I want to record our matching process because, well, I want to.
I have had this post written for a few months now, but have been waiting until I was ready to share it. Our matching was the most difficult experience we have been through as a couple. Many friends know that Julianne is being adopted through the special needs program in China. Once they know that, the natural inquiry is about her special need. Since more people are beginning to ask, I feel like it’s time to make our matching story public.
It was drawn out & quick.
It was difficult & easy.
It was seeing the hand of God & recognizing the ploy of the Enemy.
It’s a story worth recording.
On March 11th I told myself, “no more looking at the list of kids”. Our agency, like others, has a list of children that are available for adoption through that particular agency. Even though we were far from being “ready” in my mind, I liked to look through the list, see the faces, and pray.
But it was hard.
It’s hard to see those faces. I rejoiced when one would have a new label “Matched” beside their name, but I hurt for the little ones that didn’t.
On March 11th I was done. I decided that I would not look anymore because my heart couldn’t handle it. I decided we would just wait until after all of our paperwork was in China (LID), and then go through the referral process.
March 12th I woke up and knew I needed to look. I didn’t want to, but I did.
And, I saw her.
I want to say that I saw her face and knew. But the truth is, her face was not the first thing that drew my attention.
It was her name…
The English name the agency had given her.
We had chosen the name Julianne weeks before. The name they gave her was Julie.
She was in the age range I had secretly been hoping for, and her special need “dermatitis” seemed like something very manageable for our family, especially considering my boys’ history with eczema.
I immediately called our case worker and asked to see her file, and to have her put on hold for us. That would assure us two weeks to read her information, find out more from a doctor, and pray.
That was a Wednesday.
By the following Sunday, we knew. We had talked, we had prayed, we had sought advice from the medical community. She was ours. There were things in her file that were uncertain, diagnoses that seemed vague, but we felt at peace with the vagueness, and ready to commit.
I emailed our case worker and asked her to call me the following morning, with the intention of telling her that Julie(anne) was OUR daughter.
Monday Morning: Literally 30 minutes before our caseworker called, I got an email. It was unsolicited information… a specialist we had asked questions to in regard to her need had forwarded her file to a trusted co-worker, and his opinion weighed heavy. He felt that her diagnosis was the “worst case” scenario that we had known about. We really had convinced ourselves that this “worst case” was NOT what she had, and so this information was devastating.
I sobbed on the phone and expressed every fear I had. And our sweet caseworker listened and offered practical suggestions to find out more information.
Her diagnosis is not one that will be a secret, it’s something people will be able to see. It’s not like a heart condition, or any number of others that are hidden inside the body. Her need is with her skin, her skin is more fragile than most people. The fragility is caused by a genetic disorder called Epidermolysis Bullosa.
We knew this was a possibility, but seeing this email in which this dermatologist said he felt VERY strongly that it was EB was devastating. All of the sudden we were overwhelmed with fear and doubt.
These EB children are often referred to as “butterfly children” because of the fragility of their skin; they are as delicate as butterfly wings.
Was our family right for her?
Would she be hurt all of the time playing with the three children we already have?
Was there a family better for her?
I kept imagining scenarios in which this little Butterfly collided with the force that is Hurricane Brady and it made me cringe!
We spent the next week and a half in a frenzy, trying to find out as much information as we could.
You see, we were concerned, scared even, but we never felt released from our “yes”. We were convinced that the Lord had brought her to our attention for a reason, and we fought for her. We absolutely didn’t want to let her go, but we also wanted what was BEST for HER.
We were able, in that week and a half, to send a few clarifying questions to her orphanage, and the responses were encouraging.
We were able, in that week and a half, to get the lab result part of her file translated, which did have the EB diagnosis listed. (for our translation we used Adele Hall with Blessed Kids. She was great!)
As soon as we saw the “official” lab translation, we were at peace.
Here’s the thing.
Before we knew she had EB, we knew it was a possibility, and we were okay with that.
All of the sudden hearing that she DID have it… it was a crack that the Enemy used to plant seeds of fear and doubt.
The Lord used that week and a half of agony to sharpen us. By the end, when we had the lab results, we were even MORE confident in our YES.
God used that time to connect us with people. I found out in my research about the DEBRA foundation, and I talked through my concerns with their nurse. She is amazing! While talking to her, she found out where we lived and said, “Oh! There is a GREAT pediatric dermatologist there, and he specializes in EB!” We’ve already been to see him, and he IS great.
God used that time to have us fall in love with her. To fight for her. To go to great lengths to keep her.
He used that time to draw us nearer to him. To trust him more. To depend on his grace.
Our daughter has the diagnosis of Epidermolysis Bullosa, but it’s not who she is, and we aren’t afraid of it. She will require care, but from all appearances, her version is fairly mild. There are some children who suffer mightily from this disease. Our girl? She isn’t the most delicate of butterflies.
As I read the words I’ve just typed, they can’t come close to expressing the agony of those two weeks. It was the most difficult time we’ve been through in a long, long time.
Would I go through it all again for my Julianne?
There is much that is still unknown. But one of the things we have learned during her adoption process is that the unknown is the place where God works mightily.
Note: To those who see a new medical term that they don’t recognize and run to Google…
In the words of a medical professional:
“Saying a person has EB is like saying a person is a burn victim. You can burn your thumb on a hot pan, and technically, you are a burn victim. You can be trapped in a house fire and suffer 3rd degree burns on your body and you are a burn victim. Both the same label, but VERY different things.”
EB is like that. A person can have EB and barely notice it. Or, a person can have EB and have to be bandaged on their arms, legs, torso, even feeding tubes because swallowing food causes blisters in the throat. I’ve even read stories of people shaving their heads to prevent skin irritation.
From all pictures and information we have, our case of EB is very mild. More like the “thumb on the hot pan” version.
We may choose to have more testing done later to determine what type she has. OR, we may wait and let her make that decision herself.
We don’t know yet.
Please respect that we don’t have all the answers, nor will we at any point in our lives! We just trust that she is a precious daughter, and that the Lord has her with us, and us with her for a reason.