AMAZING- BREAK THE RECORD DAY!!!

It is with a humble heart that I tell you that today is BREAK THE RECORD DAY!!!!

We went to Cleveland Clinic 6 weeks ago, and as of TODAY Jake has gone over 6 weeks without a seizure-breaking our previous record which was 1 day short of 6 weeks. His medication is working! We are well on our way to the 52 weeks that he needs to get his learner's permit - which in his view as a nearly 16-year old, is probably the most important thing ever.

Cannot begin to express how very thankful I am. Honestly, I can tell you that this is not my best literary work because I am just to darn elated to worry much about how it sounds. The happiness feels like it is pouring out of my fingers and the grin on my face like a Roman Candle on the Fourth of July!!! Lord help the souls I see today, I am giddy as a schoolgirl and will be intolerably happy ALL DAY.

I am eternally thankful that the Lord has kept His promise when He said He had plans for us,plans to prosper and not to harm us. I am thankful that He still loved us when I lost it there in the hospital room and said some choice words to Him. Forgiveness is a powerful entity. I am soooo thankful to those who have prayed for us- complete strangers who lifted Jake up to Our Father in prayer, asking for healing. Thankful for the man, whose name I don't even know, who told his Rosary Group that he was praying for a total healing for Jake-his prayers are being answered. Thankful for those people who thought of us, sent us notes, gave us hope and something to believe in when it didn't seem like there was much to be thankful for.

I am thankful that He has seen fit to allow us to start back to a normal life again- a life without the fear that totally without warning, Jake will plummet to the floor and start seizing. We have lived with almost 2 years of unpredictable seizures, having the confidence that he can make it more than half an hour without us checking on him has been so liberating for everyone in my household. I cannot express the joy and hope that come along with seeing him thrive and actively work on getting his life back to a NORMAL teenager's life.

In celebration, we are headed to the Golden Corrall for dinner- for those of you NOT hosting teenaged boys in your house, it is an all you can eat buffett with tons of good food - and lots of desserts that I just don't keep here in the house- so Jake will be in Heaven.

It was that nagging voice in the back of my head, which is the Holy Spirit at work, which prompted me to take him to Cleveland, spending money we didn't have to get there. And as usual, the Holy Spirit provided understanding of the situation and a clarity that I didn't posess.

I am so extraordinarily blessed to have Jake as my son. His gentle spirit and willingness to help just astounds me. Sure he has normal teenaged moments, but overall, he is just a joy.

He has decided that he would like to go back to High school now, a big shift in plans as we have been preparing him to take his GED in a couple of months. He wants to play football- The Replacements, The Blind Side and about a dozen other football movies have occupied his attention of late- and at 6'3" 260# it seems like a great outlet for him.

However this whole epilepsy situation plays out long-term, I for one am thankful that for today, we are seizure free for 6 weeks! Thank you, Lord from that place in my heart that You know is true.

Backhoe and Lime 6 years later

September 17th is Loner Exodus Day.

I still have nightmares at times about the severity of the situation. They aren't as vivid anymore, and I feel somehow detached - but the faces and the emotions are still very much there. I cannot understand how someone I loved, completely lost his mind, hit Josh, hit me and then started sleeping openly with one of my friends, couldn't wait to divorce me, and then planned to shoot us one by one and bury us with a new water treatment system that he was going to install so that no one else could have us. (I still don't know if that was because he thought there was another man in my life or not, I haven't called to ask him)

The water pipes and bags of lime were there, stacked in a big pile by the treeline - and the backhoe had been rented. And the gun- well I know that his father's rifle was just inside the attic door and was easily accessible. I'd seen it before.

We have survived 6 years after the threat. Babies born that summer are in first grade now- that is a LOT of time.

Can you even believe it? Every day, women in the United States die as a result of domestic violence- killed by someone they think they love. Amazing, tragic, and insane.

And for some unknown reason, we were spared.

I can scarcely verbalize my deep thanks that in the moment where my human intuition failed me, I looked to the Heavens and He heard me. Not only did I have the inkling, but I had 2 phone calls which told me to go. Right judgement and wisdom compliments of the Holy Spirit because the Stacey spirit sure as heck didn't know what to do.

I was able to protect my children- first by having them brought to the Principal's office and then having them picked up by my parents - and later transported to Georgia with me. All of this completely by divine providence, because when I read my posts from the days before, I am still wavering about whether he was dangerous. I am still unable to believe that this horror is actually a reality. And sometimes when I look back, it is as though it was someone else who lived through this, and I am just retelling the story.

We had the support of amazing friends, the Indianos, and my parents who showed up to help pack our whole house in less than 48 hours - then showed up again as we moved our things from storage to the house we have now. I remember that it was like Christmas when we saw our things again after 6 months.

Georgia has indeed been an adventure. I still recall that it took 6 months before we stopped having regular nightmares about him trying to kill us- and in part, I think that ongoing trauma and fear in my mind was part of the demise of my relationship with Justin, but that is another posts all together. Despite a LOT of counseling, it is so hard for me to trust someone after that trust is broken. It is something I am working on, but I am not there yet.

In the story of our exodus, Justin is the hero. He unselfishly took us in- three kids and 2 dogs and 30 days of wages to my name. He just said "yes" when the time came and for that I will forever hold a special place in my heart for him.

I think that he is also the reason why my heart is still open to loving someone - why there isn't a fear of another person - because during this time where bitterness tried to plant seeds in my heart, he helped me be open to love - even if it didn't turn out like we planned. He kept reassuring me that I was in fact entitled to have someone love me back. I think we belong to the mutual admiration society - because there are aspects of each of us which have changed forever as a result of our time together. And leaving an indelible mark is admirable.

In six years, there has been a lot of loss- I really miss living in Indiana with all of my family.

Since the day we moved we have lost my Dad, the lake house, another marriage, and a couple of dogs. There are times where I have felt everything was restored to us - and others where I feel like our life was stolen from us. Either way, we are still here and not "eating worms" as Josh says- so it is a pretty good day!

But I have to believe there is a reason why I survived this - why the kids had to live through domestic abuse when all they really wanted was a family complete with a Godly father - why we survived in spite of the odds that we should not.

So I stand, today, on the precipice- going into a retreat weekend which is focused on the Holy Spirit's influence on our lives - and I hope that as a result of this weekend, I'll be able to determine where exactly the Good Lord wants me to spend my energy - and how this experience can help others hope and trust in Him.

He is the reason I am still here - that Josh is writing music, that Jerra is learning about love, that Jake's attitude is an inspiration to others. And it is for His Glory that I will remember this day, every year as long as I live as a testimony to His Love.

Epilepsy and August 30th

That is the day we start our journey toward curing this epilepsy.  Cleveland Clinic set the appointment yesterday for brain mapping, a PET scan, neuropsychological testing, and a video EEG which will induce seizures and carefully map where they originate from.  Most of me is very excited about the possibilities, I have the disadvantage of having gone through this once before. There is a part of me which is really scared for selfish reasons.

When Jake was 18 months old, he started having seizures.  He would get this look of terror on his face, then turning blue, drop to the floor and stop breathing.  Sometimes he would start breathing again on his own, sometimes I would have to start rescue breathing after 3 minutes.

 The first couple of times I called the paramedics.  By the time they got to the scene 10 minutes after the seizure had started, he was sleepy but his vital signs were good.  I remember after a particularly long seizure where he planted his little face into my hardwood floors that I took him into the ER myself, flanked by Jerra and Josh.  The ER physician looked me straight in the face and said that maybe I was just overreacting and that he didn't look like a child who had seizures. ( apparently, those children have a big red "I have seizures sign on their foreheads" which we were lacking). I felt dejected and silly- but at the same time angry.

Then began a year and a half of trying to take time off from the job that was paying all of the bills to go down to Riley and get testing done and see the Neurologists. I cannot figure out, short of divine providence, how I was able to afford all those trips on the meager salary I was earning as a public health nurse.  I think I have blocked out the number of sedated tests that were done after an IV was started and we had endured his pitiful cries for us to stop.  It was horrific.

A miracle happened after one of the dozen CT Scans of his head: a radiologist stopped me in the hallway and said that after we got the seizures under control, we should see an ENT  get his nasal polyps removed. 

It was another 6 months before Dr Berner, who I had worked with in the ER, looked at Jake's nose.  Pardon the language, but "Holy shit" was his first response to what he saw.  There was a huge mass of tissue in the left sinuses.  He sent us for a CT of the sinuses and said he'd call me on Tuesday.  Late in the day, in the middle of our immunization clinic, he called, saying that he had just gotten off the phone with the neurosurgeon and that we would be sending Jake to surgery to have the tissue put back in place and have the hole repaired.   My work-partner made me sit down as I repeated the words.

I struggled with whether to even call his dad, since he hadn't seen him in over a year.  My father's advice to be Christlike in my decision overtook my anger and I called him, bringing him up to speed.  His father and his new wife accompanied us on the day of surgery. He has been diligent in seeing his son ever since then.

As it was explained to me later, there was a part of the brain which had formed outside the protection of the normal cavity.  Should Jake get hit in the nose, this mass would open, and he would lose consciousness and die.  For the following weeks as we got ready and donated blood  I was scared to death that something would happen to him.  I can only say that his Guardian Angel was very tired trying to keep him safe.

The worst part, and the part I hate to go through again was the waiting.  My folks kept the other two kids, and my friend Skjeie sat with me throughout the surgery.  It cannot have been an easy task and my fear came in waves and I counted the minutes that he was in surgery.  It lasted more than 6 hours.  That is a long time to sit with a mother who is a little panicked about the state of her child.  Skjeie will always hold a special place in my heart for the kindness he showed me that day.

In the days that followed there was pain that I couldn't explain to him, swelling all over his head and face and the stares of everyone who passed us as the 56 stitches looked like a black tiara across his head.

Can I just say that I would probably feel better about this if it was me, instead of him?  I remember thinking about the fact that God gave up His son- that He understood my pain and my fear  - even though my scenerio paled in comparison to that of the Crucifixion.

We went for 8 years without seizures until one night, about 3 months before we left Indiana, Jake had another seizure and it started all over again.  He was 11 - so for 3 years a single medication taken daily eradicated his seizures. We think it was all the growth hormones which triggered the seizures and made the medication ineffective.  He has put on close to 100 pounds and almost 9 inches in the past year.

Then last August, he started having them without provocation, when he was studying, when he was walking in the woods, swimming, waiting for icecream at the restaurant,cleaning his room,  while riding in the car, at a funeral just sitting, and even playing cards.  There has been no rhyme or reason.  I know that God only gives me what I can handle, but the unpredictable nature of these made me feel entirely powerless.   It has been the most awful experience. Jake is under constant supervision and is subjected to Jerra and I checking in with him all the time.  He cannot get his driver's license, he cannot just head off to the movies, he cannot go for a bike ride. I had resigned myself to staying single the rest of my life as someone would need to live with Jake.  It is a tough existance for him. He takes medication every 4 hours during the day to maintain high blood levels, but on the two occasions that his meds were a couple of hours late, he had a breakthrough seizure. 

I was worried about going through this alone.  I think for some reason I believed that I needed someone to love and comfort me through this.  I was reminded this morning that while having someone with broad shoulders would be great, it is a want and not a need.  The real truth is that the Holy Spirit will bring me comfort, my friends will be there for me, my family will stand shoulder to shoulder with me as we wait upon the Lord to heal Jake.

God has blessed him with a sturdy body - which he has needed since the seizures cause all of his muscles to contract and leave him exhausted.  He will be healthy before the surgery and there is the great possibility that he will be totally seizure free after the surgery.  How could I say no to hope?