Not So Academic Philosophy

We had big news in our house yesterday.  I mean BIG news.

Since birth, we were just positive that Caedmon was completely paralyzed below both his knees.  He has never wiggled his toes, never pointed his feet, never shaken his feet, never had movement at all.  It made reading stories about baby toes and watching other, 'regular' babies playing with their feet rather painful.  I got pretty adept at avoiding any library books that mentioned feet.

Everyday we stretch Caedmon's feet.  It takes about a half an hour and a good video to distract a very active three year old.  Sometimes, during his stretches, I noticed that the muscles in his left foot would jump a bit, like he was working them somehow, but I shrugged it off figuring it was just a spasm of some kind.

Yesterday, Adam took off his braces to give his feet a break and was lotioning them, another important thing we do everyday.  All of a sudden, Caedmon started to move his left foot up and down!  Adam couldn't believe it.  "Do it again, Caedmon!" he said.  So, Caedmon looked down at his foot and did it again.

Later on in the morning, I was doing his stretches.  "Caedmon, can you move your foot like you did for Daddy?" I asked.  He looked at it again, like he was really concentrating, and there it was, the foot moving back and forth!

It was awesome!

We had been warned that he may have good days and bad days.  Days when his nerves are more connected, work better and he'll be able to do more, and days when things just don't seem to click.  We are fully aware of this.

However, when you have a child who struggles with anything, school work, fears, nightmares, psychological disabilities, physical disabilities, you pray constantly that they would find a way through.  You pray that their minds or their bodies would start to operate as God originally designed them to.  You pray that they would be able to take this difficulty and turn it into some awesome strength that would not only change their world but the world all around them.

So, Caedmon moved his foot.  This, to me, is a miracle.  For three years he has not had any movement and now there is movement.  For three years I have been putting him to bed every night with the prayer that God would please bless his body and help it to work in the best way possible.  That He would touch my son and help his body to work as God planned it to work when He first thought of Caedmon.

My problem with this is, of course, the hundreds of others with spina bifida who I have met since this journey began three years ago.  Some of them are much better off than Caedmon.  They walk without issues, they are able to use the bathroom, they appear as 'regular' kids.  Some of them are much worse off than Caedmon.  They are lying in the hospital as I type this fighting for their lives with parents in so much pain, not able to do anything but pray and hope their child will get to come home.  How do I tell this latter group that God answered my prayer for my son but not their prayer for theirs?  Even if it's just a partial answer, what about those who seem not to get an answer or get a negative answer?

I have no easy answer to this.  I am not a great philosopher.  I struggle almost daily with the questions this issue brings up.  I am skiddish of those who say they have it all figured out because it is so huge and so complex and, just when you think you have the answers, you meet another person who doesn't fit into the solution and have to start again.

So, not answering any of the questions I find so difficult, I have come to see that my philosophy of parenting a child with special needs is that I believe in a God of love.  I believe that my son was not created to be disabled but, because of this world of sin and pain that we live in, he was born with a disability.  I believe that God's ultimate purpose for us on this earth is to make us holy so that He gets to spend an eternity pouring out His love on us.  That means that His goal for me and my children and everyone is not to make us HAPPY but to make us HOLY.  That means that He gently guides us and teaches us and sometimes He leads us through some pretty tough crap to ultimately bring us to Himself.  I believe that God looks at Caedmon, and every other person in this world, and sees all the potential wrapped up in his amazing body and mind.  I believe that God whispers to Caedmon everyday, 'ALL things work together for good, for those who love Me and are called according to My purpose.  I have called you, Caedmon.  I love you!'  I believe that Caedmon will have a full and fullfilling life, not because of what his body can't do but because of what he can do when he sees his own potential.  I believe Caedmon will reach many people because he responds to the call.  I believe that there will be a day when my son's body will be made perfectly whole and I will see him running and jumping and flying.  And I believe that the most important thing about that moment will be knowing he gets to be that way not just for a few short years on this earth but forever.

So, Caedmon moved his foot.  That's pretty darn awesome.  More awesome than that is every time he sings his own little song about the love of God, and every time he looks at me and goes on to do something I didn't even know he could.  He's going to go far, that little guy.

Damek's First Christmas Program

Damek played a wiseman in his first play.  He had a small speaking part and singing part.  Unfortunately, he was in the first skit and the cameraman was unsure of how to focus, so he ended up blurry.  Thankfully, we will have more opportunities to get it right. :-)  Enjoy!

Changes On The Horizon

I'm learning this fact about myself, that when life starts picking up my blogging falls to the wayside. It's been a long while since my last post and here is why:

An update on our latest baby boy, we are in a holding pattern both as we wait for the due date and as we anticipate an ultrasound in mid-December to look for any changes.

We have not had much time to dwell on this news, however, because soon after learning of baby's possibilities we were informed that Adam would be moving to a new church by the end of the year. You can imagine that finishing up work at two churches, house hunting, packing, continuing with school and therapies for the boys and being six months pregnant are keeping us on our toes while wishing we were lying in bed. :-)

Tomorrow we head out to try our hand at house hunting. Rental prices being as high as they are right now, we are considering purchasing. We are praying to find something in our price range that will be clean and livable and near the church. In our 13 years of marriage this will be our 11th move. And in those 11 moves God has always provided just the right place for our family. We cling to His faithfulness and know He has something, somewhere for this little growing family.

So, we look forward to what is ahead. All the changes can seem a bit overwhelming when we look at them altogether but God is able and capable and we keep trusting that He's leading us where He wants us to be.

When Life Just Doesn't Make Sense.

This song kept going through my mind last night as I wrestled with surrender, what it means, what it looks like.  There is more to come, when I am not chasing a 2 year old around, but for now, the song:
Blessings

New Baby Joys And Woes

Baby and I had our 20 week ultrasound this morning.  My midwife sent me to a perinatologist whom she works closely with.  They have a wonderful, respectful professional relationship and it was a joy to be treated with the same respect.

The perinatologist spent over an hour going over every little bit of the baby, measuring and checking everything that could be measured and checked.

The positive results: 99.9% sure there is no spina bifida.  The spine looks wonderful, head and brain are just what they should be, legs and feet straight and strong. The heart is doing well, measures just as it should and all the parts are pumping.

The negative results: there are two possible indicators of a chromosomal abnormality.  The more serious of the two being that there is a high amount of fluid in both kidneys.  This indicates either a blockage in the system somewhere or reflux, where the fluid is coming out but some of it is going back up again.  This problem cannot be dealt with at all in utero and is something that we would deal with as we meet with the pediatrician after birth.

As we were leaving, the doctor reiterated to us that we have a very healthy baby and there is a 98% chance that we are going to have a perfectly normal, healthy child.  But, now we are aware that there is a possibility of something more when the baby comes.

We ask for prayer for us as we process what this all means and for the baby.  We know from prior experience that God will give us whatever we need for whatever we will face but it would be so wonderful not to have to face anything out of the ordinary.  I guess we just ask for prayer that we would be prepared for whatever is to come and that God's healing hand would be on this little one.

And, in case your curious, it's another boy. :-)

Another Milestone Today

The pictures of Damek's first day of school and video of Caedmon walking are still coming, I promise, but I just had to share that today Caedmon walked backwards, completely unassisted, for the first time today!  He did it first in the water at aquatherapy but a few hours later, when Adam took him to pick Damek up from school, he said, 'Watch this!' and proceeded to turn around and walk backwards for six steps.  It was actually more of a backward dance, our little crazy son.  I wish we had video to show you.

Summer 2011

I have been a terrible poster these last few months!  The reason being that we learned in early June we were expecting our newest addition to the family.  I have had terrible 'morning' sickness (actually, evening sickness) for the past three months but am now on my feet again. 

Since my firstborn's first day of school is tomorrow, I am operating under the pretense that summer is now drawing to a close.  Here are some of our memories of this very busy summer:

Caedmon began the summer by standing up from the floor!  He continued to amaze us as he began walking with no assistance and has grown stronger and stronger throughout the summer.

Damek is a whirlwind and such a joyous boy.

Our neighbor pointed out this dragonfly tree.  We'd never seen so many dragonflies sitting still in one spot before.

After spending a week in Hutchinson for campmeeting we came home long enough to do some laundry and then were off for Oklahoma to witness our friend's retirement from the Air Force and his son's baptism.

No summer is complete without swimming lessons but this summer we learned we should have paid Grandma the $50.  She did a lot better teaching Damek to get his face in the water in two days then his teacher did in two weeks.

Cousins on the top of Pikes Peak.

Cousins!

Somehow these got out of order, but more Pikes Peak.

Damek learning a few pointers from his cousin on how to cross those bars.

So fun!  Uncle Wilber's Fountain, plays music with coordinated spouting water.

The Tuba Man, hidden inside until the music starts.

Gymnast Cousin.

Damek's 6th birthday, celebrated with lots of family in Colorado.

Cousins are so helpful at parties.

They help you eat cake and ice cream, very nice.

It was so awesome to have so many people we love in one place!

Grammie and Pop Pop!

Caedmon loves babies and cousins!

A trip to the zoo was very exciting!

The family and Grandma!

My Sky Riding pal.

The family and Grandpa!

We even got to throw a birthday part for Booga!

Again, the order is totally out of whack but Caedmon was so excited to be this close to a train, until the whistle blew!

So, there's a bit of our summer.  Coming soon, school pictures and video of Caedmon walking!