Thursday, May 26, 2011

Original Blog Post: January 12, 2009- More Prayers

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As I type this Adam and Caedmon are sitting at the Children's Hospital Emergency Room.  This evening, after a day of appointments with various doctors all saying how wonderful he's doing, his scalp incision began to puss.  We immediately called the doctor who said to meet him at the emergency room.  We had been very careful over the last few weeks to keep him off of the incision side unless he was being held in our arms and we could ensure that no pressure was being placed on the incision area.  However, today, after meeting with the Nurse Practitioner for the neurosurgeon who said we could treat it as a normal head and place him on his back or either side, we put Caedmon on his back in his carseat and on his back in his swing.  It was after this that we noticed the fluid.  We are calling out for God's mercy.  If the medical staff feels there is an infection in the shunt or if they can see the shunt because the incision has opened up Caedmon will be looking at replacement shunt surgery and at least a month in the hospital.  We need a lot of prayers.

Lamentations 3
17 I have been deprived of peace;
       I have forgotten what prosperity is.
 18 So I say, "My splendor is gone
       and all that I had hoped from the LORD."
 19 I remember my affliction and my wandering,
       the bitterness and the gall.
 20 I well remember them,
       and my soul is downcast within me.
 21 Yet this I call to mind
       and therefore I have hope:
 22 Because of the LORD's great love we are not consumed,
       for his compassions never fail.
 23 They are new every morning;
       great is your faithfulness.
 24 I say to myself, "The LORD is my portion;
       therefore I will wait for him."
 25 The LORD is good to those whose hope is in him,
       to the one who seeks him;
 26 it is good to wait quietly
       for the salvation of the LORD.
 27 It is good for a man to bear the yoke
       while he is young.
 28 Let him sit alone in silence,
       for the LORD has laid it on him.
 29 Let him bury his face in the dust—
       there may yet be hope.
 30 Let him offer his cheek to one who would strike him,
       and let him be filled with disgrace.
 31 For men are not cast off
       by the Lord forever.
 32 Though he brings grief, he will show compassion,
       so great is his unfailing love.
 33 For he does not willingly bring affliction
       or grief to the children of men.

Thursday, May 12, 2011

Early Spring Happenings

I haven't posted any pictures for a while, so thought I'd just make a picture-y blog.  Here's how our spring has gone so far.
Taking a walk in the spring with a cast can be dangerous.  Keep plastic bags handy.

Wo oo Wo,  listen to the music

Lovin' some story time

Beautiful sunset just before the May snow.

Two teeth down, twenty some to go

New hair cut and a weird facial expression

Going along with Mommy's weird expression

Adorable, love this boy!

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Wednesday, May 4, 2011

New Place, Same Family

Welcome to our family's new blog location.  The same people you know and love, better location. 

Original Blog Post: May 1, 2011- Moving In The Right Direction

You, as the smart person that you are, may have been thinking as you read my last post, 'But it's only been three days.  Give it some time, Mama!'  And maybe this is the lesson to be learned, that moms and dads so quickly lose hope and confidence while junior is doing just fine and just needs to find his feet again.  Anyhow, I am here to tell you that you were right, I need to relax.

Caedmon jumped right in to his aquatherapy.  He stood for about 15 minutes playing with the toys on the edge of the pool.  He took the two short floaty-stick things and walked the length of the pool and back.  He stood and sat about 10 times, totally unprompted, just decided he needed to do that particular exercise.

Immediately following therapy I noticed changes.  He was crawling more, trying to climb up in his chair and into his bed.  He is a little clumsy and will have to strengthen those muscles again but the point is that he's trying!
Yesterday I took the boys to the zoo and he pushed his own stroller for about 20 minutes.  He stood at the edge of a petting pool (you can touch little sharks and rays) and splashed water for another 15 minutes before he was finally ready to sit and rest. 

I'd say that's pretty good progress!

Wednesday he gets fitted for twisters, straps that wrap around his legs to hold his feet in the correct position.  I think once those are one he will really take off.  His left foot is beautiful now, pointing in almost the right way.  His right foot is now the problem and trips him up quite a bit when he's trying to walk.
I am so excited to see how far he has come so shortly.  It's incredible being on this journey with him!

Original Blog Post: April 26, 2011- Baby Steps

Caedmon has been sans cast for three days now.  On Friday his new AFOs  were finished and he had his final fitting.  With the support those give his newly surgeried foot/ankle, we were able to take off the cast.  Tomorrow will be his first bath, so looking forward to that! 

It has been difficult watching him these last few days.  He continues to scoot around on his bottom and does not want to crawl at all.  He doesn't believe he can get down from his dining chair, or any chair, on his own.  He won't even try to climb into a chair.  He is terrified of the stairs, will not kneel next to the couch and cries if we try to help him stand or walk.  All things he could do brilliantly just a few short months ago.

I know it is a matter of time and patience, I am trying to let go of Pushy Mommy and allow him to go at his own pace.  His PT told me today that the fact that he was so strong and able to do so much before the surgery will mean he will bounce back fairly quickly.  It is still really difficult.  It is really hard to see how far backwards we have gone.  It's hard to see him as scared to take risks when he has never flinched at trying anything before.  I hate to see how his confidence has been sucked out of him.  I got a little teary during our appointment today.  He was so cautious and shy, not my bubbly go-getter at all.
My hope is that when he gets back in the water again on Thursday for aquatherapy he will start to remember all the wonderful things he's been able to do.  He will start to regain the confidence to stand and walk and explore.  I know this phase will pass, I know he will go beyond what he ever has before, but I also see how easily it can be to lose gains and what an uphill climb it will be for him to keep pushing and not give up.

So for now we take baby steps: encouraging crawling using verbal cues, helping him get back into the habit of tall kneeling while playing at the couch, maybe in a couple of days he'll try to climb the stairs, and maybe next week he'll try to stand, and a few days later he'll try to take a few steps. 
Life is all about patience and adaptability.

Original Blog Post: April 20, 2011- The Whole Patience Thing

After much anticipation and excitement, Caedmon's cast was removed today.  It's been about 7 weeks, it's felt like a really long time.  I was looking forward to seeing him stand again, and anxious to see if he was able to walk a bit.  I think just being able to bend his knee will be a really wonderful sensation.
His cast was also put back on today.  I had not anticipated this.  Apparently the doctor communicated some things to my husband over the phone that didn't get passed on to me, ah, well. 

So, the cast. 

It's the same cast he's been wearing the last two weeks, cut in half and put back on bound by athletic wrap.  The purpose is to protect the holes after the pins were removed.  They need about a week to scab over before he will be allowed to take a bath and start aqua therapy again.  So, one more week of sponge baths, scootching and stationary activities.

Original Blog Post: April 19, 2011- Other Blogs

This is for the benefit of my parents and family and friends who might want to know what else I have been up to (I'm using my time more wisely than that report card in 2nd grade, Mom and Dad ).

I'm writing a monthly devotional blog for Signpost Ministries, a ministry set up to support families of and people with disabilities.  Here's my latest contribution: http://www.facebook.com/#!/pages/Signposts-Ministries/147970165231299?sk=info

I also wrote a blog on prayer for one of the magazines our denomination puts out.  You can find it here: http://www.atoday.com/contagious-spirit-corporate-prayer

Original Blog Post: April 8, 2011- How To Break A Cast In Seven Days

Yes, it took a mere 7 days for Caedmon to wear down the heel of his cast and require a new one.  He's been very good with just scooting around but it's impossible not to drag that heel while he's doing it.  He still has 2 weeks left with the cast so we had some concern that he would be doing this a few more times before we finally get to take it off for good.  They put extra support on the heel so hopefully that will take care of the problem and we will finish strong. 

Original Blog Post: March 31, 2011- The Difficulty Of Saying 'No'

I realized yesterday why I struggle with Caedmon being in a cast so much. 
We had gone to a park, one we hadn't been to in a while and I didn't remember much of the set-up.  When we got there, I realized there was nothing Caedmon could do, except swing.  Thankfully, he loves to swing.  The only way to get to the slides was up two awkward ladder-like things or through a long tunnel. 
I had never paid any attention to accessability before having Caedmon.  Never considered how difficult it would be for some children to get around. 

On this day, swinging was not enough.  He wanted to slide.  He wanted to go in the tunnel.  He wanted really bad to scoop (those excavator things).  The scoop with handles that happened to be at a height for a standing child and didn't work well while sitting in a stroller.

For the first time since his birth, I had to tell him no.  No, you can't slide.  No, you can't go in the tunnel.  No, you can't play in the sand.

That's when it hit me.

I had determined since pregnancy that I would say 'yes' to anything Caedmon wanted to do.  We would figure out together how to do it, if need be, but he would never hear the words, 'No, you can't' come out of my mouth.  And here I was, breaking my own vow.

It was so hard!

I tried to make a positive spin on it by saying, 'When your cast comes off you can do that!'  But it sounded so lame.  I just keep hoping that he will have little to no remembrance of this time and he will not be set back when the cast does come off.  He doesn't seem phased a bit by any of this.  I'm so grateful for his positive attitude toward everything.  So many times he ends up cheering me and encouraging me. 

What an amazing and wise, laughing warrior we have.

Original Blog Post: March 29, 2011- Three More Weeks

It's always good news to hear the doctor say, 'Everything looks great!  Keep doing what your doing!' 

It's not so great news to hear the doctor say, 'I'll see you in three more weeks and, if everything looks good, we'll remove the pins and take the cast off.' 
It's a little miserable to have him put a new full-leg cast on your two year old and be sent home when 'keeping doing what you're doing' means no crawling, walking or standing.

So we wait.  Three. more. weeks.

Original Blog Post: March 23, 2011- Early Spring

I've been wanting to write this post for a while now and finally got around to it today.  Ironically, as I write this it is snowing and blowing outside.  We're forecasted to get another seven inches.  What a winter!

A week ago we had wonderfully warm temps, the snow was disappearing and we went for a walk every afternoon.  One day we got all the way up into the 50's!  We had to go to the park, it was that kind of day.

When we drove into the park we couldn't see the normally very visible playground because there were two mountain ranges worth of snow hiding it.  We were not daunted.  Caedmon had been begging for months to go swinging, what was a little snow? 

When I pulled into the parking lot, between the mountain ranges, there was no parking space available and all that could be seen of the spaces were the ends of the lines trailing off into snow banks.  There were also no cars there.  I figured, why not parellel park since we have the place to ourselves?
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We pulled out Damek's scooter, hoping there might be some kind of sidewalk visible.
  
And headed for the playground.  I had to push (hard) through quite a few feet of slushy, wet snow.  I wasn't sure if we would make it or not.  Damek found some space to scooter but not much.  Here's the view of the playground once we finally got there:
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We were the only people there but Caedmon had an awesome time swinging, Damek slid down slides that 'aren't wet, Mom!' and I could not have been happier, with feet soaking wet in snow (I wore clogs, wouldn't you know) and a brilliantly warm sun soaking into my face and hair.  Caedmon and I watched a bald eagle soaring high overhead as he swung.  It was lovely.
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That same day, Damek, in a shocked and amazed way, showed us that his first tooth was loose!  We wondered a bit how this would go because Damek is a very passionate soul and does not like pain one bit.  But he wiggled on that tooth faithfully and just a few days ago our son became gappy for the first time!
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What a nice spring.  Now if only the snow would leave for good!

Original Blog Post: March 15, 2011- Recovering

Caedmon is doing well in recovery.  In fact, I've noticed that everytime I'm nervous about something, some development or something he's supposed to do and I think this is never going to happen, Caedmon comes out with it the same day.    On our first full day home from the hospital Caedmon figured out that if he stuck a towel or blanket under his cast he could quickly scoot across the hardwood floors.  This is awesome for two reasons: it's how he is supposed to be getting around and it elevates his foot, keeping his heel off the ground, which is also what we were instructed to do.  What a little rockstar! 

Original Blog Post: March 12, 2011- Homeward

Caedmon and I arrived home exhausted but relatively unscathed from our hospital stay.  Thankfully we received our own room though the hospital we stayed at has pods, two rooms together in a larger space sharing a bathroom.  Our next door neighbor had a much tougher night and it is hard to sleep when you can hear someone crying, I've discovered.

Caedmon, we have learned, has basically no feeling at all in his foot.  His surgery was major, six pins placed to hold his bones in alignment, two of them are actually protruding from the bottom of his foot, with a large cast over it to protect and cushion his ankle/foot as it heals.  He has had one dose of Tylenol since the surgery and this was only because his temperature started to rise a bit.  The nurse recommended Tylenol because a rise in temp can indicate pain even if he wasn't showing any signs of it.

FYI: I learned today that ibuprofen can inhibit bone development and growth so we are to give Caedmon no ibuprofen over the next eight weeks unless okayed by the doc.

On the amusing side of life, Caedmon felt like the hospital was his private social site.  Every time anyone came in the room throughout the night he would immediately sit up and start talking to them.  It happened first with the cleaning lady at 8 and stretched on from there. 

At 11, he informed the new shift nurse that he was sleeping and Mommy was sleeping on her bed, 'I sleep, Mommy sleep her bed, I sleep'. 

At 12, he introduced his baby and his blankies to the new shift nurse. 

At 12:30, after his antibiotic round was finished, he let the nurse know the beeping was loud, he had a guitar and Mommy was sleeping. 

At 1:00, when the flush was finished, he asked to see the vacuum (we had taken a walk before bedtime and stood watching the custodian for a loooooonnnnggg time). 

At 4:00, he told the nurse he was still here, 'I still here'. 

At 7:15, some young doctor, a little groggy as to who, came in, flipped on the light, marched right over to Caedmon and startled him awake.  Good morning world!    Caedmon was not nearly so cute and talkative in this scenario and Mommy was not nearly so kind, though I honestly tried.

So, we are home, with orders to keep him from crawling or standing for the next two weeks.   This should be a very exciting two weeks.  They suggested we tell him to scooch on his bottom if he wants to get somewhere . . . um, yeah.  Lord, help us over the next two weeks!

Orginal Blog Post: March 11, 2011- Out And Recovering

The surgery lasted a little over 90 minutes.  He is out and doing well.  He had a 'spicy' popsicle that he loved and is his normal, gregarious self.  Thank you so much for the prayers!

Original Blog Post: March 10, 2011- On Being A Mama

Tomorrow morning I send my son off to the operating room, wheeled out by a stranger's hands, taken to a place I've never been, cared for by people I've never met. 

Tomorrow morning my heart will feel like it is gone from my chest, from the moment they take him away until the moment I get to be near him. 
Tomorrow morning a surgeon will cut my son; in order to help him he will have to hurt him.
 
Tomorrow morning my stomach will be in knots, I will have a hard time focusing, my mind will be in constant prayer, tears will be poised on the brink of falling. 

Tomorrow morning I will have to face again what all Mamas face at some point in their lives, though I always wished it would be a little longer until I had to face it: the letting go.  The realization that this child, as much as they hold your heart, is not you.  They must go.  They must have experiences apart from you.  They must be hurt in this life and, God-willing, they must grow stronger because of it.  I must allow him to be placed in God's hands and watch him leave my sight: so vulnerable, so small, so beautiful, so loved. 

Tomorrow morning will be hard.

Original Blog Post: March 9, 2011- Here We Go Again

Caedmon's surgery is scheduled for 7:30 Friday morning.  After all the times he has been the one scheduled late in the afternoon or been the emergency one fit in whenever the surgeon can get to him, I have a deep appreciation for being the first one in, especially when it means no eating or drinking before.

He had his pre-op appointment today with his pediatrician.  He gets so excited when I tell him we're going to see anybody.  With his medical history, that is quite a lengthy list.  Take the pediatrician: he's seen the man maybe three times in the last eight months, would have no idea who he was if we saw him at the grocery store, yet he starts yelling enthusiastically as I'm getting him dressed this morning, 'See Dr. Brook!  See Dr. Brook!'  All the way to the clinic he's saying this, all during check-in, all during the nurse's pre-work.  He had a great time giggling and playing during the exam and even smiled for the nurse pricking his finger and squeezing every last drop of blood out of it and just said, 'I saw Dr. Brook!'  What a loveable nut!  He's also thrilled that he gets to see Dr. Sand (the orthopedist) on Friday.  I'm hoping he does not fear the sight of him after Friday. 

For our praying friends and family, we're asking for prayers during the surgery, specifically, there is a chance that Caedmon could need a blood transfusion if things do not go well, we are praying this is not needed.  After surgery Caedmon will need to have his leg elevated for a while and will be admitted to the hospital for 1-2 days.  We are praying it is only 1 and that his leg shows wonderful signs of healing.  Ultimately, we pray that this surgery will be more successful then anyone anticipates and goes a long way to bringing flexibility to his foot and alignment to his ankle bones. 

Thank you so much for your continued support and care of our little warrior!

Original Blog Post: March 3, 2011- The God Of Hope

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.  Romans 15:13

I am thankful for the God of hope, Who sends me visions of the greater picture when my mind is so focused on tiny detail, Who sees when I am caught in a riptide of hopelessness and sends me a lifeline to cling to, Who gives me a hug when I forget how much I need them, Who helps me to laugh at myself and see the humor in my darkest mood.  What a kind, good God!

Growing up we rarely, if ever, went to a doctor.  Unless there was a sign of something broken or a tumor, you suffered through it and went on with life.  So, in my mind, doctor=certain death, or something like that.  Having a child who needs major medical attention several times a year scheduled and more unscheduled is a big, big area of growth for this anti-medical (and tiny bit of a worry-wart) mama.

Thankfully, I have a husband who is very familiar with the inside of a doctor's clinic and special needs are not a foreign concept.  The other night he said to me, 'We knew Caedmon would need more work on his feet as he grew.  This is what will make him stronger later.' 

Light bulb.   

A little later that same day I received an e-mail from Caedmon's aquatherapist.  'Don't forget that this surgery will make him stronger.  With his bones aligned he'll be able to do more and go farther.' 

Light bulb.  

Okay, God, I think I'm getting it.

Today, folding laundry, I realized that my stomach muscles were in huge knots.  I stopped and prayed, 'God, please take care of Caedmon.' 

Big wave of Peace. 

Sigh.  Light bulb.

I think I still have a long way to go to overflowing, but I'm sure thankful for the promise!

Original Blog Post: February 28, 2011- Surgery, Ugh

Caedmon's ankle is getting worse.  The top of his foot is blue and black and purpley, his ankle is swollen, the bottom of his foot is swollen.  The orthopedist was able to get us in a few days earlier then scheduled because it looks so bad. 

His left foot has always been a bit worse then his right, more turned in and more rigid.  We found out today that the tendon release surgery he had almost two years ago did not do the trick.  His bones are not aligning as they should.  This means that he will continue to have injuries unless we do something surgically about it. 

So, March 11 we will go in for that surgery.  They will do a second tendon release plus put in some temporary pins to hold his bones in the correct place.  He will be in traction almost the whole day following the surgery.  We have been told to anticipate several days in the hospital.

We're asking for prayers and any great ideas you may have on entertaining a two year old in traction.   

Original Blog Post: February 24, 2011- Caedmon Is WALKING!

The last few days Caedmon made up his own game.  He stands up next to a kitchen chair, lets go of the chair and just stands there until someone notices he's standing.  If someone doesn't notice quickly enough, he'll yell out, 'I'm STANDING!'  And smile at you with this wonderfully proud and happy face.
Last night Caedmon decided he needed to move a bit more.  He stood for a moment, leaned as far as he could toward the kitchen cabinet a few feet away, then walked a step and a half before falling into the cabinet.   Mama was surprised and proud.  Of course, when Daddy came home ten minutes later and heard about it he tried to get Caedmon to repeat the event with no success.
This afternoon Caedmon was playing the standing game on a rug we have in the living room.  All around the rug is hardwood flooring.  I was busy making bread dough and looking up occasionally to see what he was up to.  I heard his braces on the wood and heard him say, 'I'm WALKING!'  but he loves to lay on the wood and wack his braces as hard as he can for the sound it makes and for some reason I imagined that's what he was doing until it registered what he was saying.  By the time I looked up he had crashed but he was a full five feet from where he started.  So, we made up a new game.  He stood by the easel, I stood by the kitchen table and when he said, 'GO!' we started walking toward one another and tried to reach each other to give big hugs. 

The first time he reached me I was so overwhelmed with emotions it was hard not to cry and not to hug him too hard.  We played for about 30 minutes, then I tried to video tape some while he did it himself.  A couple of times he almost made it ten feet, all in the course of an hour!  When Brother and Daddy got home Brother was totally into the new game.  So here is some video of our boy's first steps on his own!   

Original Blog Post: February 18, 2011- Ten Steps Forward, One Step Back

Last week Caedmon's cast came off and we discovered that he never had a fracture.  This is wonderful news!  The next day he was right back in the pool again and we picked up with therapy as if no time had been lost. 

The weather, for five straight days, was above freezing and just beautiful.  The boys enjoyed every second of sunlight every day, playing out on our deck which is snow and ice free and just waiting for some happy feet.  Caedmon played tag and soccer using his walker or Mommy's hand and loved the freedom.
Yesterday, at therapy, Caedmon took two sets of five steps all by himself!  Later in the afternoon he wanted to play wrestling.  He would roll on me, then push up off my side and stand, sometimes for a little while and sometimes for a minute or longer, before falling on his rump and laughing hysterically.  What a great day!

Today, Caedmon crawled AFO-less from his bedroom to the living room.  This is not a long distance at all, maybe twenty feet.  And, abracadabra, we have a swollen purple ankle again.  We are taking it easy today: leaving the AFO on for protection, taking it off every so often to check if things are better or worse.  We are also praying that it will heal very quickly.  It's so frustrating to move backwards!

Original Blog Post: January 31, 2011- There Is Still Fun To Be Had

Yes, even with a boy in a cast, frigid temperatures and icy roads.  'What can you do?' you say.  Why, bring the snow INSIDE of course.    The bonus: boys who love to make snowmen and snowballs but can't because it is just too freakin' cold outside can build to their heart's content, until it melts that is. 
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Of course, some of you may be wondering, what in the world is one of your boys doing in a cast!  We had been warned from Day 1 of Caedmon's life that children who wear braces and particularly those with SB myelomeningocele are more susceptible to fractures.  We had counted our blessings that we had not had that particular experience yet.

Last Wednesday, as Caedmon was having his hour of free time without AFOs (braces) I noticed a very large, very ugly, very purple ankle.  Upon further investigation I noticed a lot of swelling.  This was not good.  Adam took him in right away to our pediatrician.  They took an x-ray, told him everything looked fine and to keep him off of it as much as possible, elevate the foot and put ice on it.  Well, we laughed a bit, wondering how in the world we were going to do that but determined to try our best. 

When we went another two days with no change and Caedmon as active as ever we decided it would be good to get a second opinion from someone who works quite often with kids who have SB.  We called our orthopedist.  He looked over the x-rays and told us that just because you can't see a fracture doesn't mean one isn't there.  As a precaution he put a cast on Caedmon for the next 10 days.  Then, we'll go back for another x-ray to see if there is any new bone growth.  If there is, we'll know he did have a fracture, if not, well, at least his ankle will be healed.  So, now to find entertainment for the next 10 days. 

Original Blog Post: January 24, 2011- Standing Progress

 Caedmon must be in the middle of a developmental growth spurt because he's been doing so many awesome things in the past five days. 

He's missed a week of aquatherapy because of illness so when he went this last Thursday I was not expecting much, just maybe catching up to where he had been before he missed.  But, almost right away, he stood in the water by himself, totally oblivious to the fact that his therapist had moved away from him, watching the ladies one pool over using medicine balls in their aquatherapy class.  He then took almost two steps forward before losing his balance!

Later that same day, Caedmon was 'driving' his ride-on train toy(another new development, being able to push with his feet), when he stood up with only his leg strength and announced, 'I'm standing!'  He did it a couple more times for effect with a huge smile on his face.  It was a tear-jerker moment.
Then on Saturday at church he decided he wanted to 'help' me stand up from the floor.  He pulled himself up to stand next to me then completely let go of me and pushed me with both his hands, perfectly balanced.  He pushed three times before pushing himself over.  I was telling Adam about it a little later and Adam told Caedmon to 'Help Mommy again.'  (I happened to be on the floor again.)  And Caedmon pulled himself up again and did it. 
We can't wait to see what the coming week brings!

Damek is learning how to work a video camera.  Here is a fun little clip of the boys, sorry about the lighting!

Original Blog Post: January 17, 2011- Defining Yourself

Being fairly new to the world of parenting and even newer to to the world of parenting a child with special needs, I find I have a lot to learn . . . on everything. 

A big lesson I am learning now that Caedmon is mobile and wanting to play on playgrounds and with other children is that people (parents and kids) look to me to see how they should respond to him.  When they ask questions about him they will pay attention to how I answer the questions even more then the words I say.  If I answer in a matter-of-fact way, nonchalantly and at ease, they will interact with him in the same manner.  If I answer in a fearful, concerned way they will show pity and back away, a bit fearfully. 

I've also been learning that the way I answer questions depends on where my focus is on a particular day.  For example, if I am concerned about an upcoming exam or worried about how his shunt is functioning, I will answer in a concerned and worried way and the people will respond in part.  If I am focused on how beautiful he is and what a joy he is, I will answer in that same joyous manner and people will see how amazing he is.  It never fails.
I believe this is the difference between definition and description.  What my focus is on is what I use to define.  When my focus is on his diagnosis and defect it defines him and that is all the people around me see in him.  When my focus is on who he is as a person, his worth as a child of God and his value as a human being, that is what the people around me see too.  His difficulties become merely descriptions of why he needs a walker or why there is a bump on his head but are not who he is. 

This is something I want to model for him and pass on to him.  However, I've realized that I have the same problem with my own character defects.  Too often I allow my mind to define myself by the times I have screwed up, the things I have said wrong, the people I have hurt, rather then to let those be descriptions of moments of weakness.  I am not my mistakes, I am a worthwhile daughter of God who has made mistakes and learns from them everyday. 

That is a lesson worth passing on.

Original Blog Post: January 5, 2011- And Now For Something Completely Different

The Boys and Their Toys

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Working hard on their Christmas laptops.
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Caedmon's first sledding experience.  He started loving it when Daddy quit kicking waves of snow into his face.  Tee hee! (For the record, Daddy was riding with him and trying to slow them down and didn't realize what he was doing until they got to the bottom and Caedmon's face was totally caked in snow.)
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Our social butterfly making another new friend.
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He's very focused: places to go, people to see, obstacles to ram into.
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A cool hand-pump tricycle at a local indoor playground.