You Can’t Ignore It.

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With everything going on in the world today with the election, terrorism, racism, all the ism’s that are used on a daily basis, there isn’t one for this.

Look at him.  That’s my son. He was sick and scared and afraid he was going to die in this picture.  Never once did I think he would have to fight for his life beginning at the age of 4.  Yes, 4.  The pain began at age 3 but the battle didn’t begin until age 4.

There are no meme’s for this unless I make one along with many other cancer mom’s that are in club not of our choosing who have taken pictures of their sick or dying child and put words across the top of it to grab the attention of the public because our kids are loosing their battles because the odds are stacked against them from the enormous lack of funding for childhood cancer research to the 20+ year old drugs that are not even specialized for children but adults being used to combat the monsters inside of them.  Where’s the publicity for that?  Adler’s brain cancer is inoperable.  Miracles happen, sure.  And there are advances in medicine sure, but his fear, our fear NEVER goes away.  I have anxiety attacks out of no where at times because I have suffered from PTSD due to the past nearly 3 years of dealing with his diseases so you can imagine the attacks I get when there is an actual trigger.  But there are no safe spaces for me.  No coloring books for cancer moms.  No special treatments for us.  We get colored ribbons to wear for the cancer of your choice and stickers or magnets to put on our cars and flags to hang at our houses and t-shirts to wear that support the specific killers that live within our children.  And by the way, many of us loose those cars because we can’t afford them due to medical costs and our houses too.   Many of us have to drive miles and miles to get the medical help our children need to survive because local hospitals or clinics are sadly unequipped for our children’s needs.  And our jobs don’t understand that we need to be on Zofran duty after every chemo treatment which means no sleep and we are still expected to be a part of society and maintain our lives.  I have had to retire from my position at our family business because I had to take on the role of a caregiver to Adler. I can’t get another job either because I am unreliable due to my need to be available in case of an emergency with Adler.  I am a living pre-existing condition.  Not hirable.  Our lives and many others have been shattered into pieces, capsized by heartache because we were told 4 words.  4 WORDS.  “Your son has cancer”.  It took my breath away.  I couldn’t move.  I heard the doctor tell me he had a 40% chance of living and I couldn’t even wrap my brain around that.  And we walked back down the hall with 45 minutes worth of information and soon after that I became an expert on his cancer.  I read and read and read.  I still do.  My brain never stops.  I am in survival mode almost all of the time.  When he eats, I watch him in case he gags and throws up.  Not only did he suffer from that during chemo but before from the hydrocephalus and now from his adrenal insufficiency that can cause him to be nauseous.  I have caught vomit in my hands many times.  There are bowls strategically placed around our house just in case.  I have to carry a shot with me at all times in case of vomiting for him or an injury that could cause stress to his body because he requires solucortef if that happens so I have to inject him with it or he could go into adrenal shock and die.  So when he plays soccer we are so happy but I am watching and wincing at the same time praying he doesn’t get kicked in the head or hurt too bad.  He will get hurt, I know that but too bad for him is dangerous. This is our life.  It is our everyday.  My everyday.  IT NEVER GOES AWAY.  And it’s important and real and deserves to be known and heard just like everything else with an “ism” at the end of it.  It is at epidemic proportions for our kids.  46 children will be diagnosed today and 7 will die today.  And that’s the statistic for EVERYDAY.  It’s nuts.  And my son is one of them.  We are the them.  The “them” that cancer effected.  Kids aren’t all bald and smiles like on the commercials for St. Jude’s.  That’s not how it is.  That’s an advertisement, not real life.  And people buy into that just like all the other cosmetically enhanced commercials and untruths portrayed daily in the media.  Just look at your current social media feed, you know what I mean.

This picture, this was real.  This was cold and raw and terrifying.  I know because I took it.  I was there with him after the ambulance took us the two hours to Chicago so he could be treated by the “right” doctors.  His doctors.  The ones that saved his life because before his shunt was placed via emergency surgery, he was dying.  Drowning in his own fluid that Riley Children’s Hospital missed and so did Elkhart General and Bristol Street Pediatrics.  I am and never will be a fan of those places.  Lurie Children’s Hospital saved his life.  You have no clue what it’s like to go through it, until you do.  I didn’t.  I didn’t have clue.  Now, I know.  I know it everyday, all day.  Even in my medicated sleep I know it.  I want everyone to see it too.  To know it is real.  There is more to life that politics, religion and opinions.  There are children fighting to stay alive that maybe someday can change this awful world we live in.  To make a difference and make it better.  But they need to get there.  They need the chance to grow up.  Adler was happy he made it 7 this year.  He said so on his birthday.  That ripped my heart right out.  He knows and understands the mortality of his situation.  He has understood it since the beginning.

He has never stopped believing in himself.  He has grown and loved and lived through it all.  And he still shines in the darkness of his diseases.  He is the rainbow in the storm.  The beacon of hope for those like him.  Don’t forget the love.  Because for kids and people like me love is what holds us together.  It is the fuel for our one day a time world.  It’s all we got and there is no Love Trumps Hate here or safety pins to hold it together.  Just us holding on to what we have and that is life.  A beautiful life with an unknown measure of time enjoyed through the anxiety and the tears and the contagious laugher of our son.  May he live to see a better day……may he just live.

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