Gwendolyn has had another rough week. And this weekend was down right lousy. The good news is that from a respiratory standpoint she is healthy — that is very, very good news for SMA. The bad news is this darn infection (or the problem we can't seem to figure out) just won't go away. It is now a three-headed monster battling a third round of antibiotics — and the last dose didn't really do much at all. All week long Gwendolyn just hasn't been herself. Hear heart rate has been racing through the roof and she's been battling a nasty fever. She's been tired — really tired — which means treatments are a challenge, bathing is difficult, dressing her, and anything that requires us to remove her bipap breathing machine is, frankly, life ending. But it isn't just off the bipap that she seems to struggle. She is choking when we carry her, she doesn't want to go out, she doesn't want to do anything that requires additional energy. She just can't do it. And there were times when she has seemed listless and without her usual sparkle. We have had tough moments this week — really tough — and a lot of worries, but then she will excitedly tap her fingers to Wizard of Oz, have a great experience with Gramma, or squeal as Bill and I dance with abandon to her rock n' roll preschool music (Pat-a-Cake has never been so hip). And during those moments we breathe a sigh of relief. We hope again.
Throughout Gwendolyn's journey with SMA, she has always been our guide. And the only way we keep from going completely insane is to know in our fiber that this is Gwendolyn's life and she calls the shots, she will tell us when she has had enough, and she will determine her destiny. We just have to listen.
During these tougher days it helps to remember all that is good because there is so much good in our lives and there is so much for which we are grateful.
- Gwendolyn's resilience — She goes through so much and she does so with so much wisdom and understanding — and so, so much forgiveness. After each difficult episode, Miss G brushes it off and is ready to laugh again, feel loved, find the joy in the world. And seeing her happy is what helps us carry on, too.
- Gwendolyn's doctors — Dr. Abbott and Dr. Yuan continually go above and beyond, continually help us and help her as we all struggle to find answers and comfort — and they do so with compassion and kindness.
- Gwendolyn's nurses — Gwendolyn's night nurses (Evelyn, Deanna, and Gina) and hospice nurse (Laura) are incredible. These women adore Gwendolyn as she does them and they truly know her subtle cues — sounds and looks that most don't even notice, but to all of us speak volumes and unlock answers to Gwendolyn's world.
- A complete partnership — This stuff is hard, really hard and Bill and I never take for granted that we are fully in this together, partners. We share duties equally, we share stress equally, we comfort and support our way through this as a team. And we know that is rare.
- Friendship, Family and Kindness — We never cease to be amazed by the support and kindness of friends and family, and how much it helps to bring joy to Gwendolyn and to heal out hearts. To have such sincere good people in our lives, to be recipients of such thoughtfulness and generosity is a blessing…and we truly appreciate those who love us and our little girl.
- Moments of sparkle — That look in her eye, that agreement to read a book, that faint sound of a giggle, that need of comfort and being able to provide it… those moments that fill our heart with calm, with certainty that today Gwendolyn is going to be okay… for each moment we are so grateful.
We started yet another round of antibiotics on Saturday and it has helped bring down the bad weekend fever and sky-rocketing heart rate already. She has color back in her cheeks and her finger tapping appeared again last night. We hope she starts feeling less uncomfortable soon. Why this is all happening is still unclear and there are a lot of things to be figured out, but we are so grateful to see Gwendolyn's sparkle returning…even if only in short doses.