Ebenezer,  facing grief

New worlds…




I remember staring off in middle space on warm afternoons, chin in hands on a high school bleacher. My friends scrambled for the football below, thick with sweat, working towards unseen goals, games to win or lose. I tried on different futures those hazy afternoons- What if I became an artist? What if I travelled the world? What if I never got married? What if I did? I would glance down at my friends’ muddied faces, marveling at their perseverance, and then escape back into my thoughts. I never considered that I could do what they were doing- that I could fix my eyes and fight for every inch and make a mark. I know my school girl self. I thought I had faced hard things. Maybe I had. But I was untested in the arena of life, and I couldn’t fathom that I’d have to face storms so wide and deep that I’d swear I was drowning. In some distant way, though, my school girl self wondered what it would like, facing storms. Would it all change overnight? Would it be a slow burn? The heartbeat of the question underlying all those school girl wonderings- will I be able to handle it? Will I be enough? Will the world fall down?

Dear younger self,

  I know you have a lot of questions, but all I’ve got for you is Doctor Who quotes. You haven’t heard of the show yet, but it’s worth it. Don’t skip Nine. (Trust me, it’ll make sense when you get there.) But anyways. Here ya go.

“When you’re a kid, they tell you it’s all… Grow up, get a job, get married, get a house, have a kid, and that’s it. But the truth is, the world is so much stranger than that. It’s so much darker. And so much madder. And so much better.”

“The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t always spoil the good things and make them unimportant.”

Life is going to be so much more than you ever expected. Keep your head up. And when a handsome country boy asks you on a date, say yes the first time.

Love, ME

The truth is, you can only write about it using conjunctive phrases. Youth makes you think that every answer will be exact. Life teaches you that everything is a both/and, and rarely an either/or. The storms will take your breath away and put wind in your sails in the same sentence. Push and pull. Ironies and contradictions. Very, very few absolutes. I can’t help thinking about the Doctor’s wise words lately.

Simply put, we returned to UVA. We had to leave in the middle of night to get to the appointment on time. Waiting for us was the elusive diagnosis that has been lurking in the background for two years, frustrating her doctors, making treatments harder:

Hyperimmunoglobulin D syndrome (HIDS), [Mevalonate Kinase Associated Periodic Fever Syndrome]

Your life changes all at once and not at all. That’s what storms do. You finally know what haunts your girl. She doesn’t act any different. She has the longest stretch of good days she’s had in months, while the Vacutainers line the counter in the lab, her life force distilled into numbers and titers. Life gets insane for days on end with the back and forth, and she stands there giggling, looking for all the world like a healthy kiddo. She plays in the water like her whole life hasn’t changed.

I wouldn’t have it any other way.

It’s our new world.

A new world in which she has not one, but two, chronic life-long autoimmune diseases. A reality that means that she will never have a normal functioning immune system, that she will always be more susceptible to illness, and that her anemia will most likely also be a life-long fight, a specter always in the background. Two auto-immune diseases that have no cure. You can add all the math and the answer will always be less than you want it to be.

But it’s our life. Her life. Our new world.

The last two weeks have been ridiculously intense in ways I can’t even describe. There is no such thing as a good mail day anymore. James and I have faced levels of exhaustion we didn’t think were even possible anymore. It’s our life.

The same two weeks, friends slipped in and took care of things we couldn’t. They dragged me away to quiet harbor, they made sure that my children’s curriculum will be taken care of for next year, they made me laugh, they made me think, they made me remember that there is a much larger world outside of this intense storm and that land is close.  Our new world.

I see green on the horizon.


  • Emily

    I’m so glad to hear from you, Joy. I was worried! I was actually about to email you when this popped up in my inbox. 🙂 Prayers, so many, going to you and your family and your precious girl. It’s a relief to know–to have a diagnosis–but then there’s other things to worry about….but I’m so glad you are starting to find answers.

  • elizabethroosje

    I am so glad to read this and hear from you this way; I am so glad you have in person friends who can help in such real and tangible ways. I am so sorry for the huge exhaustion that you and James are in. You all have been very much on my heart and in my prayers. So much. I found this small explanation of what you mention here (http://my.clevelandclinic.org/services/orthopaedics-rheumatology/diseases-conditions/periodic-fever-syndrome) and it made SO MUCH sense for your daughter. But not at all easy… I hope that her ‘good spells’ will continue to last longer and longer between the ‘bad times’ as it were. But it’s hard. Very hard. Continued love, prayers…

  • Maria

    I hope God gives you lots of strength and patience to go through it all! I have been following your Instagram feed for a while now, but I haven’t been following this blog, thus I don’t know much about Elianna’s health history. But please allow me to say that there is hope, you say she has 2 autoimmune diseases that have no cure. This is what we are led to believe by mainstream medicine. You can’t get rid of an autoimmune disease once you have it, but you can definitely put it into remission and I don’t mean by taking immunosuppressants, but through diet and lifestyle interventions. HIDS is a very rare genetic disorder, but take heart because our genes are not our destiny. The science of Epigenetics has proven that by showing how the environment (food, chemical exposures etc) can affect our gene expression, by turning them on and off. There are many healing diets that could help her a lot. Have you tried the autoimmune protocol? It’s a very nutrient dense diet that has helped tons of people put their autoimmune diseases into remission.
    The Mother of God be with you all and take care of that sweet little girl of yours!

    • Joy

      Hi Maria- I’m sorry it took me so long to see this comment! I hadn’t heard of the autoimmune protocol until recently, when my Khouria/Presbeterya told me about it. (She has lupus.) I’ve been researching it ever since I wrote this post. Great minds think alike, huh? 🙂 Thank you for stopping by!

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