I knew that we would get here some day.
Deep
Deep
Deep
down inside... in the deepest parts of me.
I just knew it. Or at least I hoped for it.
I held on to hope even when hope wasn't holding on to me.
At times when the reality didn't look good, when things were not getting better, when the suffering was too much to bear.....I held on to HOPE.
When our days, turned into years and were clouded by suffering and the story of that tragic day lingered like a bad dream... it was difficult to be bright about the future.
(Read Lilia's head injury story. http://www.drhaneca.com/2011/01/never-ever-give-up-part-1.html)
I suffered anxiety nightly, waking... swearing in the middle of the night from the stress of watching my girl suffer. (most of you who know me, know that I do not swear)
Some of my funny friends just encouraged me to just start swearing during the day to deal with the stress.
I read constantly... searching out answers to help Lilia's body heal. We protected her from her environment, controlled what she ate, modified every aspect of her life to prevent this suffering that she had become so accustomed too. We took her for testing and more testing continually looking for ways to support this healing process in her body. We modified our lifestyle so that her seizures would not get triggered. Sometimes we were successful and sometimes we were not. We addressed everything we could in the NATURAL. What she ate, what supplements she took, avoiding triggers and providing the most loving environment we could.
We made sacrifices as a family. We were not able to "run" like we used to. We had to turn down birthday parties that were in the mountains or that were far away. She was triggered by motion. We were unable to go to the mall or church because of the lights and perfumes that people were wearing. All of these things triggering her episodes. It was so sad... to drive home from church and have her have a seizures in the car. Talk about a killjoy!
So we just didn't go many places.
In January 2011, Lilia went back to school as she had been home schooled for 6 months. We started to feel more "normal". I even wrote a post about it titled, The Benefit of Normal. http://www.drhaneca.com/2011/05/cup-half-full.html
She started making big strides. She could go to the park and not get sick, she could ride in the car for more than an hour without getting sick. We saw little and big changes. And we were grateful. She still had seizures but they were fewer and far between but she wasn't healed 100% at this point. We still had to protect her environment and her anti-seizure medication had it's side effects. Her mood was crabby and unstable. It was like a little piece of my girl was missing under the halo of the anti-seizure medication.
In October, I wrote a post about how Lilia was thriving... and she really was. She was back to school. Now in 3rd grade we were seeing that our girl was coming back. Her seizures were even less and less. More normal days were presenting themselves and we were so excited!
However, when she would have a seizure, now it was more emotionally draining then when she had them all the time. We felt like she was making big strides and every time she had a seizure it felt like the rug was pulled out from under me. On these days, she was so wrung out, her body and mind would be fatigued. The very life was drained out of her on these days. And drained out of her mom and dad that had to watch her suffer. Nick and I would just cry together... holding each other... silently wondering if this would be the fate of our little girl??? These thoughts tried to plague us. They tried to take over. We rarely spoke of these fears to each other. The fear of the future. It was too much to deal with the present. So we just cried.
Back in the summer Lilia had only a one seizure the entire summer. We let her sleep in every morning. We let her rest and play and kept her stress levels low.
And though her candle burned a little dull, we had hope that someday her candle would brightly shine.
In the summer, I was brave enough to take her on a plane to go to a Mother Daughter Brave Girl Camp in Idaho. It truly was one of the most wonderful experiences of our lives as mother and daughter. It is a Life and Art retreat hosted by two amazing people; Melody Ross and Kathy Wilkins. http://bravegirlsclub.com/
Melody Ross and I have a kindred friendship as 2 women that have dealt with head injuries in those we loved. Melody has been an amazing support to me. I would call her crying in these days when the rug was pulled out from under me. She told me, "Two steps forward, one step back. She is healing. These things take time." She hoped with me. She praised me as a mom who worked hard to protect my girl. She is a dear, sweet friend whom I am very thankful for. And seeing her loved one recovered helped me to believe that healing was possible.
I wanted to share one of the art projects that Lilia and I did while we were at BraveGirlsCamp.
We made TRUTH ROCKS.
Lilia had found several special rocks on the way to the beach and collected them for this project.
She painted them ever so beautifully and then was instructed by Melody Ross to read the statements of this piece of paper that were hundreds of different truths.
She was told to "Listen to your TRUTH TELLER. And pick the statements that speak to your heart."
Now remember at this point, as Lilia's mom, I am thinking she is doing SOOOO much better. Hardly any seizures and back to school and of course we still have to make sure she gets her rest. Bed time is 8 o'clock sharp! We still have to protect her environment, but she is STILL taking her medication which we were expecting she would have to take for a minimum of 2 years. I would still wake up in a panic, not swearing but asking out loud. "Did Lilia take her medication!?" I was doing better, less anxious, but I still lived in constant state of alarm about the safety of my girl.
Back to the Truth Rocks.
Lilia read quietly to herself all the statements on that sheet of paper.
I said, "Now Lilia. Who is YOUR truth teller? She exclaimed, "GOD."
She then said "Mom, can you help me cut this one out?" It was in the middle of the page.
I said, "Sure."
And these are the words that Lilia's TRUTH TELLER told her that day...
"YOU WILL GET THROUGH THIS."
My eyes welled up and I hugged Lilia and I was so thankful for those hopeful words and to hear a piece of my daughter's heart that I hadn't heard before.
Because you see,
to my daughter and her TRUTH TELLER,
she wasn't through it yet.
And as fate would hold, some of her hardest days were still ahead.
But these words helped me to hold on to hope when the darkness would come again.
Lilia was finally able to go back to school once again. This was in the fall. And we finally made it back to church.
My kids wanted to sit with us in the BIG church and listen to the pastor preach his sermon instead of going to the children's class.
One day in October, Pastor J.R., at the end of a Sunday service, had mentioned that anyone who needs healing and prayer were invited to healing rooms on Tuesday night.
On the way home that day, my sweet 8 year old girl, from the back seat of our car asked if we could take her to the healing rooms at the church.
Of course, we said yes.
So the next tuesday....
on the way to the church that night I had asked Lilia how "healed" she thought she was?
She answered 70%.
This is 2 years and 4 months after her head injury.
So that Tuesday my whole little family, Lilia's daddy, Lilia's two brothers, Lilia's mom went with her to the healing rooms. We got there and went into the sanctuary. It was dimmly lit and quiet. People were singing and worshiping. There was a sense of peace in the room.
We sat... five in a row... in a mostly empty church... and we RESTED in His presence.
We sat there exhausted.
I cried.
We held hands in a chain of 5.
Our hands grasped each other tightly.
We exhaled for the first time in what seemed like forever.
Our bodies, our minds, our spirits were fragile and exhausted from fighting this fight for 2 years and counting.
After a while...
we were called out to another room.
These 2 people, whom we've never met, invited us to sit in the middle of the room. Lilia sat on my lap, her daddy standing above us with his hand on Lilia's head. Her two brothers on the side of us were antsy as can be, but stretching their little hands toward Lilia. Pleading for healing for their sweet sister who they had seen suffer so.
They started to pray for our little girl...
They prayed for healing for her.
They prayed for strength for our family to conitnue to endure.
They stood in th gap for us and lifted us up in prayer.
Then one of them spoke about what Llilia's name meant.
It means a shining light.
And he prayed that her light would shine brightly...
They asked for Gods's blessing and to give the boys back the time they had lost from their parents throughout this time. (they loved that!) They encouraged us and said that we will endure this.
We drove home... hopeful of the day when this chapter of our little girl's life will be over.
In November, December and January Lilia started to slip again. She once again had become so fatigued that she could not get out of bed. She stoppped being able to go to school. She missed three months and all the while was even having MORE seizures. "What is happening!!!?"
I was so confused. We were doing everything right.
I started to notice that everytime she took her medication, she would get stomach aches.
She asked me at one point if she could stop her medication.
The doctor thought we should increase the medication, but when we did she got worse.
She started having confusion and was unable to think straight.
We felt helpless as we watched our child's light fade once again.
Nick and I were beside ourselves.
What had happened to our girl who was THRIVING in October?
Where had she gone?
What about the prayers of her family? What about the healing rooms?
It was at this point that I took her back to Children's Hospital and they recommend that she be put on more anti-seizure medication or a different one.
That did not sit right with me.
I saw that when she took her medication she got worse.
A medication that had been a life saver was now knocking the life right out of her.
I saw this in the morning especially.
She would wake up happy.
Her sweet spirit would greet us in the morning.
And then, she would take her medication.
And within 30 minutes she would be fatigued and crabby and her sweet, sweet self was no longer.
After meeting with the Neurologist, we decided that we would wean Lilia down off her medication so that she could have an overnight EEG study to quantify how many seizures she was having and which part of the brain they were coming from.
She had a 24 hour EEG study at Children's hopsital on Jan. 31.
They provoked her with flashing lights and hyperventilation.
It was hard to see her in the hopsital and I was scared of what we were to find out.
I did not sleep at all that night.
We got the results the next morning.
THE RESULTS SHOCKED ME!!!!!!!!
She had no seizures and better yet no seizure potential!
She was told to stay off the meds and see how she has does!
Lilia's has now been off the anti-seizure medication for 8weeks, and NO SEIZURES!
She is doing GREAT!!! She is back to school and doing awesome!
She had a brain test done at Children's Hospital and was told that she has completely normal to above average brain function and no residuals from her concussion.
HER BRAIN HEALED!!!!!!!!!!!!!!!
We got in the car after this 4 hour test and I told Lilia the results of the test and she exclaimed from the back seat,
"HALLELUJAH!"
So what happened to Lilia is that her brain NO LONGER needed the medication that used to save her.
It had become toxic to her.
She was having terrible side effects and it was no longer needed.
We were told that she would need to be ON this medication for a minimum of 2 years.
It was 1 year and 7 months.
Our bodies are amazing, created by an AMAZING TRUTH TELLER!!!!!!
The message of this story is...
always remain hopeful,
ask for healing,
reach out for help,
do what you can,
remove offenders,
continually pray,
and NEVER
EVER
EVER
GIVE
UP!
Happy ENDINGS do exist!
I want to extend a note of thankfulness to all of you who have offered compassion and kindness to Lilia, myself and our family as we have gone through this.
Your words and prayers have helped the ray of hope shine brighter in our hearts.
And I hope if you need to be encouraged in your life,
that today you realize that
you. will. get. through. this. too.
(whatever THIS may be.)
Be Brave. Be Strong.
Please share Lilia's story with people who need HOPE and HEALING.
Lilia wanted me to share this story with you.
A very happy Haneca family,
Dr. Haneca and Nick
(Dr. Haneca is doing a happy dance!!!)
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