Beauty in the Breaking

We roll our bags down the entry hallway of Children’s Hospital, past a colorful abstract butterfly mural. We’re here for a scheduled overnight—no rushed admission, no immediate accident or illness, no heart-thumping clutch of fear. We deal in the long and slow, in measured stretches of medication carefully calibrated—dripped in by IV monthly, spooned in by dropper-full twice daily, cut in half and swallowed in applesauce Monday through Thursday, and injected on Friday.

We’re not the family in the waiting room rocking a wailing baby, pacing, talking on the phone in tears. We’re not the stoic mom holding the tiny four-year-old boy with half a shaved head.

We’re the ones with the kid who looks just fine. Julianne sits in the waiting room with headphones on, reading her book serenely. While stress ebbs and flows around her, she appears untouched.

We’re the ones with the girl who’s proud she can pronounce the ten-syllable mouthful Ju-ven-ile Der-ma-to-my-o-si-tis (JDM) correctly when she’s first diagnosed two years ago at 7 1/2. We’re the ones with the statistical anomaly: one of only two to three kids per million get JDM, an inflammatory disease of the skin, muscle, and blood vessels. (And we wonder why we can’t beat these odds when it comes time for school raffles or radio-show call-ins or even a lotto ticket.)

Join me today for the rest of the story at The High Calling?

Hospital Day Rules

Hospital Day Rules

{Photo caption: Julianne’s angel collection, which always accompanies her on overnights.}

On the day a mom with a sick kid either goes to or comes home from the hospital, you should not expect reasonable from her. Imagine her as glass — thin, worn, delicate as bone china. A little tap could send her to pieces.

Husbands, the best thing you can offer her, if you’re there when she walks in the door, is the opportunity to immediately get a shower and take a nap. This is the usually the first step to helping her regain her sanity.

Even if she arises showered and apparently refreshed, she should not be expected to cook or clean {unless, of course, she wants to}.

In fact, if you’re able to do a something special — cut a few flowers from the garden and put them in a vase on the kitchen table, or make her a fresh cup of coffee, she will be more grateful than you can ever imagine. A simple gesture like this could make the difference between her feeling fractured or healed, appreciated or emptied out.

Today is not a normal day and she is a fragile but empty vase, waiting to be filled with kind words, love, and gentleness. Rub her feet, massage her shoulders; ask her how she’s doing.

She will be filled and healed by you and, in turn, she will be able to help heal you and get your family up and running again.

Friends, neighbors, family, church family: kind, supportive words are good; prayers are golden. Even if you’re not sure what to say, or feel your words are trite, you can’t go wrong with these:

  • “I’m so sorry you have to go through this.”
  • “How can I help?”
  • “I’ll be praying for you.”
  • Or, my favorite: “Let me bring you dinner.”

If you’re able to follow up your promise to pray with a quick texted or emailed prayer, or a call within a few days, she will feel warmed, comforted.

Food and company matter. Stop by to chat and drop off some muffins or a casserole. Don’t assume she’s too busy to talk; she’s probably exhausted her husband’s and mom’s patience on certain topics and could use a fresh ear. Take time to talk, or better yet, listen — really listen.

On the other hand, here are a few things you shouldn’t do:

  • By all means, ask questions, but don’t question her decisions or actions {this will feel like an attack}.
  • Don’t assume she’s got it all under control just because she appears outwardly calm.
  • Don’t assume that it gets easier on the third (or tenth) hospital stay, because it really doesn’t.
  • And, most importantly, don’t focus so much on her sick kid that you forget her.

***

I wrote these “rules” in April, after my daughter’s first hospital stay in nearly a year. {She is going through a relapse of her autoimmune disease, Juvenile Dermatomyositis.}

We just returned from our third hospital overnight this past Friday/Saturday. I picked Julianne up from school {her last day}, and we headed straight to Children’s. We learned there that our rheumatologist believes the best plan of treatment involves a total of six overnights. {I had been under the mistaken impression we were doing three, and had thought we might be done.}

So, while Julianne’s inflammation markers have come down to the normal range, and she seems to be slowly but surely feeling more like herself, we have to be careful to slowly wean her from steroids and not withdraw treatment too quickly {and cause a relapse of the relapse}. That said, this post is not as belated as I thought, since we are only halfway through this intense phase of treatment and will be having at least three more hospital stays.

We have been blessed by the generosity and kindness of those around us over the past few months. Here are some of the bright spots in our lives since April:

  • My friend and yoga instructor Kate dropped off a book on the anti-inflammatory diet and gave Julianne and I a private yoga session, focusing on gentle moves to help her relax and to support immune health.
  • My friend Beth brought over a meal the same day she heard about Jules’ relapse. And she remains my go-to text friend who always responds with just the right words to encourage, empathize with, and support me.
  • My mom and her church family pray over us and for us, without ceasing.
  • My in-laws are always there to watch my other kids on hospital days.
  • My friend Alison made us a home-cooked meal and kept us company in the early days of Julianne’s relapse — the company was especially welcome since my husband travels so frequently and was gone that week.
  • Fellow blogger and online friend Laura and I have connected more deeply recently {though we knew each other before}, when we realized both our daughters have major health struggles. And, Laura’s daughter has become Julianne’s pen pal. The two girls have exchanged letters, little gifts, and encouragement.
  • Carol, one of the women at the Refine retreat I attended immediately before Jules’ relapse, messages me daily, checking in on both me and Julianne. She provides care, concern, prayer, and welcome doses of humour. {I am spelling humour with the “u” for her because she’s Canadian 😉 }
  • My sister and her daughters sent an awesome care package to their cousin Julianne.
  • My tribe over at godsizeddreams.com also mailed an unexpected, goodie-filled package for both Jules and I just last week.
In Sickness and In Health, Part Two

In Sickness and In Health, Part Two

I worry about our rheumatologist.

He regularly returns calls at 7 or 8 p.m. He always visits Julianne when we come in for a hospital overnight. Sometimes we’ll see him as late as 9 in the evening, and then again, at 8 a.m. the next morning. I haven’t noticed a wedding band, so I’m not sure if he has a wife or kids waiting at home. Perhaps not. I’m guessing it would be hard for a family to be on the personal side of Dr. K. But, being on the patient side — well, it’s pretty fabulous.

A slim, neat man with light hair, thin-rimmed glasses, and a slight German accent, Dr. K is a gentleman – his manners are impeccable, and he exudes a quiet calm and a special gentleness.

The first time we meet him, he immediately gravitates to Julianne, getting down on her level, literally, talking to her with great kindness and concern. He says: I know you feel bad, and I know you’re probably worried, but we know what’s going on and we’re going to get you feeling better again.

When I call him with a medical question during the early days of Jules’ diagnosis, he asks me: How are you doing? This must be hard for you. I don’t know about you, but I don’t think I have ever had a medical doctor ask about my emotional state before. And, he’s not just making small talk; he actually wants to hear your answer, and will engage with you if you bring up areas where you or your child are struggling.

He never rushes a conversation; never makes you feel foolish; never hints you are imposing upon him. Rather, Dr. K possesses the remarkable capacity to make parents feel like they are doing a good job and, at the same time, inspires in us a quiet peace that he is on our side and won’t rest until he gets our child feeling well again.

I was reading Seth Godin’s “The Icarus Deception” when Julianne was newly diagnosed. I recall telling my husband with great excitement, “Dr. K is an artist!” {I admit I got a strange look.}

I had read this: “Art is the act of a human being doing generous work, creating something for the first time, touching another person.” Godin goes on to talk about how connecting, taking risks, doing something differently – these are all hallmarks of an artist. He shares examples of this kind of artist, and none of them are painters or composers or novelists – rather, they’re professionals in a variety of careers, including those not typically considered creative fields.

Dr. K’s blend of genuine kindness and concern married with his medical expertise and his crazy, all-hours availability confer upon him a new title. I think I’m going to call the Children’s Hospital public relations department. First, I’ll recommend a new, smiling photo that captures the real Dr. K. Then, I’ll tell them his title has changed: Rheumatologist. Artist. Hero.

***

The experts say that growth often isn’t charted vertically, but looks more like a series of peaks and valleys that have an upward trend. I don’t know where Julianne’s setback puts her on the chart of her health; I like to think it’s a valley {but not as deep as at the beginning when she couldn’t even get in and out of the car without trouble}, but part of a course of this disease that will trend upward to the full restoration of her health, to remission.

But, I don’t know. And, friends, not knowing is hard.

But, I do know that this time around, I’m ready to reach out more. Instead of filing JDM away as something to be gotten around or over, I’m going through it with Julianne. I’m ready to talk to others who are experiencing something like this with a child. I’ve finally taken Dr. K up on his offer to connect us with others in the Pittsburgh area who have a child with JDM.

Instead of letting the teacher explain to Julianne’s third-grade class what’s going on {like her teacher did last year}, I go in, and she and I talk about JDM and let the kids ask us questions. We tell the kids that Jules feels exhausted and weak right now and doesn’t feel up to gym or the monkey bars some days. We tell them she has to take an oral medicine daily and get a shot once a week from “Nurse Daddy.” {I’m so grateful my husband has taken the lead on the whole injection thing, which is new to us. And, no, Daddy is not, in fact, a nurse.}We also explain that she’ll have to go into the hospital overnight at least two more times {like she did when she first got sick} for IV infusions of medicines that the doctor hopes will get her feeling better. Soon, we hope. Because the daily ups and downs are wearing me thin.

I talk to the school counselor about ways to help Julianne not feel left out at outdoor recess when everyone else is running and jumping and swinging. Already some girls are doing art with her at little tables in the shade, instead of playing tag like they usually do. Most kids are just curious and really want to help, says the counselor, and I think she’s right. She also tells me about a plan I’ve never heard of called a 504, which is a legal document that helps kids with physical or mental impairments, ensuring they get the help and accommodations they might need. We’re going to look into it.

I’m ready to share our story, in the hopes that it might help others. I’m ready to say that it’s hard, and I’m not always okay with this. I’m ready to stop minimizing our situation in light of other kids with more severe illnesses. Yes, Julianne could have a disease with a worse prognosis, but she could have an illness with a better one too. Or, she could simply not be sick at all. While I am grateful for the blessings we’ve been given {even in the face of trials} acting like this is all nothing is a lie I am finished telling.

I’m ready now to help others, and to allow myself to be helped.

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?