The IV Angel

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 wasn’t born with birth defects. She doesn’t have 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 profoundly ill.

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.

Who in your life could use a fighter-angel today?

This post is linked up with: Playdates with God, Grace Laced MondaysSoli Deo Gloria, Heart+Home Linkup, Friday Favorite Things, Faith-Filled Friday.

Photo Copyright Elizabeth May, 2012



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Comments

  1. What a beautifully gorgeous post… I know that seems odd to say when you are talking about a sick child and IVs but the way that you saw an angel in the IV tube is beautiful. The way you are standing by your daughter’s side and being strong for her is beautiful. The way that you continue to uphold your faith, even in these tough moments, is beautiful. You’re an inspiration Elizabeth. I also hope that your daughter is able to move past this illness easily and effortlessly. xo

  2. Beth, your friend Erin said it perfectly. You are standing in your faith, standing for Julianne, standing for calm and peace, coming out counting your blessings, stronger and closer to God. You are giving your girls an example they will remember all their lives. Keeping you in prayer and thankful that we know such a good family:) If you need anything let us know!

    • Beth: You are so kind. I feel I don’t deserve the praise you give! I am just trying to take things a day at a time and be aware of God’s plans for me in all this. Mostly this seems to involve giving over my worry and pain to Him; this is getting easier a month out now, from the diagnosis.
      seasonswithsoul recently posted..Apple Cider Cranberry SmoothiesMy Profile

  3. Beautifully written Beth. We are keeping Jules in our prayers…

  4. Lutrincy Clough :

    Tears are running down my cheeks. Not only for you and Jules and your journey, but also realizing that I need to think about the purpose of my life as a special needs nurse the past 5 years. The prayer, the singing, the rocking of the children that became my own in my heart. Nursing has never been just a job for me. It’s been a ministry in my heart. Reading your post is tapping into that place in my heart and giving meaning again to why I do what I do. Love and prayers to you, Jules, and all of your family this week at Thanksgiving. This year, Thanksgiving is bigger than Christmas for me. Thanksgiving for our health. For our children’s health. For my neice, Graycen’s health and the miracle that she is. I will be reflecting on the miracles and blessings that God has shown me in my patients and their families over the past 5 years. Thank you for sharing your heart. God is a God of miracles. He will carry Jules through and use this diagnosis and journey to bind your marriage and family into a deeper, stronger love. Love, Lou

    • Lou: Your nursing work is amazing–you are right that it most certainly is God’s ministry. I know that if you are able to keep doing it and it isn’t too draining emotionally, you will prove a giant blessing for all those whose lives you touch. And, even if you decide that nursing isn’t your future right now, God will find other wonderful ways to use you and your story. You have so much to share with this world. Love you!
      seasonswithsoul recently posted..Apple Cider Cranberry SmoothiesMy Profile

  5. Tears are streaming as I write this – I will be praying for you and your little one. It brought back many memories for me – when my youngest was 1 they thought she had hydrocephalus so we had to go through MRI’s and tons of testing. It was so hard to watch her tiny body lay in those big beds. The uncertainty. Praying for your strength and your daughter’s. Praying you will feel God’s arms around both of you – and the peace that comes with knowing He is in complete control. She is his child too and He loves her more than you or I could ever imagine.
    Stephanie recently posted..Thanksgiving Breakfast – Fresh Pear KuchenMy Profile

  6. I love how you saw an angel in the IV — what amazing perspective you are carrying with you. Praying that you and your daughter FEEL His presence at each step in this journey. Thank you so much for sharing at SDG.
    Jen Ferguson recently posted..Remembering: When Ziploc Bags FailMy Profile

  7. Oh wow – you’ve taken my breath away. An IV angel, indeed. Praying for you and your daughter, and that you feel angels all around.
    Courtney recently posted..Paying AttentionMy Profile

  8. Oh this is so tenderfully written. Praying for you and your family. Imagining you just down the road. And all the emotions you are holding. Thank you for sharing this and your journey into it.

  9. Oh, friend, I think you have a lot of fighter angels standing with you. Praying for you and your sweet girl. Sending so much love.

  10. “When you’re fighting a disease, you don’t want a gentle battle; you want to eradicate, annihilate.” I pray with a group of moms who are fighting diseases in their adult children, only it’s their souls that are sick, not their bodies. Through our prayers, we fight this sin disease, and yes, we, too, don’t want a gentle battle. May we all win our separate battles together for the glory of God.

    I visited your blog for the first time from Be Not Weary, and I’m so glad I did. Blessings to you and Julianne.
    Lori recently posted..Have we forgotten God?My Profile

  11. God’s word will faithfully guide, comfort, and direct your heart as your family goes through this journey. Thank you for sharing your story at GraceLadce Mondays.

  12. I jumped over here from the link in your post today on Facebook. Praying for your sweet girl — that God’s healing hand will touch her, that He will help her (and mommy) to be brave, and that he will surround her with many fighting angels. Hugs
    Lyli@3dLessons4Life recently posted..Lessons Learned in 3D — Looking InsideMy Profile

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