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 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

1 comment:

Teresa Holman said...

As you listed all the monthly expenses, I thought, "Right, that's where my money goes! " How happy I am for you to have a new Respite in your respite. We might just have to have them over to our house to build a deck. Britton will do his best to make sure he runs outside naked, just so they can really enjoy the autism experience a little more!