What’s in a Word

April 11, 2017 amputation, congenital femoral deficiency, Family Stories, limb difference, missing arm/leg, Orthopedic, prosthetics, proximal femoral focal deficiency, rotationplasty 2 Comments

Driving in the car recently, I was listening to my girls’ conversation with each other and was struck by the words that came out of their mouths. Almost perfectly pronounced, and discussed quite nonchalantly, words like: prosthetic leg, surgery, backwards foot. It sort of hit me that these are words that not everyone (especially little children) would understand and discuss on a regular basis. And it got me thinking about other words, some happy and some not as much, that are now woven into our lives which have really come to define who we are and what special needs adoption is about.

Active
Athletic
Plans

For the first seven years of our marriage, these three words described our lives as we knew them. We were active in our jobs, church, with friends and family. We spent our vacations hiking, biking, and exploring new places.

We had plans. These plans always included adoption, but little did we know how our plans for our future children would not be at all what we had imagined.

Dossier
Referral
Letter of Acceptance

These new words soon became ingrained in our minds and longed for as we completed stacks of paperwork, waited excitedly for a referral, and then waited for what seemed an eternity for that ever-so-important Letter of Acceptance…. confirming that the adorable face we saw on the computer screen was definitely going to be our daughter.



Abandoned
Finding place
Special need

Words I didn’t necessarily want to know or think about, but are now forever a part of our family. My daughters were orphans – they had been abandoned by their Chinese birth parents for reasons unknown, but for which we may speculate and try to explain. These girls were found, brought to an orphanage in a city I had never before heard of in a country on the other side of the world.

They were cared for by people called nannies or foster parents until we could reach them. While we, in the meantime, completed more paperwork, waited some more, and started using more new words like congenital femoral deficiency, tibial hemimelia, amputation, walkers, wheelchairs, prostheses.

These words weren’t in our original plans. In fact, we had specifically said “No” when asked whether or not we were open to missing limbs with our first adoption. But there we were with our first referral and a quick Google search that showed that amputation of some sort was usually what happened when it came to this child’s diagnosis.

Amputationthat was a scary word. But there we found ourselves again, six months after bringing our first daughter home, staring at the face of yet another Chinese baby on our agency’s portal and facing the almost certain amputation of not one but both legs.

In the space of less than a year, this word became a forever part of our lives – bringing with it words like fear, pain, but also hope.



Surgery
Healing
Walking

Words that I never imagined would bring with them so many emotions. Words that can’t do justice to the days spent in the pediatric intensive care unit, the weeks and weeks in full body casts, the hundreds of hours spent going to physical therapy, doctor, and prosthetist appointments.

And that one word, walking, that will never again be under-appreciated or assumed in our house again!

Three short months after coming home, our younger daughter, Ivy, underwent double amputation surgery (otherwise known as bilateral knee disarticulation) because she was missing both tibia bones in her lower legs. A relatively straight-forward surgery, but traumatizing none the less for a child who had just turned two and had absolutely no idea what was happening to her.

It was a trying few months, filled with confusion, sleepless nights, and miraculously, eventual physical and emotional healing.



Our older daughter underwent a more complicated surgery called rotationplasty in December of 2015. That was a word I never would have imagined in my wildest dreams!

Anna was born with congenital femoral deficiency, which meant that she had no real hip joint and a very underdeveloped femur in her right leg. Rotationplasty involves taking away part of the existing femur, rotating the entire leg 180 degrees, securing the remaining femur to the pelvis, and repairing the ankle joint so that the foot/ankle can function as a “knee” and the previous knee joint (now turned around as well) can function as a “hip.”

What would this scary (and yes, crazy!) word mean for Anna?
Would this surgery allow her the best chance at mobility as she continued to grow?

After much research and lots of consultations, we were confident that it would and knew she was in the best possible care with a specialist on the East Coast. A twelve-hour surgery, a week in a hospital hundreds of miles from home, and a few complications with the spica cast added to the adventure, but the ordeal was an overall success and has now blessedly become a distant memory for Anna.



As I reflect on the many words I know now that I never fathomed would be a part of my everyday vocabulary, I find myself wondering what new words are still yet to be heard, researched, and learned. I know our journey is far from over, and my vocabulary set is nowhere near complete.

I wonder what words will emerge as my girls grow older. I think about the word “identity” and wonder….

Will they struggle with this, even more than the average teenager?
How will they most often be identified and defined… by their race? by adoption? through their physical limitations?
Will the words we whisper to them and pray over them be fulfilled?

It is our hope that they know themselves first by the words “child of God” and “fearfully and wonderfully made” above all else.

“Your word is a lamp for my feet, a light on my path.”

Words from Psalm 119 and words that my dad reminded me of when we first started this adoption adventure. He looked me in the eyes and said these words that I’ll never forget:

“God has promised us a light to our path. Yet we can only see a little ways in front of us, but not all the way. It’s not a spotlight.”

We don’t know what is in store for our girls, and we can’t always see where the path is leading, but God does.

His words assure us that we are never alone. What better words to know?



“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us. To him be the glory…” – Ephesians 3:20-21

– guest post by Jennifer



2 responses to “What’s in a Word”

  1. Dee (and Coach) Kijanko says:

    Thank you Jennifer for sharing all these words with us! We’ve been so blessed hearing these details of your beautiful girls’ stories. We are so grateful for how God has led you and Preston to be parents. We so hope to meet Ivy and Anna one day! Much love always!

  2. Chris Wilson says:

    Amazing
    Beautiful
    Humbling
    Blessed!!

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