On being forged into a warrior mom

If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!

This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.

Some days the HOPEISM in that simply takes my breath away.

July 17, 2011

The Reality of Seizures.

This blog entry is not for everyone.  It's not a rant.  It's not a plea for pity.  It is not meant to be disrespectful to any Epilepsy organization, nor any Public Service Announcement type project.  I applaud efforts of all to truly try and make a difference. This is merely my own view.  My own honesty.  My own reality check in "Life with Autism....and Seizures".

Reality that today hit me in how it's so distorted. So commercialized. So watered down.  Much like Christianity. True Christianity is Bible-based and non-disputable. Yet all around me it's disputed. It's distorted. As is morality. True American morals and values of being honest, self-respecting, non-murdering, non-lying, non-cheating morality. Watered down. Defended. Acquitted.  I also see "awareness" in the Autism and Epilepsy world I live in, as something everyone is "so aware of" that it's cute. It's popular. It's a money-maker more than a research-funder.  It's rarely portrayed as a crisis because I guess to show the true reality and true crisis, it would be too horrible, no one would want to watch it.

Try living it.

I guess cute sells. Reality doesn't.  One needs to look no further than a magazine cover to see that.  To this day, and for everyday always, I will respect Kathie Lee Gifford and Hoda for doing their morning segment one day with no makeup.  For that one morning, I felt TV got it right.  Really right.  I'm longing for the day awareness campaigns get it right as well.

Click here to see segment.

Which brings me to this "seizure first aid" video. A very good project, very factual.  Please click on the link, watch it listening carefully, then we'll continue....

Click here to view seizure first aid video.

I guess my issue with awareness programs like that, is that they're not real.  They may be real people, that may represent what a seizure could look like for some, but it's too cute.  It's too watered down.  It's the typical Today Show hostess portrayal.  And not the "no make up day" portrayal of Kathie Lee and Hoda.

I truly feel there's a disservice done in not portraying reality.  I will get negativity from this, and that's ok.  It's never stopped me before, and I doubt it will make me edit a thing here.  People will judge me in showing my son like this, and that's ok too. My reply is simply that reality will help my son, being politically correct won't. Showing seizures that are not too bad to watch, will not help those like me who simply cannot endure watching another real one. But must.

And before you watch the below video of one of my son's real seizures, I want to point out a few things from the PSA video above.

1)  Stay Calm. When you watch the video of my son having this seizure, think about how calm I'm feeling as I see those sometimes daily, sometimes multiple times daily - seizures.  Staying calm is what you do while waiting in traffic. Not something you do when your child is choking, thrashing, turning blue, and there is not a thing you can do to stop it.  My son has had seizures for years. Watching that PSA would make one think I could watch my son's without blinking an eye. As if I was sitting down having tea with a friend.  No.  That's not reality.  Reality is that each one is still the first. Reality is that I cry and beg and plead with God to make them stop, and just know that this one will be the last. So remain calm?  No, I can't say that I've ever done that despite how seasoned I am at watchign them.

2)  Make sure nothing can harm them.
Look at this picture of the hole in my son's bedroom wall.  There is no way you can make sure nothing will harm them.  Seizures happen anytime, anywhere.  To think that you can have a safe environment for seizures is not reality.  No, the reality is that where there are seizures, there will most likely be harm.  This hole in the wall perfectly fits around Brandon's head.  He was standing up, a seizure hit, and knocked him in the wall as he was fallling down.

3)   Turn their head so they won't choke, is what the video says to do.  I think when you watch my video, you will see how well that works.  No matter where I turn his head, or if I can only raise it because he's thrashing too hard to turn him, he chokes.

4)  Time the seizure. The only thing you have time to do unless you are wearing a watch, is count how many years of your life are slipping away by having to watch your child go through that.

5)  And their ending statement "...now you know that making sure someone who is having a seizure stays safe is really not a big deal..."

Watch this video now, and then we'll continue on.


Did that seem like not a big deal to you?  Did his expression make you feel that simply being aware of what to do for seizures is "no big deal"?  Did that seem simple to you?  Do seizures seem like "common sense" to you now?  Did that look anything like the cute video you watched first?

Did you notice that there wasn't a "circle of friends" around me to help? No. Because most often I'm all alone when he has one. In the early morning after Todd has gone to work and I have to find a way to get an adult-sized child off a hard floor into a soft bed. I must find a neighbor who is home or call my son from school to help me get him out of the tub because I can't bear to just leave him there until he's able to stand on his own.

What you didn't see in that video, is that he fell backward hitting his head on that tile before I could get to him. What you didn't hear after I stopped that video to help him better, is that for five minutes after it he was choking, gasping for air, trying to catch his breath, - yes, from choking on his saliva despite his head being raised during the seizure.

Reality: I started recording seizures after a Neurologist told me that because they could never capture one on an EEG, that he might not really be having any, it might be simply "behavior".  He's doing that on purpose. Did he look like he was doing that on purpose to you?

.  It's been over a decade since my son's first seizure, and I know nothing more about the cause or treatment of them now, than I did then.

 Seizures are deadly. My son has nearly died from one because he fell backward under a sprinkler and nearly drowned by the water spraying in his mouth before we found him. CPR and God saying it wasn't his time - prevented that.

 Is that I feel there is no urgency about them. If they were the flu, something that is truly something to stay calm about, then there would be a fast-tracked vaccine to prevent them.  Lucky for me though, it was most likely a vaccine that caused them in the first place.

Reality:  I'm tired of living in air-brushed-awareness-world of Autism and Seizures that is cute and popular.

Reality:  If as much time, money, effort, intelligence was put into solving existing medical issues like autism and seizures, as was put toward creating more medical problems by making more vaccinations, -- my son's autism, and seizures, would be cured. Or at the very least better controlled, better treated.

Reality:  I'm tired of staying calm.

Reality:  My son deserves for there to be an outright riot to help him.

Question:  Where's the PSA for that?


Desperate For Respite said...

Thank you! Finally! A video that isn't edited or shot from a distance, perfectly - a real, raw and yes, horrifying few moments that last too long.
Kudos for your bravery to step out on that edge...if nothing else to bring a REAL and VIVID picture of the REAL CRISIS.
God bless your heart!
Tonya Frye

Desperate For Respite said...

Thank you Michelle! For stepping out bravely on that ledge to SHOW the truth, the raw, real and yes, horrifying crisis. Those few moments that always keep us holding our own breaths. God bless your heart! THANK YOU!
Tonya Frye

Anonymous said...

Thanks Michelle for being Real and Raw with your reality and emotions. I hope this blog and many of your others will make it to the land of TV and magazines so more people will feel the Realness of Autism and Seizures. Way to Go! You have a voice that must be heard!

Loren Marvin said...

I am speechless Michelle!! My heart cries for Brandon and your family. Thank you for allowing us to share an atom of your reality.

Rafael A. Ruiz said...

Michelle, Awesome! Your comparisons were right on!

Bessy said...

I have to agree with every word you said!! I pray that your son may get some real help some day very soon!!

Anonymous said...

Thank you Michelle for getting it right. I strongly believe our children will not get them help and acceptance they need until the truth is known. I am also sick of the cutesy publicity that autism gets. Another area in addition to the seizures that has not been openly discussed is the poop and isolation most families deal with on a daily basis. I say where is the reality TV for autism? Why not, they have a relativity show for everything else. The Jersey Shore is a pointless show of young adults doing nothing with their lives. I just recently heard that they are starting a reality show on military families who have been touched by the war. Please don't get me wrong, I am very grateful for their dedication to our country and our freedom, but these soldiers also chose to enlist in the service and knew the risk.

Why can't we spotlight the reality of autism? It's not like we willingly signed up for autism. We were simply doing what we thought was right to protect our children. So I ask why can't TACA, Generation Rescue or Jenny McCarthy create a reality TV that spotlights the real autism and the struggles that we face on a daily basis. I feel that this is the only way we will be able to find help and acceptance for our children. I believe that most people who don't know autism think that it is like Temple Grandin or the child who plays the high functioning autistic on the TV show Parenthood. I am also tired of this Cutesy Autism Champaign.


jen said...

My heart goes out to you and your family. I struggle with my son on a daily basis and he's only got mild autism, I can't imagine the strength that you have. You truely are super mom and don't you ever forget it!

jen said...

My heart goes out to you and your family.

John H. said...

Nice....we too live with Autism and Seizures, while my son's are under control at the moment with meds we have to be ever aware that the next one could happen at any time and another cluster could start. Like you we are calm during but not so much after, I also agree that not enough attention has been given to this co-morbid condition. I applaud your blog well done.