R is going to have his 6th open-heart surgery on Thursday, October 9. He was born with a single ventricle heart and doctors are going to attempt to build him a new ventricle with a procedure called a 1 1/2 ventricle repair. In an effort to explain R’s story, I came up with this video. Please share it with anyone you think would be interested in sending good thoughts, offering well-wishes, prayers, good karma, a force field, or any other type of positive vibes his way. Thank you.
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Tuesday, September 30, 2014
The whole truth
Have you ever had the feeling that I haven’t been telling you the entire truth about everything? That maybe I’ve been holding back even though I’ve alluded to this, that, and the other thing? It’s definitely hard to find the line that separates private from public and public from private, especially when it comes to my kids who increasingly move in their own worlds and may be impacted by what I write here. But in the interest of openness and being in need of drawing support from my family, friends, acquaintances, the community, people I’ve never met, and so on, I wanted to bring you up to speed.
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Beautiful, beautiful, beautiful. On my end: tears, lump in my throat, scrunched up forehead, loving you. xo
ReplyDeleteThanks Jessica. Knowing I have a safety net of wonderful people to fall into is comforting. xxoo
DeleteSuzanne I am so sorry you all have to deal with this unfortunate condition your son is going through. I will be sending positive energy for a successful outcome of a lifetime of many happy memories to make together in the future. lots of love to you & your family.
DeleteI recently just opened up to my readers about somethings too. Living life online can be hard to determine our story vrs or kid's story. It is a really tough tightrope to cross. I can tell you this. The online world can be a beautiful life line of support. I hope you find that here with your words. We love R. We will be thinking if him on this day.
ReplyDeleteThanks Beth! I have always found the online community to be a huge source of strength during previous hospitalizations. And I can only hope as my children read my blog/book/articles (if they do), they will see it for what it really is...a mom doing the best she can to get through the day and reaching out to others and to connect with others through our journeys. I've often told Riley that I wrote my book so that other people who've had kids in the hospital don't feel alone. The same can be said of this blog. xxoo
DeleteLovely Suzanne. Simply beautifully done. I remember Riley at all those stages. I am sending our love and good wishes next Thursday. I'll be thinking of you all. From my family to yours. Much love, Joce
ReplyDeleteThanks girlfriend! You have been there all along and for that I'm so grateful. xxoo
DeleteLoved the video! It's amazing that sometimes love looks like taking your child to yet another open heart surgery. We know a bit about what your shoes feel like and will be praying for all of you on the 9th. You are stronger than you feel and... Riley is stronger than we all can imagine.
ReplyDeleteHugs to each one of you!
- Elizabeth Dameron-Drew
Wow, you are right. We will take Riley to Stanford because we love him and want him to have the best chance at having a good quality of life...even though the last thing I want is for him to have another surgery. Just trying to focus on when we can travel without oxygen and visit mountain tops, our world expanding. xxoo
DeleteI'm another heart mom (my son is now 19). I will send my love, positive energy, God's will, whatever it takes to protect Riley, guide his surgeons hands, and make all of your hearts stronger.
ReplyDeleteStrong hugs,
Maria Tefft
Maria, knowing you (and others) are out there sending positive energy our way helps me feel like we're slowing piecing a force field together. Thank you!
DeleteYou're all so brave and we send every good wish and positive thoughts for R. Love from all of us, Popsy.
DeleteThoughts and prayers are with you and your family. Thanks for sharing your story.
ReplyDelete