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.
The post In Sickness and In Health, Part Two appeared first on Seasons with Soul.