This Moment.September 02, 2011 by Victoria
When Gwendolyn was first diagnosed, within two weeks we were hit like a ton of bricks with the reality of SMA -- a consultation trip turned into a month-long hospital stay at Stanford, new routines, new machines, a surgery, so much uncertainty, a failed ambulance ride home nightmare, a collapsed lung followed by another hospital stay, emergency after emergency, no time to think about any of it. We spent much of Gwendolyn's first year moment to moment. We had faced losing our daughter multiple times, we had seen what that may look like, and we knew that even with all the intervention steps we were taking, there were no guarantees. For much of Gwendolyn's first year we simply could not look out to the next day let alone a week or a month ahead. But then she got stronger. And then she wanted more. And so we did more and more and more. And each time we saw Gwendolyn's joy we pushed ourselves a bit further. We got over ourselves and held our fears close in so she couldn't see us tremble as we tried new things, as we ventured beyond what at one point felt impossible. And then we started making plans and we began looking toward the future -- toward Gwendolyn's future.
Having to pull back the last month (really the last several), not being able to do all that we had planned to do, has been difficult. When Gwendolyn simply doesn't have it in her to go, go, go, when she doesn't want to venture or push or plan, we are having to relearn to slow down and savor. I'm not going to lie -- over the last month I've felt scared and sad and filled with worry and, of course, I still do. But, something in me (and in Bill as well) has clicked, has shifted and we are laser focused on the now. I don't think we have ever taken any day with Gwendolyn for granted, but life gets busy and we allowed ourselves to let go and just live. We have had moments of feeling pretty bummed out about the reality, but right now we are choosing to ignore the fear and focus on this moment...because even in the wake of difficulty, there is nothing more beautiful than your child.
- This moment. The look in Gwendolyn's eye (like the soulful knowing eye of a giant whale) that signals, "Get in bed with me, I need snuggles." And after climbing over chords and tubes and settling in next to my sweet big girl, feeling her heartbeat, kissing her little head, rubbing her tiny vertebrae, and recognizing without having to look that within two minutes she has fallen into a deep sleep. This is a good moment.
- This moment. Overhearing Bill and Gwendolyn in their own routine -- talking like a robot during the morning breathing treatment, dancing to the Mickey Mouse Clubhouse "Hot Dog" song, singing princess ballads -- and hearing Gwendolyn squeal, though more faint than usual, knowing she's smiling and feeling loved and protected. This is a good moment.
- This moment. Reading books to Gwendolyn together, all three of us piled on the couch. Watching her fingers tap in anticipation even though she's heard the story a thousand times. Asking if we should turn the page just to hear her enthusiasm and see the excitement in her eyes. This is a good moment.
- This moment. Gramma's Tuesdays. Seeing how confident and certain Gwendolyn is when Gramma is around, an expression that says, "What fun did you bring this week, Gramma?" and "Look how smart I am, Gramma." And all the while Gramma builds up her confidence like only a grandparent can do. This is a good moment.
- This moment. Just the words, "You have a special present from someone special" and seeing her stop everything, pull her interest away from all else and start tapping her fingers in anticipation, seeing her take in every word from the card, looking toward the wrapping as she does. And the moment she sees her gift, the way she feels proud and special and loved. This is a good moment.
- This moment. Dancing. While she isn't up to being twirled around as usual, just lifting up her arms while she lies flat and moving them to the music -- up, down, side to side -- pressing our cheek next to hers for a slow song or supporting her little elbows so she can move her wrists to the beat and seeing how happy this makes her... especially when we tell her what a great dancer she is. This is a good moment.
- This moment. The simple. The unplanned. The smelling of fresh flowers. The silly face Daddy makes. The "I love you" with a soft "Guh" back. This is a good moment.
We don't have any answers yet about exactly what is going on with Gwendolyn, but we are starting to see some improvements. We hope to know more soon... and we really hope to see Gwendolyn get her full steam back. But for now we are just savoring the good moments.