Talking about an Early Exit

16 thoughts on “Talking about an Early Exit”

  1. Thanks again for sharing this walk. I have spent some time wondering on the development of character, which comes into play in your last thoughts. I have some opinions on that and would enjoy being a part of that discussion. Thanks again and keep leading us on the journey.

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  2. I know laughter is probably not the reaction you were going for when you wrote this, but I SO clearly remember going to each and every doctor’s appointment after our diagnosis thinking THIS will be the one where we get some answers. Where I would demand answers, and would receive only the vaguest of answers. First with the neurologist, then the metabolic geneticist, and then with a different geneticist. It took me a bit longer to learn that there weren’t answers to be had. That the appointments served to help the doctor’s baseline Cyrus’s development so they could later make note of progress, more than there were there to help me make sense of anything.

    Then I went back and read my own post about my reaction to these events, and found that it is amazingly similar to yours in a few key ways. Here’s the link if you’re interested: https://alightofmylife.blogspot.com/2017/02/celebrating-this-moment.html

    I’m truly loving your blog. I know I have more reason to connect to your experience than many, but you have an incredibly powerful and relatable voice. Thank you for sharing it with the world!

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    1. Kari, thank you for sharing your blog with me. It’s so helpful to read things like that as we continue to make sense of this situation ourselves. And thank you for your kind words. As I’m sure you know first hand, writing about these things is extremely therapeutic. That’s obviously one of my unspoken goals here. But more than that, my hope is that something I say will help someone else, somewhere, do something better. Eleanor Roosevelt used to say “learn from the mistakes of others. There’s not enough time to make them all yourself.” So I suppose I’m trying help someone else follow her advice while doing the same myself.

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      1. You are most welcome. As you mentioned, half the reason I write is to process my own emotions. But I also do it to keep the family updated and in hopes that others on this journey will find it. I do love that quote.

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  3. I am speechless to what y’all are going through. I feel like anything I say will just sound cliche, and not enough. My heart is heavy for the unknown but also joyful that you have such a blessing in Willa.

    Thank you for writing and being vulnerable in sharing your life, and feelings. I am challenged by every post, to be better person and, live a more meaningful life, so thank you.

    Your family is beautiful!

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  4. Thank you for continuing to share your family’s journey. I hesitated before replying. I am not good with words and don’t want to sound trite or cliche. Just know that I will be praying for all of you.

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  5. There’s a concept in the hypotonia community – one inchstone at a time! Celebrate those inchstones. Willa has worked harder for them than any NT child has for a big milestone.

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  6. Thank you, Mark and Sarah, for sharing your journey with others … your writing is very informative to anyone who knows your family and to those who share a similar situation in their family. I offer my love and prayers to your family and please continue your blog. Love seeing pictures of your beautiful children,and my heart breaks for you and Sarah as you watch Willa struggle to achieve tiny developmental progress. My prayers for you and the family, we miss and love you all.

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