In Sickness And In Health, Part One

In Sickness And In Health, Part One

Some of you long-term readers might recall my IV Angel post from November 2012, soon after our daughter was diagnosed with a rare autoimmune disease, juvenile dermatomyositis {JDM}. I’ve been nearly silent on the topic since then, but with a recent relapse, there’s been not much else on my mind over the past few weeks. So, I thought I’d share more details about our experience over the next few days.

My husband, daughter, and I sit in the Dog suite one afternoon, about 18 months ago. We rode up here on the Grape elevator. At the far end of the floor, I spot an elaborate aquarium setup. Down here, our conversation is punctuated by train whistles as nearby kids press buttons to operate the model railroad.

We have no idea what we’re in for.

Less than two weeks ago, I call our pediatrician, honestly thinking our conversation will end in some reassuring “let’s-wait-and-see” rhetoric. But, instead, we schedule a checkup, and then some bloodwork — and an x-ray thrown in for good measure. We go to the lab late in the day, minutes before it closes, because we wouldn’t want to miss any school.

The doctor calls the next morning.

She tells me significant inflammation markers appeared in my 7-1/2-year-old daughter’s blood. She has already talked to a rheumatologist at Children’s Hospital. They want us to come in. This week. {I was under the impression that scoring an appointment with a Children’s specialist took months, so I figure either this department is good, or our situation is bad.}

I take the first appointment I can get, but my husband has other thoughts. Turns out his friend has a recommendation, the department’s clinical director. {I just know it’s going to take longer to get in with him, and he looks rather severe in the head shot I find online.} But the friend calls; actually, he’s my friend too, and he makes an impressive case for this doctor, who’s helped his family weather a severe, early case of JRA that his son, mercifully, seems to have just outgrown with the onset of puberty.

I don’t promise much, but say I’ll try. I find it will only push our appointment out two more days to get in with the highly touted Dr. K, so that’s what we do.

We sit in the cheerful, brightly colored waiting area of Children’s Hospital to be seen in Dog and then have Julianne’s blood drawn in Frog. When we first come in from the parking garage, walking down the entry hallway painted with abstract butterflies, I see those parents, the ones with stickers pasted on their chests, walking out with a bag or two, and a child wearing a bracelet.

Those poor people had to stay overnight, I think, and I try to imagine what trauma or illness has brought them to this. How hard that must be. I make sure I don’t look too closely into their eyes; I’m not ready to see their pain or imagine it might become mine.

Soon enough, our pager lights up, just like we’re waiting for a table at Applebee’s, and we go in for our appointment. A few vitals later, we’re settled into the exam room and Dr. K walks in. We stand, shake hands all around, and he smiles and does that little head bob, almost like a tiny bow, that we get to know so well. He is nothing like his picture.

* * *

This is our story. And, this is how we thought it was supposed to go. Having a child diagnosed with a rare autoimmune disease gives us an immediate, 7-month ticket to the inpatient floors of Children’s. We’ve been on all different units, from transplant to hematology/oncology to the adolescent unit. We’ve gotten to know the nurses on the IV team and the woman who works in admissions at four o’clock on Monday afternoons, when we typically arrive.

We get used to being those parents, wheeling in bags once a month, and putting those stickers on our chests to let the hospital staff  know we are allowed to be here. {We even get used to the looks from Children’s day-trippers when they see us wheeling in our bags for an overnight.} We know how to get on the elevators that take us to the inpatient floors vs. the office floors. We know how to order our meals in the room and that reciting Julianne’s birthdate becomes our ticket to pretty much any interaction we’ll have in the hospital.

We have the overnight hospital stay almost down to a science — what we’ll pack, what we’ll wear, when I’ll pick up Julianne from school, what books and devices we’ll bring to entertain ourselves, how we’ll shower and then nap the minute we get home the next day. We both learn {the hard way} to have our personal electronic devices loaded with a white noise app and equipped with headphones {because on those rare times when you do have a roommate, they always get settled in around 12:30 a.m. for some extended TV viewing}.

And, we get to be okay with that. That is the plan, and we know it. I write one post, when it is all still fresh, and then that’s pretty much the last you hear from me on the matter. Because I don’t know what else to share. I don’t want to complain. I don’t want to hash out every detail of our struggles. I don’t want JDM to define us.

But, about a year ago, we learn to stop being those parents. Our last scheduled hospital overnight takes place in April 2013. After all that intensive hospital care we are supposed to simply schedule an office visit in 4 weeks. I can’t even remember where the Grape elevators are anymore because we’ve been to the office once and the inpatient floors seven times.

Every appointment goes something like this: Julianne looks good; she feels good; let’s reduce her medication. And, so we do. Each time we push the appointments further out — 6 weeks, 8 weeks, 10. By Christmas, we receive the gift of taking Julianne entirely off the minuscule dose of oral steroids she’s been weaned to.

I get used to having been that parent. I think back sympathetically to the mom I had to be. It was hard on her, that Beth. Poor thing. But, she got through it; we all did. Thank God. I authoritatively and calmly tell Laura a few weeks ago — my roomie at the Refine retreat  — how well Jules is doing now, how everything is going perfectly according to plan.

And, then it isn’t.

I return home from that tender, precious weekend with God and my new soul sisters, and, as I tuck Julianne into bed, she says her muscles feel weak. She’s worried. I call rheumatology first thing the next morning. By our Wednesday afternoon appointment with Dr. K, Julianne’s symptoms have come back with a vengeance.

Join me Monday for more of the story?



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Comments

  1. Elizabeth,
    Nothing like the stories of a warrior woman and fierce mama. I am grateful God poured into you and your husband just what was necessary to ensure Julianne would be okay. I remember my husband’s hospitalization…one day we were in for an MD visit…hours later it felt like the cardiac until was where we’d always been and where we’d always beyond.
    Remember, we are the women who don’t believe in miracles; we are the women of God who rely upon them.
    Stand fast in faith sister, remembering that you are never alone.
    Hug all your babies and your beloved husband-you are together for a reason.
    Peace and good,
    Chelle
    Chelle recently posted..Sharing with my sister-I’m guest posting at SeeSpeakHearMamaMy Profile

    • It does feel like that… one day just in for a regular visit and then the next, settled in for a schedule of monthly overnights like we never left… but I am encouraged by all the support and love of my family, friends, and, most importantly, my God.

  2. Wow. So sorry that you are going through this again. Your blog is beautifully written and brings me right there with you and the struggles you are going through. You are a strong woman, and Julianne is going to be stronger watching how you (and your husband) help her fight this battle. I’m sorry that you are going through this. I wanted her to be healed, completely. I prayed for that miracle. We all did. God clearly has something else in mind and now it’s time to wait patiently for the healing to happen. Hang in there. Keep being strong. I’ll be praying.

    • We keep praying for that miracle, Cyndi, and you keep praying too. I am confident that though God’s timeline might look different from mine, healing will come. I like how you say Julianne is going to be stronger for this. We just had a nice conversation today about Romans 5, I think it is, where Paul talks how struggling = perseverance and perseverance = character and character = hope.

  3. Wow, Elizabeth–what a testament to your family’s strength and faith. I pray God covers you all and keep your spirits strong during this season. I pray for good health for your daughter and for wisdom and insight for the medical team. Stay encouraged!
    Kacey recently posted..Thank You!My Profile

  4. Nothing is lost with God. He purposes everything and this is one of these moments. As much as He may seem so far away, I assure you that He isn’t. There’s nothing you need to do to make Him be any closer. You can trust Him in spite of the fear. You can trust these are the glory days, even though they’re gritty and grungy looking. There’s beauty to be beholden. I pray you hold your cup and abide here, in the pursuit of hope, long enough to see the fingerprints of His presence in your everyday ordinary human life, as tumultuous as it may seem . . . may you see bold, brilliant beauty cast across the stormy sky.

Trackbacks

  1. […] at the pond. Julianne is back at the house, in bed. She is feeling exhausted and weak — again. I tell everyone I’m walking back to check on […]

  2. […] in April, after my daughter’s first hospital stay in nearly a year. {She is going through a relapse of her autoimmune disease, Juvenile […]

  3. […] we sign up, and I try not to worry too much over the heat and exertion for my 9-year-old, whose autoimmune disease worsens in the sun. I write lots of cautionary and explanatory notes on the registration form, and I […]

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