There isn't a lot of new news to report. Patrick is still with us, and he's still (very) stable. We have him on a regiment of relaxants and pain medication to keep him comfortable, so he's sleepy much of the day (and night). He has a few windows of wakefulness (usually late morning and then again in the early evening), but it's not always consistent. He seems to really hear and understand what we are saying when he's awake, but he's not able to communicate at all with us. There are no more eyebrow raises, hand squeezes, thumbs up or mumbled words to discern. Instead, we're learning to read his body for signs of agitation, stress, discomfort or fatigue.
We spend much of our time with him massaging his (shrinking) muscles, relaxing his tensed joints, re-arranging his pillows for better breathing and sleeping positions, and clearing out various orifices so that he has clean passageways to breathe. Soft music plays around the clock, and between his Aveda lotion-ing products and his lavender air freshener, his room is almost spa-like. (Not a bad place/way to live out your last few days, eh?) For the most part, he seems comfortable and comforted, but it's challenging to know how much he understands or grasps what is happening to him. We do our best to remind him of our love for him, and reassure him that he has nothing to fear in leaving us, as we trust he is going to much better, healthier, joy-filled place. (I of course say this confidently to him with tear-stained cheeks, as I'd really rather that he stay here with us, helping me to raise a healthy, happy family together. But, alas, I don't think it will work out like that.)
With each new day, I dread that it could be his last. And with each goodbye, I fear that it's our final parting. And yet, he continues to hold fast. We have no idea how long this dying process will take: it could be weeks or months. I feel fortunate to be able to spend more time with him, to leave no word unsaid or kiss ungiven before he passes...and yet the ongoing daily grief is really hard, to say the least. Perhaps it's similar to the last days of my pregnancy with Cecilia, when I felt huge, uncomfortable and so anxious to meet her. I knew what the end result would be, but I didn't know when it would come, or how it would precipitate. So, too, here I know that he'll pass, at some point, but I don't know when or how...and perhaps it's better that way.
Cecilia went to Boston with my sister Amy, "my Mimi", as Ceci says. She was very excited to board an airplane with her new rolling backpack and purse full of goodies. As she confidently strode away from me, looking far more grown-up than she is, pulling her carry-on, and daintily holding her purse in front of her, she shouted back, "bye, Mom! I go to Bah-ton with my Mimi!" She's having a blast with her cousins, and probably less aware of my grief, or my constant trips to the hospital. It's a gift to be able to concentrate on PK's care for now, while knowing that she's happily in good hands.
If you'd like to visit Patrick, or come say goodbye, please do. In general, one of us is there with him from about 9am-10pm, so feel free to stop on by. He'll most likely be asleep when you come, but I trust that he hears us, and knows of our presence with him. (Just please don't try to coordinate your visit with me; I'm barely answering phone calls or emails these days, as it's so hard to regurgitate the latest dismal updates, and I don't always know when I'll be at NIH, etc.) Check-in with one of Patrick's sisters, or our priest, David Hanke, if you feel the need to coordinate a visit or get the latest info.
Thanks for your continual prayer and support. Your love, along with the comforting love of God, continues to give us strength for this long, hard journey.