It was Part of the Plan

June 10, 2017 arthrogryposis, clubfoot, June 2017 Feature - Orthopedic, mobility issues, Orthopedic, undiagnosed SN, walker user 0 Comments

If I ran out of the room right now I wonder if anyone would notice?

We were standing in the civil affairs office in Guiyang, Guizhou, China and the reality of what was about to happen came crashing down as she was carried through the doors. We were seeing her in person for the first time and in a matter of seconds she would be placed in my arms. I genuinely thought for a moment, “I wonder if I could run out right now?”

We began our process in 2013 and were pursuing adoption in Ethiopia. We joined the waitlist with our agency in early 2014 and although things began to grind to a halt almost immediately after we submitted our dossier we felt that staying with this program and on this path was where God wanted us. Things began changing and sadly not for the better as the year went on and in December of 2014 we had some big decisions to make as to whether to stay or not. My husband and I prayed and sought the Lord knowing He had never led us in the wrong direction and trusting He wasn’t about to start doing so now! We came to the conclusion that we needed to stay put even though we really didn’t understand why seeing as how there was zero progress and the process was getting more and more unlikely to get moving again.

When we first began looking at possibilities for adoption we were disappointed to learn we didn’t meet certain criteria for China but as I continued to do research we felt total peace knowing that God had a plan for our family. Ethiopia, or whatever country we might have ultimately pursued, was never second place or second best. It was part of the plan.

Toward the end of December 2014 we received our monthly update from the agency. Had we not stayed in the process we might not have seen this update email from our agency. This update included, as some had in the past, a few children in need of a family – some in countries besides Ethiopia. We’d occasionally seen these before and always prayed for them to find families but never once felt prompted beyond that.

Something about this email stirred my heart and I absolutely can’t explain it. Changing course would mean a new country that we didn’t qualify for, special needs, starting over on paperwork and finances. The beginning of January I mentioned the email from our agency to my husband and he said, “Email them.” He said this with such a confidence and clarity that moments later I was at my computer emailing our agency all the while thinking “What on earth are we doing??”

Over the next few days things progressed rapidly. We were put in contact with the China coordinator for our agency and learned that not only did we already meet certain criteria but a few guidelines had changed just that month making it much more likely for us to be approved. We were sent a special needs preference form along with several other documents and the whirlwind really began.

I am ashamed to say that from day one of our adoption talks my husband and I always agreed that we “just couldn’t handle special needs.” We feel a deep sadness thinking about that now. The change that happened in our hearts is one I can’t explain because I didn’t see it coming. We just found ourselves with the realization that we were absolutely right. We couldn’t handle it, that is control it, but that really had nothing to do with whether or not we should adopt a child with special needs. God had been doing a work in our hearts all along, preparing our family. He was clearly telling us to do this and that He was going to walk with us every step of the way, assuring us that He had already gone before us.

Now, please don’t hear (read) what I’m not saying. I’m not saying to adopt a child you clearly can’t care for. I’m not saying to adopt a child even when you have no access to medical care for this child. But I am saying that for us, the thought that adopting someone with special needs was for “other people” had held us back for far too long. In a matter of days we had filled out paperwork, submitted forms, and sent back our special needs form. Our coordinator who would eventually become a dear friend, told me to keep my phone on. Well ok. Cue the excitement!

Two days later on February 8, 2015 we would see our daughter’s face for the first time.

Fast forward to November 15, 2015 in Guiyang, the doors opened and in came Wen carried by a lady from the orphanage along with Wen’s foster mother. I found myself completely freaking out. Thankfully it was all on the inside.

Did I really just fly on a plane with my family to China?
Did I seriously think I could do this?
Are they honestly going to let me be her mother??

I had played this moment out a thousand times and although I knew there was no way to really know what I’d feel until it was actually happening, I don’t think I saw these thoughts and feelings coming. I was so excited and thrilled to finally meet our little girl but every inadequacy I felt and every fear I had was raging in my ears. But then suddenly I felt Jesus saying to my heart, “Marie, you aren’t doing this. I am. And I’ve got this. Just take it one step at a time.”

And then there she was. In my arms and I’m certain far more terrified than I was. We all spent some time together watching her and just trying to get to know each other in what I am guessing many adoptive families will agree is the most awkward scenario possible. When it came time for the two people she knew to leave she was heartbroken and although I knew at that point nothing I could do or say would help I began walking back and forth softly singing to her and trying to console a heart broken in way we can’t imagine.

Our time in China was life changing. I’m aware of just how cliché that sounds but it is the only words I can think to describe it. I think we are stronger, more compassionate, and view things differently individually and as a family. We were able to take our daughter Anna, who was five years old at the time, with us to China and I will forever be thankful for that. Thankful doesn’t even cover it.

I know taking siblings isn’t for everyone and isn’t even possible for some but if it has ever crossed your mind, spend some time considering it. For us it was not a question and was one of the best decisions we made. Our family will never be the same after that trip and not just for the obvious of adding a member to our family. We all came back with a changed outlook on so many things. We miss it and the people we met everyday. Each of us long for the day we can return.

Wen grieved in several different ways in China and continued (continues) to do so once we arrived home. We are left in awe watching her progress and learn to trust us. This process took months and there are still areas where she struggles to remember we are for her not against her. Even though the bad days still come, we have more good days than bad a year and half later. If you’re on this journey, take heart. You’re not alone. There are days we feel like we’re starting over and so on those days we do just that. We start over. We go back to the basic things we did to remind her she can trust us and that we love and are never leaving her.

We were told our daughter had bilateral clubfoot and a stiff left elbow. The moment I held her I could tell there was a lot more going on. We would later learn that our daughter has arthrogryposis.

Some of you are likely familiar with this but for those who aren’t, arthrogryposis is a condition that causes many joints to be stiff and crooked at birth. A person with arthrogryposis lacks the normal range of motion in one or more joints. A joint that lacks normal range of motion is called a joint contracture.

For our daughter Wen, it caused both of her feet to be severely clubbed and primarily affects her elbows, legs, and hips. All of these have limited range of motion, some much more than others.

We had no idea what she was capable of when we met her and were quickly impressed at how she got around. Wen could walk on her knees as fast as some walk on their feet. She could climb and maneuver and hold a cup and a fork all in her own adapted way. It was incredible to watch her push through the challenges she faced and find ways to make her world work. We would continue to see this fierce determination as time went on.

After spending a couple of months working to gain Wen’s trust at least to some degree we jumped into her medical journey. After multiple evaluation appointments and tests Wen was diagnosed with arthrogryposis and began Ponseti casting on her feet.

In the end she would have a total of 10 sets of casts and a major surgery in order to get her feet where they needed to be for braces. We made the 6 hour round trip to Shriner’s Hospital in Shreveport every week for a new set of casts. Her team worked hard to gain her trust and I will never be able to say enough good about this hospital and those who treat her. They quickly became a family to us.

Each week Wen would have her casts removed, her feet would be turned a little more, and new double full leg casts put on. She quickly learned how to navigate with them. It was inspiring to see how she wasn’t going to let anything slow her down. She made amazing progress but around week 8 her feet “hit a wall” and simply would not go any further. We knew this was a possibility and at this point surgery was scheduled. Two weeks after she turned three Wen had a five hour surgery on both feet to get them the rest of the way to a flat position.

The day of her surgery we sat waiting until they called and told us to head to a waiting area downstairs as they would be bringing Wen to us to go in her recovery room. As we sat on these benches I was instantly transported to about 8 months prior when we sat in chairs waiting anxiously for her to come around a corner.

And then there she was. We stood up just as we had that day. She was terrified and confused much as she was that day. But this time, this time when I spoke to her, she got calm. It shook me. They took her to her room to get her hooked up to monitors and ended up calling me back to calm her so they could finish. It was a whirl wind and then in an instant it was just us in the room with her.

There is no feeling in the world like the ones you have seeing your child after surgery. I looked at her and began wondering a thousand things all at once just as I had in China. But this time I remembered what Jesus spoke to my heart in the civil affairs office that day. “You aren’t doing this, I am and I have it.”

Recovery was long and hard but like everything else placed in front of her, Wen showed such strength and bravery. Let me chase something for a moment because I never want to be unclear on this point. Being strong, brave, or determined does not mean there aren’t struggles, tears, and fear. In fact, the two really have nothing to do with each other. We have had many tears and Wen has had so much pain, emotional and physical. The bravery I see in her is how she continues to face it every day.

It has been over a year since that first pair of bright green casts and we are approaching a year since her surgery. Since that time Wen has worn AFO braces 23 hours a day and is able to get around remarkably well with a walker. I will never forget the day it all started clicking and she took off practically running with her walker calling to her sister, “Anna! Let’s race!”

The current goal is to maintain the gains she has made. We don’t know what the future will hold for her medically. I suppose technically there are many things she can’t do but we really never look at that way.

To think we ever thought of ruling out special needs brings tears to my eyes.

Today this idea of special needs is just normal in our home. We aren’t flippant about it but we see things so differently than we once did.

It’s funny how your whole world can be turned around and it come out so much better. Wen really is one of the most determined, hilarious, silly, animated, and brave girls I know and – incredibly – we get to be her family.

– guest post by Marie: email || blog

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