St. Anne Catholic Church

SEE HOLY WEEK SCHEDULE BELOW | DAILY MASS TIMES: Tues-Sat. 7 a.m. | CONFESSION FOLLOWING Wed, Friday & Sat. Mass | ADORATION FOLLOWING Wed & Friday Mass | WEEKEND MASS TIMES: Saturday 5:15 p.m., Sunday 9:15 a.m. & 11:30 a.m. (262) 942-8300. 

Rare Beauty by Linda Bevec

Sage advice tells us “If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck.” This age old “duck test” is a humorous form of inductive reasoning… a kind of reasoning that allows for the possibility that the conclusion is false even when all of the premises are true. In the world of medicine, clinicians learn that common diseases are common. However, sometimes, the rare diagnosis can actually be the right one.
Our family recently took a trip to Washington DC. Not so much for vacation and sightseeing, but for participation in a clinical research study at the National Institutes of Health Rare Diseases Program. We’ve been in the study for 7 years to hopefully be of some value to a small dedicated group of doctors and researchers who are seeking to better understand the rare genetic kidney and liver disease our daughter was born with. Each year we spend 5 days in the clinic shuffling her up and down elevators and long hallways to complete a marathon of tests, blood draws, exams and procedures.
At the end of the week we sit in a cramped conference room with members of the research team to review all test results and begin an in-depth discussion of polycystic kidneys, enlarged spleens, fibrous livers, abnormal bile ducts, portal hypertension and their overall clinical findings on the progression of our daughter’s rare disease. I can’t tell you how many times I’ve heard “rare” in conversations over the years while talking to doctors or describing to family and friends the many clinical manifestations this awful disease can take and variety of eventual outcomes we have to look forward to. And in all of these situations “rare” is a word that has left me feeling somewhat unlucky; kind of like getting the short straw in a draw or being the last kid picked in the line-up for a game of kickball at recess. As if having any serious disease isn’t bad enough, but throw in the word “rare” and it sort of makes you feel like the one person out of a million to be struck by lightning each year.
But I’ve come to think of rare in slightly different ways. Like most words in the dictionary, rare has many definitions:
1. infrequently occurring; uncommon. Yes, our daughter’s disease is infrequent, occurring just 1:30,000 births per year. But I recently learned that rare diseases are actually quite common. There are 7,000 rare diseases that have been identified in the United States alone. We met a little girl at the research clinic years ago with a rare disease that affected her ability to grow and her bones were as brittle as chalk. She was confined to a wheel chair and often in great pain; but she had a smile that could light up the room. That is uncommon and rare.
2. Excellent, extraordinary; like a rare sense of humor. What child isn’t extraordinary? Each one is wonderfully formed by our Maker and unique like snowflakes. In our family alone we have green eyes, brown eyes, curly hair, straight hair, a lefty, and one with dimples. Heck, we even have one that likes brussel sprouts and we all know how rare that is!
3. Thin in density; rarefied; like rare air. If something is thin in density it is likely light and ethereal…perhaps even enlightening. Catching a glimpse of the silver lining in a newborn’s diagnosis of a rare and possibly deadly disease is perhaps enlightening. That one has taken me several years to get to, but the silver lining is most certainly there and I now see it every morning when she comes downstairs and greets me with her still, sleepy green eyes.

4. Cooked a short time to retain all the juice and redness. This is my husband’s favorite because he enjoys a good steak that is nearly burnt on the outside but bloody rare in the middle. And some would surely say it’s not the years in your life that count, but the life in your years. So whether it’s a steak quickly seared to perfection or an abundantly lived life tragically cut short perhaps there is a feeling of gratitude when you’ve been blessed with something truly rare. There are rare gemstones, rare coins, and rare birds.

I think a true friend is rare. And especially true love. I once saw a double rainbow on a roadside in rural Indiana and that was rare. So I asked my daughter today what she thinks of when she hears the word rare.  “I think of wildflowers, bald eagles, seeing a grizzly bear and finding blue sea glass on the beach.” Maybe we don’t often find rare things because we’re just so accustomed to not really seeing them with our eyes. Maybe rare things are actually quite common after all and we need to see them more with our hearts. So next time you see something that looks like a duck, swims like a duck, and quacks like a duck, be sure to take another look and it just might be an American Coot which is not a duck at all. And quite rare at that. 

St. Anne Catholic Church
9091 Prairie Ridge Blvd.
Pleasant Prairie, WI 53158
(262) 942-8300 or (262) 331-0906

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