The month of April brought a new gait. Stiff as a stick, three-year-old Beth's left leg hobbled along, never bending until the afternoon. Part of her winter and spring arthritis flare in the diseased knees, I supposed.
Praise God, her functioning improved throughout May and June, allowing me to forget the new gait.
Until Friday, that is. Cuddling on the couch with her, I kissed her feet and told her "this little piggy" stories. She giggled and I froze.
Her diagnosis is Juvenile Idiopathic Arthritis (JIA), more commonly referred to as Juvenile Rheumatoid Arthritis (JRA). Her subclass diagnosis is oligoarticular JIA, indicating disease in four or fewer joints--by far the most common subclass, associated with the best outcomes. This subclass is given to patients who present with four or fewer joints in the first six months of disease. Patients who go on to add more joints, surpassing four, are put into another subclass called "extended oligoarticular JIA", a class which essentially behaves the same as polyarticular JIA, associated with poorer outcomes.
As I kissed those feet, I noticed something. A swollen left ankle, the joint warm to the touch--barely detectable due to her tiny bones. Was it merely a swollen mosquito bite, I wondered with hope?
But no, I could find no entry point for a bite.
It's the JIA, an auto-immune disease in which the body attacks its own joint cells. Her ankle joint succumbed and I hadn't even noticed. Her new gait back in April? The result of ankle pain, not knee pain.
It hit me.
We're prisoners of this disease. Prisoners of a vague prognosis...only time reveals the truth. Over 50% of oligoarticular patients grow out of the joint problems before puberty or in the mid-teen years. But 40% continue to have problems in adulthood, including joint damage, pain, and prolonged use of dangerous drugs. The eye inflammation is often more persistent than the joint problems, persisting into adulthood after the joints return to normal, making it harder to completely avoid profound vision loss, along with cataracts and glaucoma from too much steroid eye-drop use.
My pediatrician recently told me of one of his other patients, also diagnosed with Beth's condition. A five-year-old patient who needed the steroid eye drops for six straight months. She already has cataracts. Beth's needed the drops twice--once for a month in both eyes, and once for two weeks in one eye.
Will she ever need them for six straight months? Can I gather enough Believers in prayer? Will more voices and hearts change things for Beth?
She's up to three joints. Will she get past four? I'd stopped looking for new swelling at the sixth month mark (Feb.), so convinced was I that her two knees would be the end.
My ankle discovery sent me into a tailspin of worry and fright, though I'm thankful she's experiencing these two good months, with lower swelling overall and improved function.
Will she be one of the chosen ones? Hitting remission and experiencing a miraculous end to eye inflammation early in life?
Would God spare her?
How do we live as prisoners to a disease,
never knowing what the next day, the next year, brings?
After I notice it that day, the hours? They're
heavy. I grieve through the laundry, dishes, and face wipings. Though I try to put it at His feet, the what-ifs control me for a time. Will she have trouble conceiving someday after all these medicines...especially the immuno-suppressants? Will she
ever walk right? Will she be left with a deformity? Will she raise her children whilst living in daily pain?
And then I realize it.
We are all one in this blindness, for no one knows their tomorrows and would we even
want to know?
When tomorrow isn't yours
how do you live the minutes and hours in today?
Should we take them as a gift...as if they're our last? If our eyes don't see another dawn...if tomorrow won't be pain-free...then today?
It's that much more precious. With a gift before us
what do we do? W
e give thanks. We
live thanks. Thanks-living is hunting for beauty in today, as though we're looking for our lost spectacles in the clutter.
So we can see. Naming the beautiful hidden in the mundane and knowing from Whom it came, we lift up our hands in worship.
Thanks-living is really God worship...for we don't only worship with our songs, our Bibles, our prayers. Gratitude is worship too. The more we give thanks?
The more He fills our cups to overflowing.
So we live not as captives to a disease. Not as captives of Adam's and Eve's legacy.
We live as receivers of grace. Giving thanks? It's receiving Him.
None is more impoverished than the one who has no gratitude.
Gratitude is a currency that we can mint for ourselves,
and spend without fear of bankruptcy.
- Fred De Witt Van Amburgh
Gratitude unlocks the fullness of life.
It turns what we have into enough, and more.
It turns denial into acceptance,
chaos to order, confusion to clarity.
It can turn a meal into a feast,
a house into a home, a stranger into a friend.
Gratitude makes sense of our past,
brings peace for today,
and creates a vision for tomorrow.
- Melody Beattie
“Thanksgiving creates abundance; and the miracle of multiplying happens when I give thanks–take the just one loaf, say it is enough, and give thanks–and He miraculously makes it more than enough.”
Dear Lord, thank you for these graces...
~ A day at the zoo courtesy of Children's Hospital and the rheumatology department.
~ Hearing a nutritionist speak about inflammation.
~ Eating strawberry shortcake as a family while giggling over Chitty Chitty Bang Bang the movie. Vastly different than the book but still delightful...a steal at the thrift store for only $1.
~ My daughters and I oohing over the beautiful hats worn by the female lead.
~ Daddy and Paul playing Chinese Checkers and Paul blossoming with the individual attention.
~ Peter doing much better on his lower dose of medicine.
~ Cuddles in the big bed...all six of us.
~ A husband who enjoys my legs though six pregnancies left them varicosed and ugly. What a gift that he sees through the damage of genes, not holding it against me.
~ Learning that chronic leukemia only rarely affects children and that acute childhood leukemia (ALL is the most common--Acute lymphoblastic leukemia) is fast growing, so Beth would be getting weaker fast, not growing stronger by the day. I still don't have test results but I have more hope. And ALL survival rates are 95% to 98%. Given the high white blood cell count, her doctor has considered this diagnosis in addition to her JIA, but considers it unlikely given the normal platelet count and the absence of anemia. I had opportunity to speak with her about it in greater length at the zoo. I wish I could say my mind has stopped wondering, but it's hard, especially after learning that oral prednisone would raise white blood cell counts for only about 10 days...not two months. I'm trying hard to keep my hands open to what God has, and to live what I've written here.
~ Peter saying about The Lion, The Witch, and the Wardrobe: "I can't believe how exciting it is, Mommy! It's the best book I've ever read." He's done with book 2 and moving on to book 3. I should have handed it to him much sooner but I figured the witch would be a problem with his OCD (the religious distortion component--he battles an OCD voice telling him he will forsake God and go to the dark side, be it evolution theory, witchcraft, etc. ). He tells me because it was written by a Christian author (C.S. Lewis), he's okay with the witch. Anyhow, his excitement is a gift.
~ Paul reading and loving the Dr. Dolittle books I read to them a year a half ago.
This one is not all....
1) The Story of Doctor Dolittle (1920)
2) Doctor Dolittle's Post Office -- (1923)
3) Doctor Dolittle's Circus -- (1924)
4) Doctor Dolittle's Caravan -- (1926)
5) The Voyages of Doctor Dolittle (1922)
6) Doctor Dolittle's Zoo -- (1925)
7) Doctor Dolittle's Garden -- (1927)
8) Doctor Dolittle in the Moon -- (1928)
9) Doctor Dolittle's Return -- (1933)
10) Doctor Dolittle and the Secret Lake -- (1948)
~ All four children excited about the summer reading program at the library. Every three hours of reading they get to visit the treasure box. The trinkets there? Junk to me but treasure indeed to them.
~ Peter excited about the tween photo contest at the library. He's looking to capture beauty and I love it.
~ Watercolor fish paintings and Paul's love for art. He encourages the others.
~ Bunnies and baby squirrels in the backyard.
What are you thankful for today?
and other grateful ladies today.