8/27/15

My Precious Angel

My Precious Angel- Tory 


My daughter- a very special gift from God. One that was going to learn quickly and deeply about Jesus as I started to go to church when she was two. She soaked that up and shared all she knew with everyone she'd be with. "Did you know that Jesus died on the Cross for you?" It was beautiful... yet I hadn't accepted Him yet, so I was a bit mortified!! She has breezed thru all my illnesses and medical complications knowing God has a major purpose for me-one big one is being her mommy! And I am so grateful she views that. And is thrilled to tell kids what my brain has gone thru! My amazing girl just keeps growing-now has her own horses. Responsibility. Awesome child of God.
Blessed Christian and I forever.
I cannot express how much I love this angel -my precious daughter from Jesus to me! For all her amazing parts and pieces- I give God all the Glory, Honor and praise... for she has had a heart for comforting others way before any normal creature. She missed her mommy, me, whom was in the hospital for a week for my 1st brain surgery in 2002 when she was barely over 1... I was in SO MUCH PAIN.... but somehow, this princess knew not to hug hard-as she ran toward me to hug me, she halted, rested her left hand on my right leg, as she look up high to my wrapped head and swollen face and black/red swollen eye-she paused then just gently and slowly wrapped her arms around my legs to show her how much love she has for me-and I swear, even before she and I had started to go to church, that God was in her and she had some sort of 1 year old prayer going on... Tory Moriah Siebens is a very special gift to me, that I never could thank Jesus enough for... This picture is from her and I just yapping at each other from last night, about so many subjects. We've been thru so much together- and she and I are worth every trial... Hug your kiddos, they are the best gift and blessing God can give an awesome married couple. We are so blessed.... I am so grateful-- that He chose who would be the not only perfect husband,Christian C Siebens for me, but that Christian would be Tory’s perfect daddy at a young age- young enough to only see him as daddy, young enough to not realize that her biological beat me while she slept soundly in her room the first night we were in our apartment in Killeen, TX. Last time we were all together ever as a family. She never saw my ex as dad- he was gone figuring out his life most of the time. So his beating me, my pill popping then search for Christ was the most amazing intervene with zero regrets. She has a real family. We can throw humor out about the biological here and there- but mostly, he just has dissipated on his own choice. Which was good for her seizures that went away, self esteem, schooling. She is my Tory.
She has bloomed so much past all my brain surgeries and screw and plate removals, hospitalizations, etc. She is one strong, loving, caring baby girl thru it all. She has a very tender heart. I wouldn’t change anything in the world that ever began all my seizures going nuts- cause if I did, I wouldn’t be blessed with her.

I have major down days- hit with pain in the head and neck I’ll never be able to explain but horrendous … but she gets it all. And still is so gentle and loving with me, yet has such a blast with her friends. Understands my limits, never throws a fit. Yet we also have her perfect dad, my husband who has been here thru everything and there for everything. She IS his kid. His teen. Some days thru my sick days I get so jealous. But others I just thank God for the perfect match- I couldn’t imagine life any different. They are my one in all!

I truly thank God for my angel…. we’ve been thru so much, her watching me convulse for hours so young, divorce she didn’t get, brain surgeries 1,2,3… moving so many times due to my health. She is yet such a bubbly daughter I thank Jesus for. Most would throw tempers… she just throws love. I don’t know what else to do but praise You Jesus. She is a work of art from YOU for Christian and I. Thank YOU!

You are endlessly loved Tory, even as you grow. Your maturity amazes me. Your heart reminds me so much of this one person I know really well. You are my angel, yesterday, today, forever.

I love you Tory….

Your Mommy,

Mom

Hetty/Heather Siebens
To God be the Glory Honor Praise!!!


You and I Won Baby Girl from Hetty Siebens on Vimeo.

8/22/15

Out of Control trying to Come to Control

                                    

This is the man, the doc, the neurologist at Mayo Hospital in Phoenix AZ....HE is an Epileptologist, Professor at Mayo, high ranked not just by me, but so many others. He is a son of 6, Husband, father to one beautiful daughter. He also loves to ride very nice motorcycles, and has an array quite a few. He is a very deeply caring doctor... Never wants to throw the towel in, no matter how complicated neurology is. Yet he is so loving and compassionate and fights for your rights. Not many neuros in this works like that. In fact they strain to take your drivers license away more than fight for you to have one. He is all about your quality of life being positive, or your seizure will go out of whack, and more.

I've been his patient since February 20, 2002 at 2:00 pm. Man when I first saw him, he looked rough like I had a lot to answer or have him to set me straight. No. He is very funny and as many on the 5th floor have named him, a teddy bear, very gentle and caring to all. 

I have been living this neck, head, forehead, eyes, nose bridridge, ears all killing me pain, off and on for months- it just exceeded worse today and even my eyesight is off- and I went to the ER here in FL to hopefully alleviate pain. It wasn't going far, nor were my calls to this neuro at the Mayo here in FL. Out of the blue, While crying in pain at the Mayo  here I just think is in la la land here in Jacksonville, FL....I got a call from my lifetime neurologist at the Mayo in Phoenix. Says if I can clear my schedule he'll set up all tests to figure out what to do. Cause I can't go on like this. I'm sure trying, miserably failing. 

I truly thank God for placing Drazkowski in my life. I wouldn't be alive today had he not been. He was a pusher for me in my over dosing days, after my ex beat me, to keep seeking God. He kept me proud I did. There just aren't many like this out there. His poor voice crackled to my tears.... We go so far back like we are blood related, uncle and niece....and he fears losing me. He has a heart no neurologist has- zero. And should have every award under the moon. My life is only sane and grounded and livable thru Draz. I sure thank Jesus for him in every life he is part of. He changes lives and health for the good, never to give up. These are the moments I can hold onto hope still..... I am blessed.

Bless you all...

From my journey to yours!

Heather/Hetty Siebens 

https://www.linkedin.com/hetty4christ
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    To God Be The Glory Honor Praise!








    8/17/15

    Pain Out of Control

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    I still try to be goofy me, no matter how much pain I am in.
    But this has been very outrageous. 

    Ever since I got here to FL it has all been on fire. My neck kills in pain, runs up to my head, my ears, my eyes.... and when there was brief relief-it was extreme body pain. Didn't ever seem to matter what medication I took-what infusion I got-it was never getting better. We are now on month #2- God only knows how many doctor appointments, how many horrific ER visits here in the south-wonderful Mayo Clinic-but day and night from mine in AZ. It somehow actually became humorous thru it all. But this just isn't ending. I will be up past 4 AM almost every night due to crazy pain making it unable to fall asleep- so language is a bit altered from that and short term memory. It is just so so frustrating. And everyone always wants to write it off as Fibromyalgia. Always. There is just more to it. Much more. It's fine to have "that" too.... but there is more to this when your brain has been resected three times. More has to be dug into. But Lord, we wouldn't want to go to far, now would we.??? Thank you Obama.... no matter how great your insurance is- how amazing your tests are- it still boils down to how much more do we have to do?? In 2002, 2003, 2004, 2005, 2006, 2007, 2008, 2009, 2010 even 2011 and 2012 were okay? They'd do everything from the moon and back. But things began to get a bit harder. Less in depth. And hard part is- this is the worst pain I've had ever. What test is this dear Lord?
    I try my best to remain positive. Active. Loving. In Love with my family and Jesus. But wow can I fall apart. It's just truth of the matter. I push myself so hard to see life from other people's shoes. My friend Alissa just went thru bone marrow transplant, another friend another drastic surgery for cancer-still in ICU months later.... my friend Ashley who has epilepsy who deals with daily stress with seizures- with her adorable young kiddos. And my friend Mary who has dealt with hard cards for several big illnesses, yet has it in her to look up so much info for me one late night. This is God.  And thank you Cathy for the 4 hour talk..... we sure were able to connect and vent such similarities!!! I am blessed in these ways- and hanging on... but wow- am I ever in pain.
    My husband and daughter have hearts beyond the moon. As if they are standing in Heaven with Jesus. Christian looked up info where a lot made sense. Perhaps it is the Gluten in food. We will try that. I just don't know if that is what is affecting these quick come on's with my neck, head, ears, face pain. It is so hard to talk it hurts so bad. But I do. I can't go without that. I press on. I love you Jefferey for driving me home last night cause I whimped out at your house finally- I just talked to much. I have a limit. You are blessed Alissa.
    I truly thank God for you all. You all always have so many kind words- uplifting for me. I know I don't say enough. It has just been so hard. I am trying. This blog is an amazing step. It is just very hard. Feels like my neck is broken. Funny thing is.... our new home- we live on Neck Rd. Now isn't that ironic. Does God get a kick out of these things, or what.
    I am sure praying people aren't feeling like this- that maybe for once my prayer to take on other's pain came true... cause it is a lot. I couldn't imagine worse right now. But I sure know it is out there- that is the scary part. I am always proven that. For those words- I am praying for you all. You will touch so many lives.
    All I can say is I try to stop crying and keep my head up... so to say.... and know I am not alone.... 
    So much love and prayers to you all... I am never far away.... text, call, skype, message.

    In His Love,

    Heather/Hetty Siebens

    Joshua 1:9
    "This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”

    Matthew 4:24
    News about Him spread far beyond the borders of Galilee so that the sick were soon coming to be healed from as far away as Syria. And whatever their illness and pain, or if they were possessed by demons, or were EPILEPTICS, or were paralyzed-he healed them all! NLT