Monday, February 11, 2008

Something Amazing one SMA father wrote, Please read

1. 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
2. I appreciate when people ask questions about Gwendolyn; I hate when people don't and instead choose to make ignorant assumptions
3. 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
4. I think of Gwendolyn's funeral often and I'm comforted every day when I walk past our church where it will be held
5. 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
6. 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
7. 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
8. 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
9. I'm now a complete germaphobe, but it's life or death for Gwendolyn
10. I have a hard time remembering what it was like to not have a child with such "special" needs
11. I've become comfortable with empathy; I'm not okay with sympathy
12. I worry about the toll this is taking on Victoria, Gwendolyn, our family, our friends, and me
13. 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
14. I wish that when people were unsure of what to say, they'd just say nothing
15. 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
16. 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
17. I worry about keeping Gwendolyn stimulated - bringing the world to her - but I know I am doing the best I can
18. I'm no longer self-conscious about how "different" we are; whatever that means
19. 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
20. I'm the furthest thing from a doctor, but I am one of Gwendolyn's caretakers and I know what is best for Gwendolyn
21. 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
22. 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
23. 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
24. It kills me that our family is going to shrink, when it should be growing
25. 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.

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