Knowing Jesse: A Mother's Story of Grief, Grace, and Everyday Bliss

Do not miss this one!

When I saw that there was one customer review and it was one star, I knew I had to write a review... Eleven years ago my sister lost her 8 year old son to seizures complicated by his CP. She was a single mother and our family was very involved in helping with his care whenever we could. Obviously, the topic grabbed me immediately. I've almost finished the book, but must make sure I have a box of tissues and some comfort food nearby. One never gets over the loss of a child -- they only get used to it. As a result, there are times of grief that we go through. Grief can be lonely -- and unless you've actually "been there" it's hard to understand why someone is still feeling this way after such a long time. Ms. Leone has shown me that we are not alone. In fact, I came here tonight to have a copy sent to my sister. What has been striking for me has been that there are times when I am reading this and I can hear my sister saying the EXACT same words. Words that are sometimes hard to say. Feelings that are sometimes hard to share. In short, she shares the profoundly intimate journey of a mother just wanting to do the best for her son against gray people feeding her impossibilities and grim odds. For me, this is a story of moving through (not past) our grief and challenges and not forgetting the joyful blessing of knowing someone like Jesse. I think this story is for a varied audience -- for those who do not understand the challenges of raising a child with disability, for those who are struggling with those challenges themselves, and even for those who are finding it hard to put their feet on the floor because of grief.

1 out of 2 people found this review helpful.

Always in my table

This book was suggesred to me by my daughters occupational therapist! My daughter has a rare syndrome called macrocephaly capillary malformation. And much like Jesse she too faces seizures, mobility and non verbal behaviors such as hand flapping, outburt etc! This book for me gives a honest account of the first time you meet the disability head on, it really is fight or flight. This book gave me the words i needed to see in print. Marianne gives great narration to the struggle, the calm and tge love between mother and child. The book takes you for a ride tgat if you are currently not on bybthe second chapter you will. You fall in love with them. And you wish you has a cregiver like they did with Brandy. Overall a wonderful book tgat i read when my hope has left the building.

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