We walk this story together

Like so many other recent moments, Genevieve has once again pushed that time line.   We will not lie to her when it comes to her heart – this is her story and she owns it.  We walk this story together – it is hers and she will not travel this road alone.  We have made choices on child-appropriate language and we decide when and how much to share.  Until life happens and we are pushed into a conversation that we are not prepared for.

Since we set the date, we have told Genevieve that her surgery would probably be in January barring any delays and that we would talk about it more as it got closer.  Back in November, she realized that BCH on the calendar stood for Boston Children’s Hospital and she found the date for her cardiac catherization.  In December, she started lifting the pages to take a peek at January in the hopes of finding out when her surgery would be.  While the date was marked with a symbol, it was less obvious and we managed to avoid the specifics.  Until this morning . . .

I love my parent’s house – it will always be home.  Sitting around the kitchen, drinking coffee, my mom making breakfast while Harry & Genevieve dance around and fill the room with non-stop chatter and laughter.  It was just what I needed until Genevieve spotted the calendar “Genevieve’s Surgery” in my mom’s perfect penmanship in the box for January 27th.   So now she knows.

With wide eyes and a small knowing smile . . . “my surgery is January 27th?”

I won’t lie to her about this. Yes, Genevieve, your surgery is currently scheduled for January 27th with a day of pre-op on January 26th.  There is still the possibility for delay . . . so my little busybody, it could change but that is the plan.

In typical Genevieve style – she is taking it all in stride.  Caught up in the thrill of knowing something that we were not yet ready to share with her.  It will probably hit her later – my guess is when it is dark and she is in bed.  Make no mistake, she is my girl and so much tends to come to the surface late at night when all is quiet.

Harry was kind enough to do the math – 16 days away.  My analytical boy.  He is working out the details in his own head, making sure his grandparents know that he is expecting them to be there to support and care for him when the focus turns to his sister.

As to me – feeling emotional, lost and just a little wrecked.  Par for the course.

Genevieve “You can’t scare me, I battle CHD” and Harry keeping the beat for his sister.




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