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25 Honest Things

February 10, 2009 by Bill Strong

  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

Talk About It

[...] wrote a blog post in February 2009 titled 25 Honest Things. At the time there was a Facebook “25 Things!” thing going around and…well..these [...]
Posted by Getting Out With A Child With Spinal Muscular Atrophy or Other Disability | Gwendolyn Strong on 2011-02-16 08:39:42
That was very honest . . . sending you hugs and love!
Posted by Sarah Turnbull on 2011-02-16 20:03:45
Bill, Today as I was getting some things for Amanda at the pharmacy I also thought about an honest thing... When I go to buy a medicine or gauze or sterile gloves or anything, when they ask how many I want, I start to calculate for how many days I should buy and then I worry that I am calculating for too many days, I then worry that she might not be here to use all the stuff that I bought. So I usually buy for approximately 10 days...that kills me!!
Posted by Marcela on 2011-02-19 16:28:44

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