Now it’s my turn to ask you a question.
Q: Which of the following categories contains the true reality?
Sometimes I am wakened in the night by a knock on the door and Laura’s words, “Katie’s fussing.” This is usually because she is sweaty and needs a lighter set of pajamas.
Sometimes the knock alerts me to the fact that Katie’s feeding pump is beeping, which necessitates an attempt to clear my sleep-fogged brain enough to troubleshoot.
Her dental condition is a disaster of the very costly sort.
Her breath still smells like garbage. It’s overwhelmingly bad in the morning before her teeth are brushed.
Right now, she has some mild upper respiratory congestion. This means that when I get her in the morning, her nose is caked with greenness. If she has been rubbing at it, there is a thin crust all over her face. She has plugged tear ducts, which means her eyes also have crusties in the corners.
The combined effect of the drooling, the mouth breathing, and the scurvy is that she leaves brown drool spots on her sheets and all around her mouth.
Sometimes when I go to get her in the morning, I find that the port of her tube came open and the pump slowly forced milk out onto her sheets, so that they must be changed and she must have a bath.
Sometimes I find that she has pulled her tube, which has the same effect on Katie and her sheets. But of course, I also must then go through the process of putting the tube back down.
Her fingers fluttering around her mouth and hair means that her hands and hair smell like garbage shortly after washing said mouth, hands and hair.
I have to constantly be on the watch when I am feeding her, because her hand can move quickly from her food-y mouth to her hair.
Her skin is dry and tight as a result of long-term protein deprivation. I massage it with coconut oil after I wash her and before I dress her.
She is adding considerably to the load of dirty diapers our family produces every day.
She is with me during the time that used to be my quiet thinking time. She is with me and she needs interaction.
She has many odd behaviors. She still has her little tongue-sucking and finger-fluttering habit. She now plays with the tape and tube on her face, causing the need to replace the taping job frequently. When she is upset, she still bites on her wrist. At times when she is feeling calm and relaxed, she squinches up her eyes and face. Sometimes, when she is overcome with happiness, her eyes widen and she stiffens and jerks her arms around. She doesn’t regulate her emotions very well.
Her lifelong habit of pushing everything away from herself means that it is her first automatic response to anything that comes into her space, even if it is something she wants.
Katie will be either a therapist’s dream or a therapist’s nightmare, depending on whether or not they really like their work. She doesn’t have many skills, but boy oh boy can she do those skills the wrong way! She has a very long road ahead of her.
And it will be expensive.
Bringing her into our home means that we now have the equivalent of baby twins with special needs, one much more delayed than the other, but both still needing total care.
This child’s presence adds complications to our family’s life.
Some would look at that list and think that those are the cold, hard facts, and would conclude that the obvious true reality is that Katie is a burden on our family.
It gives me an enormous, deep and pure joy, unlike any other I’ve experienced…
…to take care of Katie’s night needs. For nearly ten years, she had nobody to care for her night needs in the orphanage.
…to fix her feeding pump in the night if necessary so that she can continue to receive nourishment while she sleeps. This nourishment is healing her atrophic skin, her scurvy, her porous bones.
…to set the appointment for a consult with her dental surgeon. When I came back from Bulgaria in August, I said emphatically to Joe, “When you see how bad her mouth is, you won’t mind whatever it costs to get it taken care of, it will bring such joy for her sake.”
…to see the incomparable sunshine of Katie’s delight when I walk into her room to get her out of bed in the morning.
…to gently brush the teeth of this child whose teeth were never brushed before we brought her into our family. To rinse out her mouth and make it feel fresh. To put strawberry Chapstick on her lips.
…to gently wash the crust from her eyes, nose, mouth, and face. Cleaning her up would bring joy to my heart even if she didn’t smile and laugh the whole time.
…to wash her mattress and give her fresh sheets. A vision of the soiled sheets in her orphanage bed rises before me; it was obviously not changed during the week I was there in August.
…to make her comfortable by giving her a sponge bath and washing her hair. I love massaging coconut oil into her skin with warm and soothing hands.
…to keep this child in clean and dry diapers. Triumphant satisfaction may be a better description for how I feel every single time I change her diaper.
…to see how she has learned to love my presence. She is strongly bonding to her mama. Out of this growing bond comes a growing ability to teach her what she didn’t know she could learn.
…to notice every time she ceases her repetitive behaviors.
…every time she smiles or laughs. Her face is transformed and the giggles come rippling out of her. We love to make Katie laugh!
…to see her slowly learn to stop herself from biting her wrist, and instead look up to my face and complain to get my attention when she is feeling upset. This is as close as she can get to saying, “Mama!” when she is unhappy. “Mama!” is what I help her lips to say while I say it aloud, every time she cries and chews on her wrist.
…to watch her gradually learn to stop herself from pushing my hand away.
…to see the progress Katie has already made in her gross and fine motor skills. We can hardly wait to see how far she will go as the right therapists train us in how to help her best. That long road ahead of her is full of the joy of hard-won accomplishments, and we get to watch the miracle unfold.
…to see how God tenderly cares for every one of her needs. The latest? We had insisted on using some of Katie’s care fund to pay to ship all that adaptive equipment the 1500 miles to our home. Only to hear a few days later that our friends’ boss had offered to ship it as a kindness to us! They crated it all and it is on its way!
…to witness the unfolding of the relationship between Katie and her sister Verity. To hear the older girls relate that they woke up to Verity standing up saying to Katie over and over in her cheerful little voice, “Hi Katie! Hi Katie!” and hearing Katie’s giggles in response.
…to experience the wealth of complexity this intriguing human being adds to the already-complicated blend in our family. We don’t hold simplicity as the highest goal of life. It seems to be a cultural fad right now, fitting neatly with its desire for convenience, but we don’t see a Biblical mandate to keep everything as simple as possible. Simplicity often plays a supporting role to the higher goal of loving obedience to Christ, but setting it as our highest goal would undeniably have kept us from that obedience. And would have robbed us of the organic beauty of the complicated interplay of relationships within our family.
There is an indescribable joy in caring for a child who spent so many years not receiving proper care. Katie is our precious reward from God and He has sent a whole host of gifts along with her. That is the true reality.
Throughout her life, Katie will have many eyes on her. We will have many eyes on our family. From the outside, we may look like a large family with two “mistakes” trailing along at the end. Period, end of story.
Most folks will be casual observers.
They will feel free to make unquestioned, unexamined assumptions about Katie, but won’t care enough to come closer and learn the truth about her and her story. The truth which we are eager to share.
Some will be unfriendly.
They will be of the determined opinion that the very idea of her existence is an affront to decent society.
Some will be uncomfortable.
They will give her sidelong glances, look the other way, and hope we don’t bring her close enough to them that they feel obligated to interact with her. When we are out of sight, they will quickly replace us with something more comfortable and familiar to their minds.
Some will be intrigued.
They will give her a closer look, and will not rest until their questions about her are fully answered, and they have learned the truth. No matter how much it will stretch them.
And some will be immediately drawn to her.
They will give her a wholehearted love, and will be rewarded in return in ways they could not have foreseen.
Those who turn their faces away have chosen loss.
But did you know…
…that regardless of the responses of others to her, the true reality about Katie and her story will not change?
“And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me.’”
“For those who live according to the flesh set their minds on the things of the flesh, but those who live according to the Spirit set their minds on the things of the Spirit. For to set the mind on the flesh is death, but to set the mind on the Spirit is life and peace. For the mind that is set on the flesh is hostile to God, for it does not submit to God’s law; indeed, it cannot.”
“…while we do not look at the things which are seen, but at the things which are unseen. For the things which are seen are temporary, but the things which are unseen are eternal.”