Monday, January 16, 2012

Josh and Amy's Story

Josh is 27 years old and was diagnosed with cystic fibrosis at age 3 when his brother, Jacob, was born. The doctors discovered immediately (after lung complications at birth) that Jacob had cystic fibrosis. When the doctors were explaining CF and its symptoms to Josh's parents, they realized Joshua showed the same signs. He was tested and they discovered he too had CF. Up until then, doctors believed he just had asthma. The average life expectancy of CF patients is about age 37… but it greatly depends on the severity of your case. Some people have very mild symptoms, others are affected more in the intestines and digestive tract, others the lungs and sinuses, etc. Jacob has CF and CF-related diabetes. When Josh was diagnosed, it was estimated he wouldn't live through age 7. By age 7 he wasn't likely to reach adolescence, by age 18 it was unlikely he'd be able to go to college, marry, or have a job. He's done all of those through the strength and purpose he finds in Christ Jesus (by His stripes we are healed). Many CFers opt to have lung transplants, but both Josh and his brother have chosen not to be on the list. Josh has to do daily lung treatments including taking inhaled antibiotics through a nebulizer, doing the Vest machine (he straps this on like a life-jacket. It pulsates air to vibrate his chest in order to break up the mucus in his lungs), and he takes multiple pills. He has trouble gaining/maintaining weight because of digestive problems. In order to absorb any nutrients from food, he has to take 9 pancreas pills with each meal and several with snacks. Joshua struggles to maintain lung health, but averages around 50% lung function. His lung function will decrease over time as mucus builds up throughout the body and inhibits the natural functions of the lungs, digestive tract, stomach, pancreas, sinuses, etc. CF does not only affect the lungs… the creation and spread of infectious mucus clogs and complicates numerous organs and pathways throughout the body. Joshua’s hospitalizations depend mostly upon his lung function. If its low or he feels out of breath and energy, his physicians will hospitalize him for a few weeks of 24/7 IV antibiotics and around-the-clock treatments. His hospitalizations usually last between 14-21 days at a time. For the first time in his life, this past year 2011 Joshua was hospitalized three times (each for over 14 days). He also had his 5th sinus surgery. Josh’s hospitalizations can be especially dangerous because he has numerous medication allergies including PENECILIN and all its relatives. This causes a problem when his two most dangerous lung infections (pseudomonas and aspergillus) are only successfully fought-against by antibiotics that Josh is allergic to. Josh’s doctors and care staff have finally gotten to the point where they are trying to desensitize him to these medicines during his hospitalization in order to use them to fight his infectious diseases.
We’ve had some close-calls and depressing moments with Josh’s health, but for the most part, he’s an active, normal, powerfully optimistic person whom you’d NEVER guess (and he’d most likely never tell you) has a terminal illness. We’ve come to realize and accept that Josh’s life may be short and we know it’s definitely precious. But my life, your life, all our lives could be shorter than we anticipate, hope, and plan. Any of us could “go” at any moment. The point is, GOD IS IN CONTROL. There’s nothing I can do to stop, postpone, or protest His perfect will… and in all honesty and truth, I WANT GOD IN CONTROL. The Lord knows I can’t handle all of life’s challenges on my own. And if everything went the way I planned, I’d be in utter ruin! Josh and I must submit to God’s will every day. Whether or not we’ll have children, build a home, grow old together… it’s all in God’s hands. We give it to God, we MUST give it to God, every day. Otherwise, we’ll fret and worry our life away and lose what precious time and memories we have with each other. Life’s too short to question “Why?” and “What if?” It’s a hard thing to grip when you’re thinking about, dreaming about, and planning the future… but it’s God’s will for us to bear this burden - and He never gives you more than what you can stand. There’s so much encouragement in that. I wouldn’t change one thing if I had a chance to do it all over. I’d marry Josh again in a heartbeat… and I’d say my vows “In sickness and in health” with just as much faith and love “until death do we part”, even if it parted us sooner than we’d like.
In our darkest moments, when our future seems so precarious and our present seems so hard… Josh always says with such enthusiasm and in earnest, “These are exciting times, Amy!”
That’s my husband…

- Amy Glasscock

Check out Amy's recipe of Santa Fe Soup.

1 comment:

Anonymous said...

Amy, beautifully written and so very touching. Thank you for sharing. And Jenifer, thank you for sharing your blog, too.


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