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The Unfairness of it ALL
It’s all so unfair.
I just took her downstairs to have her sedated for her MRI and CAT scan. We should be at home bonding. We should be at home where she can learn she’s safe and she can learn to trust us. Instead I had to lie her on a cart and watch the fear in her eyes as they hooked her up. She doesn’t understand why we are doing all these tests. Through my broken Mandarin I can tell her she is brave and strong and that I love her but it isn’t enough. The girls have tried to explain that she needs these things to get better, but I can see in her eyes, that it doesn’t make sense. She’s withdrawn and sad and just done with it all.
I’m mad!
Angry!
Frustrated!
Overwhelmed!
Tearful!
Heartbroken!
She finally smiled last night. After three long, miserable days, she smiled and all was right with the world for a moment. Honestly, there’s nothing like seeing her smile. Maybe it’s because you have to work so hard to get a smile. Maybe it’s because you know how sad and hurt she truly is. Maybe it’s because her whole face just lights up. Whatever the reason, it’s like winning the lottery to be able to bring a smile to her face.
Life has not been fair to our little girl. Had she been adopted before the age of 4, she probably could have avoided a transplant. Had she had the proper nutrition, her bones wouldn’t be so frail. Had she had the proper dental care, all of her teeth wouldn’t be rotted and need to be pulled. Had someone done PT, her legs wouldn’t be so contractured.
Because of this lack of care, we are now talking g-tubes and dialysis and transplants, proper nutrition and how many meds she will have to take. We have to discuss PICC lines and ports, weekly shots, blood draw, catheters, and physical therapy.
I knew all these things when we were considering adopting her. I read about transplants. From Grace, Dan’s dad and my mom, I knew about kidney disease and dialysis. I’ve watched the people I love suffer from it. I am not naive. All of those things scared me and truthfully almost kept me from proceeding.
I am busy. I have a ton on my plate. How could we possibly spend three hours, three times a week at the hospital? How could we spend even more time at the hospital for hospitalizations? What would be the cost with insurance and medications? How would we continue to homeschool? Would the other kids understand one more child taking us away from home for hospitalizations?
Even though those fears almost made me not proceed, seeing this face changed all of that.
This is our daughter. We will fight for her. We will stand beside her. We will hold her hand. We will comfort her. We will cry tears for her. We will celebrate with her.
I am sitting here beside her in the hospital. I have just been yelled at again. She doesn’t necessarily like me, let alone love me. She barely knows me. I spent an hour trying to get her to take her meds. I called Elyse and had her translate “You have to eat and take your meds or we can’t go home.” Her response was to shake her head no. She would take a med, take a sip of water, and hold the drink in her mouth for ten or more minutes. I finally let the nurses take over and went to the bathroom to cry.
I don’t want people to force her to do stuff. She’s had enough of that in her lifetime. I want her to be able to trust me enough to just take them. I want to fluently speak her language so I can convince her that it’s ok. I want to go back in time and pick her up as a baby and get her the medical care she so desperately needed. It’s just so unfair.
I know it would have been easier to say “No” to adopting her. I could have gone on with my life and some day in the future, after many tears were shed, she probably would have just been a little girl in a picture who stole my heart. I would have never known what she was going through. I would have prayed for her and as the days passed, slowly her memory would have faded. She may have still been advocated for or she may have fallen off the radar. Her kidneys would have failed and she would have died alone. Some one may have posted about another orphan who passed away or maybe no one would have even noticed.
I could have done that. Lord knows I have cried enough tears over 100’s of children’s pictures that have touched my heart. We have advocated for children. We have fervently prayed for children when we realized that God was not saying “Yes” to our family. I have also scrolled by thousands of pictures of children who wait, barely blinking an eye. Why? Because there are many thousands of children who wait on advocacy sites and on agency lists. Because there are millions of children in orphanages. Because it is just so overwhelming. What can I do? How can I make a difference? There are children all around the world that wait. If you take it all in, you could lose your mind.
But JJ wasn’t just another picture. She was the daughter God lead us to. She IS my daughter even if I pretend she’s not because I am uncomfortable. God’s call isn’t false just because I am scared. If I truly believe God has called me to her and I do nothing, it is no different than taking any of our other children from our home, taking them half way around the world, and leaving them there alone and without medical care. I can’t even fathom doing that so how could I leave her?
It is so unfair to these children. They had no choice in the country that their parents lived in. They can’t do anything about lack of medical care or support. They can not control the issues that brought them to the orphanage in the first place. I think back to when Grace was diagnosed with Lupus that had affected her kidneys. Dan pushed for treatment and they did the biopsy right away. Grade 4/5 glumeruleonephritis was found. Gracie’s kidneys healed because it was found soon enough. Just a little more time and it would have been too much, the scar tissue would have been formed, and her kidneys would have been irreversibly damaged.
Why does Gracie get to go through her life without dialysis and a transplant? Because she was born in America to a family where her dad is a physician and knew enough to demand she be seen right now. There was nothing Gracie did to deserve it. She was just lucky enough to be born in the right time and at the right place. She is no more deserving of treatment and a happy life than JJ is.
It is just unfair! Totally and completely unfair! I just want to scream and stomp my feet and throw a plate or two, but instead I will sneak off to the bathroom and have a good cry. I will dry my tears, put a smile on my face, and try my darndest to get her to a place of trusting, loving, and healing. We will figure out the right treatments. We will stand by her side and we will help her fight.
Why? Because she’s worth it!
