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Family Lifestyle Session, Personal

March 8, 2018

A Very Special Family Lifestyle Session

This blog post has been a year in the making, and I’m still not sure I can do it justice.  This will be one of my more personal posts, and I’ll be talking about pregnancy, adoption, miscarriage, and special needs kids, so if that’s something that might be hard for you to read right now, please give yourself grace to move on.

One year ago, we had just moved to Indiana, and I was 30 weeks pregnant with Silas. I was also having a lot of strong pre-term contractions, insomnia, and nightmares about early labor and still birth. These were some of the most terrifying dreams I’ve ever had, and I found myself fighting fearful thoughts about our baby’s health constantly.

It was an incredibly stressful time for our family. We had just unexpectedly uprooted ourselves from Northern Virginia, moved to a city where we knew almost no one, and our new house had a flooring team, painters, and other contractors working on it. In all the commotion, I was grateful for the chance to escape and visit dear friends in Chicago for a weekend.

During my trip, I spent a few hours with my cousin Sara and her kids, and I made these images of their everyday life while Sara and I talked about marriage and motherhood.

Sara’s journey of motherhood has been very different from mine. After years of waiting for a child, she and her husband adopted twin brothers from Ethiopia. A few years later, they had a biological son. After a miscarriage, they were preparing to adopt again when they found out they were pregnant with Eden.

At their 20 week ultrasound, they were told that Eden was missing her corpus callosum (the portion of the brain that connects the two hemispheres). The doctors recommended further testing, but Sara and her husband Don decided to pray for their baby and wait until her birth to get the actual diagnosis.

Shortly after Eden was born, it became clear that she had severe microcephaly and that her brain would likely not support life beyond infancy. Sara and Don were devastated as this diagnosis was far worse than they could have imagined. The next months were filled with medical interventions and specialist visits, and learning to care for Eden, who needed surgery to place a feeding tube, and constant help with managing her secretions since she couldn’t swallow without aspirating her saliva. They were told that Eden’s brain would never mature beyond that of a six-week-old baby and that she was mostly blind.

While Sara and Don were heartbroken about everything Eden had to face, they were still filled with love for their daughter. I was following along on Sara’s blog, and during this time she wrote:

“And as for little Eden Evangeline, she’s a delight. She’s not a disappointment; we’re not disappointed with her. She is our beloved daughter and we will love her with all our might for as long as we can. And she’s a dear little thing so I don’t think that it’s going to be too hard.”

While Sara was filled with love for her little girl, she was also very honest about the difficulty of her daily life.

“Things we’re learning: There’s a lot of grace in the command to not worry about tomorrow … The weight of Eden’s care is exactly enough for one day and I can’t possibly think about tomorrow let alone 2-3 weeks from now or a year from now. I’m getting about 4 hours of sleep a night and that’s interrupted by 3 feeds and checking on her 20-30 times to see if she’s handling her secretions ok … During the night I often feel like I’m literally going to die- I’m so tired and it’s so hard, but I wake up in the morning with new strength and usually feel just fine.”

At three months, the doctors recommended that Sara and Don start palliative care for Eden, which is meant to provide comfort to terminal patients. Though this was incredibly sad for them, it also meant that Sara would have in-home nurses to help manage Eden’s care. Sara wrote:

“So, this may seem like a sad update, and there are still some sad days, but we are finding our new normal and there are also lots and lots of good days. We love our little Eden girl and she gets all kinds of kisses from us and from her brothers. She has started smiling more frequently and often will smile just upon hearing my voice when I come into the room. She also does a little giggle when I tickle her belly or when Don tosses her in the air (the same way he tossed her brothers when they were little). She is a delight and despite the difficulty, I truly count it a privilege to love and care for her. I believe she is one of God’s special ones and there is something that just feels so right about tending to her and sweetening her days with songs and kisses and snuggles.

When I visited Sara, I saw first-hand how her presence brought Eden delight. Though Eden is mostly blind, she has some peripheral vision, and when Sara was moving around the room taking care of the other kids. Eden would smile and wave her hands every time she walked past. And every time Eden smiled, Sara would smile too and speak to her or kiss her. It was so clear that their relationship was one of pure and absolute love.

It’s true that Eden will never crawl or speak or give her parents a hug, but visiting her helped me realize that she doesn’t need to do these things to be worthy of love, to bring her family joy, or to make an impact on the world. I, for one, will be changed for the rest of my life after spending just a few hours with her and Sara.

Though other people may look at Eden and see the things she is lacking, Sara looks at her and sees a beloved daughter. She and Don have chosen to love her—now—without holding back—even though they can’t expect another year or month or day with her.

This idea was incredibly powerful for me as I struggled with my final trimester of pregnancy. I realized that I was trying to hold back some of my love for Silas because I was afraid of losing him. My pregnancy had been so hard and stressful, and I just wanted to know that my baby was safe and healthy before I let myself fully relax and just love him.

After my visit with this precious family, I made a conscious decision to lavish love on my unborn child in the way I talked to him and thought of him. I chose love over fear each and every time I had a contraction or a bad thought. I think this shift had a huge impact on me, as I stopped having all those contractions and bad dreams, and I managed to remain calm when I went into labor three weeks earlier than expected.

Since Silas’ birth, I’ve had many opportunities to reflect on how we can choose love in all our relationships—including the one we have with ourselves. It’s been ten months since I had my second little boy, and I’m still not back in my pre-pregnancy clothes, I haven’t figured out how to meet both my kids needs every day, and I’m not always managing my various roles as mom and photographer with grace. But when I have negative thoughts about how I’m “failing” in various categories, I ask, “How can I love myself right now, just as I am?”

I am so thankful to Eden and Sara for showing me how to love without judgement or expectation, and I only hope I can grow to be more like them.

Sara’s blog posts are some of the most honest and moving reflections on faith and motherhood that I’ve ever read. You can read more here.

  1. Lindsay says:

    Thanks for sharing this, Rachael! What a beautiful family and what a gorgeous baby girl. I’m thankful to have heard their story. Wow <3

  2. This was so moving and beautiful, Rachael. Your cousin Sara is truly remarkable. Two lines really got me – “she (Eden) doesn’t need to do these things to be worthy of love” and “I chose love over fear”. I will take these with me and will remember Eden, Sara, and this beautiful story for a long time. Thank you for sharing and much love to this beautiful family.

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