Christmas Part III still to Come

The last few days have been good and challenging. Madeleine is doing ok; as we mentioned she has a different challenge every day but that seems like business as usual. Her main complications are with her digestion. Now that she has a regular routine of medications and a laxative and a stool softener are included, she's managing to do her business more regularly but not without discomfort or trapped gas pains also regularly. Thank goodness for heating pads. A new part of our daily tasks is to keep her tummy warm and massage the gas out, including Christmas morning and Big Sister was very good with her patience until we could open gifts. We felt so blessed to be able to give them so much this year, so much in fact that they weren't able to open them all! Annalise got stuck on a favorite toy and Madeleine fell asleep, so the gift unwrapping continued on the 26th :) super blessed. Oh, and they still aren't done- hoping to wrap it up by Friday, Daddy's birthday.
We also met with the hospice nurse finally. Jeff and I feel like we've managed Madeleine's care well on our own and because of our resolve to keep life normal, we're keeping it together surprisingly well, which we conveyed to our new support team. We have told them that our primary objectives for hospice really include on-call assistance for the just-in-case situations and ensuring Madeleine is comfortable by most means necessary; psychological assistance for Annalise, and the professional support when the inevitable occurs. We are extremely realistic about what's going on and because of that, we also quite certain we will fall apart when it happens.
It's the absolute strangest sense of existence, the unwelcome anticipation or unknown of "when," where life is almost suspended in the air like an acrobat. Yesterday was a good day mostly, and that is mostly defined by Madeleine being comfortable and happy. Unfortunately one of the first things to go has been her personality so we absolutely revel in her talking noises when she's feeling better. This morning she had a great deal of difficulty picking up her pacifier that she allowed to fall from her mouth and it truly upset her. We're pretty confident she's smart enough to know what she wants to do and is truly frustrated that her body cannot do what she wants. Since last week her right side had already begun to go loose, though she had good control of her left side. This morning's episode was her left hand now starting to lose control of. At least the hospice nurse is able to check her over and assure us that as of her exam, her breathing and heart rate are steady; while other things may be affected right now, we don't expect her to stop breathing tonight so to speak. In all honesty, we're praying for a peaceful, serene experience for her rather than something abrupt, traumatic or painful. This is the extent of our "preparation." We're just not ready to go there until we have to. While we will always believe in miracles, we acknowledge what we see before our very eyes, hold her close every night to keep her warm and feel her breath, to make her feel our love for her, to reassure her that we trust her, and look forward to the day we see her happy, healthy and pain free. This is truly a debilitating yet beautiful existence these days.