Team Guppy

One of the many things that describes my HOPEISM in our "Life with Autism" journey...

"Strength and courage aren't always measured in medals and victories. They are measured in the struggles they overcome. The strongest people aren't always the people who win, they are the people who don't give up when they lose."

NDCQ

Never Quit

HOOYAH!

Sunday, February 19, 2017

Indomitable












Meet "Indomitable" -- my incredible butterfly...

in·dom·i·ta·ble
inˈdämədəb(ə)l/
adjective
  1. impossible to subdue or defeat.

    "a woman of indomitable spirit"

For a few days, Houston did actually have a winter this year.  It was 20 degrees for like 24 hours or so.   Before our "big freeze" I gathered all of my Monarch caterpillars that were overwintering on what was left of my Milkweed plants, and put them in netting cages and brought them inside so they could make their chrysalis and be safe, snug, and warm until Spring.

But a few days after our "deep freeze" I went out to cut down my dead, thawing, mushy milkweed and found one lone caterpillar ravenously chewing on those mushy milkweed stems.  I couldn't believe he actually survived those two freezing days...let alone all the days before that where there were no leaves on my Milkweed.

It was a miracle of sorts.

I don't know how that little guy survived all that.

Freezing, no food, no nothing.

But there he was.

So I named him indomitable.  He reminded me of my Brandon.  In how against all odds, he manages to survive all these seizures.  He reminds me of all the warrior moms I know, who manage to survive the unsurvivable.

I sent Todd on a "Hail Mary" mission to our local nursery to see if they by some miracle had some milkweed plants.  They had two in their greenhouse that managed to survive.

Indomitable was able to quench his hunger and enjoy a few warm days.  His life reminded me so much of mine....those many moments of hardship with but a precious few moments to simply bask in the sunshine.

I tried to watch him closely, but life with vaccine injury diverted my attention for a few days and in yet another bizarre cold snap I found Indomitable somewhat stuck in the "J" formation they go in as they prepare to form their chrysalis.  Cold temperature can mess that up, and I thought for sure he was dead.  He was in that same position for far too long.

But then he once again lived up to his name.

I went out one morning sure to  find him withered and dead, and instead found him in chrysalis.  It wasn't the smooth chrysalis of those who have had an easy life, it was the wrinkled and weathered chrysalis that those mothers like me know all too well.  It was the chrysalis of a warrior and I had to smile at that.

I wondered if he would survive, if he would indeed eclose and live to tell about it.

And once again, he lived up to his name.

On one of the worse days I have had as a warrior mom, I went out to my garden in tears over the series of unfortunate events I had to deal with that day.  I had a trifecta of a mental breakdown, temper tantrum, and pity party.

I was in a pit with a lion on a snowy day and didn't think I had the strength to even attempt to fight the lion much less crawl my way out of the pit.

And then I saw Indomitable.

He must have very recently eclosed and was resting on a flowering weed while his wings continued to dry.

I could tell he was a bit torn and tattered from his journey... How could he not be?  He nearly froze to death, starved to death, then nearly froze again while trying to form a chrysalis.

But there he was.

Surviving.

Tears began streaming once again as yet again I have found such inspiration from my gardens.  From these butterflies I try to help raise and release.  So many come and go with no issues.  But those few like Indomitable, they have come into my garden at such a time when I need to see God's promises and not just know them.

Indomitable resides in the safety of my butterfly habit sipping nectar in safety.  I'm not sure he'll ever fly freely, but he will be cared for deeply.

I don't think I can ever say I've felt God speak to me with a word or some insight. But I can say that without a doubt, He has sent a few precious butterflies to my garden at a time when I needed HOPEISM most, and they have spoken to me ever so clearly.

And today that butterfly taught me that being indomitable isn't about strength, perfection, or winning.

It's about never giving up.

#NDCQ



Saturday, September 17, 2016

How do you measure success?

 


Yesterday was a day where God gave back all of what vaccine injury has taken.

At least for the day.

It has been almost two years since Brandon has been on a horse.  We were finally able to get him in a Therapeutic Horse Riding program paid for by the state (because, well, who has money for "extra's" given all the money we spend on basic keep-him-alive vaccine injury essentials?!) and then were dismissed from the program after a few semesters because of lack of consistent attendance caused by the seizures that were caused by the vaccine injury.  The very vaccine injury that even necessitated we seek state services for anything.

We were bummed to say the least, but we understood.  Sort of.

And then came this past week.

A call out of the blue from that riding center.

I almost didn't answer it.  Figured they had not taken us off the call list for fundraisers or something.  But I answered.  And it was someone inviting Brandon back.

I was shocked to say the least.

They said in retrospect, they could see that even though his attendance was sporadic because of seizures, that the few times he was there, they could see he was benefiting, and so they wanted to have him back.

I chuckled a bit inside at the hilarity of that.

Not many people want our kids, let alone invite them back.

Sad, but true.

I've never received a call from any program wanting Brandon.

So to get a call from a program wanting him back - was really a special thing.

So, as you can see in the pictures, we went back.

I was a nervous wreck the day before he was to ride again.

"God, I know you kind of like to mess with me sometimes, but please, don't let our first day back be one I have to cancel because of a seizure, the reason we were dismissed from the program in the first place......"


Well, not only did Brandon not have a seizure that day, but the rider before us was running (or riding?) late and so Brandon had to sit in a chair for a good 10-15 minutes to wait for his horse.  And he did it.  He sat there and was still and did not have a meltdown.

When it was time to get on the horse, I was fighting off a panic attack in "please God, the helmet. Can you place an Angel on each of his hands so he can't pull off  the helmet and then could you magically not make him even feel the helmet to want to take it off!  Please, don't scare off these volunteers the first day.  Don't traumatize this innocent horse by Brandon having a helmet meltdown."
But nothing.

It was like Brandon didn't even know the helmet was there.

Then I was like, "Wow, God, you are good!  Do I dare even begin to breathe again lest this moment be imagined and by taking that next breath I break the spell?"
No magic.

No spell.

Just God.

Brandon, as you can see from the few decent pictures I managed to capture through my crying at the HOPEISM of it all, had a great time.

He remembered how to get on the horse like he'd been riding all along.

It was special to witness, he really enjoyed his 'hands free' riding while bouncing and giggling.

That's not to say the next ride could be vastly different, but it's for the rides like this day - that I came to realize the unfairness of how success for our kids is measured.

He was dismissed because he wasn't meeting a predetermined level of attendance, and therefore goal progression toward success.

It's that way with this riding program, it's that way with most "schools" for our children.

Insurance won't pay unless you are meeting a predetermined level of mastery.

Insurance won't pay if it takes too long to reach that arbitrary level of success.

I take such issue with that because it is because of (for most of us) vaccine injury that our kids even need these programs, these schools, the extended therapy.

It is not our kids fault they need that - yet they are the ones punished because they don't meet the predetermined outcome measures.

I'm sorry, maybe if he was only maimed by 4 vaccines and not all 12 we would meet your criteria.


It's yet another maddening form of discrimination against our kids.

I can not find a program that is suitable for his needs, because what he needs in a day program you cannot "bill for" to get reimbursed for insurance.

I could not find a leisure program with benefits for him (Therapeutic Horse Riding) that would not exclude him because of attendance issues from the seizures from the vaccine injury.

It is a pattern of gross negligence that we are allowing to happen to our children.

Our government maimed our children.

The vaccine industry caused Brandon's injuries to need a special school, a special day program, this special riding program.

It is not something I want for him -- that he needs these things is because something was done to him and insurance, the state, the government - must pay for that whether or not he ever reaches any predetermined length of therapy, goals, attendance, or level of mastery.

Period.

You cannot have caused such injury in our children, then exclude them or not pay claims or tuition or therapy for them because their level of injury is just a bit too inconvenient.

We must demand change in how we determine success for our children, youth, and adults in these programs.

I think that the smile in the first picture - the smile from him being able to do something everyone else can do -- is exactly how you measure that success.

And if that becomes too expensive - the states, the insurance companies, our government, - must finally wake up and punish who it is that needs to be punished -- and it's pharma, not our kids.

You cannot allow the continued maiming of our children then deny them services because they are too injured, too inconsistent because of that injury, or need the service for too long.

Our kids have been through hell, they deserve some HOPEISM.

However often or inconsistently they can get it.



Monday, July 11, 2016

The HOPEISM of Lesa Leahy Walsh

This is my photography blog...

My gardens are my source of strength, inspiration.  I called them "Where HOPEISM Blooms" because indeed, when I am outside taking pictures of various things in my back yard - I find such HOPEISM.  Such healing.

July 3rd I was outside seeking that HOPEISM.

One of my very best friends died suddenly and quite unexpectedly July 2, 2016.

I'm sure if you listened hard enough, you would have heard a collective gasping for air as an entire community tried to catch its breath from the sudden sucker punch regarding the death of their warrior sister.

To honor her memory - family has asked that in lieu of flowers you donate to this fund set up for the family:  GoFundMe Memorial Fund for Lesa Leahy Walsh

While I was outside mourning, this dragonfly came right beside where I was standing.  Allowed me the time to go get my camera and come back and stand there inching closer and closer to get the best picture I could.

I named it Lesa.

It reminds me of her vibrant blue eyes.

I stood there beside it and smiled at how that is truly a Lesa thing to do.  Being there when someone needed her...

And I thought about Dave, and her children, and her family and Dave's family.  And wondered if they truly knew the Lesa we did.  If they even have any clue just what her influence was in so many things, to so many people.

I have to think not.

So I wanted this to be for them.

From all of us - her warrior brothers and sisters in autism.

~ ~ ~

Dear Dave Walsh -
    Kyle & Kiera

We cannot know the heartache you are feeling.  The staggering loss in a wife and mother.   But please know this, - we are lifting each of you in prayer, in thought, in peace that passes understanding.

All I will attempt to do is share from our perspective in what we have lost as a friend, a mentor, a warrior, and above all - an inspiration.

As you are honoring her memory on Saturday, July 16th at St. Paul's Catholic Church in Jacksonville, FL --- please look around the church and know that while there may be many of Lesa's friends -- if all of us warrior friends in the autism community who wanted to come were able to -- we would not fit in the church.  Any church. There are simply too many mothers and fathers in "Life with Autism" that Lesa has touched in small ways, in large ways, in profound ways.  But alas, because of the very autism we live with as Lesa did -- we cannot travel.  We are all so very different in how autism has affected our lives, but few things remain constant in all of us...  the fact that there is never enough money for autism, nor enough help with autism for us to get away.  Even to honor such a cherished friend.

So know that as you are in that church honoring her, we are too.  We are private messaging each other still in disbelief.  Sharing about how Lesa would be telling us to not mourn, laughing at our memories of her, or cursing with us at the unfairness of it all.  We will be posting our memories to all in our community, e-mailing each other, and perhaps many of us calling each other for that extra touch of comfort.  I laugh out loud at the fact that Lesa knew I hated the phone, but for her, and Carol, I would answer it when I could.  I can share this now, but half the time when talking with Lesa I never understood a word she said.  Between her Irish accent and her New York speed talking - I couldn't keep up!

But I digress...

As I try to attempt to share a collective community's thoughts on Lesa - I smile in thinking about how for so many, she was our community.  Our lifeline of HOPEISM in that her Kyle was what we wanted our Brandon's to be.  She blazed the trails where there were none for so many.  She was the HOPEISM that you could recover your child enough to be healthy, go to college, graduate.   She could give the HOPEISM we so longed for because in so many ways she experienced it.

 It was so very heartwarming to read on Facebook so many posts about her.  Many from parents who did not know her, but knew her name from seeing it so often in helping others!  That is the kind of impact Lesa had on this community here in America - and overseas!  All hours of the day and night when she could spare a second or two, she would be laughing with us, crying with us, sharing sarcasm with us.

But most of all doing all she could to help us, pray for us, battle with us.

Carol Fruscella has given me permission to share this list of all the groups/projects she was a part of:(I'm sure there are more, if so please contact me, MichelleMGuppy@yahoo.com, and I will add them!)  

New York delegation for DC... 'Hear their Silence'... April 8, 2000
Member of ARK
Member of Unlocking Autism
Part of too many NY and FL groups to mention
DAILY advocate and personal ONE ON ONE care provider to parents all over the United States
Designed and implemented the "One in 88 can not Wait" for the 2012 Presidential Election
Active member in multiple private groups and prayer groups
Retired OR Nurse...because being a floor nurse was not enough
Parent Mentor and Parent Teacher for an Autism Class at LaSalle University
Co-Author of a book yet to be released on Puberty and Autism
Marched and Rallied and Called and Wrote all over the United States for answers.



She was all that and so much more.

I have tried to write this for a week now and still cannot come up with how to convey to you how much she meant to us.  How even though we never met you, Dave, we know you by the love she had for you.  Each picture she shared whether goofy or sweet, we could see the love for you in her eyes.  When she would share an Anniversary post or picture of you coming home from being away at work, we could read the love in her words.  As with all of us, the husbands seem to get lost in the shuffle.  But they are never lost in our hearts.   And you certainly were not lost in hers.  We are like family in our own way and we all feel like Kyle & Kiera are our children as well.  You were her love, they were her world and we so loved having a front seat in being a part of theirs through Lesa.  You could sense the pride she had for them in everything they have accomplished.  The love for them in each goofy-face post we so loved!  And will so miss!  We know what price that came at, we all struggle with putting ourselves last at the detriment of our own well-being.  It was one of the many things we would share about late at night while saving the world from autism.  But Lesa would have it no other way.  I don't think there's a mother as dedicated and selfless as Lesa was.  She gave her all in everything she did.  She would share about a typical day and honestly I needed  a nap after reading about it!

She was a warrior, a friend, a mentor and a support system to so many!  She was an advocate like no other.  As busy as she always was, she always had time to have Kyle draw a picture for a campaign, to print a poster for a rally, to write a letter to a politician or to sign and pass around a petition.

I don't think I could say it enough how many people she touched.

And with tears streaming down my face, I share how she touched me the most because it was her begging and pleading her doctor friend to help save my Brandon - that truly did save my Brandon.  For months, weeks, she would share with me all she could, cry with me and curse with me at how I was getting no where with my son.  She felt Kyle's doctor could help Brandon and it was because of Lesa -- that I did get a consult with that doctor.  And that doctor did save Brandon's life.

That was the kind of person to me, to our community Lesa was.

She would stop at nothing to help.

One of my favorite motto's is "NDCQ".  Lesa embodied that and all it meant.  

Not Dead Can't Quit --- it means to keep dreaming, keep daring, keep doing.

Lesa did all that and so very much more.

And I doubt very seriously that even death will stop her.

As much as I want to be there with you at her memorial service, I cannot be.  But with a smile on my face and wearing my very best "Camo & Combat Boots" - I will be home continuing the mission she had -- we all have -- in kicking down brick walls of autism advocacy and vaccine tyranny.  Just as Lesa would want all of us to do.  Except perhaps now in her honor, with just a little bit more force in those kicks!

Look around the church on Saturday and feel the force of our collective love and mourning for Lesa.  Know that we are with you.  We will never forget Lesa and we will have your backs for as long as you need us to.

We are family.

And family is forever.

In her honor we will continue to dream, dare, and do for your kids, our kids, everyone's kids.


NDCQ

We love you Lesa -






Friday, October 9, 2015

In the light...


The is a song by DC Talk called "In the Light" --- it was one of my favorites as a new Christian.  I found myself thinking of those lyrics as I took these pictures in my garden and butterfly habitat today...

I wanna be in the Light
As You are in the Light
I wanna shine like the stars in the heavens
Oh, Lord be my Light and be my salvation
Cause all I want is to be in the Light
All I want is to be in the Light

So many days in my "Life with Autism, Seizures, and a side of Trauma" are anything but light.  It's a purposeful determination on those days to take my camera outside and get a dose of "Where HOPEISM Blooms."  No matter how much darkness in my situation, no matter how overgrown my gardens are - I can always find such light.  Sometimes it takes a while.  I have to search really hard. But if you do not give up, if you keep searching for what you seek -- you will find it.

And it will be worth the wait.

To the HOPEISM of  healing Brandon --

Dream! Dare! Do!  NDCQ!