I have a lot friends and family that have recently had babies. They are doing the up all night, dog tired, thing. Sitting and feeding and holding their babies. And if they are like me, they may be frustrated. I remember thinking with my newborns, I have so many other things to do, I am not accomplishing much sitting here.
With M, I have gotten to see first hand all the effects of what happens when what you ARE doing...doesn't happen. I know the emotional impacts of touch and meeting your childs needs are widely publicized, but in reality the impact is further reaching. I want to give you some examples of what you actually are accomplishing in your day.
- Each time you nurse, your baby is building muscles that are going to allow for speech.
- Each time you count their toes, they are realizing that they have feet, and one day will be able to walk without needing to look at them.
- Each time you switch sides nursing you are helping their brain realize they have two arms and two legs to use together in completing tasks, as each side takes turns being pressed against you.
- When you lift them to burp from lying down their inner ear, followed by their brain, is learning how to navigate changes in gravity and will help to keep their body balanced and oriented.
- Allowing them to hold your finger or grasp your necklace will help them regulate pressure that is necessary to hold items, like a spoon or crayon.
- Kissing their faces will acclimate them to scents and moisture that one day will be in their foods all over their faces.
I would add to that list, "As you help your little one bounce on their little legs, you are forming hip sockets that will not be easily pulled out of joint!" As I read her thoughts, I know I was encouraged, as it's easy to feel like you can't get anything done when you have a newborn, but as the days went by and I slowly became more competent again, those thoughts turned to reflecting on a very day to day basis on what Krassi missed out on. Evania's life is still short enough that we can count it in days (34 days old today!), and as I think about everything that happens during a single day, there is an ache in my heart for my oldest who had many days - thousands of days - somewhere around three thousand four hundred days - that were filled with, for the most part...nothing. (What a miracle it must have been for him when the baba program gave him a few hours twice a week when there was...something!)
In one day of life, Evania is nursed in the early morning hours while everyone else is (usually!) asleep when she starts fussing, is burped and changed between sides by a mama who nuzzles her neck and kisses her face, and rubs her legs and hands and fuzzy little head, and tells her it's okay when she's started to wonder if we're ever going to get to the other side during her diaper change. Then she's put back into her (clean, dry!) bed where she sleeps until she wakes and wants to eat again, and all the sweet snuggling repeats. This time there are brothers and sisters awake, too, who are cooing and fawning over her, and she's carried into a different room to nurse, and then laid on the floor to watch and listen in yet another room. Little people are constantly moving around her, talking to her, or to each other, and generally just making for a very interesting little circus around her.
Every single day is full for this tiny girl. All thirty-four of them, so far, and there's no sign of it stopping any time soon!
And I mourn for every one of those thousands of days that were not this way for Krassi.
And at the same time, I am finding that because of this, there is new and refreshed joy for me in being Krassi's mommy. Sometimes when we're out on the swing, or just sitting around in the living room, I am reminded that this boy has a family, and we get to be that family. It is humbling to realize that for some reason we have been given the honor of giving this boy a life that is full and watching him come alive within that.
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As we navigate the whole health insurance system (yes, apparently Minnesota really is a really good state to live in if you have a disability, and our county in particular is fantastic about connecting their residents who have special needs with services that are available to them) and the public school special education system (just for Reuben at this time), I've commented often to Matt about how many resources our society is willing to put towards working with people like these sons of mine. Sometimes I get to thinking about how very different it would be to raise a child like Reuben or Krassi in a culture/society where we did not live with the luxuries that we do here and now. I imagine us living somewhere where every one of us, including the children, had to work sun up to sun down to earn enough to satisfy, or attempt to satisfy, our basic needs. Countless people both now and throughout history have lived this way. I don't know how we would do that if we had to care for Krassi and Reuben along the way. And I got to wondering, is it only in a wealthy society that we can find value in people who can not contribute in tangible ways?
And then I realized that this is NOT just a current western/wealthy culture thing as we're reading through Deuteronomy on Sunday mornings - God's law is full of injunctions to his people to provide for and care for those who can not advocate for themselves - those who are helpless - those who can not on their own contribute to the bottom line. Even as I'm typing these words, my mind is filled with words from the New Testament as well concerning us:
...while we were still helpless, at the right time Christ died for the ungodly.
[Guess what - I had to look up where that came from because I couldn't remember beyond "Paul" which doesn't narrow it down much, and turns out it comes right after the passage that surrounds Evania's middle name!]
We are all helpless, useless to God, in that he does not need any one of us - his world is not going to fall apart if one of us messes up or doesn't pull our weight! But he cares for us anyway, and invites us to follow him in the work that he is doing, and second only to loving him with all of our heart, soul, mind, strength, is his command to love others, and to do it in the same way he does for us. God chose to love us, and to sacrifice deeply for us while we were helpless. This is not just a cultural thing, but loving and caring for the helpless - finding value in those who can not contribute to the bottom line - is a God thing.
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Having a child, and now two, who fall under the umbrella of "special needs" has made me prone to musing at times about what heaven will be like. We know that God will "heal all of our diseases" but living on a daily basis with these two precious people makes me wonder. Will heaven be a place where Krassi and Reuben are "fixed"? You know - so they're like me - able to walk normally and talk normally, and not shriek in odd ways at inappropriate times and places or lick weird things or have seizures or have an intense fascination with picking at other people's feet. I am, after all, the model of perfection, right? Or am I? As I dwell on these thoughts, without fail I circle back to recognizing that, before God, we are all so very, very flawed. And I realize I know so little about what the future after this world holds. What makes a person who they are? When Jesus was resurrected, he still had the scars in his hands and his sides - those wounds weren't erased. Will Reuben's chromosomes still be unusually shaped? (Will we still have chromosomes???) Will he suddenly be able to speak? Or be free from seizures? Why do I put such value on those things? Will the damage done to Krassi's brain when he was born prematurely be reversed? Or will those scars remain? Or what about the slow mis-wiring that happened over those many thousands of days of neglect?
I recognize that I really don't know what the future will hold, and my frail imaginations about what things will be like when they're "whole" or "right" is really quite self-centered. And I am filled with awe as I realize that most likely, the future of eternity with Jesus holds out something to all of us who will be part of it that is beyond our imagination. "...we shall all be changed." I was talking about this with a friend earlier today, and we were wondering about what the scope of the impact of sin really is on humanity as "all creation is subject to futility" (which, by the way, is another "HOPE" passage!! - see the middle of Romans 8). What will we be like when the burden of sin falls away from us? Perhaps the things that are seen as wrong/lacking/missing in people who seem to so obviously need "fixing" will seem less than petty in comparison to what it means for all of us to live in the "freedom of the glory of the children of God." Doesn't it fill you with wonder and expectation to think that what God is going to accomplish in his people is way more than we can imagine?!
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In the meantime, I am so grateful for these living, breathing reminders of my own lack of perfection and for the daily (hourly! what am I talking about - moment by moment!) opportunities to put into practice what God has called me to - trying to model in my own small, imperfect way his love for his creation, and through my own successes and failures to do that, gaining an ever-richer understanding of the height and depth and width and breadth of his love.
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