It’s a gorgeous day in June.  The sun is shining and the air is light with little humidity.  The grass is still wet with dew that sparkled in the morning rays as they touched down in the back yard.  The sprinklers started as our world woke up.  He ate a turkey sandwich for breakfast with his juice and his meds.  He smiled while he ate.  It makes me happy to feed him and to watch him enjoy it.  He has always hummed while he ate.  He has always shown such joy in the little things that to me, are as big as that sun that rose to bring us the warmth that we crave as humans.

I have been filled with sadness over the past couple of days as a boy we knew with cancer passed.  He was 14.  I met him once or twice at the hospital along with his parents.  It was when Adler was in treatment.  His name was Braden.  He was a special kid.  I don’t exactly know why this one has hit me so hard.  But it has.  And clearly, I know it’s not Adler’s story but that doesn’t make it any less difficult.  He was being treated by Dr. Morrison at Memorial in South Bend.  That’s Adler’s doctor.  She sat with him, explained to he and his parents what would happen to him.  I cannot tell you how that hurt to read. She was also with him when he passed.  The tears and the sadness and the anger and the fear surged inside me like a currant as I read the posts on his devoted Facebook page.  The tears fall now as I write between sniffs and wiping them away.

I am a mother to a child with cancer.  It is terrifying to know that a killer lives with in your child.  He was diagnosed at age 4 and knows no other life than one of cancer and pain.  Yes, things are stable and better now but the fear never ever leaves.  And I am sure that’s “normal”.  He also has hydrocephalus which there is no cure for and is a forever disease.  And his adrenal insufficiency is no joke either and is a forever one too.  The flu or a virus to Adler could be deadly.  Adrenal shock is serious shit.

We go to Lurie for his next MRI in less than a month and it’s always the same fear……that the cancer has grown again and we have to start a new and still scary treatment yet again. Chances are that will happen in his future.  We just don’t know when.  It could be months, or years but the fear remains the same.  And do I feel “lucky” that his cancer isn’t as bad as others, sure, but it’s still there and it still sucks and it still scares me and him.  If you haven’t had to discuss the fears of death with your child as they vomit and shake and cry in your arms, then you don’t know.  And the anger that you have because your one and only child has 3 diseases that he will have forever makes you second guess a lot of things that you never thought you’d change your mind about.

Oh, I know that life isn’t fair and life it tough and all that shit but this……. well this just fucking blows.  Braden had his whole life ahead of him and it was stolen from him.  And so many others before him and after him.  46 children are diagnosed a day and 7 die a day from childhood cancer.  How in the almighty fuck is that ok?  7 A DAY!!!!  Will my son be one of those?  I don’t know?  I hope and pray that he won’t be, but I am sure all the others who lost a child hoped and prayed too.  And yes, I know he was ready and he felt the spirit unlike anyone I have ever known but it still hurts.  It’s still real.  And that is our reality too.  Adler isn’t terminal yes, I know, but he has cancer.  He isn’t living life like a normal 6 year old boy because he isn’t normal.

We don’t let the diseases define him, nor us, but they are a part of our everyday.  We make it ALL count too.  You have to because tomorrow isn’t promised for any off us and then you stack the deck against him and well……you just have to appreciate it so much more.  So yes, he gets a lot of toys and video games and I let him do what makes him happy.  He deserves it.  All kids deserve to be happy.  Cancer or not.  I mean, he’s not a brat or an asshole so why not?  He’s very appreciative of all we do for him.  I mean, what kid jumps up and down for a free sample at Costco?  My son does.  He even said to me “I have been happy all of my life.  I just want to have fun everyday”.  And he does.  He lives life like he’s dying.  And he may sooner rather than later and as his mother I have learned to teeter between acceptance and despair with that.  It’s not easy but it is what it is.  And we just don’t let go no matter what.  To the hope and the love and the light that is in our darkest days.  The sun shines from within him and we let that illuminate and grow and don’t hold it back because it must shine.  Shine as brightly as it can for as long as it can.  Through his contagious personality, through his unique laughter and his big words and the quirks that make up our son and all his being.  His love and lust for life shows and we applaud it and cheer him on daily.  Even when exhaustion and heartache way heavy on our own souls.  Deep breathes and cleaning thoughts and many distractions and day dreams with music and entertainment help. And on repeat in my head is  don’t let go.  Just don’t let go.