Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, April 10, 2009

How does your story begin?

This is written by my friend Meredith Cornish. Last year she and her husband adopted two children with Down syndrome from Ukraine, and this is their story. It was because of her family's journey that my heart for the orphans of Eastern Europe was stirred to the point of NEEDING to get involved. I don't know how you can NOT get involved after reading some of the stories of families who've adopted children in the same (or sometimes worse) circumstances as Meredith's kids. Hopefully before too long I'll have news of my own to share. NOT of adoption, but very closely related to it.
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Two little ones laid alone in their cribs. They'd had little to eat and drifted in and out of sleep for lack of anything better to do.

The little boy's body was wracked with sickness and he laid in his excrement in a room by himself for hours until the next broth filled bottle would arrive along with a fresh rolled-blanket which was used for a diaper. His 3 layers of clothes kept him warm but were seldom changed and his cleaning was done by his bottom being swished under warm running water. Then back to bed he went for more endless hours. The door was closed as the nurses left and with no one to hear or answer his cries he often fell silent.

The little girl watched through the bars of her crib as she and her one roommate that could make eye contact looked toward each other. Without any toys, pictures, or stimulation they often laid quietly. Sometimes they occupied themselves with a soft moaning cry. She rocked herself back and forth in her crib, banging her head against the rails on each rock just to feel that something was there- outside of her self. She didn't have the strength to sit or even hold her head up nor did she have the desire to try. Her hands were her only toys and she gnawed viciously on them. Her clothes were cinched tight from her toes to her neck and her legs stayed curled without room to stretch, her toes permanently turned. Her heart beat faster and faster, her blood pressures rising, her body fighting for life as her heart tried to function while missing its entire center.

Sixteen months for the little boy... 5 years for the girl. Their story started with pain, malnourishment, little medical care, no stimulation, and a sad existence.

It's human to hear this story, to picture these children and to think "who could do this?" "where does the blame lie?" "how can this be?" And then the next questions begin, "how did God allow this?" "where were these children?" "does this still happen today?"


Proverbs 24:11-12 (The Message)
"Rescue the perishing; don't hesitate to step in and help.
If you say, "Hey, that's none of my business," will that get you off the hook?
Someone is watching you closely, you know— Someone not impressed with weak excuses." 

The reality of the situation is this: those two children were born into a society that doesn't accept their differences. It doesn't have a place- right now- for people with any form of disabilities. There is no schooling. There are no therapies. There is no childcare. There is little health care. There is little ability or hope for the mothers that birth children with disabilities to raise them at home. The economy requires 2 parents to work. Grandparents help raise the grandchildren, and that generation is even further engulfed in the idea that people with disabilities cannot survive in society. If a family brings home their disabled infant, by the time the disability is 'found out' the family will often lose their friends, be cast out by society, have little or no family support, and be considered "defective" themselves as it poorly reflects on the family.

Can you imagine... having a difficult time getting pregnant and losing the first baby to miscarriage late in the pregnancy. A second pregnancy and the married couple is filled with joy. The pregnancy shows trouble early on and the baby is tiny. They pray and call out to God to allow their baby to be born alive. At 38 weeks their baby girl is delivered in a cold, rundown hospital and they look at their beautiful new baby... then the doctor comes in and says "she'll never become anything. She can't survive with the defects of her heart. She won't be able to learn, to grow, or to have a good life. Leave her here. Go home. Tell your family that she, too, has passed away. Mourn for the child that you have lost. It's better this way. Don't tell anyone she is defective and it will not be known. You'll go on to have more children that will make you proud one day."

Three and a half years later another young family is expecting their first baby. They are young, just 24 and 25 years old. Without any complications they deliver a sweet healthy baby boy with shots of red hair and a pudgy face. One look at his almond shaped eyes and the doctor repeats the story that he has told many times. "Leave the baby and go. you will have more children that will make you proud one day."

Then the families both leave, heartbroken and believing the lies they were told. They tell their families and friends that their baby is dead. They are gripped with sadness, fear, and that little itch of unknown... is their baby still alive today? Did he live another day? Has she made it to a week old?

Meanwhile the baby is watched carefully for weeks or even months in the hospital and continues to get stronger. One day they are sent to the orphanage where they go to the infirmary to live out her "numbered days." For the girl, five years go by, the boy 16 months, in this same plain crib in the plain colored room with the nurses in plain dress and the plain broth and milk is served. One month before the girl's fifth birthday the papers are drawn up so that on the next transfer date she will be moved again. Her final move. To a mental institution a few towns over.

The nurses know the stories of the place she'll be sent. They are aware that none of the children that they've sent there have survived more than a few months or a year. They know how ill, how fragile, this little girl is and they have raised her from infancy from behind the glass window in the bed by the wall. They care for her because she is a human and deserves to live. Their ignorance is in how they treat her- without any love or contact. But their hearts still know she is alive and has a soul. With dread they know the approach of the last of her days.


This is how the story begins. The story of Emma's family, of her life in an orphanage. The story of Micah's days. The story of their parents, their grief, the love of the nurses, the lack of knowledge...

This same story is repeated day in and day out. So many children with disabilities of all different varieties are born into societies that doesn't accept them. It's not the fault of their parents, their doctors, their caretakers or anyone else. It is a society that is slowly opening its eyes to the gift of the children. A country that celebrated World Down Syndrome Day on 3/21. A country that is moving toward a more open spirit... but still has a long way to go in their socialized ways, their failing economy, and their healthcare which lags behind by a good 40 years or so.

This country is beautiful. The people are kind. The love or the children is apparent in the eyes and hearts of many of the caregivers in spite of the language barrier and the seemingly barbaric treatment.

Today there are hundreds of children in each orphanage that have no mother, no father. Dozens in each location throughout just this one country have disabilities. Their birth families may have 2 or 3 children at home that play on the playground three blocks from the orphanage, and yet they lay in their bed and wait for the next freshening and bit of broth. So many children... and next week might be that next transfer day. The day the institution's 'ambulance' goes around to the regional orphanages and picks up the children that are slated for transfer.

From place to place they go collecting the 'invalid' children that have no place in the schools that the other children will go to. They arrive at the new facility and are put into their new cribs. If they have the ability to get out, their arms are bound to the rails. If they scratch themselves or pull their hair for stimulation their arms are tied "for their safety". They're fed one meal a day and if they cannot take it from a spoon it will be the same broth or milk that they've lived off of for their first years. No health care is available. No medications administered.

One month after that 5 year old girl was slated to be sent to the institution... one month after God laid out the next part of her testimony and sent an 'unsuspecting' family to bring her home... just one month... the flu went through the institution she would have gone to. That crib "with her name on it" lay empty because she had been set free. And yet around that crib were many more... many more that died. Two of those children I've seen the faces of... one I've watched a video of. Just one month after she was supposed to be there, she, too, would be gone.

I'm impressed that you've made it this far reading, and I realize that news like this is often devastating to hear if it's the first you've heard of it. It can bring an adult to tears just considering it being their own child that went through this existence. Tonight as I listened to my son cry as he fought sleep I considered the children that have no one to answer their cries. He once was that child.

God is amazing. I realize after a story like that it may be hard to see the connection, but He is! It's absolutely true!! The world is in the state it is in because of man, sin, corruption. God didn't want for these to perish, but in a way it is a blessing that the children see only 5 or 6 years of life if their story won't be ending with love and a family. But there just may be a family out there that He has prepared for each and every child. Have you ever thought about that? That maybe He has chosen a couple from here and a mother from there to raise these babies... and He whispers it in their ear each night, and he shows them of His will by day. And do they follow?

I don't suppose that's for me to answer. Maybe it's a question for you?

I'm not saying that God has called everyone to adopt. I know that He's equipped other people to do other things to help bring the children into families. Sometimes it's praying for a child, for a family, for their life, their health, their future. Sometimes it may be contributing to an adoption fund for a child in hopes that it will help the family that God is calling to come for them to be able to follow that step of faith. Sometimes it may be financially investing in a family that's in the process of adopting and has already leaped out of their comfort zone and is trusting God to provide the funding. Sometimes it may be stepping out of your own comfort zone and reaching out to a family that is local and offering a meal, an hour of help around the house, a babysitter so they can go out (we know we have been blessed by people with each of these gifts for us and that others certainly will be too!). And yes, sometimes, it means stepping out in faith, asking the questions, and committing to adopt a special child whose futures are otherwise gone.

How does your story begin? Or maybe, more importantly, where will it go next? Will you follow God's calling to care for the orphans and help change the story's ending for one of His precious children?

This Easter weekend we celebrate the resurrection of Jesus Christ, who was crucified as He held the sins of each and every man that had lived and was yet to come. Mine. Yours. Everyone's. He battled death and the grave and OVERCAME them when he rose on the third day. He walked the Earth then ascended into Heaven where He now sits at the right hand of His Father, God.

The eyes of the children that see only a future of death... they need to know the resurrection of the Father. Their caregivers need so see the power of the Holy Spirit at work in the lives of the people stepping forward for the precious ones who are cast aside by society. The Word can be silent... but it speaks volumes. Please consider your role in the lives of orphans this Easter weekend. If you feel called, visit the website
www.reecesrainbow.org and take a look around at the families in process and thewaiting children. Pray for them. If you feel it's your calling to donate, please do. Ask God to reveal to you a family that's altered the life of an orphan near you. Step out in faith and offer a hand. Help however you are called... but find the calling... It's there.

1 comment:

Courtney said...

Thank you for sharing, Leah. This wrecked me. I don't think I'll ever be the same again.

Coincidentally, I only just recently visited Reece's Rainbow for the first time. I have two under two at home right now, so nothing is in my immediate future. But, the seed has definitely been planted...