I have really struggled in the past couple of weeks trying to find the right words in giving those that have been waiting, an update about Emma. There is just so MUCH to tell, yet I feel there aren’t enough words to say what I want to say. I think it’s because it is hard to describe what I feel each time I look at and just think about this little girl who finally came home to her family 3 1/2 months ago.
No one goes into parenthood wishing for a child with disabilities. We all pray for a “healthy baby” when we become pregnant, or discover we are going to be grandparents. I was no different. Each time I found out I was pregnant, I did everything humanly possible to bring a healthy child into this world and into my family. That didn’t change when Ron and I made the decision to adopt. We naively thought we’d bring two healthy children into our lives and go blissfully on our merry way, raising them into responsible adults just like we had done with our other children.
We started the long arduous road of international adoption with our heads in the clouds, completely oblivious to what was happening in the world where real children lived in real orphanages. We discovered a world where children were living in horrifying conditions, cold, hungry, and tossed away like garbage because they were not perfect when they were born. The sun was NOT going to come out tomorrow and there was no Daddy Warbucks coming to save Annie, or Ivana, or Dimana, or Yu Chang.
And this knowledge changed our perception of a healthy, perfect child.
We received an email from our agency, Children’s House International, with the file of a 5 year old little girl with Cystic Fibrosis. The photos and video showed a tiny little girl, with big brown eyes and a shy smile all dressed up in a white angel costume, complete with wings. Beautiful as she was, paralyzing fear ripped through me. When I was 5, a friend and kindergarten classmate of mine died of cystic fibrosis. I closed her file and refused to consider bringing home a child that could die before the age of 10, or even 6! We continued to look at files of other children, but I kept coming back to the video of the little angel dancing in the video. And I realized this wasn’t about me. This wasn’t about what my heart could handle, it was about a tiny little girl, living 5772 miles away and left in an orphanage in Eastern Europe because she wasn’t perfect. A little girl who needed proper medical care to treat her cystic fibrosis and a family to love her no matter how long she lived. I set my fear aside and brought this child home to be my daughter.
During the process of finalizing Cara’s adoption, we received the file of another little girl. A child not quite 2 at that time with a multitude of problems. Born not breathing, resuscitated at 3 minutes old, and abandoned by her mother because the doctors said her baby would not be perfect and would be better off in an institution. A little girl who by admission of the orphanage staff was sickly and they had no time for her, so she was left in her crib to her own devices day after day. No contact with other children, no adult to care for her other than feeding and changing, no toys, no interaction. They didn’t have time for children like her who were so very damaged. Her pictures showed another little girl with big brown eyes and a look of confusion on her pretty little face. My heart broke, and once again paralyzing fear ripped through me. She couldn’t walk or talk or even sit up by herself. We were “older” parents. We wanted a child that could walk and talk. I set the file aside, but asked continuously if a family had committed to her. I rejoiced when I heard a family had. And I cried when I found out the family backed out. By that time, the little girl had had her second birthday and I once again had to confront my fears. And so began the process of bringing home this imperfect child.
As I said, no one prays for a child with special needs. I was no different. Committing to these two little girls gripped me with a fear I’d never known. Yes, I had raised four children to adulthood, but they were all “perfect” by world standards. They were all healthy at birth, and we lived the normal life of a family with kids who played soccer, excelled in school, had friends, became those “I’m smarter than you are” teens we all know and love. They moved on to living their own lives as adults. We had no experience with children with special needs, either medically, physically, or mentally. We were walking into the unknown and had no idea what to expect.
Doing our due diligence, we learned our lives were going to change dramatically. Our days would be filled with doctor appointments, physical therapy, occupational therapy, pulmonary therapy, as well as emotional and developmental delays. Long days that would leave me exhausted and frustrated. Long days that would also leave me filled with such joy and amazement.
What I didn’t expect or know was the incredible blessings these imperfect children would be. And this is where I struggle to find the words to express what I want to say about Cara and Emma.
Cara has now been home two years. We celebrated her 2nd “gotcha day” on February 8th. We brought home a tiny, frightened 6 year old, developmentally about 3 years old, who has grown into a confident, outgoing, smart and funny, makes me laugh every day, 8 year old. She is a joy and a treasure.
Emma has been home 3 1/2 months. I could talk about Emma all day for a week and not be able to tell you all the progress she has made. She amazes me EVERY.SINGLE.DAY!
In May of 2014 when we were finally able to visit her in her orphanage for the first time, they brought us this limp little girl, literally hanging in a staff members arms like a limp dish rag. She was 4 years old. There was no spark to her at all. Ron and I looked at each other again with a fear neither of us had ever felt before. We took her into the room where we were allowed to visit with her and spent 6 hours with her that first day. Her eyes were vacant, and she was unresponsive to anything around her including loud noises. She could not or would not make eye contact and would roll over into a position of sitting on her knees and rock herself back and forth, head almost touching the floor in front of her and then hyper-extending her neck so far back it would press on her larynx to the point it would compromise her breathing. I fed her lunch and half her meal came up and out her nose. There was no question ever that we would back out of the adoption, but we were both terrified. What if she never improved? How would we care for her? Could we provide her with everything she would need? WHAT would she need? We spent 5 days with her, and finally by the end of the 3rd day we saw some improvement. A hint of a smile, tiny little fingers wrapping around mine and wiggling their way into my hair.
Without knowing Emma, and knowing where she was last May, you might not see the changes that have come about over the past 3 months. Some of the changes are so subtle, unless you spend every day with her, you might miss them. But for Emma, they are huge. The limp little dishrag now crawls and pushes herself all over the house on her back. The little girl we were told was cognitively a vegetable, will pick up a hair brush and put it to her head. She will roll away from me on the floor if she is tired of me trying to stop her from hyper extending her neck, so she can do it where she thinks I can’t reach her. She pulls herself up into a standing position. She pets the cat when he lays down next to her. She turns her head to see where noise comes from, and laughs and giggles when you tickle her. She cries when she is hurt, instead of laughing inappropriately because no one ever came to help her in the orphanage. She no longer pushes me away when I pick her up and now snuggles her little face into my shoulder. She reaches for me to pick her up when she wants to be held. She started crying huge, heart wrenching tears after quietly spending the first 3 nights home in her crib because she no longer wanted to be in a crib. She responds to her name, and understands no, eat, cat, dog, and a few other words. We believe she has said mama and dada, but we are not 100% sure she knows what they mean. She is learning to play with toys, and has a favorite. We’ve taught her to clap her hands, and clap one of ours. She now splashes in the bath and enjoys having her hair washed. She is holding her head up better and for longer periods every day.
She sees her physical therapist for an hour three times a week and works hard. She now has AFO’s (ankle-foot orthotics) to stabilize her feet and help her stand. Her knees, which she could not straighten, are straightening. She can stand for longer and longer periods in a stander, fully weight bearing.
She has been evaluated by a speech therapist who believes she may someday speak, and chew her food. She has had a barium swallow study that show the muscles in her throat aren’t strong enough to fully swallow her food, which is why it comes back out her nose. This has improved dramatically with v-stim therapy to strengthen those muscles.
She has been to see the ENT to rule out bad tonsils and adenoids, which are not causing her problems.
The ophthalmologist discovered she has pale optic nerves, which indicates optic nerve damage, most likely caused by a lack of oxygen at birth, but it is obvious she can see. Until she can communicate a little better we won’t know well she sees.
She has seen the dentist who wants to see her in 3 months to see if she will allow someone to clean her teeth. I’m thinking sedation will be needed.
She has sleep apnea and has an overnight sleep study in her future.
The visit to a pediatric neurologist confirmed the diagnosis of cerebral palsy and microcephaly. An MRI of her brain shows damage in the back of her brain consistent with an injury at birth, which we suspected. This was not news to us, just confirmation. He told us statistically, children who are not walking or talking by age 2 most likely never will, but because he doesn’t know how much of Emma’s issues are due to neglect and how much were caused by a lack of oxygen at birth he has no idea how much she may recover. We continue to believe she will walk and eventually talk. We know of other children who have started walking and talking after age 2, one child as old as 8, so we know the possibility is there.
Have the last 3 1/2 months been easy? No! Do I enjoy getting up early every morning to rush off to this therapy and that therapy and this doctor and that doctor? No! Do I regret any of it? No!. Would I do it all over again? Yes! Am I still afraid? Yes! Would I have willingly prayed for these imperfect children? No… However, if I had allowed my fears to rule my life, I would have missed out on two of the biggest blessings ever offered and freely given.
I can’t explain what it is like to watch God’s miracles unfold right in front of my eyes. Seeing Him work daily leaves me humbled and awed. Watching Cara blossom into a healthy, confident little girl is amazing. Seeing Emma overcome the years of neglect and so quickly learn she can trust us to comfort her when she cries, feed her when she’s hungry, and just be there for her brings tears to my eyes. She has no reason to trust us. She has no reason to believe someone will comfort her when she cries, or hold her when she wants to be held. And she certainly has no reason to trust us enough to love us back. Yet she trusts…
These imperfect little girls have redefined the meaning of “perfect.”