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. 


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.