Q: Do you feel especially equipped to be Katerina’s family or is parenting a child who has experienced such severe neglect something most families could do?
A: This is an excellent question for several reasons, and one that is not easily answered.
I have been feeling very torn about how smoothly this transition has flowed for us. I promised to tell you the truth about how it goes, and I have done so. We’re not covering up some unmentionable struggles or other. Katie has already exceeded our best expectations for her medical and emotional response to coming into our family and all that entails.
After an adoption fraught with extremes of emotion, we feel an enormous sense of grateful relief. Relief like the relief a mother feels at the safe arrival of a baby after a tenuous high-risk pregnancy and delivery. Relief that there is no more need to prove to everyone and their grandma that being loved and cared for as a child in our family would be better for Katie than languishing in her orphanage bed. As we joked when an airport policeman gave Joe a prolonged evil eyeball, “Maybe he suspects us of attempting to smuggle a child with severe special needs out of the country?”
The greatest pressure on me has come from the ongoing responsibility that God has laid on me to blog and answer emails. And of course, there’s the relentless pumping schedule. Not complaining, not resenting, just relating this part of the story.
So why feel torn? Why not simply gratitude for this mercy of God??
Why did I feel the same unease years ago after discovering that we were expecting twins? There were really two babies growing and wiggling inside my body! I had always hoped for twins!
So…torn? Conflicted? Uneasy? Why?
The first announcement I made that day was to my father. I knew he would be ecstatic with us!
There was another phone call I needed to make before more time went by. I needed to tell her before she heard it from someone else.
How could I bring myself to dial my older sister’s number and tell her that although she had lost baby after baby–was it nine or ten by then?–that six months after John Michael was born, I had conceived two babies?
A few days ago, when I called to ask her permission to tell this story here, just relating this memory brought fresh emotions back to both of us.
And that is what I feel when I think of some of the adoptive families who may have stopped by our blog recently, families who have been laboring through intense, long-term post-adoptive struggles.
My feeling of being torn comes from the joy of seeing our daughter open up and respond to our love, mixed with the sorrow of knowing that our very public joy could intensify the distress of another adoptive family. I did not foresee this when I committed to openness about our difficulties after we brought Katie home.
There are two different types of stories on Reece’s Rainbow.
A large majority of the children you can see listed on Reece’s Rainbow are part of a story that will end in an adult mental institution if a family does not adopt them. These children will grow and progress enough to learn to walk and talk and feed themselves, and often by the time they reach the age of transfer, they are toilet-trained. They are independent and have formed their survival skills.
Katie’s story puts her in a minority. She and the others on her floor never progressed to a point where they could have been transferred. They continued to be treated as babies and toddlers, although some of them have even reached their teen years.
Ironically, prospective adoptive families might possibly consider the profiles of these two different types of children, and think, “Wow, I’m not sure I could handle a child like Katie. The children in her condition would be so much more challenging, because she will need total care for the long term. But these others, the healthy ones, they look like they would fit into our family much more effortlessly. They can already do so much for themselves, so it will be less demanding of our time and attention than a more severely disabled child like Katie.”
It is ironic because now I look at the struggles of some of the other families with the behaviors and attachment issues of their bigger, healthier, stronger, more independent adopted children, and I think, “Wow, those children look so much more challenging than Katie.”
So to more directly answer your question, yes, we see many ways in which God especially equipped us for this particular child, just as He has for all the other children He has sent us. God also especially equips other adoptive parents for their particular child or children. In fact, the more adoptive families we meet, the more strikingly obvious this becomes to us.
Most of you do not know us in real life. Most of you will never meet us or visit our home. We would love it if you did, because if you have any lingering grandiose ideas about who we are, you would be properly underwhelmed by us and our house. And once people grasp how very ordinary and unpolished and unsavvy we are, they can more clearly see what a great thing God has done.
It should also be reiterated that every child is an individual, so no other child will be exactly the same as Katie, not even the other very tiny and malnourished children who are still waiting on the top floor where she was.
That being said, we unhesitatingly believe that many of the nurturing families we know could do what we are doing. We are truly blessed to know many families who have an abundance of what a little child with Katie’s history and health condition needs to blossom.
There are so many wonderful adoption resources that prospective adoptive parents should use to educate themselves–online articles, international adoption clinics, books, videos, and conferences. The resources that have been most valuable to us so far overall have been the video course our home study agency required us to take, an online post-adoption parent support group, and the blogs of other adoptive families.
Medically, we would strongly suggest that other families adopting children like Katie use the services of an international adoption clinic like CHOPADOPT. By the time we picked up Katie, we had been well prepared for many difficulties, and were ready to take them on. We would love to speak by telephone with anyone who is seriously considering making the commitment to adopt a little child in Katie’s condition.
Q: Can you explain the practical implications of parenting your fragile baby bird?
A: Katie is very fragile, to the extent that if she rolled off the bed, many of her bones would be crushed. We take extra precautions to protect her, and this awareness of her vulnerability is quickly becoming part of our family’s inner sense. By the way, this inner sense will be of tremendous value to all seven boys in our family.
She is very weak. She moves in slow motion. She has behaviors from living in the institution, but they are all very pitiful and gentle repetitive movements of her fingers around her face and hair. She also sucks on her tongue, which causes her to drool. We have accepted that these habits could linger for months, if not years, and they don’t bother us in the least. Why would they, unless we refused to understand or accept her history? She is not injuring herself or others, or damaging property. So…big ol’ hairy, scary deal.
Right now, she needs to be physically cared for like a baby. There are very minimal practical differences at this point, mostly involving her need to be lifted from underneath and never pulled up using her arms, legs, or underarms. I brush her teeth and feed her through a tube instead of by bottle. Additionally, she is nine years old and does not nap, even if she is lying down next to me while I rest.
Her tube feeding and schedule is neither grueling, burdensome, nor hard. It would be even simpler for a mom who was not pumping, as I am. Replacing an NG tube after little fingers have pulled it out is easy and fun once you know how. And it provides a neat opportunity for an older sibling to be a helpful nurse’s aide as well as to observe the proceedings.
Katie needs to thoroughly bond with me, so I keep her with me as much as possible, carrying her about, keeping her nearby while I work, curling up next to her if I lie down to take a nap. We were told that the more dependent the child, the faster the bonding process typically happens, and from our experience, that is proving to be true, although of course it must be said that it does not guarantee anything for the other dependent children from her orphanage. Katie is very sweet and responsive, and makes a pleasant little companion throughout the day.
She handles strangers well if there aren’t many of them at a time. She also does better if they keep their distance and don’t face her directly or otherwise send her signals that they want her to interact with them. She is making slow but detectable progress in this area. I am staying home from the Sunday meeting for the time being, as we had previously planned, until we see that she can handle it.
We did not know that she would be so responsive to our affection. It needs to be stated again that nobody can predict how the other children on her floor will respond to their families’ love. We fully expected to be caring for a child who cried when she was moved or touched, not one who progressed quickly to curling up toward me and reaching out toward my face, laughing at little teasing voices and games, smiling at having her hair washed and combed and her teeth brushed, being delighted when she wakes up in the morning and mama comes to get her. She is a pure joy.
Although we are used to her now, she truly is surreally tiny. We try to remember to warn visitors ahead of time to prepare themselves for a shock. She is tinier than she appears in photos. There is another side effect of her shocking size you might not be aware of. I have had countless opportunities to answer questions and tell her story while in public with her. It is fascinating to witness reaction after reaction to her condition. The reactions have ranged from utter shock to disbelief, professional politeness, pity, instant affection, curiosity, admiration, distaste, respect, awkwardness, and awe. My personal favorite? A genuine, “How could this happen?” I also had the comical experience more than once of waking on the other side of the hospital curtain, hearing other night nurses come in and take a peek at her while they thought I was sleeping, whispering, “Oh my word! She’s so tiny! She’s cute!” We hadn’t foreseen this side of being Katie’s family, but we welcome every opportunity nonetheless. We would urge other adoptive families to be ready with some statistics for interested people.
Babies who are born with special needs in the former Soviet bloc countries are placed in orphanages at birth.
Sometime between the ages of four and eight years old, depending on the child and the country, they are transferred to an adult mental institution.
Adult mental institutions in Eastern Europe are not fit places for any human beings, let alone the most vulnerable of all children.
Eighty percent of these little ones die within the first year of transfer. If the child’s diagnosis is Down syndrome, that percentage rises to ninety-five percent.
The orphanage our child came from was not one of the better ones. [The day I joyfully put my child into an orphanage is the day I have permission to say the words “good orphanage.”] Our child’s needs, including her need for human contact, were criminally neglected from the time of her birth, because she was born with a disability that is stigmatized in that culture. Ideas have consequences.
Our culture is not morally superior. Prejudice against those with disabilities is alive and well here, especially against those with cognitive delays combined with distinctive physical features. Here we manifest our prejudice by hunting them down and destroying them before they’re born. Did you know that for a prenatal diagnosis of Down syndrome, the abortion rate is over ninety percent?
Some children who are extremely neglected simply stop producing human growth hormone. They stop growing. In addition to this, our child was starving due to not receiving the nutrients she needed. She is now healing from the damaging effects of severe, long-term protein-energy malnutrition.
Most people who see Katie in public will not see her through eyes of love as all of you do when looking through my camera lens with me. Katie has very obvious special needs. We are glad for our other children’s sake that they cannot now escape the startling realization that their sister, who will be written off by many others as severely disabled with nothing to offer the world, is actually a richly complex individual who has her own subtle ways of communicating and an enormous capacity to give and receive love and joy. They will know this unique person closely, and be the wiser and wealthier for it.
Q: What would you say to someone who asked you the best way to count the cost of special-needs adoption ahead of time?
A: We would challenge you to educate yourself about the possible difficulties. Look the difficulties full in the face. Don’t ever shy away from the truth; the truth is your best friend if you will accept it. It also has a way of separating the wheat from the chaff.
Adoption work is hard!
We joke about PTASD. Post-Traumatic Adoption-Stress Disorder. Ha. I could say more here about intense spiritual battles with discouragement, fear, and other sulfurous poisons, but our mighty God won every time and that is what matters now. We would never enter this battle if God didn’t go with us.
Adoption work takes time!
If we hadn’t adopted Katie, we would be doing other things with our time. God decided that those other activities are not as valuable as the life of this child.
Adoption work is expensive!
I was reminding Jane of some of the miracles we’ve witnessed over the past year. I explained that we’ve heard many reasons people give for why they can’t adopt a child, and that most of those reasons don’t impress us as much as they used to. You see, we fit into nearly all the categories ourselves and probably more so than they do.
…we don’t have the time, it’s not a good time, we wouldn’t have the patience for unusual behavior problems, there are so many special needs that intimidate us because we don’t know anything about them, we don’t have health insurance, it looks like such a confusing and complicated process, we don’t have it all together all the time, we’re too busy with our other children, our house is too small, and above all, we couldn’t afford it…
Special-needs adoption created needs we never had before in our lives. Using one means or another, God has continued to meet and exceed every need without exception. As Jane said to me yesterday, “It would have been too expensive for us if we didn’t have God.”
Adoption work is life-changing.
Our family can attest to the fact that all the changes have been for the better. Yes, harder, but we started with the mindset that hard is not bad. Those of us who have the ability to assess it would say that this has been the hardest and best year of our lives so far. We needed to experience in real life what our heads had known to be true all those years. We needed our unbelief exposed and our view of God enlarged. We needed “life-changing.”
You see that there are difficulties.
Now look at the true and living God as He has revealed Himself in Scripture.
Which is bigger and stronger?
If the answer isn’t clear to you, look again at God. Keep looking. Keep looking. He is why we have Katie and I am still in my right mind!
Bonus Q: So ready to adopt! Praying God will change either my heart or my husband’s. Were you and Joe on the same page from the beginning? Should I just pray and say nothing to my husband?
Hopefully a bonus A: Yes, Joe and I were on the same adoption page from before the beginning, but knowing that fact truly doesn’t help someone in your shoes. What does help is knowing the truth that God has His ways of moving people from where they are to where He wants them to be. And that goes for our husbands, too. I have marvelous tales to tell about that subject, one day.
For now, I urge you to do a few things.
Recognize God’s right to tell the story of your life as He pleases. Ask Him to keep your heart soft and keep your YES receptors open to Him, no matter what He decides your story will be. Just keep saying YES to Him. You can have full confidence that He will lead you, and no mistake.
If you are drawn to a certain child on a photolisting site, print out two photos.
Hang one photo on your refrigerator or somewhere else you can’t miss seeing it many times a day. Love that child with all your heart by praying fervently that God would send him or her a family. You know enough now to be able to pray lots of other things for that child, too.
Fasten the other photo to a mason jar and set it right out in the middle of your family’s activity. Collect all your loose change in it until it’s full, and send it off to that child’s fund, or to a family who could use the adoption fundraising help. Better yet, tell your children that once they have filled the jar, you will match whatever they put in there, no matter how much it is. Knowing that people will put their money where their hearts truly are, every gift to our adoption of Katie felt to us like a giant vote of confidence from the giver, and through them, from God.
I’m out of time, so more photos will have to wait. But I want you to see two of the reasons I am having the time of my life!