you close at heart ... your honesty, raw emotion and COURAGE blow me away. Wishing you moments of peace and grace.


Oh, dear. Time to stop lurking and 'fess up—I am listening too, from Zurich. I am the mom of three n/t (neurotypical) kids and here I am, fascinated, terrified, moved, by what you write. My kids see me reading and I explain to them why and what I am reading ... so we are all listening.


Even though you may feel alone, you are not. I get it. I understand your words. I am here for you any time, any day.

I'm listening from far away and feeling. ciao

love you dearly. I am grateful for the richness and depth you have given me.


I had a friend who [had uncontrolled epilepsy] so I have great empathy. She "looked" normal, so she had to deal not only with the idea she was "disabled" and gave up a lot of her dreams (she'd been accepted to John Hopkins to study nursing, her lifelong dream, couldn't drive because of the nature of her disease's presentation, she couldn't hold a job) but also had to deal with people who questioned her disability (until they saw her seize.) Education helps everyone and you are one of the educators.


I awoke at 2 am in a terrible nightmare so I went upstairs to snuggle in Cole's bed. I still could not fall asleep so I pulled out my phone and read some of your older posts. Well, I was finally able to fall asleep and I had the sweetest dream about Calvin, in my dream he was happy and snugly and was trying to tell us that he was happy. It was so dear and I didn't want to wake up so I continued hitting the snooze button on my phone. I told the boys about my dream because they ask me regularly how Conor's friend Calvin is doing. it is very sweet. We lift you all up in prayer every single day, Cole loves to pray specifically for Calvin when he goes to bed. He couples Calvin and Conor in the same prayer, that they would both be able to walk and one day talk and just be happy with no struggles.


Thank you to all of my readers. You give me strength and help to make my world go round.

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