I took her to emergency. It was scary. What is wrong with my baby? (she was 4 but they are always your baby)
I was informed that they were going to run a lot of tests. The last one would be meningitis, which required a spinal tap.
I was 24. Honestly, I didn’t really know what meningitis was, but it sure did sound scary, and I knew well enough that it wasn’t good if they had to do a spinal tap.
So after many tests (not the spinal tap) they decided to keep us over night… and so we stayed.
At some point in the morning, with Phyllis on my lap, in the same clothes I came to the hospital in, on a Sunday morning, a doctor with a blue shirt on under his lab coat, bushy brown hair, and a full mustache came in.
Well, they had answers… and I remember thinking while sitting on that hospital bed, please don’t let it be more tests for meningitis.
Juvenile Rheumatoid Arthritis (JRA)
I didn’t even know what that really meant, but I knew one thing. It wasn’t good.
That beautiful little girl in a hospital gown (well two of them, one covering the front, one covering the back) sat between my legs and colored, oblivious to what was going on behind her. Me, crying, tears streaming down my face. We stayed in the hospital a couple more days.
A lot has happened over the years. I actually interviewed for a book about parents who have children with an illness. I don’t think that was a coincidence.
I could tell you story after story.
Like how my daughter was in a wheelchair time.
How people would stare at her at age 8 in her stroller because she really couldn't walk. I told her she could stick her tongue out at them.
How she loved to play t-ball and softball so the teams would let her bat and someone else would run for her.
Her legs looked like toothpicks with softballs for knees.
How I almost got protective services called because i missed an appointment at the doctor because I had to work.
Her body was always fighting itself she she kicked off heat like a fire.
How so many people loved and supported us. And prayed for us.
I got picked to be in the pilot parent program.
How stupid people are when they say "she's too young to have arthritis" and how I'd answer "well call her doctor because they've got the wrong diagnosis"
Or how she didn’t grow and it seemed the only time she did, it was when I sent out prayer requests.
Or how she was a human weathervane. Anyone who says people with arthritis can’t tell the weather, is a kook.
Or how about with every limp, I would sometimes whisper to God (and sometimes scream) – “enough”
That I begged Him, give me her pain, her disease. I’ll take it. All of it.
Today, as I reflect on it all, I can only come to one conclusion.
God was always there. He is faithful.
In that hospital room, when I was scared out of my mind.
He was there, my comforter.
When the prescriptions cost $350/month and it made no sense that we could afford it after bills were paid.
He was there, our provider
When I had to give her shots. And didn’t feel equipped or qualified.
He was there, my strength, her courage.
When the new medicine cost $1200/box and she needed two boxes and I didn’t know if I should give it to her, and wasn’t sure if the insurance would cover it…
He was there in that coffee room as I stood there crying not knowing what to do, as I put the preapproval form on the fax machine and prayed.
He was there.
When I got the letter of her remission on the day she left for Colombia.
He was there. Her Healer.
And now as we face new challenges of Osteoarthritis…
He is still here.
Never leaving our sides. Bringing us comfort, provision, healing.
I believe that she will again be healed from arthritis. I believe it with all my heart.
He is our healer.
He is good.
He is here.