The fight

Gosh this is hard.  I feel like everyday I realize more and more how different my life will be because of what Levi has gone through in this battle.  Just two days ago it dawned on me that Levi is disabled.  Yes, of course I have a wonderfully handy handicap parking placard for him, but it finally struck me that he is actually physically disabled.  And yes, I go to one physical and occupational therapy session after another, but I just didn't get it.  Or want to get it. I recall that after we got discharged from the hospital, I still fully expected Levi to be 100% back to normal, with lots of work of course.  I kept asking his doctors and therapist questions that I only wanted one answer for.  I wanted to hear that yes, of course he would continue to improve and he would be the child you used to have.  I never got those answers I wanted, I got vague hopeful answers but never the answer that I wanted for Levi.  So now, sometimes late at night, when I should be in bed, I look back at those pictures I have of Levi "before" all this.  I look at his hands and feet and his eye and I miss them.  I study them, like they were a loved one that has died.  I wonder to myself if it will always hurt this much to look at these pictures of how Levi once was.  I miss the child that he was, that I wanted to have.  I miss the life that we had.  Trying to balance the fight to continue to heal and recover verses letting go and moving forward is an act I have not yet mastered.  Instead, I fight with Levi and the rest of the family fights too as we all have to keep moving forward, no matter what the outcome is.

standing on the mountain top and kneeling on the battle ground

after our "baby" dedication for all three boys
on Aug 12, one year after surgery...
a joyous day!

We have been wanting to get an update out for about two months. August 7th was the one year out from his diagnosis and then just this last Sunday October 7th was a year out of the hospital. Levi is still CANCER FREE and we have every hope in him continuing to make a great recovery. Here are some of what gets held on the inside as we do life as a family with three amazing boys...

We have come so far and yet we still have so far to go. It has been one year since we walked out of the hospital after two months of waiting. Waiting for the diagnosis, waiting for the surgery, waiting for Levi to stabilize, waiting for him to recover…and in this we are still waiting. I do not want to be ungrateful for the miracle that is Levi’s life. If you saw him most likely at first, second and third glance you would have no clue that there was anything abnormal about him. He looks and acts like a typical 3 year old. And yet as you watch him you would see how there was something a bit different. He has a bit of a limp in one leg, when he runs one side of his body seems tight, and he can’t keep up with the other kids. When you look into his beautiful blue eyes, it may seem that one eye is not tracking quite right. You may think it is just a lazy eye thing, correctable with some eye patching a maybe a surgery. What you would not know, what we do not know fully, is that he sees poorly out of that eye, and that everyday his parents battle to patch his eye, not even with the goal of regaining vision but simply to save the eye from being shut down by the body. You would not see the struggles of having 3 year old who is a long way off from potty training because his body is unable to regulate itself on its own without extra hormones. You would not see the big brother who loves Levi dearly, but hates having to be dragged around to all his appointments and therapies, and wishes that he didn't have to patch anymore. A big brother who has already talked about when his brother will be at the same school so that he can make sure that nobody pushes him. It breaks the heart of a parent to know that kids are cruel and that Levi will be made fun of and that his big brother will be his defender…in all this I look at Levi. I look into the sweet soul God has given him, his warm heart, his engaging spirit and of all my kids I know that God has given him the ability to handle these and the many more struggles that will hit his life.

The journey this past year has been one that has brought our family closer together. In many ways it is the grace of God that our daily struggles have not driven us apart. It ain’t easy to say the least, yet as we have hit rough patches along the way, our family and friends have been there to support us. More than that though is the truth of who God is, what it means to live by faith, has become a reality for our lives. This last week we sung the chorus of this song at the end of church and it spoke to both Kara and I. As I have since listened to and read the lyrics, the song is the story of our year. We are on the top of a major mountain and we can look back at really how far we have come and see God’s footprints along the way. Yet as we look forward, we do not necessarily see a lush valley below us. When you climb to the top of Half Dome, you accomplish something great, but looking East you see that you are just at the beginning of the journey, for there is plenty of rugged terrain ahead, many more peaks to climb. I won’t go into a commentary on this entire song, but believe me when I say, every line speaks to our story and God’s goodness in our lives, for never once did we ever walk alone. God is faithful in all things.  

Matt Redman - NeverOnce, New Album - 10,000 reasons, Year: 2011 (Click here to hear the song)

Standing on this mountaintop

Looking just how far we've come

Knowing that for every step 
You were with us 

Kneeling on this battle ground 
Seeing just how much You've done 
Knowing every victory 
Is Your power in us 

Scars and struggles on the way 
But with joy our hearts can say 
Yes, our hearts can say 

Never once did we ever walk alone 
Never once did You leave us on our own 
You are faithful, God, You are faithful 

Never once did we ever walk alone 
Never once did You leave us on our own 
You are faithful, God, You are faithful 
You are faithful, God, You are faithful 

Scars and struggles on the way 
But with joy our hearts can say 
Never once did we ever walk alone 
Carried by Your constant grace 
Held within Your perfect peace 
Never once, no, we never walk alone 

Never once did we ever walk alone 
Never once did You leave us on our own 
You are faithful, God, You are faithful 

Every step we are breathing in Your grace 
Evermore we'll be breathing out Your praise 
You are faithful, God, You are faithful 
You are faithful, God, You are faithful

So as we do life outside of the appointments, the therapy, the hours of eye patching each day, we are seeking to give Levi a normal life and get him involved in normal activities. It is easy to allow his disabilities to define him, because as his parent we want to defend our child from peoples judgments. We want to share his story so they understand. But the reality is when someone meets Levi he engages them and they are taken by his personality, his soft heart and gentle spirit. They see beyond the physical and see him for who he is. This is an area that both Kara and I want to grow in. We need to allow Levi not to be defined by his disabilities, and not hold him back from the being the amazing little boy God created him to be.

Do you remember back in 2003 when President Bush landed on the aircraft carrier with the sign "Mission Accomplished"? At the time the USA felt the job was done, only to realize that things had just begun. Not knowing that the battle they had stepped into was bigger than they thought. I would not say that when we left the hospital one year ago that we felt that the job was done, but looking back on what this year has brought I can say that the battle has been bigger than we thought.

-Dan