This weekend, we have the honor of attending one our best friend’s wedding in Montana. While Dave (the Best Man), and Eva (the flower girl) have been there since Thursday for the rehearsal, I am heading out today (Saturday) so that we only leave the other girls (Livvy specifically as she is the most medically fragile) for one night.

Ever since I left the house this morning I felt sick to my stomach. I even slept terrible. But I know she has been doing well this week and my parents are taking excellent care of her at home. Yet there is still that nagging feeling, or feelings, of dread, sadness, separation anxiety and nausea, but also hope and reassurance. It’s a weird mix.

I never used to be this way prior to the girls’ diagnoses. I’d enjoy our child-less nights while the girls were with grandparents and have complete peace of mind. Would think nothing of it. But now even when Eva or Keira stays overnight with grandparents I miss them…a lot more than I used to. It’s weird without them around and I feel like it’s only because we know how fleeting life can be. We know how important every moment is with them. We know our world can change in a matter of seconds.

It is so weird to now think of life with such finality in every choice or action but I suppose when you have a child with a terminal illness it is inevitable. Life is fleeting.

So it is especially hard leaving this time because it is the first time since the girls’ diagnoses that both Dave and I have been away. And with Livvy only continuing to decline we have no idea how much time we have left with her. It could be days, weeks or even years. The disease is so rare that doctors won’t give a timeline.

So as I sit in the airport terminal forcing myself to eat something I am also trying to push away the butterflies; reminding myself that she will be ok for one night. She knows where I am and who I’m bringing back home with me tomorrow. She smiled when I told her.

But I will think only of her and Keira’s sweet faces until the moment we get back home and see them safe and sound. 💜💜

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