Saturday, March 31, 2012

Do Something Wonderful

Sometimes I wonder about my biological, neurotypical children.  I worry that we have short changed them by the choices that we have made as parents.  I worry that they will be damaged or resentful, because we have demanded that they make hard sacrifices.  We have expected them to share everything.  We have dropped them off in Crazyland, with no directions for how to get back to where we came from.  Oh yes.  I forgot to tell you.  We live here now.

Sometimes I think we look at them with our tired, half-crazed eyes.  They see us grasping at anything that might heal trauma, or restore hope.  They hear us saying, How dare you?  You with your unscathed brain, your healthy body and dare you not live your best life?  How dare you not do something wonderful?  

They see firsthand what the rest of the children only hear about.  Appreciate your dinner.  There are children starving in another place.  Be thankful for what you have.  Lots of other kids have nothing.  They see the gaps and the holes, created by want and need.

And then they go out and do it.  They are amazing, and wonderful, and remarkable.  Only they're not.  They're the same as any other kid who has a sound mind, and body, and a hand up in the world.  They just realize what a difference that makes, and they don't always take it for granted.

Tuesday, March 27, 2012

A Day in the Life of Baby S, aka Cake Walk

Enjoying some kitty love
I realized lately, that I haven't updated on, or even mentioned our newest addition for quite some time.  This is probably because in many ways, she is my easiest, least complicated child.  And that's saying a lot, when you consider how complex her care can be.  I thought I'd give you a little "day in the life" of Baby S, and you can decide for yourself.

When Little S came to us in June last year, she was taking three heavy duty anticonvulsants for seizures twice daily, a muscle relaxant for spasms three times daily, and anti-drool med to help her not drown in her own spit three times daily, a reflux med, a laxative, and sometimes a sedative for inability to sleep or soothe.  She was also exclusively fed a highly specialized synthetic formula for children who are allergic to EVERYTHING via a feeding pump through her G-tube.  

Baby S is in diapers, and for the most part is easy enough to care for in that respect, when she's relaxed and in a good mood.  When she's stressed or grumpy, it's another story, with legs that stiffen into rock hard positions, pulled up against her torso, or straightened out stiffly with her ankles and knees locked tightly against each other.  Dressing and undressing her is like a combination of trying to dress a Barbie doll and a rubber chicken. 

She is non-mobile, so she must be carried and moved about all day, changing her locations and positions often to avoid damage to her skin and boredom.  She cannot sit up or hold her head up well (think wobbly newborn), so holding her is a challenge.  She's both stiff and floppy at the same time.  And she bites.

She is nonverbal, yet she is packed full of emotions, and frustrations, and opinions.  She is easily bored, and has very little means to soothe or entertain herself.  This means she is frequently irritable and fussy.  She's easy to redirect and cheer up, but nothing holds her for very long.

She is cortically blind, which does not mean she can't see, but that her sight is limited by abnormal brain function.  We know she does not see well at distances or in low light.  She also seems to prefer certain things to be in certain spots in her field of vision.  So again, she gets easily bored when things don't line up just so for her.

For the first several months, Baby S screamed and raged  This was because she is a human being, and no matter how delayed she may be, she knew she had been removed from her home, and placed into a strange place.  She missed her Mama, and of course she would.  She is not a goldfish or a piece of furniture.  All day long we struggled to keep up on the endless round of meds, feedings, exercises, diaper changes, doctor visits.  All night long we listened to S fret, and fuss, and scream.  Her brain is by no means normal, and it did not seem to process the need for sleep.  The only time she slept was when she would be knocked out cold by her potent cocktail of drugs.  This gave us a few hours of respite in the mornings and evenings, but that was generally it.  The rest of the day she fussed and raged.  The rest of the night she fussed and raged.

And then things began to change.  The very first big change was that Little S began to sleep more.  Some nights she actually slept right through.  For every good night, we could be sure of a bad day.  With a full night's sleep in her tank, she had plenty of energy to fight us all day.  For every bad night, we could expect a quiet day, as she lay back in her chair, dazed and dopey.  But over time it began to smooth out.  Most nights she slept, and when she was well rested, her mood improved during waking hours.

More things began to change.  We began taking her wherever we went.  We included her in the family activities.  We let her taste bits of food.  We made her sit up and be engaged with the world around her.  We reprimanded her sternly when she had hissy fits.  Or when she bit someone.  In short, we began to see and treat her as a little girl.  

Lately the changes have been huge.  She is no longer pump fed her funky formula.  Instead, she is fed plain old normal food that I puree and squirt into her G-tube with a large syringe.  She gets tastes by mouth if she wants them.  She has grown about five inches and gained about ten pounds.  She is being weaned off her cocktail of meds.  Currently she gets two anticonvulsants, but another one is soon on its way out.  She is taking about 60% less muscle relaxant with no noticeable problems.  Her anti-drool and reflux meds are gone.  Her laxative is reduced by about half.  She never takes sedatives.

And it has been crazy lately.  This poor little tyke needs kiddie rehab.  It's shades of the first few months, with no sleeping, and constant misery and anger.  Learning to live outside the strange little boxes these drugs make of her days, is very hard on her.  But if we can do it and keep her healthy, we want to.  The drugs have massive effects on the quality of her life, her ability to learn, and her physical health.

Next on the horizon is major orthopedic surgery to reconstruct her malformed hip joints.  It's pretty typical stuff for kids with CP, but scary new territory for us.  So if you think of us and Little S, throw up a prayer.  We so want her to be able to reach her full potential, and to be a happy contented little girl.  Pray that we will have the diligence and wisdom needed to care for her.

As for whether she is the easiest of my kiddos?  Well I will say this much.  She can't get up out of her chair or bed and hurt anyone or break anything while she rages.  She can't form words, so she can't cuss me out or lie to me.  She keeps her refuse neatly in her diaper.  Yes.  Absolutely she has many of the same trauma issues that many adopted children have.  But she is confined to glowering at me, crying and screeching, and a bit of intentional drooling.  After what I see in this game, I say, "You, Baby S, are a cake walk."  An absolutely adorable, sassy, little cake walk.

Wednesday, March 21, 2012

Teen FB Update

Baby Boy caught Boo leaving her FB account open.  Suddenly she had a new interest in her info.  Along with playing the flute and clarinet, she enjoys biting the heads off live chickens.  It would have been better if he had not misspelled "chickens", but he was hurrying so I suppose one could excuse it.  This is what I turn up when I FB stalk these two.  I may be wasting my time.

Am I Happy?

Good golly, I did it again, just this morning.  I asked myself if I was happy.  And the first thing that came to mind was that there are a few things in my life that make me unhappy.  Umm, no.  Either I am or not.  Things (external circumstances) do not make me happy or unhappy.

There's this place I love.  They call it the happiest place on earth...and maybe it is.  For some people.  But I've seen a lot of misery there too.  I really think you carry your happy in.  If you carry in mostly miserable, it will not be any different than any other day in any other place.  If you carry in mostly happy, it will be awesome.

So yes, I am happy.  I am also tired, mildly ill, a little bit overwhelmed, a little bit discouraged.  But good golly, I am happy.

Tuesday, March 20, 2012

Trying to Keep Lent

So I thought I'd write up a little progress report on my Lenten fast of electronic entertainment.  Some of it has been very easy, and some, not so much. 
  • Giving up TV has been a breeze.  I've been reading more, and definitely turning the light out to go to sleep much earlier.  Not that I'm getting more sleep.  Baby S is changing up meds, and thus not sleeping much, so though the lights are out, I am not necessarily sleeping.
  • Giving up radio in the car is pretty easy as well, and I have actually been remembering to bring along my CD's on occasion.  I have also become very familiar with the latest Florence and the Machine album, as it is the only one that currently resides in my car.  A teen has forgotten it.  It's pretty good, except for tracks 5 and 6.  They won't play due to a big scratch.  
  • Next up...the computer.  This has been more complex.  Essentially, turning off the computer for communication is a lot like saying to my family, "I'm giving up all of you for Lent.  I'm going in my room now.  If you need me, I will not be available.  See you in forty days!"  It's fairly easy to give up mindless surfing.  Giving up communicating with real people that I love?  Maybe not so healthy.
  • And then there's Faceb**k.  It truly does seem to have a life of its own.  And generally I am doing pretty well here, with a few snags along the way.  Again, I am trying to confine myself to genuine communication.  I stay off my wall and my news feed, and it is helping me practice the discipline of cyber silence.  This is to say I cannot leave a bunch of clever (I think) comments sprinkled about my friends' walls and photos.  Or argue politics.  Or post silliness in the form of statuses...stati (?).  Though I have had to be on FB daily still, because two of my teens have been allowed to get them just this past week, and I admit I feel the need to FB stalk them.  My surveillance has turned up nothing interesting yet.  Really.  They are very boring.
And that's pretty much it.  My Lenten fast does not seem to be making me more spiritual.  It does not really pinch enough to remind me much of Christ's sufferings.  It has however, been a good exercise in learning how I use media, otherwise known as "How I waste time and fill my brain with rot."  Surprisingly, much of what I do in regard to evil technology is very good, and I will cheerfully pick up again in a couple of weeks. 

Monday, March 19, 2012

Ungrateful Children

Lately I've been meditating on the concept of thankfulness, particularly on how it pertains to our teens and young adults.  So often I hear parents, myself included, launch off into a tirade of how ungrateful their children can be.  It seems to come to a head in the teen years, because as parents, we find ourselves living with these huge, able bodied people that demand so much from us, every hour of the day.  We thought babyhood and the toddler years were hard.  No one warned us about this.  And through it all, they seem to take for granted most of the things we do for love, all the endless sacrifices we make for them.  It's enough to make a person crazy, and my children have seen more than a little bit of my crazy side over this matter.

As aggravating, and disappointing, and heartbreaking as this stage may be, I submit to you (gentle reader), that this may be proof that we are doing our job well.

In my experience, there are three sorts of children.  Two of these types come from hard places...children of trauma if you will.  They are exactly identical in that they are raised up in trauma, neglect, abandonment, deprivation.  They learn that parents and other caregivers are not willing or able to meet their basic needs, or protect them from the harshness of a cruel world.  

The first child never escapes in childhood.  They suffer all through their youth, and no one ever plucks them from their situation and teaches them that this is not how things were meant to be.  They may sense it, and resolve to be different themselves when they are the parent raising children of their own, but they never experience it for themselves.  Any gratitude they may feel for the tiny scraps they were thrown is a perverted version of true thankfulness.

The second child begins the same, but somewhere in their youth, someone intervenes.  They provide stability, support, and nurture.  The child experiences something different, and when they are able to receive it, they also experience gratitude.  They know the contrast, and they are thankful that their life is not what it once was.

The third child is not a child of trauma.  They have received attentive care all their lives.  They feel nurtured and safe.  Every opportunity that can be purchased by sacrifice and hard work, has been bought and paid for on their behalf.  They breathe this like air, and drink it like cool water.  The thought that life could be very different only skitters across their brain on rare occasions.

It makes me sad that some adults are struggling to raise their own children differently than they were raised.  I know daily they dig down deep into empty places, and try to find what their babies need.  They allow their children to feed off their own lives, and find themselves scraped clean of everything good and nourishing.  In the end, they end up starving both their children and themselves, like a woman in a famine zone, with a skeletal baby suckling at an empty breast.

It makes me sad that some children are so very grateful for basic necessities of body and soul, because they have experienced such hunger.  It may look pretty, to see a child behave thus...but I don't like to think of how this pretty picture came to be.  It certainly does not gratify me as a parent.

As we teach and model the virtue of a grateful heart to our children, may we pray that they continue to be a little bit ignorant and annoying.  May they breathe and drink our love and provision, so that they truly only realize how we have laid down our lives for them, when they lay down their own lives for others.  May they appreciate our marriages when they sacrifice for their own spouses.  May they appreciate our parenting, as they raise up their own children.  May they be so well nurtured and nourished that they have deep wells from which to draw.  And may they have a house full of ungrateful teens of their own some day.  It will make me deeply happy, and grateful, and a tiny bit entertained.