Life Support - for my mother

Wikipedia

Life support - refers to the emergency treatments and techniques performed in an emergency situation in order to support life after the failure of one or more vital organs.  

What a vivid lesson, this past month has brought.  My precious momma laying in a hospital bed.  Hands tied down, and a big 'ole tube, rather several,  stuck down her throat while she fought for her life.  And fight she did.  They kept drugging her and drugging her, and she still fought for consciousness.  It was incredible, and also one of the saddest things I've ever seen.

I don't think it was life she cared that much about, however ALL her children sat at her bedside, praying, and encouraging, and telling her how much they loved her.  This woman loves her children, and she was NOT gonna miss seeing them, even under these circumstances.

The one of the hardest parts of situation, was the fact that she could not speak.  In the beginning we gave her paper and pen and she wrote.  She wrote her needs, she wrote her desires, she even joked with us.  However as the severity of the situation and the fear and drugs took over, nothing she wrote made any sense.

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” 
― Lao Tzu

The kids, and even the grand kids would sit in her room for hours, and try and try to help, to understand what she needed.  She did the best she could, but she would constantly throw up her hands in despair, because we couldn't figure out what she wanted or needed.  I cried, and I grieved and I couldn't believe how close to my own life at home this was.  The nurse actually said to me, "you can't try any harder, she really isn't going to remember much of this."  I said, "But, I should be able to figure it out!  I have spent almost 25 years reading someones hand gestures, their eyes.  Discerning their intent, just by gut instinct.

You see, my son, Britton can't talk.  He uses his hands and his eyes, and anything at all to help us communicate with him.  He occasionally will still throw up his arms in despair.  His brain was damaged when he was just a baby...Our daily life seemed so much like trying to understand my mom while she was on Life support.  I never thought about it that way, and yet....  every day is about giving him the support required to stay alive.  He can never be alone.  He can't make himself understood, he is really at the mercy of whoever is with him.

“The world breaks everyone, and afterward, some are strong at the broken places.”– Ernest Hemingway

The similarities are pretty remarkable when you think about it.  His health has been a rollercoaster ride since the very first seizure back in 1991.  He could talk back then, not many people realize that.  He talked a blue streak as a matter of fact.  He loved to sing and repeat children's poems.  When he began to lose his ability to speak he would watch Disney movies nonstop.  I think he lost a lot of his ability to know what they were saying, so he kept trying, because he knew he could understand BEFORE.  sighhhhhhh  Such an awful thing to happen to a tiny child.

Then it was in and out of the hospital for tests, for years.  Heck we still do it.  But life-support has never ended for him.

Mom had that tube down her throat for four days.  She begged me nonstop to get it out.  She would beg me to untie her hands, and I would do so every chance I got.  (Inspite of the fact that my sister kept telling me I was going to "hospital jail!")  I would sit on alert, making sure she would not be able to pull the tubes out before I could stop her.  (Sitting on alert in a hospital, keeping watch is something I've had a lot of practice at.)  Having that tube down your throat, really is beyond terrible!  It is so unbearable that they give you paralytic drugs so that you don't gag to death.  I don't expect you ought to be conscious with that happening to you.

Truly, severe autism is pretty awful too.  In so many situations I've wished he could be unconscious so he didn't have to know what his life really entailed.  From the tiny two year old, losing his language, staring at me in confusion.  The nine year old, crying every single day til he vomited and mercifully falling asleep.  To the life of seizures of unknown origin that just come out of the blue and steal his health and everyones hope.  To the young man, who watches his nieces and nephews, born, and learn to speak and the questioning looks when he wonders why he is different.

I've felt so responsible all his life.  I spent years, doing all the therapies I could find.  Hoping and hoping and hoping.  Sitting him in my lap and begging him to see me, to hear me, "come back to this world."  I truly believe he has spent his life trying with everything in him.

Once again I have to say he is the bravest person I have ever known.  He still smiles, he endures more than I can even comprehend.  He fights those "straps around his wrists, and he begs me to set him free."  Every single day I try.  Every single day, I'm willing to go to "hospital jail" if I can make his life one tiny bit better.  It occurred to me that he's a lot like my mom.

"Promise me you will remember you are braver than you believe, stronger than you seem and smarter than you think." A.A. Milne

I know this is a little different than most my blogs, however I am going to add this comment.   You should have written down if you want life support or not.  If you do, GREAT, tell someone.  If you don't, TELL SOMEONE, and get it down on paper.  Life is beyond unpredictable,and I wish like anything my son could tell me what he wanted from the very beginning.  Of course that's not possible, but my husband and I have had long talks about life support.  It just isn't possible to know the contingency for every situation.  

It was brutal not knowing for sure what my mom would want if the situation got worse.
By the way,  we got a happy ending.  On day four, she miraculously began to recover.  The fluid drained out of her lungs, and she was able to breathe on her own.  In spite of the misery, my mom is a very unusual individual.  No complaining, no whining, just thankful.  She really is someone special. I am grateful she is my mother, I've spent lots of years being amazed at her faith, and her acceptance of her constant illness and pain.  However she never gives up hope of healing.

I've never understood how God chooses which people he heals, and which people he doesn't.  At the end of the day, I'll just thank Him and be grateful that life support is a possibility when needed.
I may have never felt so thankful.  My mom has lived on the edge of severe illness for longer than 15 years.  I realize that I will have to face living without her someday.  This "little scare" was some kind of a wake up call, even though I thought I was prepared, I am not.  I felt like a little girl, as I wrapped myself around her as she lay in that bed trying to breath, all I thought was "mommy!"  Apparently we never out grow loving our parents.

“But there's a story behind everything. How a picture got on a wall. How a scar got on your face. Sometimes the stories are simple, and sometimes they are hard and heartbreaking. But behind all your stories is always your mother's story, because hers is where yours begin.” 
― Mitch Albom, For One More Day

"You never know how strong you are until being strong is the only option you have"

Jesus can even use tic tacs

"Mystery is not the absence of meaning, but the presence of more meaning than we can comprehend."

Autism is indeed a huge mystery.  Ask any parent and they will usually shrug their shoulders.  People say to me, "What does he want?  What does that mean?"  Obviously I'm his mom, I should know.  But I don't.  I try try try try try.  Only God in heaven really knows how hard I've tried.  I still don't know what he's thinking, what he's feeling, if he's hurting.  Time has given me clues, but truly clues are all I have.  It's always a mystery, always a risk that I'll make a mistake.  Inevitably I make lots of them.

I recently reread the Pilgrims Progress, and it really wasn't what I remembered.  I had to laugh at how many times Pilgrim made a mess of things.  (Poor pilgrim, I am him!)  He got into trouble, he gave up the fight, he flirted with suicide, he was depressed and sad and spent lots of time in despair.  Most the books I read are all about living in Victory and how we can just get through this life on the mountain top.  Well, somehow Pilgrim didn't read those "self help" books.   I'd like to live on the mountain top, but I realized the mountain top is small and the valleys long and deep.  At a particularly low moment in Pilgrims journey,

Mr. Hopeful says, "Be of good cheer, my brother, for I feel the bottom and it is sound." 

So there you go.  How often in my life with autism, I need to be reminded that even when I'm at the bottom, this is as low as it goes.  I try to translate that for Britton, to encourage him.  I'm sure he wonders where the bottom is.  

So a couple of weekends ago, we woke Britton up around 8:45 and went on to church.  He was super easy going, and pliable.  He just did whatever, no growls or complaints.  We sat through the preaching and he didn't seem to want to leave.  So, we decided we would wait through the second service and just see how long he would stay.  It was such a rare treat for us.  One of the pastors came over and was visiting with us.  Britton reached in my purse for his empty box of tic tacs and I explained to him he had eaten them all.  (We bring tic tacs and hand lotion, those two things help him sit a little longer.)  Nothing was really said.  But honestly, tic tacs make all the difference as to how long we get to stay in church.  I massage his hands and arms and he just sits and then I give him a few tic tacs.  Whatever it takes to get to hear the Word we'll do it.  :)  The Pastor asked if we knew there was a book store and a coffee shop, and places that "might make church easier for us with Britton."  It was so observant, kind and unusual.  She offered to take me around and show me everything.  I was shocked enough to just nod.  Church life with the disabled is a very big test.  By that I mean, "church people" are not normally that nice to families of the disabled.  I'd describe it as more of a tolerance than acceptance.  We actually had a man at one church tell us that Britton would not be welcome in the regular services if he was going to make any noise.  Every once in a while I have had enough, and that was not that man's lucky day.  I replied, "Jesus made noise, I wonder if he is welcome in the regular services?"  Oh yes, I said it, and no I'm not sorry.  But back to the tic tacs.

I don't mean to sound tainted, although I'm certain I am.  I don't mean to sound cynical, although I'm sure I'm that too.  I just mean that it's unusual for someone to even notice what might be needed by a family with special needs.  Most churches are not comfortable with disabilities.  I mean, seriously, who is?
All the families that have children with disabilities that I know of, are constantly begging for help.  The truth is, the church hardly knows where to start.  The good news is, that the ones that really love Jesus do WANT to start.

"Jesus grieved over many things that happen on this planet, a sure sign that God regrets them far more than we do.  Not once did Jesus counsel someone to accept suffering as God's will; rather he went about healing illness and disability."

We have been loved by many Godly people, although autism is really hard to love.  We had a precious pastor who blocked off part of the back row, just so we could always sit where it was easiest for us.  God bless him, he's such a good man.  I think perhaps Autism families think that asking for what we need would just be too selfish?  However I cannot tell you all the emotions I felt that Sunday morning.  Just before church was about to start again, this same precious woman brought over a box of tic tacs to Britton.  I looked at my husband, and his eyes also filled with tears.  Britton signed "thank you" then blew her a kiss.  Then her eyes filled with tears.  I really couldn't believe it.  I don't know where she got them.  I know she was working and had a lot of more pressing matters, but she just wanted to help.  My husband and I have cried so many tears over that box of tic tacs.  Thank you Jesus, and thank you to the church.  Disability families don't really need as much as you might think.  When tic tacs seems like more love and concern than we could imagine, it seems the church needs to open it's eyes and realize it might not be that hard.   We just want to be included, noticed (in a normal way) cared about, and loved.  I suppose that's what everyone wants.  

"Truth strikes us from behind, and in the dark" 

Henry David Thoreau

But I believe in the church, I believe in God's family, though I have to admit that it often takes faith to do so.  Faith is not something as solid as I wish it were.  It's not a skill I've mastered, it's more like beach sand, falling through my fingers.  Faith has been in my life more of a gift from God.  I need to pray for it every single day.  I recite, "Faith is, the substance of things hoped for, the evidence of things not seen."  Over and over and over again.  The times I've experienced complete faith I can probably count on one hand.  Now if you're not a Christian you may think that's a strange thing to say.  But faith is not something we can count on our flesh to embrace.  As a matter of fact, everything inside of me screams, "are you insane, why do you HOPE for what is impossible?"  (BIG sighhhhhhhh)  Because God is the only one I can really count on.  Go ahead try to decipher that paradox.  :)  I cannot explain it, I just know that it is.  I know that it has changed me, and that when all else fails, God will indeed hold me when everyone else is gone.  

"If knowing answers to life's questions is absolutely necessary to you, then forget the journey.  You will never make it, for this is a journey of unknowables--of unanswered questions, enigmas, incomprehensibles, and most of all, things unfair."  

The people I love, I credit for good things and try not to blame for bad, assuming instead other forces are at work.  Together, we have developed a pattern of trust and love.
Over many years, through personal experience and God's word, I have come to know certain qualities of God as well.  God's style often baffles me; he moves at a slow pace, prefers rebels and prodigals, restrains his power, and speaks in whispers and silence.  But I see a great deal of evidence of his long suffering, mercy, and desire to draw us rather than demand our love and attention.

"When in doubt, I focus on Jesus, the most unfiltered revelation of God's own self.  I have learned to trust God, and when some tragedy or evil occurs that I cannot synthesize with the God I have come to know and love, then I look to other explanations."

And, I remember God's love, and I'll always remember the tic tacs.

"Mystery is not the absence of meaning, but the presence of more meaning than we can comprehend."

Autism is indeed a huge mystery.  Ask any parent and they will usually shrug their shoulders.  People say to me, "What does he want?  What does that mean?"  Obviously I'm his mom, I should know.  But I don't.  I try try try try try.  Only God in heaven really knows how hard I've tried.  I still don't know what he's thinking, what he's feeling, if he's hurting.  Time has given me clues, but truly clues are all I have.  It's always a mystery, always a risk that I'll make a mistake.  Inevitably I make lots of them.

Last weekend Britton overslept.  Now that seems like a statement that is not big deal, except, he doesn't sleep.  By that I mean, he averages 4 hours a night.  It's been that way for most of his life.  Randy and I have been tired for 24 years.  (tired smile)

I recently reread the Pilgrims Progress, and it really wasn't what I remembered.  I had to laugh at how many times Pilgrim made a mess of things.  He got into trouble, he gave up the fight, he flirted with suicide, he was depressed and sad and spent lots of time in despair.  Most the books I read are all about living in Victory and how we can just get through this life on the mountain top.  Well, somehow Pilgrim didn't spend much time there.  I'd like to, but I realized the mountain top is small and the valleys long and deep.  At a particularly low moment in Pilgrims journey, Mr. Hopeful says, "Be of good cheer, my brother, for I feel the bottom and it is sound."  So there you go.  How often
I need to be reminded in my life with autism that I'm at the bottom and this is as low as it goes.  

So last weekend, we woke Britton up around 8:45 and went on to church.  He was super easy going, and pliable.  He just did whatever, no growls or complaints.  We sat through the preaching and he didn't seem to want to leave.  So, we decided we would wait through the second service and just see how long he would stay.  It was such a rare treat for us.  Our pastors wife came over and was visiting with us.  Britton reached for his empty box of tic tacs and I explained to him he had eaten them all.
(We bring tic tacs and hand lotion, those two things help him sit a little longer.)  Nothing was really said.  But honestly, tic tacs make all the difference as to how long we get to stay in church.  Our pastors wife asked if we knew there was a book store and a coffee shop, and places that might make church easier for us with Britton.  It was so observant, kind and unusual.  She offered to take me around and show me everything.  I was shocked enough to just nod.

I don't mean to sound tainted, although I'm certain I am.  I don't mean to sound cynical, although I'm sure I'm that too.  I just mean that it's unusual for someone to even notice what might be needed by a family with special needs.  Most churches are not comfortable with disabilities.  I mean, seriously, who is?

"Truth strikes us from behind, and in the dark" 

Henry David Thoreau

Faith is not something as solid as I wish it were.  It's not a skill I've mastered, or something that I hold in my hands.  Faith has been in my life more of a gift from God.  I need to pray for it every single day.  I recite, "Faith is, the substance of things hoped for, the evidence of things not seen."  Over and over and over again.  

.......

A new year, a new  beginning, and new hope... How do I not hope?  How do I give up on that boy/man, that God has given us?  Where do we quit and just say... it's time to stop believing in miracles?  The human spirit is an astounding thing.  Just the teeniest little bit of hope, can keep us going for days on end.

It's Christmas time... and as I write this, so far Britton has spent all the hours that our other children and grandchildren are here in our home, hiding in his room.  He didn't want any part of it.  Noise, making messes, people talking and laughing.  I am trying desperately to be the hostess, the mom, the grandmother, the wife.  But there's a dark shadow in the back of my mind, my son is not part of this.  He is hiding away.  All this, unsettles him.  It seems to raise his anxiety, and basically freak him out.  It's all, just out of order.  Not in his normal routine.  We took his food in to him.  We even took up some of his presents.  (He didn't open any of them)  We use to try.  For years we tried all kinds of things to get him to be part of our world.  We finally accept, (I'm trying to finally)  accept that he cannot do it.  I'm sure he has wondered when we would finally get it.  WE are the slow learners.  It sure wasn't because he wasn't trying and trying to tell us.  I guess because we are his parents and WE WANT for him to be part of anything we enjoy.  Any family event.
I got it a few years back, but it took a little longer for Randy, (his dad) because that man is not a quitter.  He loves so fiercely and so sacrificially that giving up has never been an option.  I keep saying, "we aren't giving up, we are accepting."  It's hard to believe that's the truth I suppose.  I am always reminding myself that Jesus taught us that God is on the side of those who suffer.  We can rest assured that whatever grieves us, grieves God more.  That when we long for relief from so much difficulties, God longs for it more.

“Yesterday is gone.  Tomorrow has not yet come.  We have only today.  Let us begin.”  ―Mother Teresa

We struggle with the question of whether Britton will ever be better, ever learn more, ever heal his gut... ever get past this autoimmune encephalitis?  A struggle between, hope and fear.  A struggle between faith, and facts, a struggle between what is, and what should be.   Our attempts at treating all Britton's conditions, feel like the Whac a mole game at Chuckee Cheese.  We whack one, only to have the other rear it's ugly head.

Autism,  "islands" us, and I promise you, for anyone involved in suffering in some form, scale does not matter.  I read that studies show that people who suffer with someone at their side, live twice as long as those who suffer alone.  Not only that, but they are able to endure twice as much pain when someone stands beside them and cares.  It's almost like that person endures part of the pain for them.  I am reminded that Jesus said, He would never leave us or forsake us. He is always standing beside us, helping us endure.   I hope our constant presence at Britton's side does something to help him endure.  God knows we are vigilant.  We have gotten old watching him suffer... we have learned much in this land of suffering.  Yet, I  can't find any where in the Bible where Jesus told the sick to accept their fate, and just deal with their suffering.   He always, always, always, walked up and healed them.  I will not, give up believing that through whatever means, He will do the same for Britton.  If not in this life, than certainly in the next.

“Those who do not move, do not notice their chains.” 

Yes, it's Christmas, and he is 24.  We have had 23 Christmases with autism.  Nine of those we spent at Texas Children's hospital, it  seems forever ago, and also just the other day.  So much has changed, and that change is really what we have learned.  He isn't really any healthier than he was back then, we just don't take him to the hospital much anymore.  Now we know, that the medical community doesn't really know what to do about most of the things that happen to Britton.  AND, if you tell them he has autism, they almost stop trying to help.  We experienced that on two separate occasions this year, when Britton had seizures, and a near drowning,  the medical community basically stood by and did nothing.  Seriously, they did nothing.  He lost 50lbs in 6 months, and they honest to goodness, the Lord as my witness said, "It's just part of being autistic."  Then they refused to do a lower GI.  I mean, really?  It's so scary, how they just don't seem to want to treat people with autism.  I don't know if it's ignorance, or some strange fear.  Whatever it is, it's not good for families like ours.  It's true that gut issues accompany autism, but that is certainly no reason not to treat them.  No reason to leave a person in pain, just because they can't tell you how bad it's hurting them.  50lbs of weight loss is an extremely serious symptom.  But if you're autistic, and God help you if you are also unable to talk.... there will be very little help for you.  I read that a man who had survived the tsunami in Japan where an unthinkable number of people died in a matter of minutes. (19,000)  This man, told anyone who asked him, that the only possible answer is that God overslept that day.  Every time I think of God, "oversleeping" it breaks my heart.  Those of us who know God, know He never sleeps.  But this man, his pain, his despair, could not be reconciled with a God who watched what happened, awake.  His only rationale, is that God had slept through it.  I so understand that feeling.  It is a difficult battle, understanding.  Poor Job, did the same thing.  He cried out directly at God and asked for an explanation.  "Why?"  That is the question isn't it?  I once read a story where a man suggested that perhaps God had another world, and so on occasion he neglects this one?  It just doesn't line up with the grace and love of Jesus.  All my frustration, and questions, put me in very good company, the prophet Jeremiah, so frustrated, demanded of God, "I would speak to you about your justice."  Oh how often I have felt that one.

Yet it's the mercy of God that still astounds me.  Days that I cannot go on, He will find a way to encourage.  Today I received a poem, somehow I've never heard it before.

Heavens Special Child

A meeting was held quite far from earth,

It's time again for another birth.

Said the angels to the Lord above,

This special child will need much love.

His progress may seem very slow,

Accomplishments he may not show

And he'll require extra care

From the folks he meets way down there.

He may not run or laugh or play:

His thoughts may seem quite far away.

In many ways he won't adapt,

So he'll be known as handicapped.

So let's be careful where he's sent.

We want his life to be content.

Please Lord find parents who

Will do a special job for you.

They will not realize right away

The leading role they're asked to play

but with this child sent from above,

Comes stronger faith and richer love.

And soon they'll know the privilege given

In caring for this gift from heaven.

Their precious charge, so meek and mild

Is heaven's very special child.

(author unknown)

Wow, just wow.  It helped.  It's been some really hard days.  Although we look forward to being off work, we also know that we will be working hard at home, because, well...

Holidays are just HARD for those with disabilities.  They are hard because we have to keep Britton's world in order.  We get up, we go to work, he goes to his facility and we do it all exactly the same.  On holidays, it's all different.  People in the house, mom and dad trying to sleep late.  (7am) Eating at different times.  It's just hard on him.  This poem helped bring it all back into perspective, and a tiny bit of encouragement really can go a very long way.

“The harder the conflict, the more glorious the triumph. What we obtain too cheap, we esteem too lightly; it is dearness only that gives everything its value. I love the man that can smile in trouble, that can gather strength from distress and grow.” 
― Thomas Paine

Speaking of struggles, and triumph, and hope.... last January we found a doctor.  A doctor who specializes in autism.  A doctor who has two children on the spectrum, and has fought like a momma bear to get them well.  Although she practices in Florida, we visit her through Skype each month, and we went to see her the last few weeks of November.  She is a respected physician and pediatrician who has practiced more than 20 years.  It was so refreshing not to be afraid of Britton's behaviors in front of a doctor.  She studied him.  For THREE hours, she watched his OCD behaviors, his visual stimming, his frustrations.  She did what doctors use to do, she cared about our family.  She even believed she could help Britton.  Now there's a novel idea.  We are currently doing so many tests, and it all feels so overwhelming, but she did give us hope.  HOPE, that maybe we could if nothing else, get him some relief from so much pain.  He deserves that, all humans deserve at least that.  She also suggested a communication technique that I gave up more than 15 years ago, because it had been proven fault.  Apparently, it has made a resurgence, and she felt Britton was perfect candidate.  I am struggling to find a way to make it work.  It could be a miracle.  I'll keep you posted.

“All it takes is a second and your whole life can get turned upside down.” 

It's true that I believe that all my son's illnesses can be traced back to his MMR vaccine.  Yes, I do believe that.  He was vaccinated in the morning, and he went into anaphylactic shock at 2am the next morning.  The journey began that morning.  History certainly staggers under the weight of suffering brought about by human ambition, or hatred, or lust.  It's hard for me to believe that a pharmaceutical company, and a government would conspire to do such evil to it's own children.  Yet, it's happened before.  When Harod believed that a Jewish king would be born because the wise men told him it had been foretold, he killed thousands of Jewish boys under the age of two.  Just to be sure no one would undermine his power.  Who knows why our government has allowed such atrocities, yet our government continues to cover up those who expose the truth over and over.  This past year when the researcher for the CDC came forward with the truth, that he had lied about the results of his tests in relation to the MMR and autism.  He disappeared.  You probably never heard about it, as he was silenced very quickly.  He just didn't want to go to his grave with so many deaths, and so many ruined lives on his hands.  God bless him if he is still alive.

2015 is  here, and believe it or not, I have hope.  As one of the first families to experience autism, I pray we will be some of the first to see some real help, some truth, some change.  I believe that as the tide of parents who refuse vaccines becomes larger and larger... and the government closes the noose around their necks to force vaccines.  Parents are beginning to ask more questions.  Unlike my family, we had no information, we had no internet.  Parents today have the ability to find the truth if they will only look for it.  Families like mine, continue to tell our stories, if for no other reason than to save a few who are willing to hear.  I would try to save my worse enemy from autism.  I would still give you anything I have learned here in the land of suffering, if it would save your child.  Yes I am adamant.  Yes I am certain.  Yes, I will save anyone who will listen.