We had a full weekend — mostly really good…but we had a scare with Gwendolyn on Sunday afternoon and, well, those always leave their mark.
On Friday we had an extra special treat. One of Bill's very best friends, Matt, sent us a lobster dinner: two live lobsters, scallops, and New England clam chowder. Matt has done this before and we always feel so blown away by such thoughtfulness. He lives in Boston and since we can't go out to visit him, he sends us the good stuff and a whole lot of love along with it. This is definitely a fun and special night. Bill and I make dinner together, laugh and feel squeamish about boiling the poor lobsters, and then savor every single bite! Thank you again Matt for creating a date night for us and making us feel so supported! We then followed this yummy dinner with delicious chocolate covered strawberries that were a surprise gift from my friend Jennifer. She also sent such a kind note about our work with GSF. Thank you again so much Swann family! We were definitely feeling full bellied and filled with enormous gratitude.
On Saturday, Christopher Finlan who runs Milverstead Publishing and is the author of Not A Fire Exit, a novel with SMA as the backdrop, spent the day with us. Among other things, he was in LA to work with the scriptwriter on turning Not A Fire Exit into a film. It still has a way to go, but we think it is so, so exciting that SMA may be the background story of a Hollywood film. And so in his super busy schedule we were super excited that Chris still found time to come up to Santa Barbara for an afternoon with us, which was awesome. Chris and Milverstead Publishing have been nothing but generous to the SMA community, donating thousands to different SMA charities over the last two years, and we are honored that GSF is one of them. And Chris has been incredibly kind and thoughtful to our family personally. Thank you so much Chris for all that you do and for a fun day together!
On Saturday evening we had a movie night. We all snuggled up on the sofa, popped popcorn, and watched Monsters Inc., a new gift from Aunt Kristen and Uncle Richard (thank you so much guys). Since none of us had seen it yet we weren't sure if: a) it would be too scary for Gwendolyn or b) would keep her interest. Well, she giggled through the entire thing, which made us giggle through the entire thing! We love hearing Gwendolyn laugh!!!
Sunday started out great. Gwendolyn was in a good mood and we had fun in her bath singing cowgirl songs and getting her dressed in her new cowgirl Jshirt. We then tried a new mask on her. We have used the same bipap mask for years, but now that her face is bigger it isn't fitting the same. We are always nervous about any changes, but we needed to try. Gwendolyn was so brave and willing to try something very new. It all seemed like it was going well. She seemed to like it. We watched her for an hour in it, took pictures, read books, and all was going well. And since it was going well, we left it on her for her nap. We still aren't sure what happened. I was on the computer near her and suddenly her oxygen plummeted and the alarm was sounding. I ran over to her and she was completely confused, having been in a deep sleep, and her oxygen was dropping and fast — and she was turning gray. I called for Bill and between the two of us we were able to get her suctioned and the mask replaced with the old one in just a matter of seconds (it felt like longer). But even in that quick time her oxygen dropped to the low 80s and she was pale, and very, very scared and shaken. I held her and rocked her and that helped allow her to fall back asleep, but Bill and I were definitely shaken, too. So many what-ifs were racing through our minds: what if she had not been on her oxygen monitor?…what if we had been downstairs?…what if we changed the mask and her oxygen continued to plummet. None of that happened and so we have to put our fears and worry aside — we have to in order to be good parents to Gwendolyn — but things like this leave their mark. SMA is beyond difficult and some days it is especially hard on the heart.
Gwendolyn, like always, bounced back with the resilience and bravery of Athena. When she woke up from her nap she was ready to play, wanted to dance and twirl, and have lots of extra kisses and tickles, which was very, very easy to give her. We love our courageous little girl!!! And we are always beyond blown away by her ability to brush things off — and I mean huge things — and move forward. And that helps us to move forward as well.