When Elli was a baby, we began to discover the full breadth and depth of both her medical challenges and her physical disabilities. We I went through a form of grief over her loss of a “normal” life and our loss of a “normal” girl. Gradually I learned to focus on what she still had, what she could do, what we could enjoy with her.

However, I would find myself revisiting that grief every so often. Every time we went through an evaluation, whether for a new therapy or for school or what-have-you, “they” would examine and list all her losses. Staring at the long, black-and-white list was, to be totally honest, depressing. I would struggle to regain hope for a couple of days after those.

And sometimes (not always, and less as time went by) I grieved again when I would see other children her age doing something that Elli could not. I often watched her peers and tried to imagine what Elli would look like, sound like, act like if she could do ____ (sing, act, dance, swim). Or even what she would be like just walking around our house as a typical child.

But I began to learn, however, was that while Elli and we had indeed suffered profound loss, we also had gained profoundly, too. We all gained an acute appreciation for each new accomplishment, no matter how small… or fleeting. We worked for years to teach Elli to drink from a straw cup, and we appreciated that ability every day she was able to drink somewhat independently. She lost that ability about a year and a half ago, and I mourned that loss all over again.

But we also gained a massive support system in the dozens of people we met because of Elli. She introduced us to incredibly smart and talented medical personnel, to motivated and skilled therapists and teachers, to other amazing children trapped in bodies that don’t work. Over the years, many of these people became friends, mentors, and encouragers. Their boundless energy and their tireless efforts to help Elli master new skills was an invaluable gift to us. Without their knowledge and their willingness to teach both Elli and us, we wouldn’t have made it.

So, in the last few years, I had become fairly content with our unusual life. I never prayed for Elli to be healed — I had accepted her condition. I decided to focus on being a good mother for her (and I was never content with how I did in that area!).

When Little Boy was born, we gained more than a fourth child. We gained more than another set of doctor’s appointments and surgeries and medications. We gained the support of many more people.

A wise friend who also walks this road helped me see that sometimes God does give you more than you can handle…. alone. Sometimes He gives us more than we can handle to force us to learn to accept help. He created us to live within a community, in which each person uses their strengths to help those with complimentary weaknesses.

Those 15 months between Little Boy ‘s birth and Elli’s death were the toughest and scariest 15 months of my life. Scary because I was over my head and terrified I would screw something up so bad someone would get permanently damaged. But in those months, I learned new lessons in humility — humbling accepting help with home-making, meal prep, and children. And I gained new and deeper friendships, in addition to a much greater appreciation for the church as the body of Christ.

Then we lost Elli.

Losing a daughter is shattering. But what has shell-shocked me even more has been the loss of relationships with nearly everyone associated with her.

We lost all the speech, physical, and occupational therapists that had worked with Elli for years. They had watched the other children grow. They had celebrated Elli’s accomplishments with us. And prayed for her during her many struggles in the hospital. But we rarely see them anymore.

We lost contact with many many staff at the children’s hospital. We knew phlebotomists, nurses, technicians, and doctors by name, and they knew us. I don’t even know how many of them know she is gone. And I don’t have the heart or the strength to go talk to them. Surely they can guess what happened since she just disappeared…

We lost the entire community of Elli’s school — daily communication with teachers, aides, school staff, families who live in the other zone, bus drivers. Elli attended a school outside our zone because it was the best one for her. But our other children will attend a different school when they reach Elli’s age. So we’ve really lost that school.

We also lost her class and classmates. We visited on the last day of school this year, to say good-bye. We visited the special education staff (they even dragged out this ride-on pony that the kids LOVE to play with when we showed up!), the nurse, and her classroom. Everyone there was so very sweet and made us feel welcome. Her classroom teacher and classmates dedicated their year-end slide show to Elli. But I will admit that I didn’t manage to hold it together the whole time. It is so strange to close that chapter of our lives (though I know Little Girl will ask to visit the pony again next year!).

Graduating from third grade is a big deal in our school district because they move up to the fourth through sixth grade building. But each milestone they, the Class of 2018, celebrate (as they should) is one more that we have lost.

In many ways, this is a loss that keeps losing.
…I will always watch people of Elli’s age and imagine what she would have been like at that age.
…I will always think things like “She would have started middle school this year,” or “She would be taking driver’s ed” or “I wonder if she would have gone to the prom?”
…We will always miss her contagious delight during the singing of “Happy Birthday.”
….Hearing any song by Chicago or Veggie Tales or “I Got You Babe” by Sonny and Cher will simultaneously stab and warm my heart.

Her absence is an unrecoverable loss… for now.