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...