Monday, May 30, 2011

The Story of My Kids

My kids have been denied. A lot. And they've experienced so much pain and rejection.

Some of them were left alone in bus or train stations. One was dumped in a cemetery and left to die. Several were admitted into hospitals under false names and then abandoned. One was trafficked by beggars, her disability exploited for money at the hands of people who never loved her and never would. One child's mentally ill mother tried to murder him. Several others were relinquished to orphanages which were then closed down due to accusations of baby-buying and falsified records about ten years ago.

Eventually most of them were admitted to the state government home, where hundreds of children are cared for. Most of the children in the orphanage do not have special needs, and some of them find local adoptive families. (International adoption was suspended from this state for many years following the scandals). Local families continue to adopt healthy children, but my kids were rarely even considered and just were not being chosen.

Because there was so much to do for the others and the budget was so limited, my kids were neglected at the government orphanage. Only one of them was ever sent to school (blind school, for a year). For the 60 or so kids with cerebral palsy, there were no funds for physical therapy, to buy orthotics, or to get club feet or crossed eyes repaired. Several issues like HIV, craniosyntosis, hydrocephalus, cleft palate, Hepatitis B, spina bifida occulta, perforated ear drums, chronically inflamed tonsils, contractures, knock knees, asthma, scoliosis, etc. were not discovered or addressed. The children's needs were simply overwhelming, and no one had time to research these conditions and determine what should be done. They also had no funds for diapers or furniture, so the children slept on mats on the floor, and the incontinent ones just wet and soiled themselves continually. They were often wet, so they were rarely (and some of them probably never) held and cuddled. They had empty eyes. No photos were taken of their milestones. They were not celebrated, nor were their deaths deeply mourned. Everyone felt bad about them and I'm sure at least a few staff members loved them, but the time and resources were just not there to make life much better for them.

I asked for five of those kiddos and have been given over 80 so far. We have taken them in five shifts as we felt led. Each time a wave of new kids comes in, we implement the WHO Guidelines for the Inpatient Treatment of Malnourished Children, because local hospitals don't have programs for dealing with malnourishment. The kids are immunocompromised and minimally, if at all, immunized (with the exception of some from a couple of the since-closed orphanages). They get sick with everything--typhoid, malaria, meningitis, pneumonia--the first year they're with us. They pass around staph infections and viral warts on their faces, trunks, and arms. They get cold sores and head sores. Many have parasites. They're in and out of hospitals. It's a challenge. Ninety percent are severely anemic, and it takes a good 9-12 months to stablize them. Just getting them surgically caught up to where a child with their disability should be for their age takes about 18-24 months for a new shift.

Say what you will about immunizations, but I have noticed that once we get them going with their vaccines, their immune systems kick into gear. We also give them immunoglobulin shots, which help as well. They start vitamin and mineral supplements, and some get vitamin B-12 and/or D-3 injections. We work hard. I spend hours researching their conditions, visiting forums and hospital websites, reading articles, posting questions, sending scans to my radiologist friend and others, and getting tests done. We spend weeks--sometimes a month at a time--in the city getting specialist's opinions so that we don't miss important windows for getting things done (like getting Genevieve's corneal graft done while she's still young enough for her brain to learn to use that eye.) And fundraising for all these things takes up a huge chunk of my time, because these kids' needs are really exceptional.

Despite all our hard work, we've still lost 9 children: Keziah, Matthew, Elizabeth, Evelyn, Jaron, Shalene, Jamie, Noah, & Yemima. We lose them because we just don't have time to get it all figured out, and to train everybody on how to handle each disability, and because we have no doctor or really experienced nurse on staff, because we're still learning what equipment we need, fundraising for, buying, and learning how to use it. We lose them because the kids arrive already septic, or with high intracranial pressure, or with an epilepsy cocktail they've already outgrown, or malnourished beyond belief. Sometimes staff members we hire turn out to be neglectful or just apathetic. Sometimes kids die because no doctors are available on Sundays or in the middle of the night, no local hospitals have ventilators, the ambulance doesn't show up, and hospital staff are not trained or can't be bothered to resuscitate. We have shed so many tears in three years. Words don't suffice to say how hard burying these children we love so deeply has been.

The 82 children still with us are miracles. Dhivena walked for the first time at 13 years old. Justin survived a stroke, regained his few words, and delights us every day with his huge grin. Mark's life was saved when his urethra was moved out from his rectum. Many of our kids thought incapable of learning are excelling in private schools. Hydrocephalus was prevented from taking Keren's life through a timely brain shunt. Gabe is beginning to get sensation in his feet and legs. Hope's eardrums were repaired, and she's getting her second hearing aid. Lily's crossed eyes and club feet were fixed, and an illness that would have been terminal was diagnosed and defeated. Rebekah's doing wonderfully after craniofacial surgeries have given her brain the space it needed. Felicia went from fetal-position, throes-of-death, in-misery-whenever-touched to a happy, chubby, mobile kid who gets herself around the room, laughing and playing with toys, enjoying tickles and hugs.

We so deeply love these kids. Each one is an absolute treasure. They make us laugh, they like to be tickled and kissed on and hugged and swung around and danced with. They love with abandon, and very few of them carry a grudge. They're through-the-roof excited at a simple restaurant meal or a trip to the park. A trip to the beach is richly rewarded with giggles as they experience the outdoor elements--sand and sea and wind and sun--sometimes for the first time in their lives. They think a birthday party just for them is the most special thing in the world. They squeal when pushed around in the wheelchair, or when they get to go in the car. Bangles are a big deal, a new fluffy pillow is a treasure, and a new toy makes them jump up and down. The things they say, the things they do, the way they pray, the way they look at us with love... They're so happy now, and they make us so happy.

In the next post I want to share some of my dreams for them.

UPDATE: a friend of ours was inspired by this post to make this slideshow and to present the children's needs to her church. Feel free to use it if you'd like to share about SCH!

7 comments:

dorothy said...

Beautiful Sarah! Starting in June we are back on board (Lord willing) sponsoring you and yours.
love you to pieces

sarah bess said...

Sweet, Dorothy. Love to you guys!

Arnold family said...

I am so thankful that these children feel love and hope. I will continue to pray for them and that heaven's blessings pour down on them!:)

Miss Bible said...

What a beautiful thing you are doing.

Do you have any with a bone disease called "Osteogenesis Imperfecta"?

Jenna said...

Hi my name is Jenna and i came across your site. U are an amazing, and wonderful person. That is so awesome what you are doing to help these kids! U are such a caring, thoughtful and kind lady. Do you have any kids with a bone disease called, Chrondrodysplasia Punctata. Probably not because it is so rare, but I am just curiois, cause that is what I have. I love it when people sign my guestbook. www.miraclechamp.webs.com

Sara x said...

I know the pain of the children you have lost hurts your soul but never forget to see all those you have saved. Love you loads xxx

makati condo said...

It was a little bit sad story but it was an awesome blog. I admire you for caring and giving time to say about what is the real thing happens in some unlucky kids out there. Thank you for this amazing blog. Keep posting and God bless.


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