Thursday, January 10, 2013

my son, his legs, and my heart

Jackson has been dealing with chronic leg pain for over a year now.


It began in the fall of 2011 when he began limping during a soccer practice. What started as a slight limp turned into trouble walking by the end of the evening. In the game that weekend he collapsed and couldn't take any more steps. My son couldn't walk. We headed to the ER immediately and within several weeks were dealing with a diagnosis of Leggs Calves Perthes Disease. The specialists at our amazing local children's hospital let us know that Jack's hip joints had minimal blood flow and would slowly deteriorate and die.  


I was totally unprepared for the diagnosis and felt like I had the wind knocked out of me. All at once we were looking at a virtually incurable disease that would limit our sons mobility immensely. Worst case scenario: several hip replacements throughout his lifetime.  

So we dove in. We did the research. We talked with pediatric orthopedic professionals. We did the routine visits. I even looked into carriers made for four year olds.  And we prayed like crazy. We even had our elders over who laid their hands on Jackson and prayed for healing.  

I'm schooled on needing the give the reigns over to Jesus. My world crashing to pieces and needing to hand him my brokenness. In those times I learn what it looks like when he puts the pieces back together (usually not in the way I would like) but in a kind of beautiful chaos.

But this time it was my son who was in pain. It's a totally different ball game when you learn what it means to give your child to God. I recognize that in a broader perspective, this disease is "small." But it still shook my world.


In January last year, just a few months after the diagnosis, routine x-rays puzzled Jackson's doctor. She was supposed to be observing his rapidly deteriorating hip joints. But what she saw was a perfectly healthy x-ray. Perplexed, she sent Jackson for more testing. Again, what the disease was "supposed" to be doing, it was not. Jackson's diagnosis was taken off the table.

This was amazing news. But confusing since Jack was still dealing with chronic pain. We headed to a pediatric rheumatologist. We awaited tests for Leukemia and Multiple Sclerosis (talk about a rough week awaiting those blood test results). Eventually, Jackson was diagnosed with hyper-flexibility. Essentially, since his joints are super flexible, his muscles are in a constant state of contraction (rather than contracting and relaxing), causing pain. We've been told to limit his activity. Some sports might not ever be an option for him.


So we're learning how to deal with Jackson's pain. It's fairly constant (usually some sort of sad face on this little chart that hangs in our bathroom and kitchen cupboards). We're learning to treat his pain with a mix of ibuprofen  essential oils, and as much rest as he can take (which is not much, let me tell you). And he's a warrior. He rarely let's on that he's in pain and you would never know it watching him. Anyone who knows Jackson describes him as "all boy" as he's in constant motion running (or jumping, or karate chopping, or somersaulting...) Most days are good. He bears with his pain. Other days he cries out, limps, or struggles with walking at all. I love watching his fiery determination through it all - he's amazing.


And in the midst of it I'm learning how to trust Jesus as a mama. As a mama who wants her little boy to be able to run and jump and climb trees without pain. To be able to kick the soccer ball around at recess without having to pay for it later. As a mama who loves to be in control, especially in safeguarding her son against hurts. As a mama who takes pride in her son running down the field and scoring a goal in the game.

A friend of mine was praying for Jackson with me the other day and said this: Jesus, may you use this in Jackson's little life so that he would trust you more fully and know that his only hope is in you. And I began weeping. This whole time I had mostly been praying that God would heal him. I've been missing it.  

I've been missing the big picture. This past year has been more than about the health of my son. It's been more than his pain. It's been more than my anguish I've been watching Jackson begin to live out how God wants to work all things for his good and God's glory even at five years old.  

And I get to watch the story unfold.

2 comments:

  1. How is he doing now? My son has been diagnosed at age 5 and has been waki g up on the night in pain. Did hour son have trouble sleeping?

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    1. He's doing really well and has learned to deal with the chronic pain (and yes - we struggled with pain at night too!) So sorry your little guy suffers as well. We've found what works best for him is essential oils. Feel free to message me and I can share more!

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