Much of my life I spend on the tips of my toes, like a boxer dancing nimbly around the opposition in the ring. I'm often hit, but I roll away from the punch, recover quickly and begin a counterattack. I know hardships are a part of life. I know they can be a blessing from God. I pray. I trust. I persevere. Usually, before long, the bell rings, and I gratefully return to the stool waiting in the corner. Someone rubs my back and squirts water in my mouth and speaks just the words of encouragement I need. When the next round begins I'm refreshed, ready to throw some punches of my own. The crowd cheers as I lift my hands. I am strong.
But this week I lifted my hands a bit too soon. Three job interviews passed successfully and I could feel the relief of a burden that had been pounding away at us for over a year. As I turned to the crowd I heard them gasp, instead of cheer, and then the pummeling began. Matt's application and interview rejections followed--two powerful blows to an already sore spot that left me staggering. We need income; we need a home; and I am backed into the corner of the ring.
Then all four children tested positive for the celiac gene, with Hannah joining Naomi in full-blown disease state and both carrying two copies of the celiac gene. This is something quite rare and is sometimes termed "super celiac." This means both Matt and I carry the celiac gene and it's very likely that Matt carries two copies and is a super celiac himself. This puts him at very high risk of many celiac complications including a virtually untreatable intestinal cancer, since he has gone many years on a gluten containing diet--a knock to the midsection that left me gasping.
Last night, looking further into other autoimmune disorders that can be associated with celiac, another blow hit. Suddenly I remembered Naomi complaining daily that her ankles and knees hurt. She was born with club feet, so I took her to the orthopedic doctor and he fitted her with orthopedic inserts. That seemed to help some, but the complaints continued. Saturday August 21st (see the blog entry "Petri Dish") Naomi suddenly complained, "Mommy, my ankles hurt, my knees hurt, and my elbows, and my wrists, and my fingers, and my neck...everything hurts." I was a little alarmed by this, because Naomi has a bent for precision and not exaggeration. However, after investigating further and finding that she had a sore throat and a spiking fever I figured that she must be trying to describe body aches that accompany a virus with fever. The next day she was completely fine, except a little more tired, and nobody else caught the fever. I thought little of the whole incident.
Two weeks later, on a Saturday evening this scenario repeated itself almost exactly. About dinner time all of Naomi's joints suddenly hurt, she spiked a fever, went to bed early, and was fine the next day. No one else caught the fever. This raised my concern some, but I figured that she must just be catching a lot of viruses, as is typical at the beginning of a school year. Last night, as I read about juvenile rheumatoid arthritis, I was stunned to realize that Naomi's symptoms match almost exactly. The only thing that doesn't match is that I've never noticed a rash that is usually present with systemic flare-ups. Her joints hurt everyday, especially in the morning. When I surveyed her this morning she said her ankles, knees, elbows, wrists, and fingers hurt--only her shoulders, hips, and toes felt fine. She's been complaining about this for months and I've paid little attention, writing it off as growing pains or repercussions of her club feet. I haven't rewarded her complaints in any way, yet she persists. Suddenly I realized that I should pay attention.
Juvenile rheumatoid arthritis is an autoimmune disorder that is sometimes present in children with celiac disease, it can range from mild and transitory to severe and crippling. It should be treated with anti-inflammatory medications to reduce swelling and limit joint damage, but Naomi cannot take many anti-inflammatory meds because of her already impaired kidney function. The child who already has more diagnoses than I can remember will need to undergo multiple tests to investigate yet another possible diagnosis. Now my head is spinning, I'm gasping, I raise my gloved hands over my head and cower, but I feel the blows continue. I'm waiting for the bell to ring--just surviving 'till the end of the round. I am weak. Surely there's a respite coming.
Last night the bell sounded as I sang with my three girls one of my favorite Psalms (from The Book of Psalms for Worship, Crown and Covenant 2009). It's Psalm 77A, based on Psalm 77:1-10 and set to the Hymn Tune "He Leadeth Me."
My voice to God aloud I plead
My voice to God, he will me heed
I sought the Lord, I was distressed
I gave my out-stretched hands no rest
My restless soul all through the night
No comfort found in coming light
With thoughts of God my fears arise
My failing spirit faints with sighs
You do not let my eyelids close
I am made speechless by my woes
The days of old I think upon
The years that long ago have gone
I ponder songs I sang at night
My heart and spirit search for light
Forever will the Lord reject?
Can I his favor not expect?
Forever has his kindness ceased
And is he from his word released?
Did God forget to show his grace?
Does wrath his mercy now replace?
Then I replied such questions show
That I my weakness need to know
The Most High has a firm right hand
That through the years shall changeless stand
As my pastor's wife counseled me this week, I can be strengthened by the fact that I have not yet sunk to despair. I still trust--this in itself is evidence of God's sustaining grace in my life. And so I face another day. I collect my thoughts. I call the doctor, again. I ask for more tests, again. I plan child care for the biopsy this week. I collect gluten free recipes. I remember my blessings as I go, at least for another round.
"Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I lift up my soul." --Psalm 143:8