Gwendolyn is doing really well overall but is still recovering at home. I'm not going to lie, this is tough watching her struggle and not being able to do much to help her progress. Emotionally she so wants to take on the world, be back in school, socialize with her friends… but she's just not physically strong enough yet — and she knows it. We had a nice lunch outing this weekend and plan to continue venturing out if she has the steam, but every day is a bit different and it is slow baby steps as she regains her full energy.
The big highlight of our week was taking professional family photos with the amazing Kacie of Kacie Jean Photography. I can't begin to say how much these mean to me. I think Bill and I held it together pretty well when Gwendolyn was in the hospital — especially given Eleanora was only three weeks old when she was admitted and my postpartum hormones were still raging. But when I realized we didn't have a family photo of all four of us yet, I lost it — unsure if we'd ever have the chance to take some. But… Now we have these and they mean the world.
I cherish photos of Gwendolyn and professional photos are extra special. I remember each shoot, what Gwendolyn was wearing, how I felt that day, where we were on our journey with SMA at that exact moment. We didn't take professional newborn photos of Gwendolyn; they were expensive and, well, we didn't know about SMA then and that has changed everything. Our first professional family photos were taken exactly a week after we got her diagnosis; she was 5 1/2 months old.
Kacie has been photographing Gwendolyn since she was just a wee 18-month-old peanut. I remember that photo shoot like it was yesterday. We had just met Kacie that day but she immediately put us at ease and made us all feel totally comfortable. Kacie is outgoing, warm, patient, and incredibly talented. And she is just a wonderful person whom I feel fortunate to call a friend. She has since photographed our family multiple times and she generously donates her time and talent photographing Team GSF each year in the Santa Barbara Marathon. And last June she helped me surprise Bill on our ten year anniversary with the news of my pregnancy… so neat that she captured his reaction!
One of my favorite things about taking professional photos is the preparation with Gwendolyn. She and I go through her closet and pick out her special outfit together — this time she immediately chose her new butterfly pattern Lilly Pulitzer from Aunt Elizabeth. Gwendolyn is always so specific about what she will wear and the accessories and details to match (love her stylish eye). Daddy always spends the morning oohing and ahhing over her as we get ready… and she eats it up. Gwendolyn felt so pretty that day and that made us so happy to see and she was thrilled to get to take special photos — this time as a Big Sister!
Gwendolyn is such a pro and when Kacie arrived she immediately started posing. Little sister has some learning to do but Gwendolyn was very patient as Eleanora wriggled getting her tiny fingers stuck in Gwendolyn's hair and bipap. Watching the girls together, being typical sisters, I was overcome with tears of joy. We weren't sure we were going to get to have professional sister pictures and they make my heart swell. Gwendolyn was exhausted after the sister and family pics so while she took a little nap Kacie worked her baby whispering magic and we got the sweet sleepy newborn photos of Eleanora.
Maybe it is silly that photos mean so much to me. Trivial. But they feel tangible and help me hold onto so much that can feel so fleeting. Thank you so much Kacie for this wonderful gift! Click HERE to see a video Kacie created of even more photos.
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