10/31/13

One Year Ago Today







One year ago today we were on our way to Mexico.
We were spending time together as a family, while we drove south.


Our family one year ago.


Something special also happened one year ago today.
Miss Cece's paperwork FINALLY went to the judge and he approved us to be her forever family.
We didn't actually know that this had happened on Oct. 31 until we returned home 7 weeks later and opened our mail. 




One year ago today, this little girl officially became our daughter.  



10/25/13

The Insecure Son




         Holding onto a Strawberry Shortcake book, little sister crawls up on Mama's lap and snuggles in close.  Across the room Elijah notices.  A look of betrayal, fear and horror crosses his face and he fights the urge to cry.

Holding back his tears, he rushes to mommy's side.  He insists that little sister only get one book.  Just one.  No more.

Mama invites him to sit up on her lap too, but that would be giving up half of what rightfully belongs to him.  No.  He will wait.   He tries his best to wait patiently for the book to end.
He fidgets.  He moans.  He sighs.
He slumps face first on the floor.
He starts to whine,
 then rant,
 then full on rage.

Like a jilted lover, his jealousy comes from a deep desire to love and be loved...and it is fueled by fear of losing what he had. Fear of losing his position as beloved son.

 It's just too much for his little scarred heart to bear.
Desperate, he begins to grab, pull, claw, flop and wail.
What began as a spark of envy, fans into a full on epic life or death battle.

A similar episode can be sparked by a simple hug, a kiss, or  Mommy helping little sister put on her pajamas.  Sometimes he has the fortitude to contain the misery, sometimes it all comes rushing out.  If Mama kisses little sister, she'd better give Elijah one too.  If little sister gets a kind word, she'd better reassure Elijah too.  He's keeping track.

When Mama finishes the second book (after offering to share her lap many times) she speaks firmly to her son letting him know that he needs to stop this behavior if he wants to have a story too. She reminds him how much he is loved...even while he continues to rage.

 Minutes later he is snuggled in on Mommy's lap weeping his remorseful "sorry Mama"  "Sorry chair"  "Sorry Cece"  Sorry book".

He is sorry.  So terribly, horribly guilt ridden. Immobilized with shame, and  fear that he will be found out, that others will know.  They will know the beast of insecurity that he keeps hidden inside.  He is terrified he has crossed the line and hit a point of no return.

For the next few hours his guilt and fear will motivate him to perform.  He will show off every skill he has mastered.  He counts to 10.  He cleans up.  He scrubs the floor with a rag he happens to find..then the wall.  He works to prove that he is worthy to be loved.  He works to earn what he fears he may have lost.  He reminds me of all the wonderful things he has done, and is doing, while at the same time pointing out the fact that little sister isn't keeping up.
He is pleased with himself, but still afraid.

This is a cycle repeated over and over and over by a little boy who is filled with fear.  We assure him of our unconditional, forever, love at regular intervals every single day...but he doesn't yet "get it".  Our love is still something he has to fret over, fight for, and earn.

As I watch my son go through this cycle of insecurity, it strikes me as a greater spiritual truth.

So why are so many Christians's lives stuck in this same pattern?
Do we resemble children who are secure, confident, and resting peacefully in the Father's love, or are we always watching for ways that others might threaten our position in the family?

Church, do you see it?

When someone succeeds, is thriving, or receives a gift that you desire (or that is different from yours) does it positively eat you up inside?  Do you feel it somehow takes away from you?  Do you make yourself feel better by undermining it, making excuses, or sabotaging someone else?

Do you carry a smug "sour grapes" attitude?   "I didn't want to read that book anyway..." "I bet it's a sucky book"

How about offense?  Do you feel that gut rotting, seething sense of being offended every time someone doesn't personally acknowledge or validate you?

Fear breeds loathing and envy.
Insecurity produces Christians who compete with each other and cut each other down, instead of cheer each other on toward holiness.

Security is born out of assurance.

Religion leads to either pride or despair...or cycles of both.
Religion tells us that we need to...
work for validation.
strive for acceptance.
prove we are worthy to be loved.
Free grace, a one way love poured out on sinners, is just too risky.  Too scary.  We would rather earn God's pleasure by putting our fear to work.  We want something we can calculate, control, and keep track of, like a resume of good deeds that we hope will tip the balance, and move the scales to our favor.


When Elijah goes into "look how good I am" mode it doesn't make me think
"wow look at all he can do.  I'm sure glad I have him on my team!".
It makes me sad.
It breaks my heart because I know he doesn't get it yet.
He is not yet secure in this, one way, unconditional love that brought him into our family.  I shower him with reassurance, encourage him, remind him how much he's loved and adored, and prove it daily by my care of him....but sometimes he's so busy trying to earn it himself, that he just doesn't hear.  

Little by little he is making strides.  Month after month he is showing more signs of peace, confidence, and assurance.

Here's the thing:  God changes, encourages, and motivates us not by fear of losing our sonship, but by the security of His love.  

This is one of the things that makes the *gospel* different and distinct from all religions. We are not driven into action by a fear based system of rules and requirements that will earn our way to God.


Until you know you are His, and He is yours,
your obedience will be limited,
your confidence will be shaky,
your love will be carefully calculated,
and your courage will be minimal.

That is not what we want out of our relationships with our children, so why would God desire that from us?  Do we desire that our kids obey merely because they think we'll kick them to the curb if they don't?  No, our desire is that they respond to our authority out of a sense of trust, and love for us....a love that develops by realizing how much they have been loved first,


Religion can command us to change behavior but it cannot change our hearts.  It can tell us what is right, but it will never make us love what us right.  Only the *gospel, and the complete assurance it yields, and the transforming power of the Holy Spirit, create a passion for holiness in our hearts, because the very nature of our hearts is changed.

My children need a Savior just like I do.  My highest desire is that they would understand that.  I want them to recognize the Lordship of Jesus and believe he did what he said he did, and is who he says he is.
A saving faith looks OUTSIDE of itself to what Jesus has already done, not back onto itself on what it has done.  Faith can't rest securely in itself.
 It is not the strength of our faith, the sincerity of our beliefs, the flawless performance of our Christian life, or the list of deeds we have accomplished, that is the firm rock that we can plant our assurance on.   It is always, only, the object of our faith that can save.  Jesus.  The one who pursued and loved us first. 

That assurance creates not only a deep and lasting peace...
but also strength.

"For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline."

Church,  are we the peaceful, secure, "attached" sons who respond and work out of confident trust that we are already loved, and have been shown grace we couldn't earn?

 Or are we the coveting, defensive, fear motivated, sons who are constantly clinging to control, and trying to prove to ourselves, to others, and to God that we are worth loving? (or at least more "worthy" that that guy who's struggling to keep it together, or the lady who's a hot mess over there)

Watching this scenario play out over and over again in my home has made me ponder topics like this with a new set of eyes.

So many times I see my son battling his own insecurities, and lack of belief in what he already owns...
and I see myself.




*When I use the term gospel I mean the historic Gospel of Jesus Christ crucified and resurrected.   The word Gospel means "good news". "The Gospel" is more than a collection of facts to be believed, it is the good and true story that Jesus died and rose to defeat sin, death and evil in order to make all things new.  While we were still enemies of God, sinners by nature and choice, rebels bent on rejecting him and seeking our own way, God, being rich in mercy, sent is only son Jesus into the world to live the life we could not live and die the death we deserved to die.  As followers of Jesus we have come to realize that we are far more broken than we really comprehend, but in Christ we are more accepted than we could ever imagine.  That is good news indeed. 






Soli Deo Gloria,

10/15/13

Yes, we're crazy


My last post was mostly whining about how overwhelming daily life has been, and how anything "extra" nearly feels impossible.

So, what did we do?
We decided to go camping this past weekend.
I must admit I was skeptical when my husband suggested it.
We had hoped to have one more family weekend in the trailer, BEFORE I broke my leg, but I didn't expect we would do it now, especially this late in the year.

I was doubtful that we could pull it off.  After all, packing, preparing, and functioning during a camping trip (and cleaning up after it) generally falls largely on the mom in this house.

We were given the chance to have family pictures in the City taken on Friday, and we had other things to do in the city on Sunday so we decided to park our trailer in a small campground on the outskirts of the City.



It was a "chips all in" move.
I figured this attempt at a weekend get away would either be the final nail in the coffin that held our sanity.  I feared that that it might be the end of us...

but I also had a shred of hope that it might be just what we needed. 
Make it or break it.  




It was cold.  We had an odd array of clothing packed.
...and we picked up most of what we needed for food (and every other essential that was forgotten) in the City.
It turned out to be exactly what we needed.
I suspect a luxurious warm hotel suite would have been lovely too...
but this is vacationing on the cheap with a family of seven.

At the end of the day it's not about the accommodations, it was about the time together as a family outside of our monotonous routine and ordinary location.


We have only had family pictures done a couple of times over the years and generally they have always included crying babies and beligerant toddlers...and a lot of threats and bribery.  We were overdue for another family pic, that included all our family members.

This time was so different.  Maybe because the kids were older, or maybe because we told them we'd take them to a movie if they cooperated but we actually had fun with it.  I cannot wait to see the finished pictures!  Our photographer is amazing.

This weekend we posed for the camera, took the kids to a movie, ate out a couple times (in actual restaurants), spent some tokens playing games at "Ruckers", did some winter gear shopping,  met with our church on Sunday, and had a Thanksgiving lunch with a whole bunch of extended family.  

Lot's of little things that are a treat for us country bumpkins.  Camping in the city has it's non-camping perks. 


On Saturday afternoon, while seeking some warmer indoor activity, we ventured over to a First Nations "heritage visitor center".  There wasn't all that much happening on that particular day there, but we did learn how to construct a teepee.  




We happened to have our camera along for this outing.









This girl loves animals, even fake ones. 




It's actually fun (most of the time) to cram into our trailer, it reminds me of the adventures, road trips, and the many months we spent living in it in Mexico.  A little bit of cozy, chaotic nostalgia.


Riding through Target in style.  Replacing ripped, outgrown, and worn out snow pants, boots, and , mitts before the snow flies. 





One of my favorite parts of the weekend was eating at a very authentic Chinese restaurant.  It's like a portal to China.  Our food had just begun to arrive when my hubby snapped these phone pics, an hour later the table was pretty trashed.  We all sipped our green tea, while gorging ourselves on a variety of delicious food.  
I always thought I didn't care for Chinese food, because all I'd really experienced was the Canadianized version of it.   That's like saying you don't like Mexican after eating at Taco Bell. 

 It turns out I love real Chinese food.  Especially the spicy green beans.  I was considering flying all the way back to China to eat those again but I found them here (only an hour and a half from home).  
Lucky me. 

Despite the glum look in the picture Elijah was thrilled.  He was extremely happy to eat real food again.
He was also brave enough to say "Ni Hao" and "xie xie"  to the ladies bringing our food.  


Our other meals this weekend looked pretty much like this. 
We kept it simple.  Very simple. 


It turns out that this little weekend get away was just what we needed.   My hubby, after several weeks of harvest hours, was recharged and reacquainted with his family.  The kids enjoyed the time with Dad, and I enjoyed the time being away from home.  




Soli Deo Gloria,

10/8/13

Simply Surviving



Every once in a while you hit a season in life when you are merely just surviving.  

There is no ability to achieve more than just the very basics of survival.  Anything above that seems completely impossible.

During those times of illness, or a brand new baby, or post adoption adjustment phase, or in my case an injury, priorities get stripped down, standards plummet to frightening new depths and we make it through one day at a time.

Some days better than others.
Some days I'm not so sure we'll make it.

Children remain in pajamas during the day, or wear clothes to bed.  
We've been eating either Kraft dinner (or some other kid made delicacy), or casseroles kindly made by friends.  The house looks like it was either ransacked by hungry criminals or hit by a natural disaster (Hurricane Cece).  The big kids are getting some school work done but my junior Kindergarten class consists of reading books, and counting fingers while they sit on my lap.  Tempers flare, sympathy runs out, and Frustration seems to have become the eighth member of the family.  

This past week I've been getting around more, and figuring out how to attempt to do more of my usual duties.  That has both some pros and cons. The pro is my kids hate me less, and the con is my body hates me more. 







We had a sick boy this past week too.  Thankfully my mom has been my hero, coming to pick up which ever child is the highest maintenance (Cece has spent a lot of time with Grandma and Grandpa lately).  She took Silas in to see the Doc. last week, and then he spent a few days being nursed at her house....like I said, anything extra is completely overwhelming.  Wheezer is back home again, and back to school today.  Allergy/ Asthma boy gets hit hard with chest colds sometimes.   

It makes me glad we've been as healthy as we have this year. 


We got a new snazzy piece of equipment last week.  It's been in the works and on order for a while so we were glad it was ready for pick up, especially since Mom can no longer carry, or lift. 


This chair is made by Rifton, the same company that built his bike.  These products are unbelievably well made.  You know how so many things (esp. kid equipment) in life are frustrating, difficult to adjust, and don't do what you think they are supposed to do, well these are surprisingly unusual.  Every piece is engineered by someone who actually understands special needs and cares about quality, it's all ridiculously easy to adjust (and EVERYTHING adjusts), and it's as smooth as can be.  
This is the chair that his OT and PT that us he needed. 
They managed to hook us up with one.  We love those ladies.
So thankful. 


I wasn't convinced we would need, or use it.   I was wrong. 
The motive for a decent seat for him to use in the house is mainly his support, independence, and posture. 
He is capable of sitting, but it takes more effort to stay that way for him than a typical child.  He slouches over, slumps to one side and sitting on a couch or something results in him being very uncomfortable.  He starts having muscle spasms in his back.


Anyway,  we've been able to use this seat for eating at the table, for sitting at the computer, for doing book work/ games/ puzzles/ ipad on his tray, sitting and watching cartoons.

The cool part about this chair (and the reason we have this specific one) is that it's height adjusts down to the floor and then with a pump of the foot can be quite high.  It's high enough for him to be up at my kitchen counter helping me bake and be able to see everything.


*I noticed after I took these pictures that someone had been doing some adjusting...the head rest was on backwards and the seat back was leaning forward a bit making him slouch more.  I adjusted it and his posture was much better.*



When he's comfortable, and not wasting a ton of effort just to sit properly, he's more likely to focus, learn, and stick with an activity. 


Our goal is, especially with the anticipation that he will continue to grow, is that he become more and more independently mobile (which requires some adaptive equipment).  I could physically (before I broke my ankle) lift him up and down off his booster chair at the table, but we want him to have something that he can safely get in and out of himself. 

Next month he has leg surgery scheduled and will be in casts for a couple months.  I know for a fact that during that time this chair will be a life saver. I can't imagine him being in leg casts for that long without a chair like this.  

Oh, another cool feature is the small wheels.  It's not a wheelchair or really meant for transportation, but it easily swivels and moves from one location to another.  I can move him from the computer to the kitchen table with ease.  

One silver lining of the last couple weeks has been this guy has had to do a lot more on his own.  There was a couple of rough transition days before he figured out that he was going to have to figure things out...mom wasn't swooping in to the rescue.  Mom needed to be incapable of helping him in order for him to learn to do some more things himself...because not helping is super hard.
I'm so proud of the progress he's made in just the last couple weeks.  Now I just need to remember not to undo it once I'm capable of "helping".  

So, that's what we're up to.
Not much.
Maintaining damage control, keeping kids alive, and trying to remember that this really is only a minor struggle and will end soon enough. 
In the grande scheme of things, Mommy being broken is really just a minor little bump in the road, or  maybe more like a curb at the edge of a parking spot. 
It has not been at all fun, but it could be worse.

Soli Deo Gloria, 

10/2/13

What is Cerebral Palsy anyway?

Today is "World Cerebral Palsy Day".





I thought I'd better not let the occasion pass without writing something about CP, besides it gives me an excuse to write about this handsome guy.

We are fairly new to this world of muscle spasticity, physical therapists, daily stretching routines, mobility equipment, and ankle foot orthotics, but after 9 months it has simply become normal.

The adoption of our son, included adopting a new lifestyle, a new special needs community, and a new appreciation for the differences among us.  Especially for kids who have to work so hard to do the things that the rest of us take for granted.


What seems like common knowledge to me now, as I ramble on and on about "AFO's" and "heel chords",  I realize is often strange, confusing or mysterious to people we may know, or casually run into.    So here is a simple overview of things you might want to know about Cerebral Palsy.  Keep in mind that I'm certainly not an expert, and I don't live with CP myself so there is a lot I don't know.





Cerebral - "of the brain"
Palsy - "lack of muscle control"

First of all I should clear up what it is not.   CP is not contagious, it is not genetic, and it is not progressive.
A person with CP generally has the same life expectancy as any other person.

CP is a term used to describe a group of disorders affecting body movement and muscle co-ordination.  The medical definition of CP is "a non-progressive but not unchanging disorder of movement and/or posture, due to an insult to or anomaly of the developing brain".

Development of the brain starts in early pregnancy and continues until about age three.  Injury to the brain during this time may result in CP.   This damage interferes with messages from the brain to the body, and from the body to the brian.

The effects of CP vary widely from individual to individual.  At it's mildest, CP may result in slight awkwardness of movement.  At it's most severe it may result in virtually no muscle control.  Muscles can be rigid and tight (spastic), or very weak,  and it can also cause involuntary movements.

 Some other complications can be seizures, learning disabilities, hearing impairments or vision problems.

It is important to remember that the limbs of affected by CP are not paralyzed and can still feel pain, heat, cold, and pressure.  It is also important to remember that just because someone doesn't have the muscle control to speak doesn't mean they don't have things to say.   The degree of physical disability experienced by a person with CP is not an indication of his level of intelligence.

I have met, looked after kids, and been friends with quite a few people with CP and I can attest to the fact that someone who is fully dependent on caregivers for every aspect of life, and who has virtually no muscle control, can still be very intelligent and have a vibrant full of life personality.

There are also intellectual disabilities and learning disabilities that can go along with CP.  The brain is complex, and the damage done can leave "gaps" that have to be worked around.

The damage to the brain is a one time event so the condition will not get worse.  It just is.
However the effects of CP may change over time.  Some may improve with therapy, surgeries and a lot of effort.  Some effects may worsen over time.  The tight muscles can pull posture severely out of alignment, straining the joints and spine, causing secondary problems like scoliosis. The aging process can be harder for someone with CP because of the limited range of motion and flexibility, a more sedentary life, and stress on the joints.  Much of what we do with Elijah is for the purpose of improving function and mobility, but we also do things with the intent of reducing stress on his joints and spine in the hopes of limiting long term damage.

It is estimated that 1 out of every 500 babies has some degree of CP.

What causes CP?

Any damage to the developing brain, whether caused by genetic or developmental disorders, injury or disease may produce CP.  These are some examples of things that can lead to CP.

During Pregnancy: (these things can increase risk for CP)
-damage to placenta
-infections
-poor nutrition
-exposure to toxic substances
- illness in mother
 - biochemical genetic disorders
-chance malformations of the developing brain

During Labor:
- premature delivery
-traumatic delivery and complications

In early childhood:

CP can occur if a young child suffers brain damage due to:

-infections such as menangitis
- brain memorrhages
- falls, car accident, abuse
- lack of oxygen such as drowning
- seizures


There are different types of Cerebral Palsy depending on where the damage took place in the brain.
Elijah has Spastic Tri-plegia meaning three of his limbs are affected, both legs and his left arm.

He also has been recently diagnosed with microcephaly which has many of of the same root causes as CP.  The two diagnosis likely go together, but because we know so little about his history,  it's hard to understand what came first...because one can lead to the other.   Microcephaly is just smaller than typical head size due to abnormal formation and growth of the developing brain. This happens early in development, likely even prenatally.  It's possible that his birth mother was ill, or exposed to environmental toxins, or maybe he had a difficult delivery...or maybe he had an illness like meningitis as an infant.  It's virtually impossible to know at this point.


What we can't forget, when reading medical information, is that the person with CP is a person first.   They are little boys, little girls, men and women, with the same desires, needs, and dreams as everyone else.  They each have their own personalities, their own talents and strengths and their own unique contribution to the world...despite how much they can or cannot accomplish psychically.

As far as our little guy goes, we have had people wonder what his potential ability to live independently someday is.

To be honest there is just a lot we don't know at this point.   He's like a little gift that we continue to unwrap, each layer revealing a little more clarity.

We are still in sort of a triage mode as far as addressing each of his most pressing needs....physical, emotional, psychological, relational, educational...even dental.  Sometimes it may seem like we've forgotten to address something or aren't paying enough attention to one area.  That may be true sometimes but mostly it's just down the road a bit, waiting for it's turn.  Special needs parenting is all about advocating, making phone calls, and writing down appointments on the calender.  Next on the calender is surgery on both of his legs to lengthen his heel chords and hamstrings.

We do know that he's making progress in so many areas, beyond what we even expected at this point. He's learning, growing, and becoming more independent and secure all the time.   I would hate to even guess what his "potential" is because I know he'll just continue to amaze us.

 I've come up with all kinds of scenarios of what the future may look like, in my head.  None of them is terrifying to me, or gives me cause for worry.   It doesn't really matter all that much to me what that potential is...as long as he is able to reach it without being held back.  Besides his worth is not based on who he could become, or his potential, he has value for who he is right now.

His "success" story may be him living with us for decades after his siblings have all left home, and being the best greeter (with the greatest smile)  that Walmart has ever had.  It may mean he lives independently with some added supports, and supervision.  His story may include going to college, finding a wife and giving us a bunch of adorable little Chinese Grand babies.  Although I have my guesses there is just no way to know, and I don't want to place that glass ceiling above any scenario.

Each one of those general scenarios; from being blessed with the perpetual innocence of childhood, to him living with some independence, to living a fairly typical adult life...and anything in between will all be cause for celebration and pride.

Living as a special needs mom has taught me that it's the little things that are actually big.  While other moms cheer their sons as they get the winning goal, I get to cheer for my son every morning when he finally gets those socks on his feet.  When he counted to ten for the first time, after several months of working on it, it caused shrieks of delight, clapping, and elated high fives.  Climbing onto a kitchen chair,  walking across the living room, climbing into the bathtub,  washing his own hands at the sink, taking himself potty without help, getting his own cup of water, drawing an E......have all been cause for elation.  Each of those are winning goal, first place in the recital, parental pride moments because each of those things took a lot of time, effort, and struggle to accomplish.

 I suppose the beauty in struggle is that we have so many more chances to cheer for each other along the way.


Soli Deo Gloria,
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