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.

November 14, 2012

An answer no one really wants to hear...

For those who have ever prayed for a family like ours and wondered what you could do for them ---

I received a beautiful card from a facebook friend who had been reading about our difficult times with our son's seizures.  In the card that person shared that they knew we most likely had needs not being met and asked how could they help. 

First of all - don't anyone ever think it's not worth the time and effort to send someone a card or handwritten note.  I don't know about anyone else - but for me it is such a blessing to open a card or letter.  Pure, simple, joy.  In my mailbox I get nothing but junk ads and junk mail and bills.  On my desk is paperwork -- forms to fill out to get nothing in return, printed out research abstracts for my leisurely reading, EOB's to sort through and when need be, appeal letters to begin writing.

Oh, the simple joy of a simple card addressed to me, not "occupant", not "guardian of", to open once in a while to break the monotony.

In the card was a very heartfelt sharing of how much that person cares for us and our struggles. 

Then there it was, that question.....

The very genuine question asking how they could possibly help us.

Unfortunately at times I'm a very impulsive person. I knew what my answer would be the minute I read the question.  But I tried to wait for a while.  Put the question down and walk away...  See if my answer would change after thought and reflection.  Seek the Lord's grace to overtake my lack of gracefulness.

I'm not sure what that says about my Christian walk, but after seeking heavenly grace I found the same human graceless answer a week later as I had the moment I read the question.  I guess why the truth is so absent in our world today, is because it's not glamorous.  It's not the popular answer.  It's often more blunt than graceful. 

My answer is that prayer is always appreciated.  Receiving a card that someone is praying for you, even better. 

Many families like mine are on such restricted diets, that cooking a meal for them isn't really that helpful.  There are too many things we can't have.

We love to do our own yard work, repair work, etc.  It's sometimes our only diversion in our life with autism -- to get to do something normal people do.  When we can.

What we really need, and I think I speak for many, is respite.  So often the people asking us how they can help, are those who belong to a church.  Perhaps even our own church.  They have a way to help.
They have a building that's mostly empty on a Saturday.  They have members of all ages and gifts and abilities.  They have the perfect answer to that question of "Do you have a need not being met?  Do you need help?  How can we help?"

They have a congregation of servants who when the Lord asks "Whom shall I send?"

Should all be answering "Here we are, send us!"

Not if it's convenient.
Not if we're not scared to.
Not if we don't know how.
Not if we're afraid we'll be sued.

But rather "if there's a will, we'll find a way."  "If God calls, he will equip."

For families like mine, the help we need isn't in the time of crisis, it's in those times of reprieve.  For our son when he's well, to have a place to go for a few hours just for fun.  To have an energetic youth peer play catch with him. Pull him in a wagon. Chase him on the playground.

For some less mobile children or youth, the senior ladies and gentlemen can perhaps read Bible stories to them for a few hours.

Deacons can stand guard at doors for sly escapee's.  Women's Ministry can greet the Mom's and take their name and commit to praying for that family.  The Men's Ministry can be buddies to some big-ol' boys!

The possibilities of how a church can and should answer that question are limitless.

If it weren't for fear from those who God calls to be fearless.

All I've heard lately is fear.  Things like, "We can't continue offering our perfectly suited ministry building that God provided for "outside" groups to use for respite because of liability."  "If we were to be sued, we could lose everything."

That might be true, but if the church that preaches faith to everyone else can't save a morsel for itself, then we're all in trouble.

If you were walking down the street and saw a child hit by a car, you would not just walk on by.  You would go to that person, do what you could, and then call 911.

If you were in the grocery store and someone dropped in front of you with a heart attack, you wouldn't not help because if they died you might be sued.  No, you would hopefully attempt CPR and call 911 and trust in the Good Samaritan law.

Parents of children with autism and other disabilities are asking no more than that.

That you do what you can and trust God to do what you can't.

We are supposed to belong to a church that preaches faith, that there must be purpose in your child having autism, a disability, seizures.  That even though it may be hard, even though your finances will be wiped out, God will provide.

But what I've heard lately from those same churches, is that they can't open their doors to respite programs because they might get sued and lose everything.

Can churches built by God really lose everything?

Is God's faith different for people than it is for churches?

If God can provide for the church, don't you think it can protect it?

And even if something were to happen, could it maybe be part of God's purpose or plan?  Like parents are told to believe regarding having a child with a disability?

Yes, those things are hard.  It takes courage.  It takes money.  It takes collaboration.  It takes trust.

It is difficult to step out of that boat, to cross that river.

But maybe, just maybe in doing that - you can see just what a blessing it is to families like mine whose lives are nothing but hard, nothing but difficult.  Yet we have no choice but to plunge head first in the Jordan.  Jump out of that boat with no life vest.

Or liability insurance.

I've also heard things like, "Well not many who we serve attend our church..."  How many villages from the mission trips you sent your members on have come back to attend your church?  How many people on your own membership list attend your church regularly? 

What if the parents dropping their child off for respite on a Saturday never ever occupy a pew on Sunday?  Is it not worth it that the child, youth, or adult who has a disability and who is made fun of by their peers, bullied on the bus, abused in the classroom -- has a place to go for a few hours once a month to learn about Jesus through the volunteer who read to them?  The servant who was the kind, loving, accepting hands and feet of Jesus in caring for them? 

Are we serving because there is a need we are equipped to meet, or serving so we can get?

God calls us to plant.  Not harvest.

We are to sow.  God's Kingdom, not the church, is to reap.

Don't ask how you can serve someone, if you're not prepared to serve in the way they need.  We've been abandoned by too many people and it's just too crushing to be abandoned by those whose very faith says to serve, trust.  Not flee, fear.

Parents of children, youth, and adults who have autism for the most part don't need help in crisis.  There's not much you can do during those times anyway.  What they need is opportunity when all is well.  A Saturday afternoon respite to just enjoy their house or go out to dinner or see a movie.  Their child or children with disabilities who are nothing but stuck in their house, don't need a babysitter to come over, they need a place to go play and be around people who have fresh wind, fresh fire, -- perhaps little experience, but great faith.  By doing that, you are serving in multiple ways.  Respite for the parents, time for marriage for the husband/wife, a change of scenery and recreation opportunity for the child, youth, or adult with the disability.

What we need is for you to be Good Samaritans who serve with cell phones.  If something happens, call 911.

I guess if that's simply too big for God to make happen through your church, there are local disability organizations who serve families who can always use your donation.

Most of them non-Christian based.

Think about that.

November 11, 2012

The Pricetag of Priceless

I received a letter from Matt's Custom Decks on Saturday - asking if we were happy with the construction job they did for us and if we had any comments or concerns so that they could improve their services, etc.

For a family like ours, it's hard to answer that.
Our perspective is too different.

We deal in "needs" - not "wants".

We have a son who is severely affected by autism and seizures.  Whose vaccine-induced immune and mitochondrial dysfunctions spare no body system.  

We live in Houston.  It's hot in Houston.

Really hot.

Our son doesn't sweat to help his body regulate temperature.  He has seizures instead.

So for summer after summer we could only be outside for 15 minutes at a time.  We had a tiny porch slab, but it wasn't covered.  We have no trees in our yard for shade because for years we had an above ground pool.  When the seizures became really bad, we had to get rid of it and just never got around to planting trees.  Not that they would have provided any shade anytime soon!

If it wasn't the relentless heat that trapped Brandon inside, it was the seizures.

Finally - the day came when we felt we were in a position to spend the money to have the porch expanded --- and covered.

Obviously our "Life with Autism" wasn't going away any time soon, and with respite hopes non-existent for the most part -- for our own sanity and stress-relief, we had to create our own escape.

A refuge in our refuge.

For all of us!

Looking through Matt's Custom Decks website was a wonderful dream.  So many different ways we could do our porch.  How do people who do have such luxuries of time to contemplate such projects ever narrow it down among all the possibilities? Where do they get the money to do all that?

I guess they don't have lifetime care for their adult son to worry about.

I guess they don't spend $500.00 or more a month on supplements and special food orders, and about an extra $200.00 on the grocery bill for organic, non-toxic, and special diet food.

I guess they don't order raw camel milk at $9.00 a pint from an Amish Camel Dairy clear across the country and have to pay for expedited shipping so it doesn't arrive in Houston as hot chocolate.

I guess they're not having to pay for private school, out-of-pocket for autism treatments insurance doesn't pay, or out-of-network for alternative doctors who do far more than any in-network doctor has ever done for us.

Looking at all the possibilities reminded me why I love the part of "Life with Autism" that I do love.

Like knowing a "want" from a "need".

The picture shows that for us.

Brandon had a seizure that morning.  Because of this covered porch and the outdoor couch that my husband custom built for Brandon to be able to lay flat on when he has a seizure -- we were able to all still enjoy a slice of normalcy.  We could all be outside.

A need met.

The porch didn't cure my son of the seizures, it just made getting through them a bit easier for all of us.  Our lives didn't have to come to a screeching halt to constantly check on Brandon in his bedroom and we didn't have to be inside on a beautiful outside day

I don't think I could ever convey that in a customer satisfaction survey.  What their project was to us was so much more than just another job.  It was building freedom for us.  Respite for us.

When Todd and I sat out there while Brandon was lying on that couch, I know we were both on the verge of tears.  The simple joys of simple blessings.

It was the best money we ever spent, and not just for something we wanted for the purpose of wanting or something that would impress or add value to our house ---

But in how it gave back to our son just a little of what autism has taken from him ---



Yes Matt's Custom Decks -- we are pleased with the work you did for us.

It was worth every penny.

It's absolutely priceless.

The Guppy's

...is when I carried you.

We've certainly hit some low points in our "Life with Autism."    In fact, we really can't remember anything but brief periods of calm while the chaos reloads.  Seizures seem to have a relentless grip on our son, on our lives, -- so much so that I find myself thinking of the "Footprints in the Sand" poem quite often.

Knowing --

But wondering...

This picture from our life today is our "Footprints in the Sand" photo.  Todd has carried Brandon like this many times.  I just happened to have my phone with me to snap this one.

Brandon had yet another seizure this morning.  On yet another Sunday.  The Lord's Day.  At least though he was awake.  He couldn't walk, but he was awake.

The little things.

I guess no better day than a Sunday to be reminded of how when Todd or I must carry Brandon, that it is God who is carrying us.

Oh if we could all live with the faith Brandon has.  That his Daddy might drop him never, ever enters his mind.

That God would ever forsake us --

Should never ever, enter ours.

Michelle M. Guppy

Footprints in the Sand

 One night I dreamed I was walking along the beach with the Lord.
             Many scenes from my life flashed across the sky.
                  In each scene I noticed footprints in the sand.
                       Sometimes there were two sets of footprints,
                           other times there were one set of footprints.

                                  This bothered me because I noticed
                                that during the low periods of my life,
                             when I was suffering from
                         anguish, sorrow or defeat,
                     I could see only one set of footprints.

          So I said to the Lord,
      "You promised me Lord,
         that if I followed you,
             you would walk with me always.
                   But I have noticed that during
                          the most trying periods of my life
                                 there have only been one
                                       set of footprints in the sand.
                                           Why, when I needed you most,
                                          you have not been there for me?"

                                 The Lord replied,
                          "The times when you have
                  seen only one set of footprints,
          is when I carried you."

Mary Stevenson