On being forged into a warrior mom

If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!


This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.

Some days the HOPEISM in that simply takes my breath away.

February 22, 2013

Autism doesn't care....but God does.

This week has been one of the more frustrating weeks of autism I've had.  I guess because I've once again fallen in the trap of planning what I'd like to do.  Namely getting myself more fit -- strengthening my aging back for the long haul.  Each darned week has been met with obstacle after obstacle, namely Brandon having seizures or being in bed recovering from them, on the few days a week lap swimming is late enough for me to get there, because of course Brandon is late to school most of the days he can even go to school. 

Today the final blow to my frustration was reading about the lack of inclusion of ABA therapy in the new health reform plan.  ABA therapy, the only thing that has taught Brandon what he knows.  The only thing that has helped him become as independent in daily living skills as he is.  Not public school, not medicine, not drugs, - but ABA.

So why of course it would make sense that the only thing that helps my son, would be in danger of being taken away.

I'd like to have the luxury of thinking positive in that each state will do the right thing and include it still.  I really, truly would...  But autism doesn't have the track record to justify such wishful thinking.

Some days autism is too unbearable.

Today was such a day.

Autism didn't care that it kept Brandon in bed most of this week and that today was the last chance for me to get to the pool.  It didn't care that by 10:30am I was still trying to get Brandon fed and dressed, let alone on the way to school so I could get in what little swimming I could before it closed at 12:30. 

Autism didn't care that I was in a hurry because it is never in a hurry.  It goes on merrily at its own pace, not caring what you need to do, where you want to be.

It doesn't hurry for anyone and it waits for no one.

It didn't care about the mood I was in when I finally arrived with only 40 minutes to do the hour and half worth of therapy and strengthening my back so desperately needed from having had to miss most of the week.

It didn't care that when the lifeguard cheerfully asked me why I come swim - for recreation or for a workout --- that I could only blurt out - "for survival."

Yes, today I was reminded so blatantly of how little autism cares. 

Autism, the diagnosis.

It could care less what your dreams were as a pregnant mom.  It could care less that you had one child, and the child you were pregnant with would complete the perfect picture of having siblings laughing and giggling late in the night.  Fighting and practical joking each other.  It could care less that when it took your child, there might not ever be any getting them totally back.  Oh, there would be years of valiant attempts that got you closer, but for so many, it won't be a total rescue. 

It doesn't care that as the warrior mom you have become, no matter how many battles you fought, won, or lost, you will still have to keep fighting for recovery.  It will welcome that.  It doesn't even care that it will make you die trying to recover your son.  It will welcome that too.  And not only does it welcome that, it will help that time come sooner than planned with the toll it takes on a body.

Autism doesn't care that sometimes you are simply tired of fighting and want to quit.

Autism never gets tired and never quits.

It has no need to eat, rest, nor sleep.

Autism doesn't care that you'd like a coffee break, day off, vacation, or Girl's Night Out.

It needs none of those things.

Autism doesn't care that the only advice given to so many mom's in the doctor's office with that shiny new diagnosis will be to "love them, they'll end up in an institution."  Autism doesn't care that most will believe that and miss a whole world of possibilities and treatments and hope.  Autism doesn't care that those who do know what to try will spend their life's savings on those treatments and have nothing for a rainy day, college for any typical children, vacations, or retirement.

Autism doesn't care how much you've spent, it will only cause you to have to spend even more.

Autism doesn't care how many lies it's told, it will only tell more.

Autism doesn't care that there's no insurance coverage for most and it doesn't care about the very real possibility that what coverage there is, might be taken away.  It doesn't care about the unfairness in how those who create their own health issues can get all the coverage they want, while those who did what the government said to do in vaccinating their children, -- have no coverage for those myriad of damages.

Autism doesn't care that most insurance only covers therapies for 30, 60, or 90 days and your child's need for therapy is lifelong.

Autism simply doesn't care. 

It doesn't care if you have no respite, no place to worship with your child, and no school fit to educate your child properly.

It doesn't care if you are tired, broke, and broken.  It doesn't care how long or how hard you've fought for your child, against discrimination, for coverage, -- it will reward you with only the need to fight longer and harder and with no reinforcements, few victories, and no medals of honor for the diligence in how you fought nor how many odds or enemies you fought against.

It will simply leave you bloodied on the battlefield thinking how you could have possibly fought harder.  Or stunned by the horrid realization of how you could have avoided the need to fight in the first place....

It doesn't care how much it hurts your child, and it certainly doesn't care how deeply it pierces your heart.  It doesn't care how it destroys marriages, dreams, families, and futures.

It doesn't care how it alienates your friends so that you find the ones you had dwindling faster than your bank account.  It doesn't care how it leaves you no time for the friends you do still have.

It doesn't care that it made you have to quit your job, miss meetings, or workouts at the gym so you can stay in shape to outwit and outlast your opponent called autism.

It doesn't care that it made you live a life of tag-teaming where one parent stayed home with the child with autism while the other went to swim meets and track meets with the typical child.

Family vacations included.

It doesn't even care that in so many ways it made you miss your typical son's childhood.

Autism doesn't care how many milestones it might steal.  Little League.  Pretend.  Birthday Parties.  First dance.  First kiss.  Drivers license.  Prom.  Graduation.  College.   Marriage.   Parenthood.

It doesn't care how many of its Mom's might not ever become Grandma's.

It doesn't care that you have to endure the petty complaints of those around you who can't handle but the simplest of one-time paperwork hassles or petty mishaps when you've had nothing but a lifetime of paperwork and true hardships since autism.

It doesn't care that you have to battle envying those around you whose children have curable illnesses or illnesses that still allow them to live a somewhat typical life because they can still read, write, talk, do, understand....  All things that your child cannot do.

It doesn't care how much jealousy you have for those who can just walk into a treatment facility and get all they need to get better and owe nothing but a co-pay or deductible; while you have to say no to a doctor who might be able to help your child, but you can't afford to pursue that.

It doesn't care how rotten and guilty it makes a mom feel for even thinking those things.

Autism doesn't care if you'd like spontaneous back.  Just the ability to pick up your purse and go somewhere.

It doesn't care if you'd like to finish a conversation, start and finish a project, or simply take a nap on a Sunday afternoon.

It doesn't care if you're tired of humming or going room to room turning off lights that are incessantly turned on.  It doesn't care how many times you've rammed your forehead in a locked door because you forgot it was locked. 

Autism doesn't care that you must live behind constantly locked doors and it especially doesn't care if you've accidentally left one unlocked and your child wandered off a few blocks away before you even knew he was gone.  Autism doesn't care about the sheer panic in that.  Autism doesn't care how fast your child is.  It will only make them faster.

Autism doesn't care that there's no place for your child to go for recreation on the weekend nor respite for you.

It doesn't even care that your child has no friends.

It doesn't care that there's no appropriate provision of care for your adult past school or your death.

It doesn't care how much shame society stares you down with in the store and how lame and inconsiderate the comments are that are hurled at you during a meltdown. 

It doesn't care how angry, hurt, betrayed, bewildered or belittled you are.

It doesn't care how bullied your child is.

It doesn't care how many prayers you've prayed nor how many tears you've cried.

Autism simply doesn't care.

~ ~ ~ ~ ~ ~ ~ ~

But God does.

God cares for my son.

He gives new dreams for He knows the plans He has for him.  Plans to prosper him, plans for a hope and future for him.

God does care that your child was taken and has given you a fighting spirit and the will power to go to infinity and beyond to find him and help get him back.  He's given you the bravery and courage to fight any battle you must fight and the endurance to fight as long as you must fight.

And He cares enough that when you say you can fight no more, he will fight for you.

God does care that you can't afford autism and He somehow provides by teaching us that it's people we must invest in, not things.  Lives, not livelihood.

God does care about all the "cant's" "wont's" and "never's" you are told and in return He gives you promises of "I can" "I will" and "Miracles."

He never takes away, He only gives.

He cares that you feel discouraged, and He sends encourager's.

He cares that you fear death, and reminds you how He overcame death.

He cares that you feel so very alone, and so He promises to be with you always.

He cares that you need escape but can't, and so He invites you to come into His presence.  Anytime, anywhere, for any reason.  If only in thought.  If only on a Sunday.

He cares that you are weary and broken.  And He promises you will not faint but soar on wings of eagles.  He is the potter who will pick up your pieces and make an even more beautiful vessel with them.

He levels all odds on the battlefield because those who fight in his name will have victory.

If not sooner, then certainly later.

God cares about truth and brings justice.

God cares about marriages, dreams, and families; and those who cling to him have a cord that is not easily broken.

God does care that you don't have time to be the kind of friend you want to be.  That's why He sends you friends who understand that because they too don't have time to be the kind of friend they want to be either.

God does care that you've missed out on so much family time all together, that's why he helped you understand how to better value the time you do have together.

God cares about your hurt, disappointment, injustice.  He too has faced those things. 

God cares about the pain your child is in.  His son went through such pain too.

He too, wept.

God does understand your feelings of the flesh, and he forgives.

God cares about all the milestones in your son that were forsaken.  As his son's very life, was forsaken.

And he promises to give back what was taken.

God does care that you are tired.  He will give you rest.

God cares that your child has no friends. He says that He will be a friend closer than a brother.

God does care how many times you've felt defeated and He will give your child victories at just the right times that will encourage you and remind you of why it is you are fighting so hard in the first place.

God cares about the prayers you pray, so much so that sometimes he uses them to heal what's wrong in you first, before what needs to be healed in your child.

God cares that you are frustrated and in a hurry for answers, and He reassures that there is a time for everything.

Most importantly God cares about the tears you cry.

Much like how Spring rain grows flowers -

He uses your tears to grow HOPEISM.

And it is HOPEISM -

That heals.

2 comments:

revgunnar said...

Thank you, Michelle, for your Post. It is very heartfelt, raw and honest. As a parent, it certainly resonates. As an Ordained Minister, it reminds me of why I am working, preaching and writing for inclusion in the church.

Thank you.
Rev. Gunnar Cerda

Lesa W said...

And we care Michelle: the old guard Autism Warrior Parents who have been trekking for so, so, long and sadly, the new Crew that we've tried very hard to keep out of our club! We'll keep praying and searching for that "magic bullet" that will give Brandon and your family some relief! Nunquam Linque!!