Of being swept away in a flood of silence....

 If you don't like the reality of "Life with Severe Autism, Seizures, & a side of PANDAS" - then this blog isn't for you. If you don't like "in your face truth" - well - none of my blogs or posts are for you! I decided long ago to be transparent about this "Life with Autism, Seizures, & a side of PANDAS" - no matter what anyone else thinks, no matter how awkward it may be for someone to have to read.

I mean, how dare I bring inconvenient truths buried in the dark -- to such blinding light. But to those few brave souls still reading - I have this below entry in my online diary that I share excerpts of to Facebook, or share the link on Facebook from my blog, "From hell to HOPEISM", found at MichelleMGuppy.blogspot.com. Facebook to me is a way I primarily connect to those warrior friends, family, regular friends, & church friends. It's totally where I've learned all I have in how to help my son. Even the "in it to win it doctor" that consults with us --was found from a connection with one such warrior mom on Facebook. It's my friend on lonely isolated days when I'm home alone, and it's my outlet cheaper than therapy on other days! It's simply where I navigate this journey from hell to HOPEISM. I lightheartedly term my Facebook, my "Diary of a Stark Raving Mad Laughing Lunatic who Loves the Lord and Lives on the Edge of Crazy yet not too far from Sane." It fits this life I live that lies somewhere between the sacred and mundane.

Getting back to this entry.... I titled it "Of being swept away in a flood of silence...". I had gone to Philadelphia for "An Italian Family Reunion" from July 10 - 14..... (Well, the reunion was July 12-13, I snuck away early for respite to walk in the woods - the Appalachian Trail that is) When I came home on the 14th in the evening --- I sat on the couch to rest a minute. As is typical, Brandon came and laid there with his head on my lap so I could do that deep pressure massage that calms him. Every night, either Todd or I do that. Earlier, when I had walked in the house, he saw me and began doing something he's done maybe a hand full of times in his life - his murmuring of: MOM MOM MOM MOM MOM.... Todd even noticed that he thought he was noticing that I was home. Laying there on the couch, he was very 'motional as we call it..... He laughed, cried, and simply looked up at me and smiled. Then laughed, cried, and looked up at me and smiled. This went on for several minutes.

Mind you, most trips when I've come home, he barely acknowledges my existence except to pull me to the refrigerator to get him something to eat. A time or two he's even screamed as if how dare my existence come into his personal space. A mere, "Meh", and him going on his loud merry way is the norm.

Very seldom does he acknowledge me.

But this particular "welcome home" -- as he laid on the couch head in my lap - he was murmuring over and over and over and over and over:

MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM.....

Over and over. Over and over. Over and over.

That's the only word he has spoken since irreversible vaccine injury stole what few words he had at 18 - 24 months of age.

It was both heart breaking and heart warming.

Only fellow warriors of severe autism will get why that is.

For me, the heartbreaking of it was to know just how brief my time on this earth is to care for him - and how long his lifetime is projected to be. He has a typical life span. So many of my own 'motionals went through my mind in those precious sweet moments. Emotions that I try so hard to bury deep --- because when there's an unsolvable math equation - what good is it to constantly try to solve it? It would be like trying to understand God's Sovereignty in tragedies like the Texas Flooding, Tsunamis, Hurricanes, wars.... Some questions are just not solvable. Many reasons why things happen simply not knowable. Things like who will be there to take care of my son when I die, when he is 'motional or happy or soiled or hurting or cold or hungry or thirsty? Who will understand all his nuances that I could never fully outline in a "When I die care manual for dummies" type document? Who will volunteer to give up their life, their freedom, their finances, to provide every moment of care and provision for him? Who will forsake their marriage, their children, their grandchildren for us to pass our battered and broken baton that we've been running the race with by ourselves for decades? Who will sit on a couch endless hours rubbing his head and back because the few comforts he has in this life - comes from that deep pressure massage?

Who will do those things for him, and much, much, more - day after day, evening after evening, night after night, weekend after weekend, holiday after holiday -- forsaking freedom, longing to be out back gardening, at church, at the gym, on vacation, visiting friends, going to college, working a career?

Bittersweet is the collision of both worlds I live in with Brandon.

And all I can do in those moments where I can't help but think of the future --- is once again touch the hem of Jesus' robe and beg for the mercy of my Faith to collide with HIS FAITHFULNESS in taking us both together - or him one minute before me.

Because only then will I rest in peace.

Think that a callous, morbid, horrible thing to think, let alone share?

Cyber-hack into the brain of most any mother like me......... It is unimaginable the sheer weight of lack of help and security of their future once we die that makes us have to even think a speck of that. For those like me who have Faith ---- that HOPEISM is the only thing on the other side of that scale that somehow balances our lives, allows that hopeful side of the scale to perhaps tip just a bit higher.

The HOPEISM that Jesus gets us through, that HE beams us up together so we leave no severely affected warrior child/adult behind on a battlefield that has never had nor most likely will ever have - reinforcements coming!

As in the song, I can only imagine what a wild ride up that would be! Hearing his voice, having those conversations vaccine injury stole, asking him "What the hell were you thinking when you about bit my thumb off at 3am one morning in the middle of a rage!?"

But until then - we devote everything of us --- for all of them.

Until then, we have no choice but #NDCQ.

Until then, we are not dead and we cannot quit. We are warriors who cling to whatever it is that motivates each of us; for me, my #HOPEISM and the motto's that motivate, like the one from Forged: Strength through Adversity. At the end of the day, our prayer is for a few fleeting moments we can sleep between checking monitors and changing sheets -- and if we get that - or gasp - an entire night's sleep - we know as in the song, we have been blessed by a Hard Fought Hallelujah.

All these things swirling through my mind in those moments of clarity where it seemed my son truly knew who I was, and dare I say, missed me. Thinking about these sweet moments and who will be there for him, makes me long for that just once in our lives, help for us would come as swiftly as that viral post from a Coldplay concert......

Could you imagine if before building more stadiums they actually built group homes or weekend respite centers? How many marriages would be saved? How many exhausted parents would get to actually have a weekend, a whole weekend? Hell, I'll settle for a whole day on a weekend!

To add insult to these emotions -

I saw on FB where the obituaries of all who died in the Texas Flooding of 2025 were going to be shared to honor the lives of those lost. I'll be honest... That one hurt. A lot.

I know this will be rather controversial, but I'm in my "I just don't care anymore" phase when it comes to the judgement of others. I've lived through more trips to hell and back than most mere non-military mortals should have to.

What has compounded my emotions since Brandon's MOM MOM MOM MOM MOM MOM MOM moment of connection --- has been the way the media loves a good tragedy -- unless it's severe autism's.

All I can think of is those beautiful children lost in the flood and the lives they each were able to live -- however short. The whole world mourned that they died. I did too. But I also sat there in silence whispering to the heavens how thankful I was that their children were able to be at camp, have friends, have typical lives. The kind of life my son never had the chance to live as a child. They were whole. They were children, youth, teens, adults who hit every milestone that makes life worth living.

I am so saddened by their tragedy. I share this with certainty - no one understands those parents plight, grief, sadness, horror more than parents like me. Their precious children, swept away in a flood and drowned. Ours, swept away in a flood of vaccine injury, their futures forever as silent.

But I wonder if anyone but us can know what it's like on the other side of that terrible coin of tragedy?

When do the living obituaries of our children get to be shared for the world to read? For them to get the help they need?

______

Here lives Brandon. He's 30 something years old and has the most beautiful brown eyes. Ahhh, when he smiles, however brief and fleeting those moments may be, he pierces the darkness and outshines the stars. His fellow survivors are an "other" brother and a worn-out caregiver of a mother, and a father who has the tools in his garage to fix most anything Brandon brakes, shatters, or knocks a whole in, except a tool to help heal his own son. Brandon's laughter, however brief that is, fills the house with color. But I don't know his favorite color, his favorite food, or who his best friend is. He doesn't even have friends I could invite to a Birthday Party he could never tolerate, as he doesn't even know he is, let alone that it's his Birthday. I don't know what he would have wanted to be when he grew up, because not only has his childhood been stolen by vaccine injury --- his voice has as well. He has never since regression from vaccine injury spoken a word. He cannot read, write, or talk. I have no pictures he has independently sat down to draw me all on his own, for me to see a bird in the sky from a bunch of mumbled, jumbled scratching of a toddler drawing a picture for his mommy. I have no videos I have taken of him hitting a home run in baseball, the winning shot in basketball, or him playing the lead role in a school play. I've never received a card written by him for Mother's Day to hold on to while he's off at camp or college and I'm missing him; nor a handmade gift that he alone has made for me to remember him by on the days my loss at his future that he has been robbed of, throbs. Not only has his independence been lost as swiftly as a flash flood, but with it the rushing water has taken away every milestone that makes childhood, a childhood. Notably, in the ability to imagine.

He's never been able to share with me the name of his imaginary friend, though through the times he's nearly died from seizures, or seizure falls, I'm sure he has seen THE FRIEND of all friends, Jesus. But I don't know that -- he can't tell me about his dreams, his nightmares. He cannot tell me what hurts. What makes him laugh. Or cry. He has an "other" brother. They've never played "Cowboys and Indians". They've never conspired to drive me crazy with their shenanigans sneaking out at night. My "other son's" children will never have cousins where their families all get together for BBQ's in backyards. Because Brandon will never marry, have kids, give me Grandchildren....

Brandon's future was stolen before he ever had a chance to live.

And that is the worse tragedy any parent can ever face.

Ever. Who will dare to share the obituaries of the futures lost of each and every vaccine-injured child?

No one. Yet here lives Brandon and all those like him whose lives are in the shadows, no one searching for their health to recover, a multitude never receiving the rescue they need.

Who is digging through the muck & mire of their medical history to uncover (and publicly publish) what stole their future?

Where are the JJ Watts donating $100,000 toward group homes, respite centers, expanding Day Habilitation Programs to end the waiting lists for parents to have a place for their adults to go for a few precious hours a day?

The camps along floodplains will learn from this tragedy. Changes will be demanded. And made. No matter the cost. Sirens will be installed. Emergency plans created. No parent will ever send their child to a camp otherwise. What stole those precious, innocent lives will not happen again. Faults will be found, those found at fault will be fired.

But our vaccine injury tragedy? Decades long with numbers rising faster than those floodwaters?

Nothing has changed.

Not a damn thing. Shhhhhhhhhhhhh..... Listen! Do you hear those sirens blaring for help to come save us and our vaccine-injured children from being swept away and drowning? No? Me neither.............. ~~~~~~~~~~~~~~~~~~~~~~~~~~~ Speaking of fleeting moments.... In those fleeting moments of such tenderness of smile, emotion, and the MOM MOM MOM of our vaccine injury -- I looked down at Brandon and saw the all too familiar "look" come upon him. A Grand Mal Seizure completed my grand welcome home. And life goes on...

An autism "All I Can Handle" Mother's Day confession...

 

Mother's Day in Missouri with my Mom.....

My "Life with Autism, Seizures, & a side of PANDAS" doesn't leave much room for a Mother's Day "celebration" of sorts. In fact, Mother's Day is a day where I just want to be away from all that reminds me of what has been taken from me as a Mother - when it comes to vaccine injury and the milestones it has stolen in my son.

My almost 30 year-old son does not understand that I'm his Mother. He lives at home, yet we've never had a conversation. I've never heard his speaking voice. I've never received a card from him, a gift, a breakfast in bed for Mother's Day. I've never even heard the words "I Love You, Mom" from him.

Over the last few years, when at all possible, I have instead spent Mother's Day weekend away from reminders of such loss. It's simply become too painful to see the man that stands before me so vastly different than the dreams and hopes I had for the son who stole my heart when he was born. I love him fiercely, - both of him. The who he is now and the who he could have been if only. It's so bittersweet....the gifts he has given me in my life, in forging me, my Faith, have come at the expense of his life, his ability to even know there is a God. It's so hard to reconcile the reality of that. The priceless gifts of character, strength, resilience, faith, unconditional love, knowing what truly matters in life, who truly matters - weighed against such suffering he must endure - for so long.

It's a cruelty like no other -- to know how my spiritual gain comes at the expense of his eartly loss.

Mother's Day has become an occasion too hard to look in the eye, too impossible to be a part of.

I want the cards, the calls from him, the flowers he delivers. I wanted the handwritten messy nonsense scribbles of a little boy. The crumpled flower pulled from my garden. The burned pancakes and spilled orange juice.... The adult humor of both my boys posing together for a Mother's Day picture and ending up much like the viral video of brothers posing for a picture on Mother's Day... I wanted the "I love you mommy!" I want the "I love you Mom!"

I wanted those worldly things that are fleeting and shallow and mean nothing in comparison to all the eternal lessons I have learned through his silence, his suffering.

Few will truly get that.

Many will be offended by it.

But it is truth no less.

Many experience loss - few must live with it daily for the rest of their life. Look it in the eye. Watch it suffer and being helpless to truly help. I would rather have my son live a short life fully - than a long life devoid of all the milestones that make that life worth living. The same with my marriage, with anything. To have the absolute priceless gift of having all of someone, even for such a short time, is far better than having someone before you for a lifetime who is not able to fully live. It's an emotional rollercoaster for me -- Mother's Day and all the commercialism that it portrays. It is a stark contrast of how we can celebrate that day as a family - in essence, that we can't. So I don't. I simply use that weekend to be with my Mother - and when possible - my Mother-in-Law too...as they both live within 30 minutes of each other in Missouri. I go to spend that time with my mom - as I know she longs for that as much as I long for the things I can't have with my son. We share a love of gardening - she endures my selfies - and for this trip - we had the hilarity of her bringing a plastic snow-shovel for us to go to the creek to scoop rocks for her landscaping. Oh my... I laughed so hard. Obviously we ended up picking up the rocks with our hands to fill the buckets... What is that term, "Bringing a knife to a gun fight?" LOL..... Anyway ---- What my mom lacked in shovel knowledge - she made up for in being a water volleyball beast at the YMCA with her fellow water aerobics peeps. #MomsGotMoves #BeastMode ~~~

364 days of the year I will be Brandon's mother, caregiver, advocate, -- and all that goes with that. But on Mother's Day ---

"All I can handle" is to simply be a daughter. Thank you Mom, & Mary Ann, --- for a Mother's Day weekend that was memorable...

Cast of Characters: What the Tide Brought In...

 Every book has a cast of characters....

For my time in Barnegat Light, NJ -- in what is termed, "Michelle's Great Escape" - these are characters in my cast...
                                             

My Mom... Barbara Buttram.   

                                     

She has a servant's heart and an Italian's temper. As do all of us at "Team Dotter" - how could we not?  An Italian Grandmother and a German Grandfather!  Mom loves life, her family, and the shore.  I heard her comment to someone at the shorehouse that she's a "wallflower" - but she is anything but.  She is talented, vivacious, loved. I should tell her that more.   Any strength I have, I get from her.  Her life hasn't been easy - she's had many disappointments and discouragements - but she has always dug in and endured.  She took care of my brother and I as a single mother for many years.  We may have been considered poor - but what we didn't have in money, she made up for a thousand-fold in memories - love of family, of Christmas, and the seashore.  I can endure what I must in my "Life with Autism, Seizures, & a side of PANDAS", because she endured what she had no choice but to endure.  My strength, came from her adversity.  The best things in my character, were forged from the best things in hers.  It was a blessing to be with her this summer in Barnegat Light -- seeing the joy in her eyes, hearing the stories of her childhood memories there, watching her collect the seashells in the sand.  I can't wait to go back next year with her.  And you will, Mother, go back with me next year.  And the year after.  And the year after that...

I will cherish this time at the shore house with her -- I am Thankful, Grateful, & Blessed that she had this time for her - as I had it for me!

On one trip to Surf City 5 & 10 where this below picture was taken - on the way there she showed me where my father worked when they were together.   

Sometimes it's hard to get a genuine smile out of her..... but after this particular trip to the souveneir shop, I now know how to get her to smile big for a picture...

Right before I took this snapshot, I told her to "Smile like you did the night I was conceived!"

Yep - that did the trick.

My Uncle - George Dotter, Jr.

Larger than life for as long as I can remember.  He and my Uncle Joe were my "Mafia-Uncle's" - Italian to the core, literally looking like they could have played lead roles in "The Godfather" movies.  In fact, there was a time or two I remember referring to them as just that....being in the Mafia.  It saved me a time or two from people making fun of my Polish last name -- Baginski.

Uncle George is perhaps one of my favorite people in the whole wide world.  We have a brotherhood/sisterhood in that I think we both see ourselves as the "black sheep of the family" as it relates to standards the world measures a man, or woman, by.  Perhaps that's why I love him as I do.  He is real, genuine, grounded in truth & transparency.  For me at least - that has been a curse more than a blessing it seems.  Where many are fake, with us, what you see is what you get.  We say what we mean, and mean what we say, and I for one, wouldn't want to live life any other way.  Through the years, he has been the only one in this world who has ever reached out to me consistently.  Always the first to call on a holiday.  Always.  Every time a holiday would be upcoming, I would make a mental note to call him first!  But I always get busy, or forget.  He, never has.  That has brought such comfort to me all these years -- just knowing my Uncle George loves me enough to make sure he calls me and checks on me.   And if I made the ghastly mistake of telling him "bye" when we hang up - he will call right back and admonish me that you never say "good-bye" - you say "see ya later."    One hundred years from now when he's allowed to die - that will be on his gravestone....  A simple, "See ya."

He absolutely spoiled us while there - I never knew he was such a great cook; - and the night we had our shell-painting-pocalypse, he proved to be quite the artist as well.

Uncle George is as salty as the sea with a depth of character as deep as the beaches are long.

He loves his son like no one's business, is a loyal friend, a devoted family-man, and beloved fisherman at heart.

He would do anything for you - he would give his right arm for a friend, his life for family, and one day on a dock in Florida years ago, he gave his left eye freeing a Blue Heron who got tangled in his fishing line.

I'll never forget that this night-owl got up at zero-dark-thirty to walk to the South Jetty with me to watch the sun rise.

When Todd & I went Kayaking in the bay in our sinking ship in a thunder storm, I knew that if we were swept out to sea he would search for us until he found us.  And I was right.  When we made it back to the dock, I saw him at the Bait & Tackle Shop borrowing a pair of binoculars to see where we were...

My Aunt -- Elaine Watley

If my mom's quiet demeanor (for the most part, ha ha ha) could be described as the soft glow of the moon --- my Aunt's vitality would be described as the Sun in all its brightness & boldness.  Because of the seclusion of my "Life with Autism, Seizures, & a side of PANDAS" - I don't know her as well as I would like.  But the things I do know, the memories I do have - are priceless.  My Aunt is a woman of faith who has been the center of her family...  From the days on the farm, to her days living on the water, she has been a devoted Wife, Mother, Grandmother, Aunt, Sister, & friend to many.  She has seen it all and done it all!  From raising chickens on a farm to catching crabs in the sea.   She has a wanderlust to travel like no other!  She has always prayed for us, and Brandon; and her Christmas cards and Birthday cards over the years have warmed my heart.

It has been an absolute joy to have that time with her at the shore house!  It would not have been complete without her!

The "Jersey-girls" as we called ourselves made for such lighthearted times of lunacy & laughter!

And oh my goodness - can my Aunt Elaine make some killer pizza, porkroll, pissers, & dessert!

I cannot wait for next summers adventures!

And food!

The Jersey girls!

My cousin -- Mike Dotter.

Ha ha ha, this picture isn't the greatest because I had to crop it so much - but it was the best depiction of what he must have felt like in a house of - well - us!  "Mike, can you help with........"   Oh Mike, "Can you fix this..............."   "Mike, come take a picture with us eating pissers even though you don't eat them!"  - Hence this picture of the face he made that I didn't even realize until I was editing pictures!  Oh my golly-gee I laughed so hard!

I don't have many memories of Mike simply because we live so far apart and I've only like been in the same room with him about 3 times in the last twenty years or so!

I am so Thankful, Grateful, & Blessed for these past two weeks spent with him!  He is a remarkable young man and the love he has for his father is so evident!  I hope he enjoyed being with us as much as all of us certainly enjoyed being with him!   He taught me much, about many things.  He's smart and well rounded in a myriad of intellectural musings; and as the picture shows - he's funny as hell.

God Bless him, he endured playing continental rummy with us for the first time ever!

As a vegetarian, he has taught me many recipes in our short time there!

He's such a good sport - even though he doesn't eat seafood, he went fishing and clamming with us; and even though we weren't crabbing - he caught one of those too!

He put us all to shame with his artistic ability in painting shells!

I enjoyed our time going to the coffee-shop and watching the sunset!

I cannot wait until next summer!

My neice -- Aly Buttram.

Aly, Aly, Aly.... this was her first trip to Barnegat Light, NJ!   
She represents the 4th Generation of LBI'ers to grace the grounds of greatness!  Her chapter here is just the beginning of a great book to come - and I hope to be a part of it as much as I can!  Already an accomplished world traveler - I hope she comes to call this place her favorite - as so many of us do!  She was such a trooper from climbing the crow's nest to fishing to packing and unpacking as we played musical shore houses!  She was there for only a few quick days - but I hope that was just enough to catch "Old Barney" fever!

My brother - Robert Buttram.

World traveler, business tycoon, international foodie, - my dork of a brother.  We are as different as day and night in some things, but share the common bond of love for family and the shore!

I love him unconditionally and was so thankful, grateful, & blessed that he could be there with us if only for just a few short days!  We tried to do as much as possible in his time there - and have already decided to go back next summer!  This year he could only bring Aly - but next year the whole crew - I cannot wait!

I'm sure Uncle George appreciated his visit most - in that it gave him a break from cooking!  

My brother is the "beefmaster" of the grill - and dang he can cook some steaks, fajitas, & burgers!

In his own way, he too came for healing - and I so loved seeing the times he was able to totally relax.  I pray that next summer when he can stay longer - he can totally have a time as I did, of total unwinding and revival!

He even rented a boat for us while there - maybe next year he'll be rewarded for that generosity and catch the most, and biggest, fish!

Me -- Michelle M Guppy.

A stark-raving-mad-camo-wearing-lunatic-who-loves-the-Lord-and-lives-on-the-edge-of-crazy-yet-not-too-far-from-sane...

I didn't want to hang Mike out to dry with him being the only one with a goofy picture, so I chose this one to represent me.    And truth be told, as much as my hair was the elephant-in-room - the - can't-see-the-forest-through-the-hair of my time there - it pretty much sums up why I needed to even go there!

I felt like I was hidden under a mountain of mundane tasks that didn't seem to make much difference in the world...

 In the words of the Mad Hatter, "I used to be much muchier". 

 I lost my muchness....  

A song that I fell in love with right before I left - has the line, "I was blind but now I see....just an old hallelujah with a new melody!"

This trip was my "Old Hallelujah with a New Melody!"

I saw an old island through new eyes and indeed came home singing a new melody!

I will forever marvel at that.

Well, that, and the fact that I got up at 4:30am to walk the beach to the South Jetty to sit on the rocks and wait for the sun rise........

Todd -- my rock, my spider-monkey, my husband.

Much like in this picture above - he too remains hidden behind the responsibilities of work & caregiving.  It was such a joy for me to look at him through the lens of my camera during his time there with me - and see him enjoy himself.  Albeit a bit too much in climbing to the top of the Bell Tower at the end of the jetty and the top of the Crow's Nest at a family friends house!  I wish Brandon could know the depth, breadth, & width of love and selfless caring his daddy has for him.  I pray Matthew never has to know that with his own children!   What we have lacked in worldly pursuits, we have gained in not missing those worldly pursuits!  I think that is the greatest thing about him, and us.
He truly is the rock of Team Guppy.   I love him, and how he has walked endless miles on the beach and jetty, kayaked endless hours in the bay, and is slowly but surely with each trip there, - understanding why I love Barnegat Light so very much.  His love & servive for the Lord both humbles and inspires me.

Basil - the Shorehouse dog.

Every shorehouse needs a dog - and Basil fulfilled her role in stellar ball-chasing fashion.  I'm sure she's still exhausted from all the fetching and fooding.  I know at one time or another, I saw every one of us sneaking food to her under the table.

What a remarkable dog she is.

She is just what we all needed while there - icing on the cake of a most magical, memorable, miraculous time with family.

~~~~~~~~~~~~~~~~~~~~~~~~~~

All of these people, and the dog, made for an incredible cast of characters in this fairytale time of family.


I cannot wait until next summer - to see them all again - and whoever else the tide brings in!