- I've come to terms with the fact that I'm going to lose Gwendolyn to SMA, but I'm terrified of watching her slip away from me
- I appreciate when people ask questions about Gwendolyn; I hate when people don't and instead choose to make ignorant assumptions
- I worry about our $5mm health insurance cap from time to time; it didn't even cross my mind when we set the policy up 5 years ago at age 27
- I think of Gwendolyn's funeral often and I'm comforted every day when I walk past our church where it will be held
- I get anxious knowing that we'll have to save Gwendolyn's life at some point again; it comforts me to know we are well equipped to do so
- Most of the time I feel like it's next to impossible to focus on anything other than Gwendolyn and Victoria; but, they're all that matters right now
- Wherever we go, I know where the nearest pediatric intensive care unit (PICU) is and I know which one is best suited for SMA and our philosophy of care
- I no longer believe “everything happens for a reason”; I've never believed God had anything to do with my plan, now I'm certain of it
- I'm now a complete germaphobe, but it's life or death for Gwendolyn
- I have a hard time remembering what it was like to not have a child with such “special” needs
- I've become comfortable with empathy; I'm not okay with sympathy
- I worry about the toll this is taking on Victoria, Gwendolyn, our family, our friends, and me
- It bothers me that we have to keep a bag packed for hospital emergencies; it stresses me out that we'll be using it again
- I wish that when people were unsure of what to say, they'd just say nothing
- I understand that all parents have to make weighed decisions, but every-single-simple-decision-I-make-for-Gwendolyn-has-actual-life-or-death-consequences
- I've become accustomed to the constant sounds of Gwendolyn's machines, but I think that when they are gone the silence will be deafening
- I worry about keeping Gwendolyn stimulated – bringing the world to her – but I know I am doing the best I can
- I'm no longer self-conscious about how “different” we are; whatever that means
- I've always had a “life is short” mindset; I never thought my daughter would be the one to teach me what that truly means
- I'm the furthest thing from a doctor, but I am one of Gwendolyn's caretakers and I know what is best for Gwendolyn
- When I'm in crowded places, I sometimes think about how many people around me don't know they are carrying the SMA gene; that makes me sad
- I've thought about whether we made the right decisions, not for us, but for Gwendolyn; her zest for life and playful smiles lead me to believe we have
- It's exhausting to constantly have to fight for everything and educate others; I wish the system were different and this weren't so, but I'll never stop fighting
- It kills me that our family is going to shrink, when it should be growing
- I am mindful that every time I hug and kiss Gwendolyn goodbye or goodnight that it may be the last time; and I make certain to cherish every single joyful one of them