Whose Timing

Following Tonic Clonic Seizure and CPR

I wasn't sure after the beginning of this nightmare if I was ready- really ready for Heaven as my mind, body, spirit felt- or if it is an amazing trick of the brain. Either way, the second part of the beginning of this nightmare was completely held in Christ's hands. As we're all other parts, but this particular part had no fight with Satan in it.... Even during the fact my body was completely shutting down.

I will never know how to explain this. I am still trying to explain it to family so I can hear myself explain it to me. Most everyone knows my crazy history. Fearless Heather. Epileptic Heather. 3 brain surgery Heather- excited to have them. Extreme body pain Heather from the 3rd brain surgery. Artist Heather. Many hats, many others. But I am one in a million stressed, one in a billion worried Heather, just how my brain is mapped out. But I went into a total uncontrollable freak out session over my brain just totally jumbled. Unable to speak, to explain. 

My brain started to "closing time" around 2pm in our pool with my daughter. Just all of a sudden everything she was saying was so very slow, like she was high. So I was so confused if it was my brain or her. Cause she doesn't do bad things, my brain flips though. Never like this. So I text my husband a million times to get out there to see that ASAP so I could find out. I also text my brother to come out as well. I needed people to study and tell me if somehow Tory was truly a teenager acting up, or if my brain was going down, like I thought. And as I was in the pool.

They came out. Christian came in. Immediately her odd actions stopped, but I looked up to my brother and he was trying to explain to me what I text to him and nothing was making sense, then no one. The this awful worry tone and cry started as I turned to my husband screeching "I have to get out, I have to get out!!!" I crawled out, then all over the patio saying things that made zero sense. I would grab my brothers leg, then aggressively crawl away howling for help. I was up against our wall bawling as my breathe was leaving. My husband and brother held me asking me questions. I couldn't talk. Understood a portion of their words-when they were saying to take you to the ER I freaked our making a loud high pitch noise from my throat while spinning my left hand round and round hoping they'd unsterdand siren for ambulance. They called 911.

I fell into my brothers lap as my husband talked with 911. I thought I was speaking soft, calm, logical words to him. As my body was shutting down my mind, heart, soul knew where I was going. I was at such peace. My brother kept holding tight and so worried. I kept "speaking" to him. Telling him how special he has always been to me, how much he has coming in life yet, my life was complete having him along our ride. I then wanted my baby Tory by me and I explained to her in my jibberish language how my life change the moment I knew about her to come in my life, how strong she made me, how much she had to live for in the way her heart wishes, and I love her always. I felt two tears drop on my right arm from brother-to me it felt like he was confirming he understands, he is with me and Jesus, he will be ok. I was at peace as my heart slowed down and I stopped breathing. I was looking at the beauty of love in family and preparing to enter Heaven when all of a sudden I woke up, heart started. As I opened my eyes to my precious husband giving me mouth to mouth. I was so touch, amazing yet confused and almost saddened my "Home" was not going to be pain, seizure, illness free in Heaven. I was going to have a harder fight.

Right now, still no one has a positive on what caused all of this. No one knows if these convulsions are completely done, or just temporarily calmed from an injection I had to have today.

I've had over 30 convulsions a day and some awful endless post ictal status. Couldn't speak forever. Some seizures would paralyze my legs and arms completely. Alter focus ability. Just wild ride. We are still figuring everything out and praying the hours it stayed away after an injection today, that it has just ended. 

I mostly pray my babies all come out un damaged from all of this. My friends and family just have beautiful hearts, and I know Jesus hears you all to be able to keep afloat.

I know we each have our timing in life from God. So I'll never know if I was supposed to go to Heaven Saturday but human power got in the way. Or if he gave us these brain to know to do things to keep our loved ones as long as we know how thru His guidance until His true time comes. I don't know, but as tragic as it all seems, that early on part still blows me away when I think of it-just amazed me.

Love you Christian, Tory, Troy, Mom, Dad, Steward, Linda, Grams and on and on all family and amazing friends..... Blessed I am.

In His Love,

Heather (Hetty) Siebens

Acts 1:7

He said to them, "It is not for you to know times or seasons that the father has fixed by his own authority."

Ecclesiastes 3:2

A time to be born, and a time to die; a time to plant, and a time to pluck up what is planted.

Job 14:5

You have decided the length of our lives.

You know how many months we will live,

And we are not given a minute longer.

Close to my 5 yr Anniversary of 3rd AWAKE brain surgery

Very Painful 1st day 24 hours after the in depth grids were placed in.
Trying to smile to show my love to all!

WIRED UP from Hetty Siebens on Vimeo.

All Smiles

I had an amazing appointment with my awesome neurologist Dr. Joseph F. Drazkowski at Mayo Hospital here in Phoenix, AZ. I was able to walk in with such cheer and smiles… which comforted HIM BIG-after we hugged he was able to sit down in relief!! Relief of no seizures this time!! No awful side effects or loss of sight or memory etc. It is honestly amazing how much the doctors heart truly is in it for the patients as well-which we always need to remember. I have seen this awesome neurologist for over 8 years, been thru so many “answers” together, that didn’t fall thru-yet we kept pushing forward, as Drazkowski knew we’d find an answer! He always had great positivity, and I am ever so grateful!!

We were able to share stories of what was going on in the eight weeks of recovery for me. What all I was doing. How quick I recovered. How exciting this is. Compared it to the 2 prior resections, in amazement!! We shared time with family during holidays- (which is always a fun story!!) He loves to see if I do make it thru family SEIZURE FREE!! We all know that can be stressful!!! I sure do!! It was great talks of past times I was so thankful for- Jesus guiding me to call him the night I overdosed so much I shouldn’t be here. He very much took care of that. This is one neurologist that truly never gives up on anything. Which is why when Obamacare begins to light up, and will show any change in seeing him, or his pay-anything… my blood begins to boil!!

So to end our talk about that… Obamacare-and how all the docs at Mayo would like him to kindly change his mind and focus on happiness of foreign countries or getting oil prices back down, whatever… he had to show me one of the new annoying implemented papers for it…. AT EVERY APPOINTMENT I am supposed to sign this paper that yaps about how many times the doc washed his hands-TWICE, answered questions, had on jacket- etc…. etc.. Even have a nurse that scopes the floors to interrupt and ask herself to double-check, like a cold call. Just thought this was ridiculous! People know how to call Patient Care, and my neurologist took care of me with one complaint I had about the doc prior him one time two years ago!! This is childish.

I have grown up… haven’t you? More paper, more trees, more trash. God only knows what this will do with the Obamacare even more.

Either which way, without it fully in control, last Tuesday, I had a marvelous follow-up with my neurologist Dr. Drazkowksi, who means the world in neurology, psychology, and care to me. I will not gamble that!! The White House looks like they need repetitive letters!!

Blessings all!! Pray you all are well!! Those who aren’t– Mayo is amazing!!!

In His Love,

Heather Siebens  @AliveinMe  @EpilepsyCures

http://www.twitter.com/AliveinMe

http://www.twitter.com/EpilepsyCures

http://www.youtube.com/Hetty4Christ

http://hiswill4me.blogspot.com

http://manyepilepsycures.blogspot.com

http://www.causes.com/epilepsycures

Heather's Journey - Day 7

It's Superbowl Sunday! Not that Heather could care less...but I think there is some symbolism and irony in today. Congratulations to the Saints for winning their first Superbowl...job well done.
As exciting as the Super Bowl is I know there are many more important things in life than football. As Heather sits in her hospital bed she continues to remain upbeat about her present situation and positive about her future. Last night was a difficult night..so much so that Heather now has a dedicated nurse on call 24/7 for her pain issues. The Dr's want to help control her pain so they can begin to analyze her brain activity. Nothing further can be done until she has more seizure activity so a surgical gameplan can be developed. So as difficult as this is to write..please pray for seizures. Pray that they will identify the exact location that can be removed and pray that section is resectable without negative effects for Heather. With God all things are possible...we are confident in that.
As I was watching the Superbowl tonight..I contemplated about what a "Saint" really means...According to Websters Dictionary a "saint" is: "A person of great holiness". Although many of us have "holy" moments... The only person I know who of great holiness was Jesus Christ. As earthly sinners we are far from saints...however, through the amazing power, grace and mercy of our Lord we have the ability to put on Christ and be His hands and feet on this side of heaven. Our "gameplan" should be that of a saint. I know neither Heather nor I are a saint..boy do we have stories...:), but it is our goal to be more "saint-like" and that is only possible through the power of our Lord. Saints also usually have to go through pain and suffering in their life. Jesus said we must "take up our cross daily and follow Him"..Heather talks about the Apostle Paul and the fact that he had a "thorn" that he had to deal with daily in his life. That "thorn" is never really identified..but despite his thorn, he impacted the world for his Savior. Heather wants to be a Paul...and she is willing to live with a thorn if that is the will of God.
I know that Heather truly appreciates the amazing encouragement and outpouring of love from so many across the world. Please continue your encouragement. It means the world to both Heather and I...But also please join us in playing the game...develop your gameplan...join the team and do your best to become a saint. Individually we can make some good plays, but together we can win the SuperBowl!


Until tomorrow...Blessings from Heather and I. We love you.

Heather's Journey - Day 1

Heather has been in the hospital for 24 hours...and the journey continues. I will do my best to summarize the events and my thoughts for each day.


Day 1 - Feb 1, 2010


She was in great spirits heading into the hospital..In usual Heather fashion her sense of humor was strong about the entire situation and she appeared to have zero concern over the events to unfold. She is a strong woman..with a strong faith. I admire her so...
The surgery was scheduled for 3 hours with Dr. Zimmerman. The same Dr. that has performed her other two surgeries. I left her side at 10:00am and she was off with a smile. Her father joined me in the waiting area for a couple of hours and he was able to get my mind off of the things unfolding for Heather. I tried to do my best to keep all of you updated via my iTouch...I hope it made sense. This was the first time I have ever used this device. :) I am not quite as 'techy" as my wife..I guess I am just too old. :) I was finally called into a conference with Dr. Zimmerman around 3:00pm. His first words were..."It didn't go as well as I would have hoped". Not a good way to start the conversation. Apparently he had a difficult time dealing with the scarring from the previous surgery's. He wanted to insert 4 grids in her temporal and frontal lobes..but was only able to complete 3 of the 4. The Dura around the surface of the brain at her last surgical site would not separate from the brain itself..he told me he attempted to separate this for sometime..but gave up when it became clear he could cause permanent damage to the brain. He "hoped" he had not caused any damage in this process...but that was unclear since she was still recovering from surgery and not coherent yet. He left the meeting to go back to her and conduct some post op tests.
I must say the next 3 hours were painful as I pondered if her brain functions were damaged in anyway and if the lack of inserting all the grids would affect their ability to do the "true" surgery later in this journey. Finally i was able to see her around 5;30pm..which lifted a weight off my shoulders. She looked great. Minimal bruising..just a bit puffy..all her senses seemed to be working with the exception of speaking..however, I believe that was more due to the sore throat she has from the operation breathing tube than anything else.


Now that I have been with her all night..she is speaking fine..in pain..but it appears there was no damage done in surgery. Her pain meds are only lasting about an hour and her left ankle is hurting for some reason...other than that her vitals appear good. I am being told that by the end of today she would be moved from ICU and into a room on the neurological floor of the hospital.


I stand amazed at the incredible outpouring of love, concern and prayers for Heather and our family from each of you. Our faith is strong and I know the perfect will of Jesus will be glorified thru this journey...however, having the love of so many sure helps us draw continued strength.


On behalf of Heather, myself and Tory...may God Bless each of you.
In His Grip,
Christian Siebens @flyingchristian for @AliveinMe / @EpilepsyCures