Ebenezer

The shape of a year.

How do you measure a year in the life?

In daylights, in sunsets
In midnights, in cups of coffee
In inches, in miles
In laughter, in strife

-Danny Osmond

It’s been almost a year since I’ve written here. The pictures tell the story, but it’s hard to show the depths of the darkness and the brightness of the light that circumscribed our year.

Ellianna got sicker. Much, much sicker. She was hospitalized for a week in late November. We travelled back and forth to Cincinnati Children’s Hospital twice in February and March for extensive testing.ย  She underwent surgery in May. We know not much more now that we did a year ago. We’ve added a few more acronyms to her laundry list of diseases. We established that she has the MTHFR mutation, and with the help of a nutritionist and treating with methylation donor medication, she has finally turned a corner and has experienced some healing- gaining weight, stabilizing blood work, and better overall color. We’ve learned to treasure the moments and live in them. Will she get even better? We hope. Will she get worse? It’s possible. When the world-renowned specialists at Cincinnati are adding her to studies and consulting cross-disciplines…let’s just settle for our Elly-bird is a rare, rare kiddo.

I was not underestimating things when I said in my last post a year ago that I was worried what the cost of the constant trauma would be on our family. It was profound. We’ve spent the year learning to heal from all of it; a few family members are in counseling of one sort or another. Mental health is as important and physical health, and I implore you to consider counseling too if you have wrestled with as much medical trauma as we have (or even less! I wouldn’t wish what we went through on our worst enemy.) It has helped us knit back together the strands of the tapestry of our family, which was getting rather strained trying to holdย so much. We are a healthier family now in all respects than we have been in the last three or four years. It feels a bit strange, to be honest. Once you’ve got on the adrenaline train of constant medical chaos, it feels very odd when it all finally stabilizes and you realize you can actually breathe again. You almost have to be taught how to do it again, because the stress has made you forget.

Let’s not forget the light, though.

We have spent so much time laughing. Splashing. Dancing. Learning to drive. Learning new things. Growing. Thinking. Hoping. Imagining. Painting. Drawing. Building. Loving. The list goes on and on.

We lived, and we loved. We failed, and we tried again. We fell, and we got back up. The measure of the shape of a year.

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