Brave

 Ethan is brave every day.  Yesterday, I was brave for him.  I wanted to post the words that I shared with the medical advisory board which voted 8:2 in favor of accepting autism as a condition to recommend to be treated with medical cannabis.
“I am learning more on this parenting journey than I ever expected to learn.  Honestly, I really don’t want to learn all this stuff.  I don’t want to know the side effects of Risperdal or Zyprexa.  I don’t want to have a reason to know them.  I don’t want others to treat my sweet boy with any less dignity than he deserves.  The grip of autism is not selective.  This child is only trying to make sense of his world and his emotional kaleidoscope.  I want him to eat lemon knots; I want him to be able to walk across the train tracks without being gripped by fear; and I want him to enjoy the Christmas lights with the rest of us.  I want him to know that he is a treasure and a great blessing, every single day.

We know that people with autism are often in a state of sensory overload.  Experiences are more intense: louder, scarier, more painful…often intolerable.  I have seen anecdotal studies of children close in age to my son, with similar behaviors, who seemed to get better almost overnight when allowed the chance to have medical cannabis.

With Ethan, there are extraordinary swings of angst, fear, and aggression.  In the other direction, there are flashes of brilliance and uncanny cleverness to outsmart a university scholar on a good day.  The days where the brilliance outweighs the angst, those are the days we relish.  We adore him.  We are exhausted on all of the days, but he has brought to us intangible things that we did not even know we needed.

Ethan, at seven, has been through two psychiatric hospitalizations when the behaviors became too overwhelming.  His therapeutic day school has now called on a behavior analyst to help with his programming.  I learned yesterday at his IEP meeting that my son had more physical restraints during the last calendar year than anyone else at the school.

I’m sorry for everything.  I’m sorry for the railroad tracks, the thunder, the bees, the wind, and for all of the other things that invade your head and stir your fears.

We don’t want him to have to go back to where he is not understood, where nobody sits with him as he falls asleep, and where he is presented with trays of brown things with gravy.  We don’t want to go back to a place where the outcome will be no different than the last time.

Then the moments come, and there is nothing we can do.

My little boy, at seven, has been on at least fifteen different medications.  We have never been sure if any of the medications have had any positive effect, though the negative side effects have certainly presented themselves.  Many children in states with more sensible laws have recovered the ability to function in everyday life by using edible cannabis.  I will never give up trying to help my son.  I feel that it is our ethical responsibility to offer this same opportunity to children in Illinois: the chance at a childhood that is governed by states of calm and joy.

Please offer this chance to my son and to countless others with autism who may not have words to express but who feel so very deeply, every single day. ”

Thanks to yesterday’s vote, we are one step closer.  No matter your thoughts and feelings about this, I want our story to be about standing up for our children, and about coming together to make a difference.  Many thanks to Elliott, my bright star, for being the guiding force.

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Marching On

103It seemed like a day ago that I was lamenting Sam’s return to the university after the Thanksgiving holiday.  Christmas is three days away, and Sam is once again home.  It’s not that it is really lonely around here, in the sense that there is a lack of company, without Sam.  It’s just that there is a lack of his company.  And I am well aware that in a few short years, he will no longer leave his shoes by the back door or brew espresso in his bedroom.

Elliott will be home tonight, for the first time since his cross country journey to Santa Barbara at the end of this summer.  Sam and another brother or two will be meeting him at the airport.  There have been camps, mission trips, sleepovers, and even some hospital stays over the years for the members of my tribe; I am not a stranger to such separation.  There is a certain comfort, and surely a sense of safety, in knowing that I will have all of my babies, young and old, with me for Christmas.

It’s the first time in all of my forty-eight years that I will not be with my parents for the holiday.  They are happy and well, and, hopefully, walking the beaches of Palm Coast.   There is a season for everything.  Change is hard.  It is still going to come, no matter how strongly I resist, and no matter how hard I push against the door.

Last week’s call from neurosurgery at Lurie Children’s Hospital reminded me of my true blessings, as if I wasn’t aware.  Those times when we become complacent as we march on through each day, those are the times when we are forced to reality, when we are forced to remember what has been, and even what may have been.

Something unthinkable happened to our family, and to Sam.  Ten years ago during Christmas time, we were in the depths of it, struggling to find our way.

This is Sam’s story, as written and compiled last May for the blog of a brave friend, Tara.  Two of her four children are brain cancer survivors.

“There was a period of time that my identity was consumed by one thing: I was the mom of a child with a brain tumor.  The sky opened up, and we were at the mercy of something far greater than us.  I am sharing some thoughts of the early days of our journey, some thoughts and journal entries from along the way, and then, eventually, the hope and healing that have followed. Looking back, I am able to see that there were plenty of signs.  I had made a promise to Gabriel, Sam’s younger brother, that I would ride the “Zipper” with him at our school’s fall festival.  After our turn at being mixed around in a metal cage, the ride had to close down because a bolt fell out. During that night, Sam, ten years old, came into my bedroom and woke me because he felt sick. I probably should have been the sick one after that carnival ride.

There were other things.  Little things, but things which collectively added up to great concern, and which finally caught the attention of the professionals when they culminated in a grand mal seizure on the morning of January 2, 2005.  We were met at the hospital by Dr. Suzanne Cook, who has been our family’s pediatrician ever since that moment.  There appeared to be “something” on the CT scan, and she shared that if this was her child, she would take him to Children’s Memorial Hospital in Chicago.  Within a short while, we were en route to Chicago.  I was unaware, at that time, that Dr. Cook had lost her beloved husband to a brain tumor just a short time before this.  The neurologist who first visited Sam at Children’s told us that he was fairly certain that Sam was developing classic epilepsy, and that was why he was having the seizures.  He hadn’t looked at the scan yet, as there had been a problem with the transfer of films from our local hospital.  He told us that with  epilepsy, Sam just could not swim in murky water.  Everything else, aside from taking medication, would be “regular.”  My husband, Dan, and I talked about this over lunch, how it was pretty good news, but it wasn’t sitting right with me.  Then they came in with the white coats after we returned to the room.  It seemed things were not quite as they thought,  and they requested that we please come into this conference room.  That’s when all of the important guys sat around us at a foreboding table and showed us the tumor on the MRI (the same tumor that was on the scan that they hadn’t seen).  They would have to talk to another doctor (our wonderful neurosurgeon, Dr. DiPatri) to see what he thought.  Then the meeting was over, and they got up.  I know I was shaking.  The intern sitting next to me left her chair out so I was stuck behind that table, and I just wanted to get out of that awful room.  That was the heaviest chair ever.  She had no idea.

There was a space of a little over two weeks between diagnosis and surgery.  What follows is my journal entry from January 11, 2005.

‘It has been nine days.  Yesterday was one of those indelible moments.  I wondered, at the time, if I was experiencing the demise of a life, of two lives, and all that follows.  He was my backpack
baby.  Perfect little boy.  I was right next to him, but still I could not save him from the fall.  The patch of  ice, the one that he had glided over so many times before, got in the way and Sam fell hard.  My arms full of groceries…Sam walked away, past the garage.  I struggled with the (bags): should I go after him?  Where is he going?  Down the block, Sam stopped and hurled his books into the snow.  He continued walking away, from the books, from the house, from me.  Why can’t I save you, little boy?  I got in the van; I had to.  Where had my boy gone?  He stood alongside an old oak tree, trunk larger than his 10-year old body.   He glanced at me as I pulled up, tears
streaming down both our faces.  Come on Sammy.  I’ll help you.  It seemed like hours before he turned and walked toward home.  Still wouldn’t get in the van, would not let me save him.  Time passed and I went to him in his room.  We dissolved in our sadness.  I’m so sorry.  Me, too.  I picked up the pieces, the strewn books, and tried to pull my thoughts together.  I wondered about why, and how, this had come to pass…This is all way too much for me to bear.’

Those days were among the longest I have lived.  I even wondered if my child would survive. Though the etiology and specifics of the tumor were unknown, the team decided that regardless, it needed to come out.

On the day of the surgery, January 18, 2005, I wrote:
‘Today, Sam went to brain surgery.  The hospital staff prepared us well, and everything has gone very much as they had expected.  There was a big vein that kind of complicated things just a little bit but still Dr. DiPatri felt that they had really gotten all of it…Sam really is remarkable, though, even more so than I expected.  Never has he complained, or asked why he had to go through this. It’s weird, I guess – all of our kids, biological or not, have gone through significant medical trials. This, though, has been surreal – a piece of time that landed down, just like someone accidentally elbowed it into our laps.  The essence of time really has no meaning as I’m here, and there is no urgency to anything.  The snow is coming down, and I have nowhere to go.  In some way, I don’t want to go away from the safe haven of the hospital, where the rest of Sam’s brain is.  It seemed an oddity that a child of mine could pitch a 55­MPH fastball because I am worth nothing to the world of coordination and athletics.  He’s here now, at my side, brain messed with, head stapled and bandaged, and I am afraid to take my pitcher home now.  Stay here a while, where they know how to take care of you, and where I won’t get scared.  Stay where I can sit by you and not answer the phone or door.  Where your peach face is forever peaceful, and your pleasant, quiet self sings with the angels.  All of the prayers, all of the well wishes.  Carry us home.  We are big.  We are strong.  We don’t know what to do or how to be.  We wish, and we watch the snow.  We are
thankful….’
And that is where the faith part certainly comes in.  While all of this was going on with Sam at the hospital, of course I questioned my faith.  I always have, and I always will.  That’s just part of me,
wanting to take things at face value but also wanting to dig deeper, and to find out “why.”  When Sammy first had his bandages removed, what I saw on his head was a crown of thorns.  As the wound has healed and his hair has grown in, most people do not notice the scar (except for the few days after a fresh buzz!)  Most people do not see Sam’s crown of thorns.  Most people may not see
God everyday, but still He must be there.  As we struggle with lots of changes and questions, I am constantly reminding myself that what is important is right before me.

In May, 2006, I wrote:
‘I often wonder why this happened to Sam, and what it all means.  I used to wonder if we were lucky or unlucky.  More than a year out from surgery, I know now that we are lucky.  I still wonder why others suffer from so many complications with their brain tumor diagnoses.  We need to keep working to make sure that others are lucky, too.’

And now, more than nine years out from surgery, Sam goes for long spans of time between brain scans.  I still wonder what his future holds.  I think back to the baseball season that began when his
stitches were barely dissolved, when he had to wear a hard hat if he would be allowed to play at all.  A young player approached Sam and asked, “why do you have that kind of hat?”  Sam’s reply: “Because I had a brain tumor.”   The boy merely said, “oh,” and ran off to field some grounders.

Sam is about to return home for the summer after his first year at the University of Illinois.  At a bit taller than 6’4″, he is athletic, driven, and happy.  I see the wisdom and compassion of someone who has lived decades more, and I cannot help but think that he, in some
small way, has been blessed through the opportunity to know the fleeting and precious nature of life, grace, and healing.”

So the office called last week to remind me that Sam is due for medical followup, as it has been two years since his last MRI.  We are going to take care of those things while he is home on his break.  And I have every reason to believe that what happens on those days will be part of this journey, part of the reason that we are all here.

It was the evening of our ride on the zipper, just before we knew that Sam was sick, that Gabriel made a Christmas trivet at a school festival.  I found it this year with our Christmas decorations; I am not sure where it has been for all of these years.  It is my reminder of the passage of time, and of the many blessings that are mine as we navigate toward whatever waits around the corner.

Wishing you peace this holiday season!