Finding October

Finding October

October — how you get away with anything!

You are equally charming with brilliant sun streaming through leaves of gold, as you are with brooding-grey-black skies and whipping winds. We’re happy to take you in shorts and tees, cherishing the year’s last hurrah of warmth. Or, if you choose — changeable you — to swirl in with chill rain or morning frost, we relish the chance to cocoon {for the first time since March} in jeans and sweaters, or with blankets in front of a freshly laid fire. Coffee, tea, and hot spiced cider, cupped in cool hands, with steam rising, on newly dark mornings — this is something to be savored!

golden leavesYour burgundy, hot-pink, red, salmon, orange, yellow, chestnut, russet raiment strewn over hillsides — and, later, ground — takes our breath away. Last year, we thought your leaf show was the best in a decade, but you’ve done it again, demonstrating our Maker’s artistry in show-stopping fashion.

You can even get away with breaking my heart. So far, you’ve brought me two deaths and a diagnosis. And, still I wait for your color-riotous days and dense velvet nights with anticipation

I am nearly convinced you are going to do it again. As the dog and I walk, my heart feels scraped raw, so tender any slight touch makes tears well.

basket of pumpkinsThe caller ID Friday night puts me on high alert even before I hear the familiar and kindly voice of our pediatric rheumatologist. Yes, we’d had blood drawn the day before to check key inflammation markers for my 10-year-old daughter with a rare autoimmune disease. Yes, she had been steroid-free for almost four months. Yes, she had relapsed last time steroids were withdrawn.

Two numbers come back high. Not alarmingly high, but they signal cause for concern. We schedule another blood draw for 8:30 Monday morning.

After I drop her at school late, I ache inside with uncertainty and worry. She seems tired. That ankle is still hurting. {Knee pain had started this whole thing three Octobers ago.}

She looks so pale. Isn’t she too skinny now that she’s dropped the steroid weight? {She was pale and skinny right before the relapse. It was so obvious from that one photo– we should have known something was going on.

And, that scrape on her knee– it looks like it’s getting infected, and if it does, that in and of itself could start a whole chain reaction and put her already compromised immune system on dreaded hyperdrive.

Yet, as I walk, October, you woo me with your colorful abundance. Even as I struggle to release my worries, I can’t help but be smitten by your vivid intensity.

handful of leavesYou remind me how life persists even in the face of death, how so often beauty and pain mingle.

You make me recall that carefree weekend at the farm last year, right before tragedy struck. On a woods ramble, I noticed an anomaly on a twisted honeysuckle vine — a fresh, nectar-ready blossom side by side with the red berry it should have already become — June on the same branch as October.

But, in a way, doesn’t it make sense? Isn’t October herself a dazzling final display of life before winter’s death? Aren’t the colors her leaves’ last slow, spectacular exhale before expiring?

***

I hear the smile in his voice even before he gives me the good news. Julianne’s numbers have come back into the normal range. It turns out that the same enzymes that mark muscle inflammation due to disease and damage can also be affected by intense physical activity {that old muscle breakdown inherent in building new, stronger muscle}.

If this is it, my reason for false alarm, so be it. If my daughter — who could barely get off the floor three years ago — can now dance now for two days in a row at a recent convention… If she can tap and dance hip hop and jazz, for six hours straight, so much that it raises her CPK, well, glory be.

And just like that, you flaming, fickle, fantastic month, you’ve launched in me a praise stronger than my past October hauntings could ever be.

Sharing the Story: Pitt Med Magazine

Sharing the Story: Pitt Med Magazine

This summer I reached out to an old friend of mine, the editor of the University of Pittsburgh’s acclaimed Medical School magazine, Pitt Med. We worked together at the University back when we were both young and childless, and did things like play ultimate frisbee on the Cathedral lawn over our lunch break and run the Pittsburgh Marathon Relay with a team of co-workers. {Erica even drove me around the city for my unofficial bachelorette.} Suffice it to say, we go back. Way back.

Erica has since moved to California; she has one son; I have two daughters and a son. She has been at the helm of Pitt Med since its inception, and I’ve been a freelance writer since my kids were born. I’ve done some fact-checking and proofing for her here and there, so it wasn’t a total shock when I emailed her this past summer to tell her what’s been going on with Julianne.

Could this be used in some way for the magazine? I asked.  I’m not sure if our personal experiences would be of interest to you? 

I went on to talk about our kind, soft-spoken doctor. At the very least, I thought, perhaps I could drum up some publicity for him;  the medical school connection was there — Dr. K being the fellowship program director for Children’s pediatric rheumatology program (and, thus, a med school professor).

Dr. Kietz is an excellent doctor, but what makes him truly special is his personality — his kindness, his whimsy, his genuine concern and care, I wrote. If he can impart even a bit of his unique patient care approach to his fellows, he will be doing the next generation of pediatric rheumatologists a huge favor.Erica wrote back to let me know she wanted to pursue the piece as a personal experience essay. I wrote it over the summer, took photos at our inpatient visit in August, and, as it goes with all things magazine — after revisions, approvals, layout and design, fact-checking, and proofreading {or, four months later} — it was published.

I’d be honored if you stopped over at Pitt Med to read “A Doctor With ‘High Touch.’ “

 

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.