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kidney disease


Ten-Years-Old and Mad Courage

Tomorrow is my son’s 10th birthday. And right now, he is currently upstairs sleeping on a bare mattress with a bucket next to his bed. Not exactly the way we were hoping to send him into the double digits! He had stumbled down the stairs a few hours ago and asked if I would bring him to school because, after all, he was “feeling much better”. But looking at the dark circles under his eyes and the grayness of his skin, I encouraged him to rest a bit longer. (He was asleep within 10 minutes.)

This has been a year of transition for Cameron. A year of change and growth, strength and love. I’ve watched as he’s awkwardly tried to figure out how to be “cool”, yet smiled as he still asks for toy trucks and a sandbox digger for birthday gifts. He has faced numerous physical, emotional, and spiritual obstacles in these last 12 months. I’ve been proud to watch him find security in our home, which has allowed him to begin healing from wounds that have scarred him since he was just a little boy.

Four years ago, Cameron spent his birthday alone. He has a kidney condition that was first recognized when he became very ill while living with his birth father. Unfortunately, the man couldn’t be bothered to care for his child. Fleeing, he left Cameron all alone in the hospital until the police charged him with abandonment. Cameron turned 6-years-old surrounded by hospital staff, wondering why his family hated him, and assuming he was dying.

It took nearly four years for my son to find the courage to tell me this story. He has recently found his voice to share this, along with a string of other atrocities he endured during his first 6 years - things that have haunted him, caused him to hate himself, and a belief that others would hate him, too, if they knew how devalued he was to his first family.

It’s been a grievous few weeks in our home as we’ve heard these memories being shared by Cameron, as well as the ones shared by his sister. The courage to voice these things has come with a price, though. There has been a lot of rage. A lot of defiance. A lot of aggression. But understand that this is not a set-back in any way. There may be a lot of behaviors left to come, but when we choose to face our pasts, sometimes we regress. And sometimes we don’t know how to handle all the big feelings that come along with security and unconditional love.

But Love is bigger than Shame, and Hope is stronger than Fear.

Unfortunately, the set-back that we do have to face is the one surrounding his kidneys. With his condition previously being controlled by medication, we were told not to worry. But after 7 relapses in 2 years, it’s been determined that Cameron is a rare case. Where most people with this disease rarely have a relapse, if ever, Cameron continues to worsen. We had been hopeful as we’d tried a new preventative medicine. But sadly, the medication proved completely ineffective.

So now, my almost 10-year-old is taking an insanely strong medication that will kill his kidneys. Why? Because it will destroy them slower than his condition will.

Cameron was diagnosed with Nephrotic Syndrome and Minimal Change Disease. In a normal case, this wouldn’t be the end of the world, but in Cameron’s case, we are faced with some difficult choices that may need to be made in the future – things like chemotherapy, dialysis, or a transplant. Each time he relapses, Cameron’s kidneys spill the body’s protein into his urine, which is toxic for his already damaged organs. And each time he gets sick, it triggers more protein release. Sadly, even with no trigger, his remissions have come to an end and we find ourselves in the same predicament.

Our entire house has had the flu this week. Cameron included. But when he became ill a second time, I found myself becoming a little more concerned. Because is it just the flu? His current medication has numerous and devastating side effects. The doctor told us that it wasn’t a matter or if Cam would experience side effects, it was a matter of which ones and how severe. Is this part II of the stomach bug due to his weakened immune system, or are these side effects from an awful med?

I feel terrible leaving him in his room - isolated from the rest of us as his birthday approaches, hoping it isn’t reminiscent of 4 years ago. So far, he has called out from his room no less than 10 times, just to make sure I’m still here, wondering what I’m doing. And that’s why I keep going in and talking with him, trying to keep him company… and then Lysoling the crap out of myself as soon as I leave his room because, we all know that Mamas don’t have time to get the flu, especially twice.

Cameron is not aware of the severity of his illness. He already has so many worries and fears, that it seems cruel to add to them at this particular time, a time when so much bravery is already being required of him. But if you’d like to, feel free to post some Happy Birthday love to my page for him, and I’ll be sure that he gets them.

My goal is to make each February 9th from this point forward one of complete security, love, and encouragement for him. Thank you so much for all your prayers and love for our family. It has been our lighthouse these past few months and you’ll never know how much we love and appreciate you all.

When a boy wants cinnamon rolls instead of cake for his birthday, that's what the boy gets!

When a boy wants cinnamon rolls instead of cake for his birthday, that's what the boy gets!