Thank you all. Trying to fall asleep and just thought i would share we have had a wonderful family weekend and I think Davis is in a good place. As good as he can be, considering. But if you see him this week, don’t be afraid to give him a hug. 🙂
Our bags are packed, along with snacks and toys and towels, because we are pros at this now. We know when we will need full toiletries vs just the bare essentials for the first 24hrs since ICU is kind of a mess to live in. We know kid-sized towels just don’t cut it and we know hospital air is like being on a plane. We have packed the extra dry skin lotion.
As for the sleeping princess, she has been cleaned and hopefully fed enough to last through the waiting period between 4-7 in the morning ( how long she will be awake without getting her milk until they take her back for surgery). And she has been kissed, a lot.
I know these lips won’t change and these sweet fingers aren’t effected. But it’s still scary. Like taking a piece of her brain actually could make her disappear from me. And maybe it does change who she is a little. Maybe it changes things, where maybe she will be able to learn and some day talk. But that doesn’t change who she is — a fierce, amazing little girl with a sweet and silly little personality bottled up inside. I try to not obsess over what’s lost, as my wise grandmother has reminded me. But stay focused on all the new good things that are coming.
And finally, we’ve written our letter to her. An apology, a love letter, an encouraging word — to be saved for a day when she needs it many years from now. We have no way of knowing what this decision does for her whole life, but we are holding on to our trust in the doctors that it’s going to be better. It has to be. Our love for this girl, like every parent’s, takes our breath away. It’s suffocating when you can’t fix them. So here we are doing the only thing we know how to make sure we save our baby, no matter how scary it is.
Thank you all for being there. You make us smile when we think there is no reason left to try. We really, really appreciate it!