Autism Over the Years

Britton loves to be up high.  He loves to balance on the edge.  I personally
hate heights!

"Human life has always lived on the edge of a precipice. Human culture has always had to exist under the shadow of something infinitely more important than itself."

The edge of Waimea Canyon, looking down...

Life on the edge!   Right on the edge of a deep, dark, abyss.  As long as I'm on the edge, just looking down, I'm safe.  Everything is good...til it's not.  I live in a world of smoke and mirrors.  A world of pretense.  "How are you?  How is Britton?"  "Oh, he's good, we're good."  Smoke, mirrors, cause did you really want to know the answer?  Every once in a blue moon, some poor person asks me how he's doing, and I've had way too much reality that day, and I just spill it all right out!  "He can't talk, he has no reason to get up in the mornings, and his OCD has over taken all our lives!"  Then I just walk away.  Yikks!  I know you didn't want to know that.

We own a business, and try to function on very little sleep.  We are constantly worrying if he's sick again, how sick this time?  Will we have to close our doors and take him to the hospital?  We do a mediocre job of business often times.  We KNOW this. We don't have enough staff meetings, we don't attend enough continuing education.... there is so much that we would do differently if we had one second to think of something besides his health, his education, autism autism autism! We do however, offer a gift to patients that few clinics do.  We care!  We care, and we will do almost anything we can possibly do to help you get well.  We will research, we will take the time, we will listen.  "No matter how we feel, (or what we've just been through) We get up, we dress up, we show up and we never give up."  Some patients really need someone who will do that.  So many doctors are thinking, "time is money, I have 7.5 minutes with you, hurry hurry hurry."  Inspite of popular belief that doctors are all rich, most are just hard working caregivers trying to navigate a cobweb of a system that is constantly changing, cause if they don't, they can't pay their rent.  True, most are closed minded, but there are a few, who step out and do more good than all the rest combined.  I'll just be grateful for those.

I know it's true that we are living many people's nightmares.  There is so very little understanding for families in our situation.  We have this beautiful son, that was born with curly blonde hair and big blue eyes.  He talked nonstop super early, and we were sure he was a genius!  Then I got his MMR.  There was no going back from there.  Less than 12 hours later he was in a seizure, face all blue and I'm doing rescue breathing all the way to the Emergency Room.  One choice, and just like that our world tilted.

I've gotten a little lethargic the last few years.  I've not had enough near death experiences for me to remember I'm still on the edge of that big black abyss.  It's giant mouth ready to swallow my son, my whole family right up, when I least expect it.

A few fridays ago, Britton began to throw up.  I thought, oh goodness he's got that awful virus everyone has had.  I put him in bed.  I gave him fluids, I sat with him and tried to make him feel better.  There was so much vomiting that I convinced him to lay in the bath tub while I washed some of the smell and debris down the drain.  In a matter of minutes his face turned completely blue, eyes rolled back in his head and there was a circle of black around them.  I know I blinked at least twice before the reality hit me.  My husband came up the stairs, took one look and said, "Teresa, dial 911.)  I ran down, and called.  While the phone was ringing I wrote on facebook, some sort of incoherent post begging for prayer.
When the operator asked me what's your emergency, I actually said, "I think my son is dying."  I honestly didn't know what else to say.  The paramedics were slow in coming.  It will forever be burned in my mind, watching Randy pick up his 150lb son out of the bath, and carry him to the bed.  He said, "he should be dressed when they get here."  He put all his clothes on him, while he was totally unconscious, wiping blood off his face, confused and never knowing if this is the last time we will see him alive.  The paramedics were like, "a seizure, not such a big deal."  Then they looked at him, took his blood pressure, and immediately radioed, "transporting, we have an emergency."
I kept wondering if we seemed too calm to them?  We weren't really calm, we were battle weary.  We know that there is nothing we can do except pray.  We know that doctors probably won't know what to do.  We just use them for their IV fluids, and their diagnostic equipment.  sighhhhhhhh  But they can save his life in this scenario, so I am so grateful for them.

Trouble cannot last forever. "For his anger endureth but a moment; in his favour is life: weeping may endure for a night, but joy cometh in the morning." Psalms 30:5

This morning when Britton woke up and smiled a big smile at me, my heart melted.  The innocence of it just broke me.  I felt so tainted, so old.  He was in his own bed, in his own clothes.  He doesn't seem to remember how he got there.  The night before seems to be washed away by the hours of sleep.  The vomiting, seizures, the spitting up blood, all of it just a bad dream.  It must be, he's in his bed, but all the needle pricks, the bruises, the sore tongue, the broken foot... that was a nightmare.  But he just smiles and jumps up like all is right with the world.  I stop him, and force him to let me hug him.  I am so grateful he's alive.  He really knows no other life.
I hope you don't know this, but when you have a grand mal seizure, your face turns completely blue, your eyes roll back in your head... you mimic death.  Most parents have never seen anyone in this condition, and God forbid, not their child.  I'm seriously glad that's true, but it's a lonely world of "knowing the possibilities."  Maybe in some ways it's a gift...I'm far less likely to forget how much I love my son.  I expect the next few months it's going to take way more stimming, humming, OCD trips to the bathroom, and flashing lawyers from the probate court, (that's a fun story) before I'm agitated.  I glimpsed life without him for 24 hours, (again) I don't want to face that.

It's hard, especially at times when I am watching him struggle with more pain, and more illness, not to want to put the blame where it belongs.  I am sad, and I am angry.  I'm angry that people want to placate me, and pat me on the back and say things like, "I know you just want someone to blame."  Yes, I guess I do.   If it weren't so obvious what happened to him, it might be different.  When I think back over our first visit to the emergency room, and how they just ignored the fact that he had been vaccinated that day.  How we searched and searched to find something else, and we just kept coming back to the obvious.  We would ask again and again if it wasn't possible that the vaccine that day could be the cause.  They always just ignored it, like it was ridiculous.  He was diagnosed with a terminal illness, metachromatic leucodystrophy (say that three times fast)  cause ya know, you'd rather tell a parent that their child has about a year to live, than admit it was a vaccine.  We were, after all,  some of the first families with a child that this happened to, no one even considered the word Autism, it was 1 in 100,000 in 1990.  Hard to believe isn't it?  Now that's it's 1 in 54 boys, you gotta admit something sure changed, and I don't think it was human genome.

"Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world." - The Problem of Pain

Britton insisted on laying on the edge of this  cliff,
it's a two mile drop inches from his head.

But I've decided not to go off on that tangent this blog.  Right now I'm just so grateful that I was home with my son that night.  That Randy walked in the door the minute it all went out of control.  That he really recovered better than I can imagine.  That his break on his foot seems to be healing faster than anyone can believe.  That above all, God was with us, and cares about all of it.  I have a giant group of prayer warriors that immediately bombarded heaven in a call for help.

"Grief is great. Only you and I in this land know that yet. Let us be good to one another."-Aslan

The autism world so understands each other that we are certainly as close as soldiers in a long, awful battle.  God bless everyone of you, and you can always count on my prayers.  I learned how to battle, and I learned how to pray.  I have learned how to beseech the savior for an audience, and I have learned to believe that my prayers have been heard.  My favorite scripture is II Corinthians 1:3-5, ³ Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort,⁴ who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. ⁵ For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.

But all of this could be avoided if I would only refuse to love.  Love is the most painful of emotions, and yet the most exhilarating as well.  C.S. Lewis is my all time favorite author, I'm sure you figured that out from the quotes.  His quote on love is medicine for the soul, and reminds me, that love is not an option, it's as important as air.  

"To love at all is to be vulnerable.  Love anything and your heart will be wrung and possibly broken.  If you want to make sure of keeping it intact you must give it to no one, not even an animal.  Wrap it carefully round with hobbies and little luxuries; avoid all entanglements.  Lock it up safe n the casket or coffin of your selfishness.  But that casket, safe, dark, motionless, airless, it will change.  It will not be broken; it will become unbreakable, impenetrable, irredeemable.  To love is to be vulnerable."