Tuesday, August 11, 2015

Ten Years Ago Life Changed

It was ten years ago this summer (starting July 18, 2005) that Denise went into the hospital and our lives changed. Though her hospitalization lasted "only" eight and a half months, not a day (or an hour) goes by that we don't feel the impact of her living with primary and secondary damage done by her Valley Fever infection. There are places we'd like to go & things we'd like to do but can't include Denise. There are other places we have to go & things we have to do that we'd rather not (usually involving doctors & procedures). There are things we have to pay for... the medication, doctor visits, procedures, supplies, adaptive devices... that take away from more enjoyable things we'd rather pay for. There are invitations we have to turn down due to a combination of fatigue level, Denise not being able to drive herself or the kids under some circumstances, and our schedules. 

As frustrating as these and other things can be for me and the kids (who as they're getting older are increasingly aware of and feeling the lingering challenges), they are most difficult for Denise. She bears the scars, physically and emotionally, from having been near death for so long, having a trach, feeding tubes, having compromised function or damage of lungs, heart liver, kidneys, GI tract, brain, and other organs. The antifungal med that she's on to suppress the cocci (Voriconazole) puts her at a higher risk of skin cancer, so she usually avoids outdoor activities & events (and says she thinks she looks pale, I think she's a knockout, however). And then there's the stink-eye she sometimes gets from people when she, as a relatively healthy-looking person on the outside, parks in the handicap spot. She's said sometimes it was easier when she looked ill, still needed the wheelchair, and was tethered to a feeding tube because at least people could see something was definitely wrong. At the cocci study group I attended a few months ago, a presenter addressed the social/emotional effects of cocci, which isn't something I hear too much about. But those have been difficult for Denise more than the physical sometimes. The combo of cognitive, hearing, and vision impairment, however mild, leads to a lot of stress in social situations. Fatigue is a biggie... the levels sometimes also result in feelings of alienation because she can't often volunteer at the kids' school & church youth groups, or be present with us for many events. So between the physical & emotional/social stuff, she sometimes feels like a bad mommy/wife/friend/neighbor. 

But then we can contrast those negative things with the very good things. I got my wife back, the kids got their mom back, the parentals got their daughter back, the siblings got their sister back, the neighbors got their neighbor back, and the pattern goes on. We're grateful for the many medical professionals of all functions and specialties (one of whom is in this photo from our summer road trip) that helped save her life. I'm grateful for their hard work, dedication, skill, compassion, on and on. We've been able to experience the care, love, and support of so many people that carried us through the crisis that it amazes me (and humbles me, as I was usually the "go to" guy for things and suddenly needed to rely heavily upon others). Going through hardship has a way of helping us more authentically commiserate and minister to others that are suffering. The most recent lab titers show that the Voriconazole is suppressing the cocci effectively (protocol is that she'll be on Voriconazole for life since her case of cocci involved meningitis). We don't know if or when her cocci will recur, but we're glad to have had a long season of relative stable health. And the list of things I'm grateful for goes on and on (and should probably be much longer, now that I look at the previous two paragraphs of downer items). 

For sure, though, ten years living with a disability (and being the spouse or children of someone disabled) certainly presents many opportunities to deepen our reliance upon God. And that growth is a good thing indeed.


Anonymous Breakfast at Harmon's said...

Your post made my decade!

January 19, 2016 10:39 AM  
Blogger Phil & Denise Williams said...

Hi "Breakfast at Harmon's"! I didn't see your comment until today. But if you ever happen to come back to this comments section again, you made OUR decade possible! May there be many more, right?

May 26, 2016 11:16 AM  

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