Saturday, January 10, 2015

A Long Update

It has been two years this week since Eli was diagnosed with mitochondrial disease.  Two whole years and I think I'm just now finally getting to a good place with it.  Perhaps that's because Eli is in a good place.  With treatment and lifestyle changes, his condition has stabilized as much as it can.  That doesn't mean it can't change tomorrow.  Or later tonight.  Or five minutes from now.   
Mito is a rare genetic disorder that affects the body's ability to create and utilize energy properly.  We tend to think of needing energy mainly for physical activities, but cellular energy is the foundation of absolutely everything we do.  Blinking our eyes, solving a math problem, fighting off an infection, and the beating of our hearts all require energy.  Mitochondria are like the tiny little Exxon refineries of our bodies, basically turning our food energy into fuel for our bodies.  When the mitochondria fail, organ failure and death are very real possibilities.  
So, what's changed in two years?  Everything.  Everything has changed.  First of all, since we now have a diagnosis, we also finally have a treatment plan, which consists of high dose vitamins, medications to manage certain symptoms (seizures, dysautonomia, etc.), occasional injections and infusions, and, most importantly, energy conservation.  A little over a year ago, we moved closer to New Orleans and closer to Eli's doctors.  This past April, E received a wheelchair which allows him more freedom to participate in life without wearing himself out too much.  It was a pretty devastating thought at first.  Until we got it and saw how much more mobile and energetic he was.  Now, it's just part of life.  He no longer goes to school but is homeschooled, which allows him the rest he needs during the day.  If he's not up for lessons one day, that's okay.  And we don't have to worry as much about illnesses (which have the potential to progress mito because of the high energy consumption of the immune system).   All of the interventions have worked together to really restore some health in E and give him a life again.  He is much stronger than when I last left you.   
Jonah and Bitsey are both doing really well.  They have settled into our new hometown easily.  Jonah actually likes school for the first time ever and has met some really good kids that he walks to the Sonic with on Friday afternoons.  Sonic is apparently the happening place after school.  And then he comes home and gives us the (long) list of all of the things he ate.  Bitsey turned 12 this week as well.  She is headed to junior high next year, and Jonah to high school.  I'm often asked how they are handling things with Eli.  Very well, actually.  They treat him no differently than any other siblings.  He's the annoying little brother that they fuss about but are intensely protective of.  Bitsey, in particular, watches out for him.  Sometimes they play together and I will hear her say, "Remember your energy" when he starts getting too rowdy.  It's all very normal, which seems to surprise a lot of people.  They don't cut him any slack and vice versa.  Which really makes me happy.  
As for me, mito has fundamentally changed who I am.  I am both stronger than ever and more broken than ever.  I am keenly aware everyday that this is the strongest he will ever be. That even with continued good health he will never live a "normal" life.  That there is a possibility I will outlive my son.  But, I'm also very aware how fortunate we are.  Many children do not ever live as well as Eli is right now.  We have an amazing team of doctors and professionals all working to ensure Eli has the best quality of life possible.  And, most importantly, I believe we have time.  Time, above absolutely everything else, is the most precious gift of all.   
As a caregiver, people sometimes seem to expect me to be a candidate for sainthood, to never have a negative moment.  If you know me, you know just how difficult that particular expectation is for me to live up to.  For me, saying it out loud has helped me come to terms with it.  The words you aren't supposed to say even if it's true.  Eli could die.  Not today.  Hopefully not for a very long time.  But, short of a miracle, this is as good as it gets.  This is the best we can hope for.  Living everyday robbing Peter to pay Paul in the only currency that matters here, energy.  And, as awful as those words sound, saying them helped me accept the worst of it and appreciate the best of it.   
Maybe that makes me a terrible mother.  I'm sure there will be some who read this and say, "I would never say that."  People tend to think admitting that you won't win the war means you give up fighting.  That's just not the case.  For me, accepting the worst possibility (as much as one can accept it) has helped me appreciate so much more where Eli is today.  Instead of being continually heartbroken for all of the things Eli can't do, will never be able to do, I get to appreciate what he can do and just the simple fact that he's here, fighting as always.  He's still making us laugh everyday.  He's the same funny, giving, loving, hopeful, kind, amazing little boy (with a complete lack of a social filter) he has always been.  He is a gift.  Every single day, even the hard ones, is a gift. 
I recently had a conversation with an Atheist friend who asked me why I still believe in God.  Believing in God is easier now than ever before.  My friend seemed to think of that as some kind of psychological catharsis.  His whole demeanor was "Poor thing has to believe in fairy tales to get through the day."  I'm fine with people thinking that.  But God is central to my life now more than ever.  What makes Eli special is not his disease.  It's his attitude, his outlook,  the random very deep thoughts that he shares, and the pure innocence and love that just shines through him.  He changes people.  I challenge anyone to be around him and not be moved.  Eli is the very reason I know God exists.  People often offer platitudes in hopes of easing some of our pain.  "God doesn't give you more than you can handle."  If only I had a nickel.... My response is generally a thank you for the thought.  But, mostly, I want to say, "Oh....wanna bet?" God absolutely gives us more than we can handle.  But, He does so while also lifting the burden.  I can't do this.  I cannot.  I cannot do this another day on my own.  I am able to only because He has never asked me to do it alone.   
That's not to say the dark clouds don't take over once in a while.  They do.  Mostly when he is suffering, when he is in pain that I cannot take away.  The worst thing in the world is knowing that I can never fix this.  So, I cry, and I beg.  Please, God.  Please don't take my son.  Please.  Please.....  And sometimes I don't even have words to pray.  I feel lost and empty and hopeless.  But, it's always fleeting.  Peace is somehow there again another day.  Hope.  Love.  Laughter.  Joy.  Those days far outweigh the dark days.  Without God, I don't know how I could go on.   Or why?  My heart is irreparably broken, and yet somehow continually full.  Sometimes I think maybe breaking my heart was the only way to let the love out.  Unlike Eli, I'm not inherently good and kind.  I have a tendency to be hard, cold, and distant.  I don't trust people.  I don't like a lot of people.  But, God continually fills my heart, and the pain and the love drip through the broken parts, melting me.  If that's not a miracle, I don't know what is.  
The prevailing question in my mind is often "What is enough?"  Will it be enough to see him as a teenager?  At 20?  30?  The truth is, there will never be enough.  Even if my life ends before his, I will never have enough.  Fortunately, that is where God comes in.  I am not in charge of deciding what is enough.  For a control freak like me, that was a hard lesson to learn. But, it is also comforting in a way.  I'm not in charge of the amount of time.  I'm only in charge of the quality of it.    
 Another question I am asked often is how do we do it?  I can't say that life is easy, but this is our normal.  Phillip works full time at a job that he loves, and I am resigned to the fact that, at least for right now, part time is all I can do.  Eli has a geneticist, neurologist, physiatrist, cardiologist, ophthalmologist, immunologist, orthotist, physical therapist, and occupational therapist, not to mention a regular pediatrician.  Although the day to day is routine, the revolving appointments are enough to exclude me from full time work right now.  And when he gets sick, there are often multiple infusions to help him fight off the infection.  I wish that I could work full time, but that's just not in the cards right now.  So, we just do what we have to do in order to keep him  healthy.  We always figure out how, by the grace of God.   
E and I go across the lake into New Orleans often for check ups and infusions.  Those days are often capped off by meeting Phillip for lunch at Hooters, which is still the Dude's favorite place.  I can pretty much get him to endure anything for a plate of chicken wings.  When E was in weekly treatment, we got to know the waitresses to the point that they'd ask about how his infusion went and show us pictures of their weddings and ultrasounds of their babies.  Which really is kind of funny, if you think about it.  But, it's also par for the course for #TeamE.  So many people we meet along the way somehow become a part of our world, and it's nice to see them after a hard day.   
I think so many people focus on the negative of our life.  They cannot imagine having a child as fragile as E.  But, they miss the really awesome things that we get to relish in.  The waitresses at Hooters.  The nurses who gave E a big box of chocolates last Valentine's Day because he was receiving an infusion instead of going to a class party.  The friends who randomly text, email, or call just to say "How are things today?" or the friends who bought up the #TeamE t-shirts that our friend, Brett Cormier, had made and then sent us selfies in their shirts.  You can't know how awesome that is, how it floats us through the tough times.  People aren't nearly as myopic as you may have heard.   
But beyond the friends who lift us up, there are the little things we get to soak in.  Some might miss a nighttime kiss or a hug.  We don't.  Even the nights when I'm tired and E asks me to lie down with him and sing to him, I am sure to take a snapshot with my heart.  I make a mental note to remember it.  Not just the moment, but the feel of his hot cheek against mine, the smell of his freshly washed hair, and the sound of his voice as he sings "You Are My Sunshine" with me.  I don't miss one of those.  Not a second.  Any parent can lose a child at any time.  We are just aware of the possibility.  That's it.  We don't live as though this moment, this day, is our last.  But, we do make sure that if that day ever comes, there will be no regrets about time we could have spent, words we could have said, or moments we shouldn't have missed. 
This year E won the Bantam Athlete of the Year award at the GUMBO games State Invitational Meet.  He had not been able to run in GUMBO in over a year because he wasn't well enough.  But, he worked really hard in therapy all year.  The day we started at his new physical therapy clinic, he told his therapist, Mr. Ryan, that he wanted to run again.  And he did.  He didn't place.  His little body has slowed down quite a bit since he first began running in GUMBO.  But, he ran his little heart out all the way to the finish line.  And I think maybe that is the most amazing thing about our boy.  Even on the days when it is too much, when I feel like I can't go any further, Eli keeps on.  The thought of giving up has never crossed his mind.  He gives us strength to go another day.  He comforts us.  As much as things have changed, some things have stayed the same.  E has not once along the way considered the possibility of giving up for even a second.   
Beyond our usual, Eli is still undergoing testing to determine the exact form of mito he has.  But, only for a more specific treatment plan.  Phillip and I have specifically asked that we not be given a prognosis or timeline.  Fortunately, his geneticist thinks as we do and has told us that no one can tell us what is coming and to take comfort in that.  And we do.  We don't live as though everyday is his last as I find that very negative, but we do live with a sense of urgency and appreciation.  Another platitude that I wish I had a nickel for is "It takes a special person" to raise a child like E.  Let me dispel that rumor.  Not true.   We have an incredibly special child, and by special I don't mean exceptionality.  Eli's specialness cannot be defined by an ICD-9 code.  Nor can his life, his spirit, or his reach be limited by a diagnosis.  It does not take a special person to be Eli's parent.  Truthfully, Eli changes those around him into people they never thought they could be.   It takes a special child.  That's it. 
While we don't live everyday as though it is the last, we don't look too far ahead.  I have struggled with the job interview question, "Where do you see yourself in 5 years?"  I don't have an answer for that because I don't think that far in advance anymore.  I couldn't begin to tell you.  We do have plans for the immediate and not too distant future.  Phillip and I are working on buying a house this year with Eli's future needs in mind, and we are planning on getting married this year as well.  Finally, right?  Jonah is going to work with his dad this summer and is going to high school in the fall.  Bitsey is going to junior high, and E, well, I don't know.  Since he met his goal of running again, perhaps it's time to set another goal for this year.  Beyond that, I don't know.  I don't care.  Today is good.   
While E's condition may make people sad, including myself, the overwhelming feeling is gratitude.  I know that no matter what comes, my greatest joy and deepest privilege is and always will be being his mother.  We are all infinitely better people than we would have been without this special little boy in our lives.  And at the end of the day, mito has nothing to do with what makes Eli the best person any of us has ever known. 

*** I do want to say that I'm not opening the blog up full time again.  I just wanted to update everyone and answer some of the repeat questions we get.  I hope that I have.  When I started this blog, I had quit writing fiction because reality was too much.  And now, I write fiction again because sometimes reality is too much.  :)  But, I might open it back up periodically for an update.  Until then, take it easy, my friends.

Saturday, February 9, 2013

My Last Post

This is maybe the most honest, and possibly longest post, I may ever write.  And also my last, at least for a while.  Let me explain.
Initially, I just disabled the blog, but after some thought, I feel like I owe y'all an explanation.  Because y'all have become part of our extended family.

In early January, we finally got the results of Eli's genetic tests.  I was kind of amazed at how well I held together during the 3 month wait, and for the first time in my life, I understood about God's strength. Before, I always tried to intellectualize it.  How can one gather strength from an unseen force?  But, when I needed it most, there it was to get me through.  There is no way I could have had that strength on my own. I am just not that strong.  But, God saw me through.

The day of the appointment was very stressful.  We spent the weekend at Phillip's mom's house in Covington and headed across the lake in the early afternoon.  We were a bit early, and the doctor was a bit late.  The last few minutes of the wait were the worst, and I had to leave the room to throw up.  I have never in my life been so nervous.

E was having a not so great day.  Which, as horrible as it sounds, was a good thing.  On his good days, he is very close to a typical 8 year old little boy.  And when we see doctors on those days, I always feel like they think I'm crazy when I tell them how tired he gets.  How he hurts.  And how I KNOW something is wrong with my son.  It always makes me think they think I WANT something to be wrong.  Which, of course, is crazy.  I would give my life for my son to have a normal one.  But, a mama knows.  And I knew.

And as crazy as it sounds, I was equally afraid of being told once again they weren't sure what the problem is as I was being told my son would die.  No answer is really not a good answer, despite what people would have you think. Because again, a mama knows.

Over the 3 month wait, E got weaker.  He missed 21.5 days of school last semester.  He would go a day or two and either get sick or be so worn out that he had to stay home and rest.  I would make it through a day, but when I laid my head down at night, I had visions of my son's funeral.  It literally sucked the breath out of me, and many nights, I just gave up on sleep.  Because I'd rather not sleep than have panic attacks and thoughts of his death.

Anyway, the doctor and intern came in and gave us the news.  E's tests suggest mitochondrial disease (there is no 100% diagnostic test for mito).  But all of the always terminal varieties were ruled out.  I cried.  Thank you, GOD!  We finally have an answer, and it's good one.  Or so I thought.  We left NOLA, and my head was spinning.

E was started on his first supplement.  Carnitine, which was low in his urine.  And cornstarch in juice at night to give his body a constant stream of glucose over night.  It's important that E have a constant caloric intake to keep his body from going into catabolism and tearing down his muscles for energy. (Because his mitochondria don't make energy like they should).  We had more blood work the next day so we stayed another night in Covington, then headed back home.

The cornstarch was a miracle almost immediately.  And continues to be.  E is sleeping well for the first time in his life.  He has been on sleeping pills since he was 2 years old.  But as the years went on, they became less effective.  He woke up in pain every morning.  Mostly his ribs ("wibs") and his legs.  The cornstarch seemed to take most of that away.  The dark circles under his eyes have gotten better. He has not complained of pain in the mornings since we started.  We have actually had some good mornings since starting cornstarch.  Not every morning, but definitely more than we ever had before.  And he stopped saying "I don't feel good" every five minutes (no joke).

But, the carnitine caused severe diarrhea.  Not to be gross, but so severe it was spilling out of his diapers all over the floor.  And it happened overnight, too.  So, he was waking up in a puddle of diarrhea.  Horrible.  And then the projectile vomiting started.  It was so bad, he was on my bathroom floor and looked up at me and said, "Mama, am I going to die?"  Talk about the absolute worst thing you could hear from your baby.  He missed another two weeks of school as we adjusted and finally just gave up on the carnitine (for now at least).  The vomiting stopped and the diarrhea slowly cleared.

He started Uniquinol, high dose CoQ10.  And his energy spiked!  He's actually had days since starting it where he didn't have to lie down and rest.  All day!  Not every day.  Which is the hallmark of this disease.  Waxing and waning.  He was finally able to return to school.

But, he was coming home exhausted and in pain.  Severe pain.  Pain so bad he clawed at his legs and begged me to help him.  But, I couldn't.  He had to ride it out. And my heart broke.  Just broke it into a million pieces to see him hurt like that.  I got online to read more about pain and mito. I found a blog by an adult woman with mito who described her pain. In it she said something to the effect of "The only consolation I have is that I am the one in pain.  Because if I had to see my child hurt like this, it would kill me". Again, just heartbroken.

The doctor started E on Cytotine.  I read about how it works.  It replaces some missing chemical in his body.  That's pretty much the only thing I can tell you.  But, it seems to be working!  He has not had a lot of pain since starting it.  And bonus:  it's a liquid that actually tastes good.  So good, in fact, he can't wait for his "orange medicine" in the afternoons.  We still have a long way to go to get the exact mix of supplements ("the cocktail") for him, but we are seeing positive changes, and I am grateful for that.

I quit school last semester.  I couldn't keep up or focus with everything we were going through.  And it's one of those things where, when you're past it, you can see why things happened the way they did.  God knew what was coming. I would've had to quit this semester anyway, failing or not.  E needs me, and that will always come first.

So, now he goes to school half days.  The hope is that he will get stronger with the extra rest time so maybe one day he can return to full time.  I walk to the school at 11:45 everyday with the wheelchair.  If its a good day, he walks home with me.  If its a bad day, he rides.  So far, it seems to be helping.  He seems to have a little more energy.  It's a new change though, so we will play it by ear.

I have connected with other "mito moms" which is both helpful and terrifying. Almost daily, there are stories of children being hospitalized or dying.  I kind of keep my distance.  I need info, but I can't think of losing my son.  And despite him having the "good" mito, I have learned that losing him to this disease is a possibility.  It can change minute to minute.  He could live a relatively normal life span with treatment, or he could go into system failure tomorrow and die.  Obviously, I can't focus on that.  But so many of the other moms do that I have to just stay away from them.  Because honestly, if I lost my son, somebody just needs to dig two holes.  I don't think I could live through a day without him.  Yes, I know.  I have two other children who need me.  And I love them every bit as much as I love Eli.  But, I don't think I could breathe without one of my children.  God bless the people that have to face that.  I don't think I could.   So, most mito moms are kept at two arms length.

Beyond the death talk, I see little hope.  When I asked what they do with school (prior to the decision to half day) I got resounding home school advice.  I'm not anti home school per se.  But, I am not a teacher.  And I want my son to have a life outside of me.  Even if just for a little while.  Your initial reaction is to put him in a bubble and protect him as much as possible.  But what kind of life is that?  I want my son to have both quantity AND quality of life.  And, I'm pretty awesome, but I'm not an 8 year old boy.  He needs time to be a regular little boy.  He needs to laugh and talk about Batman and be silly with other little boys.  Of course, I'm not willing to flat out risk his health to do so, and if the time comes where home school is our best or only option, then we'll do it.  But, right now, we're not there.  I hope we never are.  And right now, he needs time away from me.  Time to be a kid.  He not only needs it, he deserves it.

Of course, I have some great moms who are as positive as possible and beyond helpful.  And those have become my go to moms.  I know we will have bad days.  Days with pain and heartbreak.  Days I can't poke my head up from the avalanche of sorrow.  But, I choose to focus on the good days and to surround myself with those that choose the same.  The main mother that has been there for me (thank you, you know who you are) is a friend from long ago.  We just didn't know at the time she lived here that we were dealing with the same thing.  She has been beyond helpful.  And her mentality is much like mine.  I don't do negative for negative sake or blindly positive for positive sake.  I'm a realist.  And so is she.  She has not sugar coated (which I sincerely appreciate) but she also doesn't dwell.  I don't like dwellers.  And she has lifted me up more from 800 miles away than anyone else. I am so grateful for her.

More than anything, I am tired.  I have spent years doing advocacy work.  I have loved it.  I have needed it.  And I have met some wonderful people and been afforded the opportunity to do some pretty cool things.  But, I'm tired.  And right now, I don't have that to give.  I don't have the energy to delve into a new world, meet new people, and pick up a new placard.  I just don't.  Another reason I am grateful for my old friend who lives this as well.  I don't have to rehash our past or force a bond over this disease.  She is my friend beyond a diagnosis.  And that is what I need.

Because this situation has been much like a divorce.  I am learning again who my true friends are.  They are the ones who call me to check on Eli (and to check on me!).  And they make me laugh and talk about something more than E's condition.  And perhaps that is the greatest lesson I have learned from this.  I NEED to have something in my life to focus on other than E's condition.  For the past few years, I have neglected myself and focused solely on autism.  And I just can't anymore. Although this is horrible to type out and is probably the most selfish thing to think, I need to have an identity as myself.  Because, God forbid, if the day comes when we don't have E, my only hope of survival and being a mother to Jonah and Bitsey is to have a leg to stand on as something other than Eli's crusader.  Not that that is a role I will ever give up, of course.  That is as much a part of me as my brown eyes.  I will fight for my son until the day I die.  But, it's time for me to be a mama warrior for my children AND just Hills sometimes.  The best way I can be there for my children is to also be there for myself.  To find my happiness in spite of this disease.

So, this is my last post.  At least for a while.  One other thing I don't have in me right now is to chronicle our journey anymore.  It's not like I can ignore it, but I won't give it too much power over our life and our happiness.  And writing about it makes it central.  I believe as the days go by and we learn more and adjust, this too will become just a part of our life.  Not the entirety of it.

Right now, my boy is doing well.  His energy is increasing, and he is hurting less.  I could write down all of the things that are still wrong or every single fear I have.  But, words are powerful.  I prefer to just tell you he is doing well, and we are very hopeful.

We are hoping to move to Covington sometime in the future to be closer to Phillip's family and Eli's doctors.  And in the meantime, I am caring for my babies as always, and I'm writing. Fiction.  Because that's fun and an escape for me.  I have been told time and time again that I should write a book about our life.  But, I don't see that happening.  A good story has a distinct beginning, middle, and end.  I am hopeful the only ending here will be when I take my last breath.  And then someone else can feel free to write it.  As hard as this is, I just prefer to live it.

Tuesday, December 18, 2012

I Am NOT Adam Lanza's Mother

 I don't want to talk about Sandy Hook.  I don't want to think about it.  I am weak in that way.  I can't even watch Law and Order when it involves a child being hurt.  But, what happened last Friday was not fiction.  It seems like it SHOULD be.  It seems like something that should only be conjured up in the imagination of Hollywood writers.  But, unbelievably, its not.  It is very, very real.  And if I think about those sweet babies and their poor mothers and fathers, I will not be able to stop the tears.  I resolved early on not to subscribe to the 24 hour news cycle on this one.  I just can't. 

But, over the weekend, I checked in here and there.  I, like everyone else in our country, wanted to know the answer to the one question none of us will ever know:  WHY?  What could possibly motivate someone to do something so evil?  In a very different way, I am well acquainted with the cosmic why.  I have asked more times than I can count within my own family life.  Why were my sons chosen to have autism?  Why my family?  Why must they struggle so much?  What is the REASON for all of this?  And, I know from my experience, that the answer will never come in this lifetime.  But, I am a human being, and I am incapable of not asking why when something like this happens.  I look, like everyone else, for some reason.

Late Friday evening, I checked back into the news to see if any new details had come to light.  And what I heard literally rocked me.  The shooter is "reported" to have Asperger's syndrome.  Instantly, I knew the repercussions of those words.  I felt my heart drop like I was riding some very unfun, terrifying version of Space Mountain.  I knew this would spawn waves of hate for people with autism.  Including my sons.  Never in a million years did I think the tragic events in CT would find their way into my living room in Louisiana.  But, they did, and I have been reeling ever since.

Almost immediately, I began getting calls and messages from acquaintances who do not have experience with autism questioning autism as a cause of violence.  These came in the form of genuine questions, not judgments.  I felt comfortable after speaking with each person that they understood autism a bit more.  That they wouldn't shuffle their own children away from my boys if we were to see them out somewhere.  But, then, I started reading comments on various sites on the internet.  People calling for children with autism to be locked up and blaming autism parents for not doing a better job.  The anger was immediate.

No one, except those who have a child with autism, have even an iota of a clue about what our life has been like.  Many will never know the pain of watching their child struggle to speak and becoming inconsolable when he can't.  They will never know how we worry when we drop our kids off at school because violence against our kids is not at all uncommon.  How when we see the PTA mom drop Little Johnny at the door and head off to Zumba without a second thought, we sometimes feel a pang of jealousy and wonder what it must be like to be so carefree. Or how it feels when your child is passed over for an invitation to yet another birthday party. 

They will never know what its like to sit in an IEP meeting or doctor's office and have people tell you all of the things your child can't do.  Or the gratitude you  feel when they finally can.  They don't know that when our FB friends with young children complain about changing diapers, we bitterly think, "Try doing it for 8 years."  Or how even when you're curled up with your little guy watching the same episode of Max and Ruby for the 900th time, you are acutely aware that no other 2nd graders still watch that show.  And it doesn't look like yours will be ready to move on for a while.  If ever.  They don't know how you have taken your kids to thousands of hours of therapy and lost almost everything you've ever worked for to do so. That your little one can't even go to the grocery store without wearing noise canceling headphones because everyday sounds hurt his ears.  That he can't touch styrofoam, and when the waitress brings him the styrofoam kid cup with the lid, he just patiently sits there staring at it until you ask her to bring him a different cup so he can drink.  Or how, even though he speaks, he doesn't communicate that much and figuring out what is going on with him is a constant guessing game.  They don't know that you had to pull your child out of school in 2nd grade because the bullying (by an ignorant, insufferable, unwielding teacher, no less) has brought him to the brink of suicide.  At 8 years old.  Or how it feels to have the neurologist tell you that you can either pull him out of that toxic environment and give the antidepressants a chance to work, or she will hospitalize him.

They will never know the very deep pain you feel when your child punches himself (never another person) when the school fails to comply with the IEP and he is confused and frustrated.  How you would prefer to be punched yourself than ever see your child hurt himself.  They will never know how you feel isolated from people you love because even though they love and accept your children, they still don't know much more about your life than anyone else.  They definitely don't know about scrubbing diarrhea off the floors and walls when his intestinal issues act up yet again.  Or how you cry the whole time, asking God to make it stop.  And they will never, ever know that every night when you go to bed, you beg God to not let you die for a long, long time because you don't know who will ever take care of your child.

This is my reality.  I do not live in fear of my children.  But, I do fear for them.

But, for every negative, horrible thing we have endured, there has been at least one good thing that kept us trudging on.  Six years since autism entered our life, and I live in awe of how far my little family has come.  And when I hear someone make a disparaging remark about children with autism or their parents, its like a slap in the face for every day my family has had to fight through.  We deserve more.

Monday morning, I was contacted by Michelle Cottle with Newsweek who wanted my reaction to the autism link to the CT shooter.  My reaction is anger.  (And it shows.  I was fussed at by several people for being quoted as saying I want to punch ignorant people in the face.  But, 1) I am always me and make no apologies for it.  2) I have never actually punched anyone in my life, and I can't imagine I ever will.  And 3) hyperbole, people.  Geez).   But, I am angry that the national TV news media has run with this angle of the story and even had "experts" on who perpetuate ignorant stereotypes.  I know many, many families living with autism.  I know none who have a child capable of plotting and carrying out a mass murder.

I am an autism mother, but unlike the other blog floating around, I am NOT Adam Lanza's mother.  My boys are autistic, yes.  But, they are so much more than that.  They are kind, conscientious, loving, funny, and the absolute strongest people I've ever known.  They are completely incapable of purposely hurting another person.  Yes, they have had outbursts.  But, they are reactionary to some outside frustration.  An inability to communicate their wants or needs.  Not feeling understood or accepted.  Stress at school.  And the recipient of their momentary anger is always themselves.

They are not evil.  In fact, they are better than most people.  They don't bully.  They accept everyone as they are.  They share what they have with those who are without.  They are really, really good kids who happen to have autism.  My children (all 3 of them, because autism affects the entire family), are, in all honesty, my heroes.  They are the reason I get up every morning.  They have taught me to be a fighter and also what true, unconditional love is.  Of course, every mother loves her children unconditionally.  But, you can't really know the depths of that until conditions are applied.  I am a much better person than I ever would have been because of my children.

The significant thing about this is that my children are not an exception to a rule.  They  may have autism, but  they are individuals just as you and I are and are not defined solely by the illness they fight.  Yes, I feel a kinship with other autism parents because they get it.  But, I do not assume that their children are just like mine.  Because none of them ARE autism.  They are Jonah, Eli, Caleb, Austin, Adam, Liam, Shane, Ty, Grayson, Catherine, Ricky, Bryan, Jazmine, Shea, Rory, Cole, Moises.  And countless, countless others.  They are not Adam Lanza.  And they deserve the opportunity to show you what lies beyond their diagnosis.

Sunday, September 30, 2012


For two years now, Eli has participated in the GUMBO games, our state's junior Paralympics club.  GUMBO stands for Games Uniting Mind and Body.  It's track and field events for kids with physical and visual impairments.  Kids with all levels of ability compete, from those like Eli with slight gait deviations to kids in motorized wheelchairs and everything in between.  Eli's old APE teacher got us involved last year, and it has been one of the best experiences for him and us.  

Everyone of those kids amazes me.  They race with braces, crutches, walkers, and wheelchairs, and they give everything they've got from start to finish.  Everyone is SO supportive.  Parents cheer for each child, not just their own.  When E comes off the track after a race, he gets high fives, pats on the back, and congratulations from almost everyone he passes.  And it's that way for every child.  Even the ones who come in last.  Sometimes a child is a lot slower than their competition, and they are often cheered the most to the finish line.  Because at the GUMBO games it's not about winning and losing so much as it is about giving it your best.  It is the most positive experience I've ever had.  

There are 4 meets in the Spring:  Lafayette, Harvey, Alexandria, and Shreveport.  E competes in the shot put, discus, soft ball throw, and the 60m and 100m runs.  If he places at any of the Spring meets, he is invited to State in the Fall.  He doesn't have a lot of upper body strength so the field events are not his favorite.  But, he loves to run.  He always gets very agitated before his events.  He doesn't have patience for things like the opening ceremonies.  From the stands, I can see him on the field next to Phillip getting stressed out while they're speaking and saying, "Come on, already!"  But, when it's race time, he calms down and when the gun goes off, he runs by with the biggest smile on his face.  And I cry.  Because I was not supposed to see my child be able to run, and I don't know how long he will be able to do so.  Every race is a gift.

The past 6 months, it has become apparent that E is getting weaker.  When he was diagnosed with cerebral palsy, I only hoped to see my child walk.  And then he did!  And, silly me, I thought we had beaten CP.  But, a few years later, he needed the braces, and I was kind of shocked back into reality.   It doesn't go away.    I was told that the bigger and heavier his body gets, the more pressure is put on weak muscles, so over time, we might see more weakness.  And then the fight became about keeping E as active as possible because the more he builds his muscles, the longer he would be able to walk and not need a walker or a wheelchair.  I thought that would be years and years off, if we even got to that point.

But, now with the mitochondrial question and the fact that E has been getting weaker over the past 6 months, reality is hitting home.  When I asked about the future possibility of a wheelchair, the physiatrist just said that Eli is in God's hands.  And the new PT said that it is a distinct possibility.  Especially if it is mitochondrial because it causes progressive weakness.  A wheelchair may be sooner rather than later.  

It is not something you can dwell on 24/7.  You have to take the good days and be grateful.  But, E has more pain now.  It used to be just his legs every now and then.  But, now it's more frequent and includes his ribs and his back.  The doctor said his muscles are so weak that simply holding his body up can wear them out.  His OT has noticed more tremors and the handwriting that we worked on for so long is deteriorating.  But, today, he ran.  
And he won!!!!  He placed gold in the 100m, silver in the shot put and soft ball throw, and bronze in the discus and 60m.  He met the standard in his runs.  

My mom commented today, "He's not as fast as he used to be".   I know.  But, he can still run, so I am grateful.  Sometimes being grateful is hard, I'll admit.  Eli lets me know all the time that he wants to play football for LSU.  And it hurts my heart every time he says it because I know he'll never even be able to play pee wee.  Of course, I don't tell him that.  I just play along as he tells me about how he's going to be the best "catcher" (running back) his Tigers have ever seen.  And I silently say a prayer that God will give him acceptance one day that his body is just not as strong as his spirit.  

But, in the meantime, I take every meet, every race, with gratitude.  Because perhaps the best thing about Eli is that he has no idea that there is anything he may not be able to do.  He does what he wants to, and because of that fighting spirit, he has done things that were initially thought impossible.  He doesn't know that he needs more rest than other children, that he hurts more than other children, or that other kids can run all day and not need a nap.  He is just Eli.  And he is amazing.

Friday, September 21, 2012

My Apologies to Mom and Dad

I have to make apologies to my mom and dad before I even write this post.  What I am about to say may hurt you, and for that, I am so sorry.  I long ago promised honesty in this blog.  And this has been on my mind.  I need you to know that what I am about to write is not meant to hurt you but to explain our world a little better.  

A little background:  my parents adopted my little brother in 1984.  He came to us as a foster child.  We had many children share our home in my early years.  Some left an impact, some were just passing through.  "Bob" as he became known (his real name is Jacob, but nobody in my family calls him that--long story), became part of our family.  He was a preemie born to an unwed biological mother who immediately placed him for adoption.  He had hydrocephalus and the pressure on his brain caused damage that caused CP and developmental delays.  He was different, and as a child, I resented the time and attention he required.  I didn't understand.  I watched my parents fight for him.  IEPs and the like.  Much like Eli, doctors often told my parents Bob wouldn't be able to do much.  He was never supposed to do what he has done.  

When I try to glimpse the big picture (which isn't often because my poor brain can't handle it), Bob factors in a lot.  The lessons I learned from his life stay with me, and sometimes I wonder if his purpose was to help make his nephews' world a little better.  I had no idea growing up how much I was learning from his struggles and my parents' constant battle.

Bob was officially diagnosed with autism in his late teens.  In the 80s, autism was not nearly as prevalent or understood as it is today.  His fight was even more difficult than ours.  He was misunderstood, labeled, dismissed, and demeaned.  No one besides my parents expected much from him.  He was very intelligent in certain areas.  I remember a teacher giving him an old textbook one year, and he spent the summer doing math problems for fun.  Math was always easy for him.  It was the only thing easy for him.  

Bob is stereotypically socially awkward with no filter whatsoever.  If he thinks it, he says it.  Most of the time, it's entertaining as hell.  Sometimes it's annoying.  He has a heart of gold like Jonah.  One time, my mother got a call from one of those Feed the Children deals.  Bob had called the number from TV and pledged money because kids were hungry.  He's a good kid.  I say kid, but he'll be 30 next year.  But, Bob is perpetually child like in many ways.  

With this school issue we are dealing with for Eli, Bob is heavily on my mind.  My parents fought hard for his education.  And he graduated from high school with a regular diploma in 2001.  An amazing achievement.  But, deficits remain.  When Eli's principal places sole emphasis on education, I think of my brother.  

Don't tell my dad, but there are many things Bob cannot do.  During his childhood, therapy was not as common.  And some things were overlooked.  It was a HUGE argument between my parents (now divorced).  Early on, Bob became attached to my dad much like Eli is attached to me.  I do love my dad, but I place a lot of the blame for Bob's deficits solely at his feet.  My mom would try to work with Bob on social interaction and various other deficits only to be shut down by my dad.  

I think it is a very difficult line to walk as a parent between wanting and trying to make your child "typical" and quietly saying they are not good enough as they are.  My mom wanted more for Bob; my dad thought he was
just fine the way he is.  Of course, in some ways that's true.  He is a really neat, unique person.  But because my dad limited interventions, there are many things that he cannot do.

Yes, he got his high school diploma.  Which is awesome.  But, while my older brother and I had chores out the wazoo, Bob was essentially exempt.  I've never seen him wash a dish or fold laundry.  Enter childhood resentment.  But because of those things, basically Bob cannot function as an adult.

At 29, he lives with my 63 year old father in a remote cabin in Eastern Tennessee.  He has no friends, no job, and no peers.  Everyday is spent hanging out with my dad.  Prior to moving there last year (my father's retirement dream), he held a job for several years as a janitor in a hospital.  He doesn't mind work.  The problem is basic life skills never occur to him.  He was able to hold a job because my dad made sure he got up and got off to work on time, that he had clean clothes and a lunch, that his paycheck was put in the bank, and that his few financial responsibilities were taken care of.  Bob does not bathe or shave without being reminded to do so.  Haircuts are left to my dad to coordinate.  Basic hygiene and self care are not something that occur to my brother.  He has to be looked after and always will.

These are things you cannot mention to my dad.  He lives in a world of denial where Bob hasn't yet reached his potential.  Conversations with my dad about my brother can be tedious and even treacherous.  The fact is, despite what my father believes, Bob is limited.  And I believe he is not limited by his diagnosis as much as he is by what he was never taught.  Despite what my dad thinks, at 29 years old it is too late to teach those skills.  He will always need help to do or remember to do the most basic tasks.

I say these things not to hurt my family, but more to explain why I do the things I do.  I have seen what can happen to a high functioning child when independent living skills are not addressed.  Eli's principal may put the utmost emphasis on education, but I put equal weight on life skills, which is why therapy is so important to me for Eli.  I want him to be able to do the things Bob cannot.  It may end up that Eli is dependent on someone for the rest of his life.  But, if we cannot get to complete independence, I want the highest level of functionality as possible.  A high school diploma is hugely important, but not more so than being able to independently brush your teeth or wash a load of laundry.  Over the next 10 or so years, I plan to not only help my son through school but to teach him how to live on his own.  Because I have learned the great importance of those things from my little brother.  

As for Bob, he is much like Eli in that he does not seem to notice his life is any different.  He is happy.  I am not.  I want more for him, too.  Phillip and I have discussed the possibility of my brother coming to live with us.  One of the reasons I love Phillip so much is that he loves and cares about the people most important to me equally as I do.  In our discussions about Bob, he does not cringe at the idea of taking on yet another person with autism.  The likelihood of Bob living with us while my father is still living is very low.  My dad is as important to Bob as I am to Eli.  But, none of us gets immortality simply because we have special children.  One day, my brother will need a new home and someone to help him, and I imagine that will be us.  We'll have our own little group home.  But, I hope for him that day is a long way off.

Mom and Dad, I know you did your best.  I hope I have not hurt you.  I am sure that I am making mistakes myself that my children will correct in their own lives.  And though it may seem that I am tearing you down for things that I disagreed with, I hope you know that even the things I may see as mistakes have taught me invaluable lessons.  I am grateful to you.  For every right and every wrong.  Without the life we have lived, I would not be able to face the challenges of raising my amazing children.  Thank you is insufficient.  And please know that as long as I am breathing, Bob has a home and a place in this world.