Daisy Posted October 16, 2011 Share Posted October 16, 2011 Has anyone read this today? I cried. MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him. I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure. How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit? Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human. Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future. We never thought about how we might parent a child for whom there is no future. Rest of the article. http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?emc=eta1 I think the lines that struck me the most were, All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart...We’re not waiting for Ronan to make us proud. Quote Link to comment Share on other sites More sharing options...
bzymom Posted October 16, 2011 Share Posted October 16, 2011 Perspective. Thank you for sharing this. Quote Link to comment Share on other sites More sharing options...
EmilyinND Posted October 16, 2011 Share Posted October 16, 2011 Perspective. Thank you for sharing this. :iagree: Quote Link to comment Share on other sites More sharing options...
Impish Posted October 17, 2011 Share Posted October 17, 2011 :crying: Quote Link to comment Share on other sites More sharing options...
SKL Posted October 17, 2011 Share Posted October 17, 2011 I follow the blog of a family that recently lost a daughter to Tay-Sachs. Interestingly, their daughter did make them proud, but not in the way they originally hoped. More in the way she taught those around her to view life. It is devastating, though. There is nothing they can do. Quote Link to comment Share on other sites More sharing options...
Daisy Posted October 17, 2011 Author Share Posted October 17, 2011 I follow the blog of a family that recently lost a daughter to Tay-Sachs. Interestingly, their daughter did make them proud, but not in the way they originally hoped. More in the way she taught those around her to view life. It is devastating, though. There is nothing they can do. I took her line to mean he has already made her proud rather than that one day in the future he might. I guess I saw it more as a reminder to be proud TODAY. Quote Link to comment Share on other sites More sharing options...
SKL Posted October 17, 2011 Share Posted October 17, 2011 I took her line to mean he has already made her proud rather than that one day in the future he might. I guess I saw it more as a reminder to be proud TODAY. I see your point. Yes, every child is a gift every day. Quote Link to comment Share on other sites More sharing options...
mcconnellboys Posted October 17, 2011 Share Posted October 17, 2011 As we finish up a study of the Screwtape letters, I'm reminded that God wants us to live in today, or in Him, not in the future.... Quote Link to comment Share on other sites More sharing options...
Hedgehog Posted October 17, 2011 Share Posted October 17, 2011 :sad: It's true - it does give you perspective, when you have happy, healthy children, growing up with hopes and dreams and plans that they might well fulfil, one day. Quote Link to comment Share on other sites More sharing options...
JVA Posted October 17, 2011 Share Posted October 17, 2011 As we finish up a study of the Screwtape letters, I'm reminded that God wants us to live in today, or in Him, not in the future.... Amen. :iagree: Quote Link to comment Share on other sites More sharing options...
goldberry Posted October 17, 2011 Share Posted October 17, 2011 I loved this part.... Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is. Thanks for sharing...I tend to get tied up in "the future" too much... Quote Link to comment Share on other sites More sharing options...
LNC Posted October 17, 2011 Share Posted October 17, 2011 Someone else shared this too. Thanks for this - it was beautiful. We have face the same with our oldest. Quote Link to comment Share on other sites More sharing options...
Amber in AUS Posted October 17, 2011 Share Posted October 17, 2011 It made my cry and cry. Possum has a friend from NICU who is palative, he's 10m now and they didn't think he'd make it this far. You really need to live in the moment, you never know what can happen. Quote Link to comment Share on other sites More sharing options...
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