This moment is a good moment. I am content in this moment. Piper is breathing calmly, snuggled up in her Papa's lap sound asleep. We are meeting her needs in this moment and loving her in this moment. I am unable to live in any moment but this, really feeling deeply the truth, "do not worry about tomorrow, each day has enough trouble of its own." When we were first getting suspicious that Piper may be sick I quickly realized that the only way to get through this would be to remind myself constantly that all I have to do is love Piper, in the moment. If I love her in the moment, anything we have to deal with will be ok because we will be making any decisions based on our love for her, and we will be seeking to do whatever we can in that moment to show her our love. I don't have to worry about what she will be like tomorrow, or later. I don't have to wonder if she will be ok or if it will be too hard to deal with certain experiences. All I have to do is love her right now. Right now. I am amazed how much relief that has brought, being willing to relinquish all moments but this one to one able to handle the rest. And I am grateful.
It has been strange. Living so intentionally in the moment. I guess I didn't realize how much we assume a future until we couldn't assume a future. Our experience with Drew taught us to live one day at a time, almost to the point that we were unable, or unwilling, to make plans for any day but the current one. Any time we would make plans, we would end up having to change them. It created a new paradigm that we took forward even after his journey here was done. We began to create plans again after a while, but only recognizing the frailty of our plans. When Piper was born this perspective was only reinforced. There were so many days where I would rock her to sleep, breathing her in, where I would find myself thinking, "I am so grateful for THIS experience." We have been so intentional, we have created so many moments, and yet I began to wonder, "What is the value of enjoying THIS moment? I can't take it with me, I can't keep it, I might not remember it, so what is the purpose of embracing it like this?" I think I finally get it... it seems that the value is that even if I can't remember every little kiss, every little nuance, every funny giggle and sound, these treasures have created a love that will change me forever! I might have forgotten some of the little things about Drew I hoped I never would, but those experiences filled me up and I am still full. I love him still. I am marked by him forever, shaped by my love for him. I am a better mom for Piper (and Peyton) because of him. I am so thankful for his life. And I am so thankful for Piper's life. Besides, who couldn't love this???
On a more present note - Piper is not doing well. I will try to post a summary of our journey over the last few weeks in a day or two, but for now, I will just let you know where today has taken us. She was doing alright yesterday but not tolerating feeds well, which she has been receiving through an ng tube for the last two weeks. It got worse last night and by early this morning her breathing was quick and shallow, she was mostly unaware and her prognosis was not good. We had to stop her feeds for now because she couldn't keep them in. It was difficult to watch her and yet even then, you could see her little fighter spirit. At her lowest point this morning, she could barely move a muscle but she wanted Daddy to let go of her hand (she has never liked to have her hands held or restrained in any way). He was holding it gently because she began having constant seizing in her arm and it seemed like a tangible way to help, to keep her from hitting her side over and over with the iv tubing attached to it. She summoned what strength she had to reach over, so slowly, and began to pull at his hand. My amazing little girl. Your strength overwhelms me. I could be stronger in that moment because of you.
We thought we were going to see her off this morning, but she had different plans. She has stabilized some over the course of the day and has been very comfortable all day. She has had her eyes open, those little blues that never want to miss a thing and can see right through to your soul. She was even moving her dainty little right hand, floating over her blanket, fingering it, intertwining her fingers in it. My heart relaxed a bit watching her find comfort in these little things today.
We will take it one day at a time, and we are uncertain of her future, but for today here are a few pictures of my favourite moments!