#LoveforEli, forever

I was planning to write a post today about our friend Eli. I was going to ask you to pray for him. I was going to tell you all of his bone marrow transplant on April 17, of the rare immune condition that required it, and of the complications with his kidneys and lungs since then. I was going to tell you he turned four around the same time our Patu did.

In my planned post, I wasn't going to be telling you that he won't be turning 5 next year along with her.

In my planned post, I wasn't going to be telling you our prayers for healing weren't answered with a yes on earth but rather a yes in heaven.

In my planned post, I wasn't going to be sharing that Eli's fight and pain and complications ended shortly before midnight last night.

As we've grieved the loss of our referral of Zoe's brother and rejoiced for the sweet couple who will be bringing him home, I've coped by praying for others. That's how I process my own struggles, by asking God to help others in theirs. I'm not sure why, but it works for me. I think it's something about getting my mind off myself, focusing back on God, and loving others through prayer. That combination soothes my heart.

In the past week, I've mostly prayed for Eli and his parents and his big brother.

Eli's mom Lisa and I have met up for dinner and coffee a couple times in the past week or so, as she's been up here from Florida with Eli hospitalized at Duke. We met in our teens, and we've been friends for longer than I've known Lee. I believe she was the one who coined the nickname Shannon Anna Dingle Heimer Schmidt when I started dating the guy I told her might be "the one." (He was, of course.) We've kept up our friendship via email and then social media and even occasional visits. During one of Eli's first visits to Duke, he and Lisa and Lisa's mom joined our family for pizza and soda and chaos... you know, typical Friday night fare around here.

I was dreaming and hoping and longing for the day when his transplanted immune system was strong enough for him to sit with us at our table once again. But that pizza dinner isn't going to happen, not this side of heaven.

My heart aches for them. For us. For a world that isn't going to know the amazing 5 year old and 6 year old and 13 year old and 21 year old and 90 year old that Eli would have been if he had lived past 4.

Please pray for everyone who loved Eli, especially his dad, mom, and brother. They'll be heading back to Florida soon, without their fighter boy. I texted Lisa this C.S. Lewis quote earlier because it seemed fitting: "The death of a beloved is an amputation." Pray for them, for the loss and absence that will never go away, even as they give thanks that Eli is wholly healed and that they'll join him in heaven one day.

I usually end posts with some conclusion or hope or challenge. But today, I have nothing but eyes that are cried out and a heart that hurts from all the hurting... so I'll leave you with Lisa's words, sharing the news of Eli's passing. Let this be the challenge I offer and accept today:

Eli finished his battle just before midnight last night. He went peacefully and felt no pain. We are relieved for him that he doesn’t have to be tortured anymore. We are so glad to know he’s whole again in heaven, doing all of the things that have always made his soul happy. We are absolutely broken that we don’t get to experience him healed here.

Thank you for praying and bELIving. One of Eli’s great gifts was that he pulled back the corners of people’s hearts to the possibility of Love. If Eli swept out any cobwebs or cracked open a part of you that you had shut a long time ago, please leave it open. For Eli.

‪#‎LoveforEli‬
Eli's Journey FB page

seeing a miracle
{an update on Zoe's vision}

You know I like to write about the beauty we find in the midst of brokenness. But sometimes

it just feels like brokenness.

Not beauty.

Not yet.

Let's try that last phrase in Zoe's words:

We decided to switch ophthalmologists a couple months ago. Our first was a competent clinician and a solid diagnostician, but communication? Not her strong suit. For us, that's a deal breaker, because Zoe's medical and educational teams need information to care for her well, so lone ranger practitioners just don't work for us.

Last week we saw the new doc for the first time.

And last week we felt the beauty, not just the brokenness.

Yes, Zoe's vision is still impaired. But? Wait for it...

The beauty:

  • In March, glasses weren't expected to do much for her, improving her vision some but still leaving her - even with glasses on - in the range of legal blindness defined as 20/200 or worse.
  • Now, her vision with glasses is 20/70. Perfect? No. But 20/70 is considered partially sighted or low vision, not legal blindness. And it means she can see from 20 feet away what I can see at 70 feet, which is a lot better than only seeing at 20 feet what I can see at 200 feet away.
  • And? Her astigmatism is worse than we thought (okay, a smidge of not great news there) but that means she needs one of the lenses replaced with a higher prescription in her current pair of glasses. So her vision next time around could be better than 20/70. 

But that's not even the most beautiful news, y'all. In March her previous eye doctor saw and documented severe retinal malformations, leading to the poor prognosis. This time?

"I don't see anything concerning here," the doctor said. "Her retinas look great. I suppose she could have some retinal damage on the extreme edges that I can't see right now, but that wouldn't affect her vision."

Y'all.

So did the first doc mess up? Was she incompetent? Did she make a mistake?

I'm sure the answer is no to all of those. I sat there with Zoe in my lap during the exam. She was meticulous. She examined my girl's retinas closely. She saw something.

So did the second doc mess up? Was she incompetent? Did she make a mistake?

Once again, no. I sat there with Zoe in my lap once again. She spent even more time checking for retinal issues because of the previous doctor's findings. She saw nothing.

Seriously, this is nothing if not miraculous.

In my struggles with hard news last week, I didn't have the emotional bandwidth to process all that I've shared in this post. Please don't take my silence to imply that we're not in awe of another amazing act God has worked in our little girl's life. We have been on our knees all week, in both praise and prayer. We have been celebrating this, even as we grieve otherwise.

A few friends have said they're impressed by our faith in the shadow of an adoption that might be failing. Please know this: in the midst of deep sorrow in the change of our plans to adopt Zoe's biological brother, God gifted us great joy in this news about Zoe's eyes. He didn't have to do that, but he chose to.

He asked us to trust and hold Sam's future loosely.

Meanwhile, he placed the gift of healing for Zoe in our hands, reminding us of his trustworthiness in a tangible way.

That's beauty in the midst of brokenness, my friends. And we are thankful.

Okay, I'll admit it ... I have arthritis

I think I've been in denial over my diagnosis, not wanting to admit out loud that I have arthritis. If I say it, it makes it real. Thus, silence has felt like a friend lately. However, some true friends have been asking for updates, which brings me to this post.

Yep, they've seen through my smiles, I'm guessing. I fake it well. But I've been hurting.

Many joints in both hands, wrists, elbows, knees, and feet are inflamed, swollen, and painful. This has been majorly affecting daily life. For example, in the past couple weeks I have needed to use two hands to turn some doorknobs or the key in the ignition because it is too painful to grab hold of the knob or the key with my right hand but it is too painful to turn either with my left hand. In that same time period, I've begun limping, due to especially tender joints in my left knee and foot. I could go on, but I think you probably get the picture.

As most of you know, the last time I saw my rheumatologist a month ago, I had three or four trouble joints (less than half of what I have now). The lab tests were inconclusive, and we scheduled a follow-up for November. He said to call and schedule another appointment if anything worsened, so I found myself back there last week.

The present diagnosis is inflammatory arthritis, and we ran more tests to determine the type. The likely culprit (which sometimes doesn't show up in bloodwork for as long as two years after symptoms begin) is rheumatoid arthritis. (I couldn't even spell rheumatologist or rheumatoid two months ago!) We're also doing an MRI on my right hand on Wednesday to determine whether and how much my bones have deteriorated in those joints, since the inflammation wears away at bones in inflammatory arthritis. I have a follow-up appointment on July 2 to discuss all the results.

So I admit it. I have arthritis. I have a slew of questions swirling in my head (like "Will I ever be able to go rock climbing again?"), but right now all we can do is take all of this one moment at a time and trust God to illuminate what we need to know and do in that moment. And try to keep smiling.