Unfinished Stories :: The IV Angel

She kneels by my daughter’s bed. A friendly young woman. I appreciate that she’s dressed in black slacks and a ruffled, flowered top, instead of scrubs, and that she has braids coiled around her head. She earnestly continues her explanation.

“It’s just like a tiny straw–want me to get one to show you?” A couple of minutes later, she reenters our hospital room and rips open a couple of packages that show what the IV looks like. She places a tiny yellow piece upright on her palm.

“Now, what do you think that looks like?” she asks. You can tell she thinks the answer is pretty obvious. Julianne is at a loss, though. Ever the teacher-pleasing pupil, I say: “I know. An angel.”

She’s surprised. Most people say a rocket ship or an airplane. “I’ve never heard ‘angel’ before,” she says. I’m shocked.That’s clearly what it is. I can’t see it as anything else.

And, I can see it as everything else.

Just two short weeks ago we had headed to the pediatrician for some knee pain. As we talked to our doctor, and she asked questions, more observations cropped up. Yes, she does have trouble sitting down and getting up from the floor. Yes, the circles under her eyes have looked more pronounced lately. Yes, she has seemed exhausted, going to bed at 8 p.m. and getting up at 7:30 a.m., still crying that she’s tired. Yes, she didn’t really like to swim much or be in the sun this summer. Blood work and a knee X-ray are ordered; we go two days later, the last appointment of the day at the lab, because we didn’t want to miss much of the school day. I get a phone call the next morning.

You don’t want to get a phone call the next morning.

Inflammatory and muscle markers show up in the blood; we’re off to see a rheumatologist at Children’s Hospital within the week.

*  *  *

He introduces himself to my husband and I first; we shake hands all around. Then, he sits down and rolls over to Jules. “How are you feeling?” He talks to her and she shyly responds, downplaying her symptoms. We interject, clarify.

We’ve done our homework. Autoimmune diseases run in our family–with current cases in my immediate family and my husband’s. We’ve talked to my mom and sister-in-law. We’re all thinking something like Juvenile Rheumatoid Arthritis. We know kids who’ve had it. It’s not that unusual.

So, after the exam, when the kind rheumatologist, in his quiet, intense way, tells us our seven-your-old daughter has a rare autoimmune disease (only 2 -3 cases per million), I don’t think we really process it at first. But, here we are, just four days later, having hardly digested the quick diagnosis, settling in for a two-night hospital stay. We are those parents, the ones with a chronically ill child?  I refuse to believe it.

We are not those parents. We are lucky. Our child could have been born with birth defects. She could have been diagnosed with cancer. There are so many scenarios that could be worse. {And, of course, there are many scenarios that could be better too, like our daughter’s perfect health before her immune system decided to turn on her.} Yet, I don’t feel like I’m allowed to be sad, when I see the toddler walking around attached to an IV pole, or the child a few rooms down who looks so profoundly ill she can’t lift her head.

Juvenile Dermatomyositis, or JDM, while rare, is generally quite treatable. Yes, we have to come to the hospital once a month for the next six months. Yes, my daughter has to be poked and prodded and have massive doses of steroids intravenously injected into her tiny body–a body that has never looked as small as it did last night as I followed her down the hall for her MRI, staring at her blonde bob and red tee and her swimming in those too-large, panda-printed hospital pants.

I focus on being mom, stoic and practical as she cries and cries when the first IV goes in and they proceed to take nine tubes of blood out for testing. “Nine tubes is a lot for a little girl,” the RN concedes. I’m mom again, when we decide to try to attempt a shower in the morning and they glove her hand with the IV in and tape it tight and still somehow it comes loose and blood spills as the IV falls out of place. I push the call button. When no one comes, I head out to the nurse’s station and grab the first person I can find. I wipe up the drops of blood on the floor before they can even get to them.

“It’s a mom thing,” I apologize when they come in to clean up.

* * *

As we get ready to leave the hospital, our doctor comes by to plan our next visit. We determine that exactly one month from this, our discharge date, is Thanksgiving, so we opt for a Monday/Tuesday stay, in hopes Julianne will be able to rest Wednesday and enjoy the holiday.

So, today is that Monday.

In preparation for our next run-in with the IV angel, I’m searching out angels in the Bible. Because angels are beautiful, yes? They’re glowing and lovely. They’re drawn in white and gold and rendered in silver and crystal. They’re the subject of poem-plaques and sentimental figurines. They bring great news, such as tidings of great joy to shepherds on a hillside. Right?

I’m hunting down angel beauty on BibleGateway and I’m seeing grit and flames and flashing swords and destruction. Yes, there are many angels who act as God-messengers. But there are a lot of fighter-angels. Angels you don’t want to cross. Angels carrying out God’s orders, often to the death. And, strangely enough, I like that. When you’re fighting a disease, you don’t want a gentle battle; you want to eradicate, annihilate.

I like thinking of the IV angel as one of the Bible’s fighter-angels. An angel that’s going to do the tough job. Sword flashing, hard fighting, on a mission.

 

Update: 

It’s been six months since I wrote the post above. We “missed” our hospital appointment last month. Julianne and I smiled as we walked into Children’s in mid-May; we weren’t rolling suitcases in.

Both her blood work and the physical exam came back good.

So we take the mouthful medicines still — methotrexate and prednisone. {Try saying those ten times fast.} We slather on sunscreen and buy pricey UPF-50+clothing online, because Jules’ medication is phototoxic {can cause sun sensitivity}, and her autoimmune disease will flare if she gets too much sun.

We already see this when, after her first day spent in hot summer sun, she is wrecked the next morning, crying and exhausted. I immediately panic into visions of relapse and hospital stays.

The simple truth is this: We don’t know what the coming months, or years, will bring. And, I’ll be honest — I’m the worst candidate for uncertainty; it can undo me. But, I have to come to terms with the fact that our story and our daughter’s remain largely unfinished.

Yes, we ache to pen in our neat, happy endings, but God gently reminds us that He’s the one who holds our stories — not us.

 

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