Faithfully fumbling

 

I write this for me.

That I am sharing it with you is a miracle of sorts.  There was only one other time I allowed my "vanity to vanish" in the face of such pain and darkness.  That post can be found by clicking here.  
Or if that link doesn't work, try this one: https://lifewithautisminpictures.blogspot.com/2014/09/doing-away-with-vanity-dignity-tonight.html

I want to remember how I felt on this day, so that days, weeks, or months from now when I've healed, I will be able to look back and see what great works God has done.

I don't even think this picture does justice to the pain I've been feeling for a while now.

No, not that pain, that cruel, relentless, hideous, nighmarish pain of watching my son suffer in his vaccine injury "Life with Autism, Seizures, and a side of PANDAS".    

Rather the pain my body is feeling from the chronic, continual, equally cruel stress of having absolutely no consistency.  No balance.  No me.

Yeah, that sounds pretty selfish.  "No me".  

I get it.

I've read the books where it says it's not about "me".  

We warriors get that. 

Trust me.

In fact, the past year has so not been about me, my body has rebelled.

It has said enough.

No more.

Problem is, there is more.

That's the beauty of this life with vaccine injury.  It is a beast that keeps roaring.  It doesn't understand enough.  It demands more.  More time, more money, more attention, more sacrifice.  It demands everything you have, and then it demands even more.

And so I find myself in this state of such pain.

My stress-relief, my joy, my 'life is worth living now' moments were the times I walked in Nature.

Now, those walks bring such pain that I cry most of the way walking.

My legs, one in particular, has had enough.  This after months that my hands have said they had enough in the numbness and no strength at times.  Now it's my left leg particularly.  All those months of no Day Program because of "COVID" - the barely two hours to myself  without Brandon I walked as fast and far as I could.  No time for stretching.  No time for relaxing.  Just time to do essentials of stress-relief, which for me was walking.  I couldn't even alternate with swimming for....balance......because the gym closed at 5.  Because of COVID you know.  Virus' are more active after 5 and they are far more deadly from the parking lot to your table at a restaurant than they are while you are sitting at the table.  I wouldn't really know that - we never got the chance to go hardly to test that theory out.  

I don't want to come across as a complainer or seeking pity.  That's what's so hard about trying to raise awareness about the lives so many like me live.  To adequately share the hardship, challenge, stress, cruelty - it does come across as that.  Mainly because you can't adequately share how hard this life is without sharing one year-long loop of the daily imprisonment.  Or in our case for the last year, the solitary confinement.  We do live in a prison of sorts.  Our lives so confined by what our loved one with vaccine injury can tolerate.  What he can tolerate, who he can tolerate, where he can tolerate.   For us that pretty much leaves us home, alone.   The Day Program our only other consistent that he could tolerate.  And with the flip of a mandate, that was ended.  Leaving us with our solitary confinement.  If Brandon had no where to go, then neither did we.   

All those months I could slowly feel the stress burning through my body.   

I tried to do what I could, when I could, but it wasn't enough.

It's never enough.

That's the other dimension to the cruelty.  I'm never enough of anything that I need to be to others that in a way I just quit trying.  The guilt is too all-consuming.  To go walk when my husband gets home, because that's the only time I can -- guilt.  Guilt that I can't spend more time with my Grandfishy. Guilt that I can't serve others in ways I would like.  Guilt that I can't help Brandon more because there simply isn't any more money to throw at the ravenous beast of vaccine injury.

Guilt is pretty much the fog blanketing each morning that I wake up to the reality of what this past year taught me.

All the money on all the studies done on families like mine that all come to the same conclusion that we need respite, we need to take care of ourselves -- but never one penny spent on how to make that happen.

Which leaves me like, well, me.  

In such pain because of no time for self-care.  I could make the time, but then the times I had to make that time, is the only time I could even see my husband.  For me to make the time to take care of me, I have to forsake him.  The times we can beg and pay someone to care for Brandon so we can see our Grandfishy, means we have to forsake that time doing something together, just us.   I don't know how to stress this enough - that there isn't time in our severe brand of vaccine injury, to 'have it all'.  Brandon's care is 3 shifts.  And even though we are the exception in having found a day program to even accept him the 5-6 hours he actually makes it there on the days he isn't having a seizure - it still isn't enough for "us" because my husband has to do this little thing called making a living during the day.

I've felt so isolated and invisible since last March - I'm sure the reality of that didn't help much on top of the stress of not one outlet away from Brandon.  My time was spent literally begging for crumbs of respite, then the guilt of when we had it - wanting to just rehab my body instead of going out to eat with my husband.  Sure, a few times we did go swim together.  Everything we both wanted to do together or individually, had to be crammed in 2, 4, or 6 hour intervals because we never knew when the next opportunity to come.

Respite was a form of stress in just the guilt of that!

Typical families have choices.

We had crumbs.

To even sit together to eat at night was stressful, the constant interruptions from redirecting Brandon or getting him something he needs.

I think my body simply reacted to what my mind could not comprehend in how cruel it is to know that your only support can be pulled right out from under you on a whim.  And how there is absolutely no other alternative for families as severe as mine.  I begged places to allow me to bring Brandon there, but the answer was always no.  He's too severe.  He needs too much supervision.  Too much care.

I begged for help finding a home for Brandon, those prospects were even more dismal.

The reality of this being my life for the rest of my life, broke me.

Literally.

My nerves, my hands, my legs.

I suffered in silence for weeks, months.

I tried to "hush until I healed" but the pain was so great it did spill out now and then in too much transparency in how disappointing it is, was, that those places in this world designed to serve & encourage, were instead silent & distant.   I have never felt more invisible.  My warrior tribe excluded.  They know.  They know what this life is like, and they are the first to help a fellow warrior not fall.  Or at the very least be first to help pick you up when you do inevitably fall.

I try so hard to be that "NDCQ" ambassador living out the "Life is Tough, BE TOUGHER" - because I so believe in it.  That mental attitude, that mental toughness, is why I'm alive, and will be until the LORD calls me home.  Until the LORD calls Brandon home.   But I just don't think even that does our lives justice.  We never get off our battlefield.  We never get to mourn the loss of suffering, ours or our loved one's.  What is so hard to put into words for typical people, is how we are relentlessly on our battlefields.  Constantly watching our loved one suffer.  There is no reprieve, except those stolen moments of calm or respite.  There is no time to reload.  There are no reinforcements.

There is just us.

NDCQ.

And the guilt that consumes.

I had some "loyalty points" for staying with my gym through the COVID closure.   

Once my leg hit a threshold of pain I couldn't stand anymore, I had no choice but to put myself first. Even that statement is misleading.  I get to put myself first only after I get Brandon to his Day Program.  If it's open.  If Brandon doesn't have a seizure and can go.  Planning ahead is impossible.  How can I schedule an appointment if I don't know what that particular day will bring?  If Brandon will be up in time?  My only certainty is to do those things when my husband is off work.  Which again begins that endless guilt cycle...

So, I went to the Chiropractor.  Doc reassured me I wasn't dying, because that's how the pain felt.  He stated the obvious in how out of balance my body was.  He suggested along with his adjustments, I go get a deep tissue massage.  Yeah right.  Another thing to feel guilty about.  Instead of time with my husband, my Grandfishy, I now had another flaming sword to juggle and feel guilty about.

But I had no choice.  I can't go on in such pain.  So I eventually made the appointment.

I have never had a massage before.

That's probably a whole other blog to describe that experience that was both the most relaxing yet painful experience of my life!  Laying on the warm table with the weighted warm blanket with such relaxing music and essential oils diffusing made me forget everything but that moment right there.  I don't think I've ever felt like that.  Just a total relaxation with not a thought of autism, seizures, PANDAS, being a loser wife, mother, grandmother.......  

Just total emptiness of thought.

And then she would hit the muscles and I would remember why I was there.

At one point she told me she felt like she was massaging a brick.

And by the bruises I had the next morning, I believe her!

I'm doing all I can to try and heal the bands and flexors in my legs that are so tight and pulled and out-of-balance.

Doing all I can in trying to get back to being able to walk without crying.

But it is hard.

We simply do not have the luxury of being able to take care of us, our husband, our family, all that we have to take care - with the huge elephant of vaccine injury in the room.  It demands to be first.  It's simply too big to shove out of the way.

So I don't know where that leaves me.

I know I need to take care of me while there's still a me to take care of.

It's painful enough to care for someone who is suffering so much for so long.  

I can't be in pain doing it and hope to survive as long as I need to for him.

Sadly, we warriors are the only ones who get that.

Hence my faithfully fumbling. 

I am fumbling.

But I am determined to remain faithful.

My target in life is that I believe my faith will collide with God's faithfulness.

Life is Tough.

I have no choice but to be TOUGHER.

To the #HOPEISM of that -- 

HOOYAH.

I share this because whoever is reading this, knows someone personally who lives a life like I do, who cares for someone with autism, seizures, PANDAS....

They need encouragement.

They need help.

They need to be able to take care of themselves, but they can't without help for their loved one.

They need enough respite opportunities that they don't have to do as we have done, have to choose between time alone, time together, time with family/grandchildren, time to do chores that need to be done and can't be done with constant interruptions.....

We're really good at holding people up who are going through short-term suffering, mourning, ailments.

But for those of us whose suffering is lifelong - it sucks.

In Remembrance of Bob Buttram

 

Robert Edgar “Bob” Buttram

May 31, 1940 ~ October 18, 2020

Robert Edgar “Bob” Buttram, 80, of Anderson, Missouri, passed away on Sunday, October 18, 2020 at Mercy Hospital Joplin, Missouri.

Born May 31, 1940 in Albuquerque, New Mexico to John H. and Evelyn (Welch) Long, Bob led a varied life greatly enjoying golf, fantasy league sports, and bridge. Through his struggles Bob was finally rewarded with the happiness of his grandchildren, grandnieces, and grandnephews. He loved keeping in touch with each and every one of them as well as wishing them each a happy birthday. It was rare for Bob not to be the first one to call with birthday wishes. The family would like him to be remembered for the love he had and how he made each and every grandchild, niece or nephew feel special. He had a joke ready on any and all occasions and if you were lucky enough to physically be with him maybe even a piece of candy.   

 For those of us fortunate enough to spend time with him we found him extremely competitive and always willing to play board games and cards. To be counted among the few who bested Bob at cards or fantasity football, you know it was indeed a special moment in your life.  

 Bob was preceded in death by his parents and brothers: Jack Buttram, John Buttram, and Ray Buttram .

Bob is survived by his children, Robert Michael Buttram, wife Ana, children Kevin, Alexandra, Robby, and Michael of Spring, Texas; Michelle Guppy, husband Todd, children Mathew and Brandon of Cypress, Texas, Robert Einar Holt, wife Pamela, children Noah and Olivia of Middleburg, VA; eight grandchildren and one great grandchild, Royce, along with numerous nephews and nieces as well as hosts of other family and friends who will dearly miss Bob.

Bob was one of seven siblings and is survived by brothers, William Buttram of Gravette, Arkansas, James Buttram of Lanagan, Missouri; sisters, Frances Cook of Diamond, Missouri,

Online condolences may be sent to the family at:

https://www.ozarkfuneralhome.com/obituary/robert-buttram

* * * 

Rob's Eulogy:

My name is Robert Michael Buttram and Bob is my father.

I had an up and down relationship with my father, and barely saw him or spent any real time with him growing up.   Later in life I did get to learn who he was in the many years he worked very hard to make it up to me.  My dad lived with me in Joplin at the beginning of my Walmart career, moved with me to Kansas City as I worked up the ladder; and then finally moved with me again when I moved to San Antonio TX.

 

I learned a lot about who he was in those years.  Our relationship was still very difficult.  It wasn’t until I made him a grandfather that I learned who my dad really was.  I feel confident that the man I grew to know; that grandfather, is the same man that I am sure all of you know.  A man whose heart melted when he held one of our children.  A man with no means and no money, nor cared for it anyway, who always seemed to get a birthday or Christmas gift for our kids.  A man who regardless of getting a gift, made sure that he was the first to call you on your birthday, or take you to lunch if you were within driving distance of him.

 

I will get back to this part of my dad in a bit...

But to fully understand who he was, you have to talk about his insistent need to always win and be right. I remember a time when he was visiting me in Kansas City, where he got so mad that I was winning in scrabble and dared to challenge his made-up word, that he stormed out of my apartment and set off to walk home to Anderson.  Another time in Neosho, that for the first time ever it looked that I might break par in Golf and maybe beat him, that on the back nine he constantly tried to play mind games with me so that he could win, (which he did).

 

He had a temper, but also a heart as big as anyone’s.

This also reminds me of a couple stories of my dad getting kicked out basketball games... During my senior year at the Neosho holiday tournament, my dad got so mad at the refs they kicked him out. Unfortunately, I am pretty sure he has been kicked out of a few of our family members games.  If anyone can provide testament for his love of the truth and/or always being right, try riding with him to Texas from Missouri like his ex-wife, my mom, did so many times to come visit my sister and I. I would have hated to be a fly in that car with those two. I bet they argued over where the Texas state line really is, and if that river is really a river or not.  As a  matter of fact, he probably tried to convince her that it was not water at all, that it was jello down there.

 

In his later years I found that his need to compete didn’t stop at board games, trivia, the Almanac, cards, or golf; but also included Fantasy Football. My dad got so mad at Tom Brady for purposely not scoring a touchdown at the end of a game when they were winning, just so I could win, that he wanted to quit our league.

 

In the end though we always ended in an argument much like I am sure many of you also endured with him...  One of our last fights was over how long it took to drive from Miami to Tampa (which I had just looked up on GPS).  He got so mad that I argued with him, and as usual he hung up on me.

 

Unfortunately, for many of us we just couldn’t understand the lesson that he was trying to teach us; or at least the lesson he was trying to teach me.  Standing here in front of all of you I regret so much that I didn’t listen.  That it took his untimely death for me to ‘get it’.  In my pursuit of being Wal-Mart’s youngest ever CFO, and then later more stuff, and then owning businesses worth hundreds of millions of dollars, we constantly fought.  We always fought.  Each new material possession, each International Trip, each new company I owned, drove us farther apart.  He constantly tried to get me to listen, to understand.

 

How could I?  How could I listen to a man who his whole life could never keep a job, who never admitted to being wrong, almost never apologized.  A man who never owned his own home or had a hundred dollars to his name...  A man who lived off $684 Month.  Why would I listen to him?

How my arrogance blinded me!  My dad was trying to teach me the most important lesson of all.  One that I only can see now through his death, and in the story that we all share.  It’s the personal relationships we keep, it’s our family being together, knowing each other’s phone numbers, names, birthdays, and always remembering to call.  Never forgetting what we all have in common.  Never forgetting to try and put a smile on your face and laugh at a joke or make you feel special on your birthday. 

 

Unless I change, I can guarantee my dad died with far more than I will ever accumulate.

He knew all of us. He loved all of us. He had the love of ALL of us.

 

For me, it’s not too late.  Perhaps  too late to tell him while he was alive, but not too late to slow down, spend more time with my family, my sisters family, my brothers family, my kids, and many of you --- my relative’s that I have put off getting to know in my pursuits of bigger and more.

 

I leave you all with this, my hope...

My HOPE that we all can take a little piece of my dad with us, and to remember that life is about the personal relationships that we have. 

For me it’s one day at a time, but I hope to start now and never forget this lesson my father’s death has taught me.

 

***

Alexandra's Eulogy:

Robert Buttram, Bobbybitejr....

 Friend, Father, Brother, Grandpa, or role-model. He was many different things to us, but the one thing he was to all of us, was loved. 

 To me he was my grandpa, my role-model, and my personal comedian. I would call my grandpa multiple times a week, and starting every single phone call he would say, “Hello, is this you?”    I would respond saying, “No this is me!” and my grandpa laughing, would say, “Oh, I thought this was you!”   Every single phone call he would end with a joke.  I remember the last joke my grandpa told me:   A Texan goes to Australia for vacation, while he was there he takes a tour with the local guide. While driving around, the guide points out a large wheat field. “In Texas, we have wheat fields twice as large!” They then drive past a herd of cattle. “Our long horns are at least twice that large in Texas. The guide is starting to get annoyed with the Texan, so he decides to take a detour. The Texan soon looks over at the kangaroo and says, “What the hell are those?”  The tour guide says “What? You don’t have grasshoppers in Texas?”

Not the best joke, but Grandpa, being forgetful, told that joke to me around 10-15 times in the last several months.

I remember one day after a terrible and stress-filled school day, my grandpa called me with a joke and a story about a little girl whom he loved, Bailey.

Just a phone call from my grandpa inevitably changed my mood. I can’t believe he is gone and I can never get another joke and phone called filled with laughter. I was telling my aunt a quote I had read a couple weeks ago, when you question why God had to take someone so special away from you. Ask yourself, which flowers do you pick in a garden. God picked just about the biggest flower, but one that needs to be watered the most.

While my grandpa was definitely a handful, I will never regret one conversation or any time spent with him.

God got a good one and we all know it too, we all loved him.

And sometimes it takes a loss to realize what you once had.

***

Michelle's Eulogy:

Though the early years of our step-father, step-daughter relationship were more roller-coaster than smooth-sailing ---  the many years following were ones of camraderie sprinkled with love.

  If it were not for Bob sitting with me in the living room until well past midnight when I was in the 3rd grade and couldn't master subtraction - I would still, today, be trying to figure out how to balance a checkbook!  Any word problem in math that was ever assigned to me over the school years, was done by Bob.  If it weren't for him, I would never have learned to drive a stick-shift car, let alone be able to shift on an incline.  I like to think a number of any premature gray hairs of his were caused by those driving lessons alone.  He had a sharp mind and a quick wit.    One always knew exactly what Bob thought, and exactly where he stood on things. 

Bob was very matter-of-fact, not only with things he thought, but in bluntly deciding what he would, or would not do. If he didn't want to do something, you were not going to change his mind.   Good, bad, or ugly, he was real.  Never fake.  And in today's culture, that is rare.    If it were biologically possible, I would say I proudly inherited the good in those traits from him.

With that said, I like to think I was special to him in that I'm sure I was one of the select few who could get him to take a picture wearing a camoflauge santa hat and matching pajamas after he repeatedly said no.  He didn't smile for the picture, but he begrudgingly let me take it.   Rare moments like that were so very special for me and I will cherish them.

He taught me the value of simplicity.  

I have always liked to make each Christmas special - not with gifts - but with memories.  One Christmas I bought an ornament that made me think of each person, and wrote them a Christmas letter as to why that ornament represented them.  The ornament they opened and hung on my tree, and the letter they kept as a gift.

Bob's ornament was one that depicted Charlie Brown and his Christmas tree.     That little scrawny tree that was missing most of it's branches and needles, and that held only one ornament.  His letter one that reflected the good in hime in why I chose that for his ornament.  As long as I've known Bob, his lifestyle was like that Christmas tree.  Plain, simple.  I felt sorry for that at first - in the circumstances behind that ----but the older I got, the more I admired him for the lesson I learned in that.   He lived simply, had few material possessions, and yet seemed to lack for nothing. Where most people collect things, he, in a way, collected people.  People mattered to Bob.   Personal connections.  He may not have had a big home, fancy clothes, or a nice car --- but he had something far more valuable --- he knew everyone's Birthday and phone number and made you feel special that he took the time to call.   No amount of wealth, status, or prestige could ever match the priceless of that.  I deeply regret the times he did call that I didn't answer, or the times I forgot to call him back when I saw his missed call.  

No matter what he got wrong in life, he overwhelmingly got that priority right; and I pray that is something everyone comes to appreciate more, and carry on, in honoring his life.

I love Bob more than ever in thinking about that, and I never truly appreciated that as I should have.

Bob knew everyone's Birthday.  

And everyone's phone number.

And he took the time to call you when it was yours.

It is hard to share memories of Bob without including my mother.  Though they have been divorced for years, they have found a way to remain friends.  Greater friends than they ever seemed to be as husband/wife.   Whatever the dynamics were, I am thankful for how we could all still be family and do things together, not separately.  Thank you, Mom, --- for always doing what you could to help Bob.  Please forgive me Bob that I never properly thanked you enough for helping her over the years.  For doing your part in the "Dynamic-Duo" that I teased you both about.   Together, more often than not, they put aside their differences for the sake of family.  When I would visit, he would drive us to stores and wait in the car as we shopped.  Then together we would eat at Red Lobster where I would unashamedly say we were there to celebrate their Anniversary.  I was so bad.  "That's not funny, Michelle!" he would bark back!

 For years when Bob was healthy enough to drive to Texas, he and my mom would drive together for the holidays.  I would always tease him about "Driving Miss Daisy" and he would roll his eyes with that, "Yeah-right" remark he was famous for.

  I will miss those candid moments and am forever Thankful, Grateful, & Blessed that we could do those things together.    

Thank you Mom for being there with him when he passed away - as well as for being with him on and off the entire time he was in the hospital.  I'm so in awe of that.   I am thankful for Sue as well - for being there for my mom and for Bob where I couldn't be.  I am thankful for your hard work in trying to prepare a better place for Bob to come home to from the hospital. 

But God was one step ahead of you I suppose. 
In preparing the ultimate place for him to go home to as a believer.

 Bob's death was very sudden and unexpected.
I wasn't ready.
It's hard to comprehend how in the blink of an eye everything changes.

On the drive here, there's a turn-off Bob always reminded me to watch out for or I'd miss it.  I found myself nearing that place and reaching for my phone to call him to make sure I didn't screw up and take the wrong exit.  Again.  No matter where I needed to go, Bob would know how to get me there.  No matter how many times I got lost, he could get me back home.

That's when it hit me that I'll never get another Birthday call from him, or hear another stupid - er silly -  joke, or have my own personal human GPS...

No matter what your family dynamics or dysfunction - find a way to make peace, appreciate the beauty of a Charlie Brown Christmas Tree, -- and always call your family members on their birthday.

And above all else, when someone takes the time to call you and tell you a joke, no matter how many times you've heard it, or how not funny it is,  - always laugh.

"Functional dysfunction" is how I always thought of our family dynamics...

And you know what --- that's not a bad thing at all.

I'm a better person because of it.

Thank you Bob.

I love you and will miss you.

Your life mattered and you will not be forgotten.

And God, I know you'll have your hands full with Bob - so if I could give you a tip, when sitting down to play continential rummy, don't let him sit in front of you or you'll never have a chance to buy a card...

Rob - I know that you most of all have had to buckle-up on that roller-coaster more than anyone.  Watching you these past few days in the way you have done all you could to honor your Father has been a privilege. 

Bob would be so proud of you.  

As am I.

The Cruelty of COVID Quarantine

I was recently asked this question by a complete stranger to me:

How have you and your family been affected by the coronavirus situation? 

I was going to do a quick answer for them, then thought no.  I'll answer it, but in my open, honest, raw, real, completely transparent way.

I think what hit me hardest about the question, was that it was a perfect stranger to me who even asked it.

Through this whole "COVID-Quarantine-Quandry" we've been in - not one family member, church member, typical friend, or worse enemy has initiated any call, e-mail, text, or smoke signal asking that question.... Sadly that is the same story I hear from the hundreds of fellow warriors I hear from.   Outside my warrior-friend community, with a few family member & long-time friend exceptions, I can't even think of a time anyone even checked on us.  Certainly not any state agency asking what those like me need!

During our quarantine - we have been blessed by a few respite opportunities.  For that we are Thankful, Grateful, & Blessed.  The trifecta of Grandparents came so we could sneak to the beach for several days in March.   We had one respite evening at church because I sent an e-mail begging for help.  We have had a few other opportunities for Todd & I to at least go for a short walk and quick bite of dinner together because of a fellow warrior giving me the name of a guy who might be brave enough to care for Brandon!  So far he has been brave enough and we have been Thankful, Grateful, & Blessed by him and the time he allows us to go, be, do.

It's just unfortunate that the freedom of those rare opportunities is not able to be stored for use during the endless other times of no break.

Outside of that, and the Saturday respite we had through "Brandon's Bunkhouse" - we've been pretty much on our own.

I do realize that many do not even have those few reprieves we've had...

Which is why I wanted to answer that man's question with raw reality....

The reality that far too many face, and that few to none realize they're facing.

As always, it is a risk to be raw and real. 

I have had Adult Protective Services called on me for sharing the raw reality of what vaccine injury did to our son.

I've had people question my sanity and think they needed to be called because I'm in danger of doing something dangerous because surely no one could survive such horrific images and not "Do a Dorothy to their Alex".
If you don't understand that reference in italics, be thankful.

I wish I didn't.

But I assure you, I am no Dorothy.

Brandon will never be an Alex.

So before I proceed further, my disclaimer is that I am sorry if the truth of the video at the end is disturbing.  I assure you that as my son's parent, guardian, advocate - I very much believe that he would share his hell if he could.  I believe he would want the truth of his life to be told.  And so I will tell it, no matter what the risk.

My disclaimer is that while I share the raw reality and the challenging darkness it envelopes us with, the light of HOPEISM within us pierces that darkness.  Faith sustains us when solitude suffocates us.  Brandon is my Beninah.  He has taught me that I can survive being in a pit with a lion in a snowy day.  He has taught me to "Run to the Roar".  He has been my personal #NDCQ challenge coin.  About the only positive thing I can truly say while holding back a flood of tears in typing it, is that I have never admired my son so much.  As maddening as this time has been for me, it is he who has had to endure even more hardship.

He has taught me how to 'just keep marching' on our neverending journey from hell to HOPEISM.

Perhaps that is the simple answer to that man's question.

We survive anything we must, because we have no choice.

That has been the most heartbreaking thing about how we, "Team Guppy", have been affected by the coronavirus situation...

Realizing how all alone we truly are.

Realizing how little our son's life, our life, our marriage, our anything matters to anyone else.

I am not a person that gets down or depressed.

But the picture above that I took of Brandon during one of many endless days of quarantine, pretty much sums up what it must be like for him, and what it feels like for me.

I've been worn down to weariness.

I think more than any other difficulty, challenge, grueling obstacle in all this - because my heart has been truly broken.

When the corona-craziness began and we were in the Hunger Games scavenging for toilet-paper, at least Brandon still had his day program to go to.  Life was still manageable.  I could go searching for supplies and doing what I need to do in the course of a day.

Then the Day Habilitation Program closed abruptly - Group Homes could no longer transport clients to the programs, so for many, the day program staff had to go to the Group Homes.  Which meant that for parents like me who care for their loved ones in the home, there was no extra staff to still operate at the Day Program.  Which meant that the only "respite" we received, and the only "habilitation" Brandon received, was shut down.

I still cannot put into words the sucker-punch of that.

I was told it was only temporary.

Was given a date of reopening, and so that gave me a goal, something to look forward to.

The heartbreak came when after that "goal post" was moved three times - I realized we were truly alone.

The claustrophobia of that sent me into a panic attack.

It sent my husband to the emergency room for high blood pressure.

For someone as severely affected by "Life with Autism, Seizures, & a side of PANDAS" -  the quarantine and shutting down of the only help we had isn't a matter of an opportunity for quality family time at home or doing projects or hanging out.

Brandon's behavior has declined the last couple years because of PANDAS and the total lack of medical care available for him in the way we can afford.

I cannot simply "take him with me" to exercise, to the park, to a friends house, anywhere.

I never know when something will set off a flare that causes him such pain he can do nothing but scream and bite and hit and run.  There is no way I could ever handle him outside our home if something like that happens.

So we have been stuck in solitude.

Our only break from him closed down.

His only break from his prison in being able to go to his program, see his peers, have fresh wind and fresh fire in dedicated caregivers caring for him, - closed down.

The realization of that is something that has taken my breath away, and frankly I've not been able to breathe deeply since.

Calling my Texas Representative has been fruitless.

They have had issues trying to figure out who to contact about this situation for us, which is inexcusable.

The number of "me's" and "Brandon's" out there is staggering.

And no one even knows who to contact to share our struggles.

There has been absolutely no communication to us as parents from those agencies set up to help us.

No survey about our needs through this, who we can contact through this, how we can be a part of the decision-making process in the re-opening of this.

Nothing.

It has been endless days of nothing.



To add insult to injury, for the first time in forever for my husband's career - he has been given the opportunity to work from home in a new position with his company.

Finally - he can enjoy his house in peace.

Brandon had his Day Program to go to during the day, and Todd could work from home, and when his schedule allowed, he and I could go have lunch together.

In our world, it was as perfect a world as we could hope for, at least during the day.

That perfect for us world barely started when the Day Program ended.

Yet another sucker-punch.

Perhaps the ultimate one that broke my heart. 

More for what that meant for him, than me.   So much I cannot give him that he deserves because of the demands of Brandon, but at least I was so happy for him that while he has to still work, it could be in the peace and quiet of his own house.  For him to have finally been blessed with the opportunity to work from home - only to have to go to work to even be able to work because of Brandon now home every day all day - it is cruel.

My broken heart now shattered in a million pieces for what that meant for him.

I was told by my DSA, that I could hire an attendant care for Brandon in our home.

That's not what we need.

We need time in our home to enjoy our home.

My husband needs to be able to work from home.  Which means Brandon needs that attendant care outside the home.

Why?

Why are there no choices for families like ours?

Brandon needs a place to go to.

We need a place for him to go to!

As much as we need a break from Brandon, Brandon needs a break from being eternally in his home!

I need to be able to do things I need to do in our home.  This picture below is of what happens when I try to mow the yard with Brandon home.  Sweep the floor.  Mop the floor.   He gets over-stimulated by those things.  Then when I stop, he goes in full melt-down where he bites himself.  Pinches himself.  Screams endlessly.

How does having an attendant care provider in my home, solve that issue?

Those like Brandon need a place to go.  Need some way to keep their services when their parents need them most.   We cannot just yank away the only help parents like me get!

As hideous as it seems to say out loud, I am jealous of the parents who are in the opposite situation I am in.  It seems either you are like me who have had your only break from caregiving taken from you for months in the closing of the Day Programs - or you are a parent of a loved one in a group home and you haven't been able to see your loved one for months. 

What I would give to miss my son! 

What they would give to see their loved one!!!!!!

It is cruelty, that is the only word I can come up with to describe what coronavirus has done to me, to my son, to my marriage.

It takes all I have to get through each endless day, evening, night.

Even if it happens to be a fairly calm day, my adrenals are stuck in high-gear, I am unable to down-shift and relax.  I know all too well what the next moment can bring in terms of his behaviors, his screaming, his constant need for supervision.

My son isn't someone who can entertain himself with video games, television, or anything.  If I'm not looking, he's climbing something he shouldn't.  If I'm not on guard, he could have a seizure, fall, and split open something, yet again.

It is cruelty to expect a mortal human to function as if they are superhuman, and that is what this has done to many of us.  It has made us have no choice but to bear the unbearable with no breaks.

My husband comes home from work, and all I can do is run out the door.  I spend the first 2 miles walking just trying to calm my nerves from the stress of the day.   Everything in a day I need to do, errands, exercise, have a moment to myself, must be done in those few fleeting hours that I am able to flee.

Operating in shifts, we don't even eat dinner together hardly, where before, at least we had that time.

I get home after 8pm - then if Todd isn't too tired after working all day, cooking for himself, caring for Brandon while I'm gone - he goes to exercise.

Then it's time for bed to wake up and do it all again.

We barely get to talk, we are ships passing in the night and the guilt of that is crushingly cruel.

I would love to stay home and see him in the evening, cook, at least be in the same house at the same time.

But to survive, I have to escape Brandon.  His noise, his demands, him. 

To survive I must stay healthy, I have to exercise, I have to get out.

How?

How do you do all that when the only help that at least allowed you to do some of that, has been taken?

And for how much longer?

How much longer must we be 24/7 caregivers with no consistent opportunities for freedom for our son and respite for us?

Day, evening, night, weekday, weekend -- it is all one endless blur.

My heart has been broken by that.

Physically broken, I can feel it.  I feel the crushing cruelty every day.  The suffocating thought of what if his Day Program never opens?

I mean, we are #80,314 on the state waiting list for a group home - even if I decide I cannot do this any longer and need to find him a group home isn't an option any time soon!

And even if I could get him in one, do I want the risk that someone can just cut me off from checking on the well being of my son at whim?  For however long they feel like it?

I don't think I could risk that.

And that is cruelty at its cruelist.

As I said, I cannot find another word to describe what it has been like since March.

Cruel.

When?

When do we get a say?  A choice?

We are married, yet for the most part have been made to live as if we are single.

When you have someone as profoundly affected by "Life with Autism, Seizures, & a side of PANDAS" and you have had the only help taken from you - you have no choice but live life and your marriage around that huge elephant in the room.   Constant interruptions, constant distractions, constant needs to attend to.  By the time you have done all that - there is nothing left for anyone else.

That is the cruel reality of what this time has been for me.

I love my husband with all my heart, soul, & mind.  He deserves so much more than I have had the strength to give lately because of all this.  I cry myself to sleep from the cruelty of that.  It's like to survive caring for Brandon with no "return to Day Program" date in sight, I have to shut out everything else.  I guess I'm too old to multi-task anymore!  I don't know.  I just don't know.  This has thrown a definite curve-ball in our already over-PTSD'd regular chaotic lives.

To go exercise and be totally by myself sometimes causes me more stress because I feel so selfish. 

I laugh at the insanity of that.  Feeling selfish during months of 24/7 caregiving, in taking a few moments of doing something for myself.

But if I don't get out, get away, I know physically, mentally, emotionally that there's no way I'll survive.  My health will decline, I won't have the stamina to care for my son, (or lift him from seizures!), I will be no good to anyone.

I can share how I am doing through all this....

But Brandon cannot.

I just wonder what he is thinking, feeling.  I know it is hit or miss if he has a good day either at home or when he was at his Day Program - but I know for sure it has been more "miss" than "hit" since he's been stuck home.   I try my best - but I cannot be everything and everyone he needs day in and day out - all day and all night - all week and all weekend - all these months.  I simply cannot.   I try and take him places, at least driving around.  On a good day he loves to simply have the window down and the wind blowing on his face.  The problem is, I never know if it's going to be a good day or bad day.  More often than not, I have driven around a screaming, biting, pinching Brandon. I have spent more time preparing to take him to my brother's pool to swim than actual time spent there swimming because something set him off.   No good deed has gone unpunished during this difficult season.

The other day I counted 17 times.

17 times I had to rewind the Hallmark "Christmas in July" movie I attempted to watch.  That's how "fun" the quarantine has been for me.  It took the full day to watch a 2 hour movie.  There's no "catching up on reading" or "family projects" or "Netflix binges" for a family like mine.

I like to think my strongest trait is that I am mentally strong.  I can endure, persevere, survive.

I credit HOPEISM and Faith for that.

But I did find my kryptonite.  The realization, for the first time perhaps, of just how little my son's quality of life matters to society.  How little families like mine are regarded.   People will riot and protest and rally for everyone else - but not for those like Brandon, families like mine.

To have been sucker-punched by that, as I shared, has literally broken my heart.

I have a husband, another son, I have a daughter-in-love, I have a #Grandfishy, and I have a family.  I have illusions of being able to volunteer, serve, help care for my Grandson.

I'll get no time for any of that, or to be a part of their lives, if life like it has been continues.

If society, our government - continues to just take away the only help many of us even get in terms of caregiving help, Day Programs, Respite.

I can't even depend on one day finding a group home for my son if they can just shut us out from seeing him, personally seeing him, anytime they want for as long as they want.  I just couldn't do that.  My son cannot talk, he cannot "zoom" a meeting with us.   I need to see him, to see if he's safe, if he's clean, healthy, not bruised or broken from abuse.

The continual cruelty of no options.


COVID doesn't scare me.

Not for me, not for my son.

There are worse things than dying.

Like never being allowed to fully live.

Our lives before this has been a sort of prison, in how limited our opportunities are, for us as a couple, for Brandon as a severely affected adult.

What has happened, is that we've now been moved to solitary confinement.

And what scares me most is knowing that this could be the rest of our lives.

My son will not wear a mask to attend a Day Program.  He won't even wear a hat on his head!  The care he requires does not allow social distancing, not that he even understands what that terms means.  Vaccine Injury is what got us in this position in the first place, so no, we will not vaccinate for COVID or anything else to go to a Day Program or Group Home or Respite Day.  He needs dental surgery, but would have to have a COVID test to do that.  He can't tolerate a Q-tip to clean his ears; and someone in some agency or hospital thinks I'm going to allow someone to shove a swab up his nose and possibly have it puncture his brain when he does fight them and jerk suddenly from the trauma of it?

So where does this leave us?

And does anyone even care?

I guess I'll leave the answer to the question I was asked with the below video.

What caused him to do this?

I have no idea.  Maybe he was frustrated from being stuck at home, maybe he was in pain from PANDAS, maybe he was over-stimulated from me mopping the floor or mowing the yard earlier.

I don't know.

All I know is that this video is a representation of what our endless days at home have been like.  Trying to do our best to make it a good day for him, trying to survive the stress of when it's not such a good day for him.

Listen to the very end after the brief moments of silence.

That is perhaps my best answer that describes how this coronavirus situation has affected me.

I just....want to scream.

For the cruelty of all this precious son I love with everything I have must endure daily, for the cruelty of how this has made it even harder than it already was to have a marriage, for the cruelty of having nowhere for our son to go outside his four walls so Todd & I can have a break, for the cruelty of always having to be a beggar begging for a break, for the cruelty of not getting to be a part of my #Grandfishy's life, for the cruelty of it all.

Click video for "The Sound of Autism"

I suppose the epilogue of this is that I know Team Guppy will survive this time.

We may have to flee to Mars or some planet where there aren't quarantine-loving, mask-wearing germophobes who worship the vaccine gods.

But we will survive.

Life has been tough lately.

But Team Guppy is TOUGHER.

#NDCQ

On being "Locked in Love" ...

No, today wasn't Valentine's Day -- but thanks to a great group of "Brandon's Bunkhouse" volunteers and our church for allowing them the use of the JOY Ministry - we were able to have our "Locked in Love" Valentine's Day getaway today...

When I found out that we were to have this opportunity in February - I thought of what we could do in celebration of Valentine's Day...

A few weeks ago when Todd's parents and my mom were here visiting to help Todd with Brandon while I went to spend my Grandfishy's 1st Birthday with him in Cali - Todd & I were able to do a few quick outings together before I left...

One of them was walking the Buffalo Bayou in downtown Houston...

And on a pedestrian bridge there, we saw a "Love Locks" bridge.

Hundreds of padlocks locked to the fencing on the sides of the bridge as a display of love...

Every kind, color, shape of lock - all with names engraved or simply written on there with a sharpie!

I knew I wanted Team Guppy to do that!

So once back home, I searched for just the right locks to order to represent us and our....unique name!

As you can see in the picture - I think I did good.....
(smile)

I loved this fish for what I had planned because well, it's a fish, and so are we, but also because the tail reminds me of my daughter-in-love, Tiffany.  It looks like a Mermaid tail, and Tiff does love Mermaids!  It represents her and Matt in this project perfectly to me - how a Mermaid fell in love with a fish....

(Someone should write a book about that...)

Now I know that the "Love Locks Bridge" that is most famous, is the one in Paris.  Locals & tourists have locked so many "Love Locks" on that bridge that they finally had to take it down because it was crumbling under the weight of all the metal.

Something about reading that made me snicker.  Warrior moms of "Life with Autism, Seizures, & a side of PANDAS" bear a weight so much greater - but crumbling is simply not an option.  For us, removing the weight in finding a way to heal our son of all that weighs him down (and us) hasn't been in our cards yet either......

But I digress.

No, it's not the Paris Love Locks Bridge I was thinking about when I had the thought to do this for Team Guppy, it was the bridge in Serbia, and I'll get back to that story in a minute.

Or two.

Call it the affects of "Life with Autism, Seizures, & a side of PANDAS" - but I didn't do one aspect of this project - and that is because I forgot the most important aspect of all...  Brandon.  In my mad-dash to sprint out of the house to drop Brandon off for the respite day, I didn't notice I was missing his lock.  His lock, the one pictured below, is the lock that holds us all together in HOPEISM.  Not that he is greater than God, but that his life locks us to God.  To the unconditional love of God.  To the Faith, HOPEISM, & Love of God.  To the Grace & Mercy of God!

Brandon's lock is the only red one on purpose.

The date inscribed on Brandon's lock - Valentine's Day - is the date Todd & I appeared before a Judge in Harris County to pledge our legal love for him in being his Guardians.   We never planned for that to be the date, when we were going through the guardianship process - that is the court date we were given.  I smile at God at that each year....  Because each year on Valentine's Day we have to renew the guardianship papers, and once again renew our unconditional love and fierce advocacy for and protection of our son.  To us, there is simply no better way to be reminded of what love truly means than that! 

When we signed those papers and swore on that Bible to be he guardians, we locked that lock and threw away the key.   We pledged to Never Quit on Brandon - and that is why I put the "NDCQ" on his lock.  We are not dead and we cannot quit on him.  On us.  We are a team.  Team Guppy.

After we locked us all to the fish in sybolism of "Team Guppy" - I was going to have Todd & I toss the keys in the bayou under the bridge....

But alas - that will be the next respite trip to complete the project....

It may seem like a silly thing, this Love Locks project - but as I thought about doing this, and researched the origin of it, it fit our life...

To me anyway...

There is a poem written about the story behind the bridge.  I have included the English translation at the end of this, right under the picture of the original Love Locks bridge in Serbia...

The story that inspired the poem, is about the legend of Nada, a school mistress who would meet her lover who was an army officer named Relja - on the bridge where they pledged their love in the days before World War I.  Relja went on to fight in the war, and while there he found a new love and married her.

Nada is said to have died of a broken heart....

Though that is not the story of Todd and I - it does bear an eerie resemblance to the heartache we feel each and every day that Autism, Seizures, & PANDAS steals from us.  How we fell totally, completely, irrevocably in love with Brandon when he was born - only to have his ability to reciprocate that love, or even say "I love you" to us ever since the part of him that allows him to even know such love was ripped from him - and us.  "Vaccination" has been the war that stole him from us.  Never to return.  Not yet anyway...   The reality of that breaks our heart over and over, each and every day.  Reading the poem was so haunting.  Yet so beautiful.  Much like my beloved Brandon who I shall never stop longing for.......

From heartache to HOPEISM is perhaps what they should have titled the legend of the Lock Bridge...

Because the HOPEISM found in the story - is again the HOPEISM I find in my life.

As fairytales are known for - this story too has a happy ending...

Nada's tale of grief inspired young couples determined not to abandon one another to begin writing their names on padlocks and chaining them to the fence of the bridge where Nada & Relja swore their love to each other.  Serbian couples would then toss the keys in the river below...

Their love for each other would never be unlocked.

Nor will ours.
Team Guppy 1.0, 2.0, & 3.0

(If you are ever in downtown Houston at Buffalo Bayou, go to the Rosemont Bridge and look for us!)

In so many ways the "Love Locks" story has touched me deeply.  Perhaps I'm sure for the very tragic nature of its beginning...  It is very much like our journey from hell to HOPEISM.  A journey of love, tragedy, and HOPEISM.

Though I would have liked our journey with these locks to be to the bridge below in Serbia where the tradition began - much like Nada & Relja - it is not to be.  For us, it will most likely never come to pass to be able to travel to such faraway places to take part in such fairytale adventures.

But on this Valentine's Day respite, thanks to the love of some very faithful servants at our church, we did get to make this journey today.
The ash of our isolation ignited into the passion of adventure.

Thanks to some amazing people in our life, in our church.

We are Thankful, Grateful, & Blessed.

The original Love Lock Bridge in Vrnjacka Banja Serbia

Pray for Love

by Desanka Maksimovic, Serb poet

Fast like short lasting flower petals

That in love will start to crumble and smash together

Thirsty for a forgotten dark whirlpool

Oh god others beg for happiness and peace

But me I will remember in my heart. And hold,

Yesterday like a tussock

I will close my sad soul like gold in a chest,

And make it a temple of love.

My soul does not pray for happiness, past joy, or

The belief she asked from me

Upon this terrible day, like a ship wreck,

It needs to be saved

Without help you’re withering fast

Like a poppy in ripe grain and flax

Oh god I’m not praying for happiness, joy, or relishment

I’m afraid this pain won’t die;

Like the holy ignited fire inside of me

But suddenly it dies and becomes ash

Although overnight I fear it will ignite again into passion

A Miracle in the Midst of Mayhem...

I thought about titling this "Sunshine under our Umbrella" - as that seems appropriate too...

But in light of Easter that is fast approaching - I thought I would go for something a bit more spiritual.

This picture taken by Brandon's caretaker at his Day Program pretty much sums up this "Autism Awareness Month" of April.

I'm mesmerized by the picture really.

Couldn't be more perfect.

The shirt...

The smile...

The scars.......

His eyes - bleary & bloodshot - say everything there is to say about the bravery of his struggles of late.

The fresh wound - not from a seizure fall - but from a fall from being so wobbly and weak from having the flu and bronchitis back-to-back.

I'm not sure why so many injuries must happen to his precious face.  Why so many times he has broken off a front tooth.

I guess it's satan's way of mocking us.  He can't pierce our spirit, or Brandon's, so instead he goes for the smile, the scars. 

Speaking of scars -

Our PTSD scar has been ripped open of late.

Our second major PANS attack sucker-punched us all in the gut - ripping open the scar from the first PANS attack and leaving us once again to bleed profusely.

We felt like cornered animals - scared and lashing out at the injustice our "Life with Autism, Seizures, & a side of PANDAS" gives to us.

Our emotions were raw and real in an indescribable kind of way.

It's hard to put into words the emotional rock bottom feelings we've had.

The thoughts that crept into our minds in the depth and darkness of our PANDAS-pit.

It felt like a slow, painful, emotional drowning.

And Brandon being non-verbal - I suppose the gnashing of the skin on his hands barely scratched the surface of what hell his brain-on-fire was going through.

Much like Jesus did at the injustice happening in the temple - I wept.

To watch what vaccine injury does over and over to our innocent son is an unbearable pain.

Most definitely worse than measles.

Or autism.

(cue sarcasm)

I can't help but put each of our suffering in the perspective of Jesus' journey to the cross.

Perhaps that's why this picture mesmerizes me in such a spiritual way.

I see Jesus' suffering in Brandon's eyes.

Those Beaten, Bloody, Bloodshot eyes not by a person - but by vaccine injury.

I feel Mary's helplessness in my soul.

This picture --

Eyes that still manage to sparkle through such suffering colliding with a smile that silently speaks of such supernatural survival.

I look at that picture and feel such shame.

Such shameful thoughts I have had in the bone-tired traumatic delirium of being scared to death of having to go through what we had yet again gone through - for the rest of our lives...

It's just too much to endure for as long as we must.

Every grumble uttered by him making me want to run and hide in a fetal position lest it's another attack.

It's unfathomable what this severity of vaccine injury puts you through.

We warriors are tough.

We have no choice.

But even the toughest among us sometimes take a knee.

If only for a moment.

Each thing we go through leaves a scar.  We become more resilient.  But then each time the wound is reopened as in another PANDAS attack - that scab is ripped off and the blood gushes again - and we are left to pick up the pieces of our PTSD in utter numbness until it scabs over again.

That's the best way I can describe my now.

Numb.

Scared.

Heartbroken for my son.

Some people drunk-dial an ex-boyfriend.

Last week, very much sober, I called group homes to see if someone could take my son if just for a weekend.

We needed time to heal.

Time away to once again think of  our son as the brave warrior is he in that picture.

And not the rabid-dog-behavior that the PANDAS-attack turns him into.

Such a horrible way to describe it.

But it's true.

When in that state, Brandon is not Brandon.

And it is horrific to witness such pain and agony he must be feeling in the autoimmune malfunction brought on by something as tiny as a piece of pollen, bacteria, virus....

But alas - there was no where to turn for such help in such desperation.

There is no appropriate help for those like us.

For the vaccine-injured like Brandon.

But as HOPEISM (and Psalms 30:5) would have it - "Joy" does come in the morning.

Perhaps for us not all mornings - but at least some mornings!

During this time - Brandon has had the miracle of being 30 days seizure-free.

We haven't been 30 days seizure-free in gosh - at least the last four years!

I have to laugh the laugh of a lunatic relishing in insanity - in asking the heavens why....

Why couldn't we have had these last thirty seizure-free days with a "typical" Brandon free from the flu, bronchitis, PANDAS, so that he could have gained back precious pounds that seizures have stolen?

But alas we have learned just how futile those questions are.

In the words of Max Lucado, I must stay away from those "briars and brambles" that threaten to snare me and instead simply "reach out for the pierced hand that is extended to me from the fog."

I don't know that in the storm that is our vaccine injured "Life with Autism, Seizures, & a side of PANDAS" that we will ever not need our umbrella, but I am ever so Thankful, Grateful, & Blessed for those times the sun shines under it.

- notes of encouragement from fellow warriors

- an unexpected grant for a month's worth of medical marijuana

- a card in the mail from a care group at church

- Grandparents coming to care for their Grandson so that we could travel to go see ours

- Thirty days seizure-free...

A Miracle in the Midst of our Mayhem

 HOPEISM in our journey through hell.

-------

On the Edge of Crazy yet not too far from Sane,

Michelle M. Guppy